what happens when your vitamin d levels are low

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Vitamin D Deficiency ?
======================

by pains47, Jul 17, 2006 12:00AMTags: vitamin, deficiency, Pain,
chronic, Vitamin D Deficiency Can a Vitamin D deficiency cause this
much pain? Went to the doc for muscle pain & weaknessWeakness with
increasing shooting pains to the point of affecting everyday
functioning.
Blood test came back low in Vitamin D. Result was 11, (should be 26 to
55). Other results OK. Cervical Spine & lower back MRI
OK. Treatment is 50,000 units of D per week for 4 weeks and thereafter
once a month. Been on it for 4 months. Feel at times like I was in
accident.Have researched on the net, and still find it difficult to
believe that this can cause this much suffering. Anyone familiar with
anything like this?
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Member Comments (178) 

by Kalio1, Jul 17, 2006 12:00AMTo: pains47 Vitamin D deficiency is
caused by something,some underlying disease process so I'd ask my
doctor WHY I was vitamin D deficient. It can be cause by numerous
conditions. With it that low, I'd want to find out what was causing
it. Google "what causes vitamin D deficiency?" and you will come up
with many reasons why this can happen the go to your doctor and ask
about those conditions. I'd also get a referral from the doctor to a
specialist ASAP. An endochronologist might be good.good luck 

 by Kalio1, Jul 18, 2006 12:00AMTo: pains47 True enough that vitamin D
 deficiency has been in the news but that isn't any excuse, doctors
 seem to give us cursory care and don't seem to try very hard to get to
 the bottom of things sadDepression to say. the system is a mess that
 much is for sure. I was partially and under diagnosed and I know the
 feeling. One thing I did was learn all about blood testing because
 they say "your fine, just a vitamin deficiency" and blow off the
 symptoms and your quality of life is in the dirt. It's frustrating and
 can be dangerous. I got to the point where I went to the doctor and
 ASKED for specific tests and that worked. A CBC can included a lot or
 not very much depending on what they check off. It's almost as if they
 don't care to search for the answers. Hopefully with persistence you
 will get to the bottom of it. I know rickets ( don't laugh it
 happens!)can be a result of lack of vitamin D absorption and that is
 said to hurt quite a bit. Definately have your bones checked for
 hypocalcemia and various other conditions involving the bones. Could
 be a malabsorption issue, I am no doctor but some of the more
 dangerous things should be ruled out that are clearly associated with
 this condition. I'd have my bones checked, kidneys checked and a good
 GI evaluation if you can't come up with anything with the
 endocronologist. Good luck with finding answers. Don't give up!
 

by Kalio1, Jul 18, 2006 12:00AM If you go to the doctor and they do
not give you the reason for something like vitamin D deficiecy, you
might not realize that that only happens if you have an underlying
disease process going on. You don't just develop a vitamin D
deficiency in isolation, it happens for a reason. It is a good way to
show your doctor his job is not over, he needs to go deeper into why
this is occuring and not just load her up with vitamin D and send her
on her way. Taking huge amounts of vitamin D and ignoring what is
causing it is not good medicine. For that reason she/he needs to see
that there IS a reason and the easiest way is to google it or go to
the ibrary and read up on it.

Sorry but if you have developed something like a vitamin D deficiency
your best shot is to do research yourself to find out why, EVERYONE is
utimatey in charge of their OWN medica care in this world. This is not
a symptom she is googling it is a SPECIFIC condition she has already
been diagnosed with.
I guess you'd prefer she just not know what is really wrong with her
and think it is just a vitamin deficiency? That makes no sense and she
still does't know WHY this occured even after going to the doctor and
being "diagnosed" she has NOT been diagnosed, she is only partially
diagnosed at this point. 

by pains47, Jul 18, 2006 12:00AM Thanks so much for your responses.
Kalio1 - I agree totally that I have only a partialPartial (focal)
seizure
Partial thromboplastin time (ptt)
Thyroid gland removal diagnosis, and that this is most likely a
symptom of something else. It appeared that my doctor was going to
take an agressive approach to figure out what was happening to me when
she ordered such extensive blood work, but she is now resolved to
accept Vitamin D deficiency as the end all, be all. There's been a lot
of press lately on the topic of decreased levels of D in womenWomen's
way. Most of what I've read attributes this to sunscreen and adults no
longer drinking enriched milkBreast milk
Breast milk jaundice
Lactose intolerance
Nipple discharge - abnormal, and listed symptoms include general
muscle and joint pain. I guess my doctor is reading the same thing.
Ok, I can understand where this can create mild symptoms of
discomfort. In fact, some articles state that most women won't even
know that are deficient. But I am saying that sometimes it takes all I
have to walk my dog or get up the stairs, and the shooting, stabbing
pains come out of nowhere. I am frustrated and depressed about how
this is affecting my life. I was thinking of seeing a neurologist, but
maybe an endocronologist is a better next step. Won't quit until I
have answers that make sense! 

by caregiver222, Jul 18, 2006 12:00AM Have you every been prescribed
Levoquin or a cyclosporin anti-biotic? 

by pains47, Jul 19, 2006 12:00AM Caregiver222 - Have not taken
Levoquin or cyclosporin. Why do you ask?

Kalio1 - Thanks again! 

by fitrulz, Jul 31, 2007 10:21AMTo: pains47 I have been dealing with a
Vitamin D deficiency for a few years. I know what you are going
through. It took me 6 months to realize I needed to see an
endocronologist. I had been to different doctors and in the emergency
room so many times within that 6 month period. I was given blood tests
over and over and everyone told me the samething. That I was depressed
and needed to get help.
I have suffered from anxiety(which is a form of depression) in past.
So I knew it wasn't that. I finally went to an endocronologist and had
more blood work done. Only this time they found that I had NO vitamin
D in my system. They started me on Vitamin D and I have been doing
great ever since. I don't take it in the summer. Every Fall I go have
my levels checked. If they are low I take a Vitmain D. What a
difference it made in my life. I honestly thought I was dying. I
couldn't function. I couldn't even fold laundry. My muscles, bones and
joints hurt. I had problems breathing,walking,thinking,etc....
For me, this started after the birth of my daughter. I was working out
hard every single day. I read in an article that people who workout
alot tend to have lower Vitamin D levels.
So I don't know if it has something to do with my last pregnancy or
working out.

 

by snowhitetiger, Sep 04, 2007 11:10AMTo: pains47 I understand the
pain you are going through. I was just diagnosed with vitamin D
deficiency in May 2007. I've always had tight muscles since I was a
child. I knew something was wrong in 1988. In 2002 my symptoms got
progressively worse. All I got from doctors was I don't know. I was
diagnosed with Fibromyalgia even with having an ANA of 1 (it's a test
for autoimmune diseases like Lupus) My headache is unbearable at
times. I've had a 24/7 headache for over 15 years. I have blurred
vision and double vision. I have a problem with my cervical spine
(that's the only MRI that was done). The insurance companies refuse
tests all the time. I have symptoms of an autoimmune disease and the
doctors are unable or unwilling to tell me if the vitamin D deficiency
is a symptom of another disease. I even have symptoms of Lyme Disease
yet I consitantly come up negative. I agree with Kalio1. I think that
any vitamin deficiency is a symptom of an underlying cause. I'm
frustrated with the doctors, they don't seem to care to look hard
enough so I'm sure you are frustrated too. I've had to resort to
googling and that hasn't seemed to help. I've been on so many websites
and all I'm able to do is look for a specific disease. I've found it
difficult to be able to list my symptoms so I could get a list of
diseases that I may have so I can go back to the doctor to request it
to be ruled out. After resorting to watching a tv show called Mystery
Diagnosis on the Discovery Health Channel I've learned that all
bacteria and all parasites hide. I've learned that parasites can cause
all sorts of symptoms and make you become malnourished because they
consume all the nutrients from your food that you eat. If you have
yourself tested for parasites don't be surprised if it comes back
negative. Same with Lyme Disease (the bacteria hides). All I can say
is be persistant and look for help anywhere you can get it. X-rays,
MRI's etc. do not always show anything abnormal. When I was a child, I
spent 6 years in agonizing pain and cold sweats and a body tempurature
way below normal. I spent years getting all sorts of tests and
probing.All the doctors did was tell me that it was in my head and
gave me prescription pain medications. Every test came back normal and
the tests could not find my appendix, therefore I was told I did not
have an appendix. So, by the time I got into high school I was so bad
off that my parents insisted that they remove my appendix (of course
the doctor said I didn't have one because of the tests), but my
parents insisted and low and behold I had a rare case of appendicitis.
My appendix was loaded with stones and I almost died from the surgery
and nearly slipped into a coma. So good luck and all you can do is be
your own adocated. 

by snowhitetiger, Sep 04, 2007 11:49AMTo: pains47 I just went to
mayoclinic.com and Celiac Disease is listed as having many symptoms
and can cause vitamin deficiencies. You might want to get tested for
Celiac Disease as well as getting checked out for parasites. 

by Anthony L, Sep 12, 2007 02:38PMTo: Kalio The only cause for Vitamin
D deficiency is not enough quality sunlight. Vitamin D is not a
vitamin. It is a precursor hormone necessary for the production of
important hormones like calcitriol, which helps control rampant cell
proliferation.

It is estimated that just a half hour of peak sunshine can t produce
trandermal concentrations of the hormone as high as 20,000 iu. When
your body has synthesized enough of the substance via this route it
will close the door to any further amounts.

Now, if you ingest capsules and have and are deficient in other
vitamin co-factors, and are enzyme deficient with malabsorption
complications, yes, oral ingestion could be comprimized. Just get some
sun, or HELIOTHERAPY! 

 by PlateletGal, Sep 12, 2007 08:00PMTo: snowhitetiger
 I have a low vitamin D and a high vitamin D 1,25 hydroxy --- due to
 vitamin D dysregulation (I have CFS). I'm now on a research protocol
 (although the medications are not research meds) that is able to kill
 the bacteria in my tissues and due to cell wall deficiency. The name
 of the protocol is the Marshall Protocol if you would like to check it
 out via google.com
 

by kripto, Sep 14, 2007 12:22AMTo: pains47 First let me say I am so
glad I found this site and forum. I really thought I too was dying
until I just read you guys statements! I go through days of either a
really bad headache with blurred vison and concentration. I try so
hard to hold it together because I have children to take care of. It
seems like everyday it gets harder. The headaches are becomining
unbearable and there are many many sleepless nights. My mid back along
with my neck & spine hurts tremendously! Sometimes it feel as though
someone is givivg me a bear hug and it hurts aound my upper waist! I
went to the doctors and of course he took a few xrays and prescribed
naproxen for muscle pain, but it do not help when you know there is an
underlying condition that you know in your heart that is causing such
pain! Now when I go back I will definately ask him to refer me to an
edcronologist! Thanks so much and it is comforting to know that I
maynot be dying as I am feeling and there still may be help for me
afterall! 

by 2yung4this, Sep 14, 2007 03:16PMTo: pains47 & others I'm so glad I
found this site (& I hope someone will write back). I am so tired of
not feeling well. I cry about so often and it's not just depression. I
wish I had someone to talk to because I don't want to tell my husband
every time I hurt - he'll think "I married a defective woman."
I have had muscle & joint pain/tenderness (biggest symptom) for almost
21/2 years. I also am very tired & feel forgetful or spacey
sometimes.The writer/blogger who said the top of their waist hurt...
for me its more around my rib cage or chest - it feels like the flu
sometimes. I often run a low grade fever.
I've been diagnosed with fibromyalgia & recently with Hoshimoto's
disease (& am being treated with synthroid). I still felt (feel) like
#%@! So the Dr. did more tests & I am low in vitamin D (or however
that other blogger explained it). Now I'm gonna add "D" to my
supplement intake - I take so many already...
Have any of you all tried other alternative treatments? Massage
therapy, acupuncture etc?

 

by PlateletGal, Sep 14, 2007 03:56PMTo: 2yung4this
I've had massages, acupuncture treatments and probably everything else
you can think of ! I have CFS and am now being treated with the
Marshall Protocol. The MP recommends that I avoid foods and sunlight
until I'm done with their research protocol.

 

by kripto, Sep 15, 2007 02:21AMTo: 2yung4this Hi,

 When i said my upper waist, I meant my rib cage & my chest area as
 well as the sternum area. I have went several times to the emergency
 room because I thought it was a "Heart Attack!" But when the emergency
 room got sick of seeing me they told me that you can't be having a
 heart attack every other week! I also thought that I was pregnant
 again because the breast area is always tender and painful! But being
 39 I knew that couldn't be it. But I have had (5) Epidurals with my
 pregnancy and my mom always told me that they tend to cause many
 midback(around the ribcage) and chest pains as you age. To all the
 ladies who are experiencing this---Have you had any epidurals in the
 past and do you think that this might have an effect on our backs and
 spine which is causing so much pain in these areas? My pains mimics
 the beginning stages of labor. That pain right under the breasts and
 the back which lets you know that labor is starting slowly and
 dilitatation of the cervix is beginning! It is so depressing and
 sometimes my focus is way off because I can't think past my pain!
 

by Kiwado, Sep 17, 2007 09:04PMTo: kripto Geesh, I have been trying to
figure out why I have this pain, upper abdominal pain, been to the Er
twice, xrays, endoscopy, gastric emptying test, ultrasound and lots of
blood work, and basically have been told its all in my head! But now,
maybe I have a lead. I had a vitamin d test done back in March and it
was lower than 11, the doc told me thats really low and to take 5000 a
day of the stuff, well of course i havent been. Should I change my
appt with the internal medicine doc. to an appt with an
endocrinologist? I love this site, thanks for the lead on my
excruciating pain. 

by inpainandworried, Sep 21, 2007 04:27PMTo: caregiver 222 Caregiver
222- I have been prescribed both levoquin and cyclosporin before. What
does this do?
I have also taken many different steroids from time to time.
Deltazone-when trying to get pregnant, Steroid injections when bad
allergic reactions, and flonase for 2 years now. I have all of the
same problems that I am reading about. I feel like my muscles are
giving out on me. I have had to quit exercise because of bursitis in
my hip and a problem with a rotator cuff. I am only 53 and don't want
to feel like this . 

by amanda1980, Sep 23, 2007 08:54AM COOL! vitamin D! check this
out... the only way your body can utilize vitamin D is through
sunlight. so, go outside, and without sunscreen . yes, if you are
worried about burning go out before 10am and after 3pm. Sunscreen
blocks out a certain spectrum of light that our bodies use, kind of
like a plant. i know this might sound crazy but it is grounded in good
sense. look at the statistics of skin cancer before and after the
sunscreen craze. 

by Starcase, Sep 29, 2007 04:29PMTo: 2yung4this hi there. have you
ever been checked out for pleurisy? or pleuritis it is also known as?
The pleura is the lining around the lungs and this gets inflamed for
some reason and causes incredible pain.
This started with me at 14 evidently and a doctor told my parents to
give me 4 Advil a day for it.. that is all i remember about it.. and
now? I just know i have this incredible pain as you descibe again in
my chest like area up around the rib cage that alot of times can start
in the lower back and move towards the abdomen and yes it does feel a
bit like labor pain.. i am not sure if it is the pleurisy or not but i
know a friend who said she has it and she is having to take steroids
for hers and the pain is worse than kidney stones, ( which i have had)
and labor pain.. yes i have been in labor and oh yes i have had
spinals and epidurals in the past..several times but am not sure if
that is related or not.. nor am i sure if this is pleurisy but i think
you and I both need to probably ask our doctor. I am just not thrilled
at all about going on Hormone treatment myself because i have an array
of medical problems beside that pain and am now looking into this
possibility of Vitamin D.

Now i am wondering though to the rest of the forum.

I have been reading about Kidney Problems and it relating to Vitamin D
loss in the body.
I mean yes IF ANY OF US are having problems with low Vitamin D levels
i agree with one of the responders to a point .. there has to be an
underlying reason and to just down doses of Vitamin D is not the
answer because there lays the risk of us #1 overdose on Vitamin D
later on IF we really don't have a Vitamin D problem or #2 if there is
for example a Kidney problem as i have been trying to understand and
investigate, we all or some of use need to see a Doctor ASAP and find
answers and insist on answers or we could be in big trouble!

Now see i myself am having major bladder problems and urinary
problems. I don't know if any of you are.

I am on URISTAT all the time. And the bladder infections are few and
far between.
For myself i don't get a ton of sunlight but i do get outside and
Vitamin D synthesation occurs when the sun touches even just parts of
your skin for not very long periods of time.

 I think there is definitely a real problem if any of us are not
 synthesizing it naturally in the small minutes it takes naturally.....
 

by Starcase, Sep 29, 2007 04:32PMTo: KRIPTO OOPS I MEANT MY MESSAGE TO
GO TO KRIPTO I THINK? AND MAYBE it did pertain ALSO to 2yung also..
LOL SORRY! 

by kripto, Sep 30, 2007 01:48AMTo: Starcase Hello,

I watch this thread "EVERYDAY" to see how others with this condition
is progressing! It's funny you mentioned "Pleurisy"--The first time I
went to the ER room thinking this was a Heart Attack--They told me it
definately was not that but it could be Pleurisy! They ran several
tests and x-rays and gave me a diagnosis of "Myofascial Strain!" He
explained that the cushions in between my spine that suppose to
cushion it from shock is extremely thin and is causing the pain around
the ribs and upper back that mimics a "Heart Attack!!" He referred me
to a Doctor that --of course--did not find anything but a case of
Slight Scoliosis which he said at my age-39- will cause pain but that
i had to live with the rest of my life!! That is a bunch of ------and
You are right we have to keep searching and pushing these doctors to
find answers to this condition because it is very painful &
depressing!
But i will never forget the look on that ER room doctors face when he
diagnosed me w/ the "Myofascial Starin"--I asked him is there
something that can be done to recushion the vertebre so that they will
not cause so much pain--He said "Very Little Can Be Done!!" In my
heart I "TRULY" believe it has something to do with the
"EPIDURALS"--because it feel like I am balled up on the operating room
table and the anesthesiologist is putting one in my back "EVERYDAY!!"
Its the pain around the midback that travels around the midsection and
to the top of my abdomen which makes me think this. I could be wrong
but I strongly think this is it!! But i will continue to investigate
and find out what is this disease we have! I must say since I start
drinking more milk, my headaches has been far and few!! I use to
suffer from them "EVERY" single day. It has been two weeks!! Yeah!!
So lack of vitamin D may have played a part in these headaches. Either
way I can now focus more on the ribcage Pain!! 

by kripto, Sep 30, 2007 02:17AMTo: Starcase Also I wish alot that i
was having a baby---because with a baby you know that the labor pain
is temporary but with this there is no baby and the pain lasts for
days and weeks! I wonder if this is hormonal also! Are we producing
too much or too less of a certain hormone! i am going to see my
gynecologist soon for Hormone therapy. If i get any new answers--I
will post to let you guys know!! I can only speak for myself but I "DO
NOT" want to be on pain medication all my life as that too will have
some kind of negative effect on your body also! I saw a special on
Dateline(I think it was) where a doctor in New York has been doing a
study on pain--back pain in particular--where he found that back pain
is in our minds and can be cured in our minds. He found out that in
the part of our brain where we process pain can be turned on and off
like a light switch. Once it is turned on it sends the message down
the spine and our spine acts accordingly! I don't know how true this
is but his patients have been free of mid & lower back pain for years
because they learned how to manipulate their brain to send painfree
messages to the spine and relieve their backpains. I think yoga and
other forms of things like acupuncture have been geared to reach the
spiritual being and relieve alot of stress which in turns relieve
pain! Has anyone tried these as a natural alternative instead of
taking medications? 

by jlr52629, Oct 09, 2007 11:06AMTo: ALL I am also Vitamin D deficient
and B12 deficient. It seems we all think there is an underlying cause,
but have any of us found one? I feel like I'm searching for something
that's not there. It's been a 1 1/2 years of pain, fatigue, and many
other things that doctors thought I was crazy! I've been on the
vitamin D 50,000 IU's 2 times weekly for two weeks now with 2 more
weeks to go and then 1,000 daily after that. I do B12 injections
monthly. It does seem to have helped. I was thinking of going to a
gastrointologist next....has anyone out there found an underlying
cause??? If so, please share so we know where to look next!! 

by PlateletGal, Oct 09, 2007 12:50PMTo: jlr52629
Can you please list all of your symptoms ?

 Thanks !
 

 by jlr52629, Oct 09, 2007 06:04PMTo: PlateletGal Hi, yes of course. It
 started with a stiff neck and upper back. The pain went to my muscles,
 joints, bones...I couldn't quite tell where it was. I just ached all
 over. So bad sometimes that it put me in tears. Mainly my arms, back
 (upper and lower) hips, knees and wrists. I have constant ringing in
 my ears, headaches, terrible fatigue. It feels like I have the flu
 mostly. Low-grade fevers, bloated, mood swings. My aunt had lupus and
 chrones disease, so I think everyone was looking for lupus signs. I do
 have anticardiolipin/antiphospholipid syndrome (I take an aspirin a
 day for that) and recently my ANA came back positive (was always
 negative), but the doctors at the Mayo clinic didn't think that
 mattered because it was only slightly elevated. I asked the nurse at
 the Mayo clinic why I would be B12 and Vitamin D deficient and she
 said that a lot of people of Vitamin D deficient. I'm waiting on the
 doctor's recommendation for the Mayo Clinic...should be getting that
 any day...I just went there in September. Was frustrated at the
 doctors here because we couldn't find anything and I felt I was
 missing out in life. I have two children, this happened after my
 second child was born, about 8 months after. Thanks for listening!
 

by PlateletGal, Oct 09, 2007 10:38PMTo: jlr52629
I have CFS and can tell you that your symptoms are very common in CFS
and/or lyme disease.

According to Dr. David Bell, up to 25% of CFS patients have a positive
ANA titer. The vitamin D deficiency is common in patients who have
CFS, autoimmune diseases and other conditions.

 Feel free to shoot me an e-mail. CFS is a complex illness and if you
 have CFS (which it really does sound like you do), you will need all
 of the resources and support you can get. Many physicians don't know
 how to treat this condition. I can give you some links.
 

 by Stacy01, Oct 13, 2007 01:12PMTo: pains47 I read your post and said
 to myself that this is exactly the same things that are going on with
 me. I have had the shooting pains in my ears, temples on top of my
 head, the back of my head, my arms, feet and numerous other places but
 the worst are in my temples, ears, back of my head and my feet. I also
 have terrible what started off to be what we thought was RLS but then
 it traveled to the rest of my body accompanied by muscle spasms,
 cramps, terrible stinging pain, my left shoulder is so swollen and
 sore the it is compressing on my ulnar nerve and making my left arm
 and hand and pinky and ring fingers numb. I have seen doctor after
 doctor and the only thing that has been found was a Vitimin D
 deficiency. I have been taking 50,000 units of vitamin D for 7 weeks
 and there has been no relief what so ever. I was referred to a pain
 specialist by my PMD and he asked me Thursday if I was just depresed
 and if I thought I should "see some one for it" I was very upset
 because he wouldn't listen to me (for the second appointment that I
 have had with him) and started to cry (I NEVER cry, let alone in front
 of anyone). I told him that I am frustrated because nobody seems to be
 listening to me and it seems like everyone just wants to jump over
 what my symptoms are and send me to someone else along with a new
 prescription for new medication. I am just so sick and tired of being
 in all of this pain that no matter what medicine I take (to date: Soma
 compound with codeine, darvocet, ultram, lyrica, zanaflex, morphine,
 ambien because even with all this medication I still can't sleep) I am
 currently taking Zanaflex, Morphine, Lyrica and the Ambien. I am so
 tired of taking medication that I gag every time I take it.
 I hope that someone on here finds a doctor that will help them and
 figure out what is wrong then maybe it will also be the end of this
 suffering for the rest of us.
 

by mschvusangel, Nov 08, 2007 07:43AMTo: ALL I have been searching the
net for days about Vitamin D deficiency, and finally came across this.
I have been suffering with lower back pain and pain in my knees for
about 8 years now and have had about 4 different MRI's done over the
years and have been told nothing was wrong. About 4 or 5 years ago I
started experiencing facial numbness(looks like I have had a stroke
when this happens, but only last 20 minutes -2 hours), and was later
diagnosed with focal seizures (never passed out or lost consciousness,
nor have I ever convulsed). Over the past 2-3 years I have gained
about 60 lbs and have been having all sorts of symptoms. Everybody
around me seems to think I am going crazy, and I am beginning to feel
that way!! I started with my primary care doctor about 2 years ago
with symptoms of extreme fatigue, I just don't feel like doing
anything, and I always feel bad. She ordered thyroid tests, which came
back normal and left it at that. I just kind of got frustrated and
left it alone for a while, but my symptoms have gotten much worse over
the past 6 months. My joints (lower back, mid back, neck, knees,
legs....) have been hurting extremely bad. It hurts sometimes to get
up from a chair or to climb stairs, and I never have any energy. I
have been aching really bad in my legs, my fingers have been going
numb as well as my right arm, and now my legs are doing it in my sleep
which is waking me up, I have difficulty sleeping, my memory has
gotten really bad, I have infrequent/missed periods, mood swings,
abnormal heart rhythm, and much more. I had a routine gynecology
appointment recently and decided to tell her about my symptoms, so she
did a few extra blood tests, and my CRP and Sed rate levels came back
elevated( which indicates unspecific system wide inflamation
(inflammation)) so she sent me to a rheumatologist. He did several
X-rays and told me I had osteoarthritis in my lower back and he
thought I may have Fibromyalgia, but he wanted to rule out Lupus and a
few other Autoimmune diseases, and also he wanted to do a vitamin D
test. Everything came back normal except for the Vitamin D test, which
was 16. I have not been told anything else other than the nurse
leaving me the message about the results and telling me she was
calling me in a prescription for 50,000 IU of Vitamin D to take
1x/week for the next 12 weeks and to follow up with my primary care
doctor. I didn't get instructions on whether to take the meds with or
without food, in the morning or at bedtime.

I have been reading so much in the past couple of days and I came
across this, and it is just wonderful to know that there are others
out there that have experienced some of the things I have. I know I
have said a lot, but I have had no one to talk to about this because
my whole family thinks I have been making up all of my pain and
problems. I don't know if all of the things that have happened over
the years are from a vitamin d deficiency but from what I have read it
seems to be likely. It just scares me that there is an underlying
problem because like so many of the others, I do get plenty of
sunshine, milk, dairy product, ect...., and the doctors are not
willing to dig to find out what the problem is. I have just been to so
many doctors, the ER (with chest pain and arm numbness)and had so many
symptoms/problems that it is good to finally know that there is
actually something there that is causing some of it and I'm not crazy
after all. I guess I forgot to mention that I am only 26 years old and
weigh 225 lbs, so that is where a lot of my problem is coming from in
getting anyone to listen to me. All I tend to get is "you are too
young to have all of these problems", or "you just need to lose some
weight and you will feel better". It's hard to lose weight when
something is wrong with you that prevents you from doing so!!!!

My mother works for the lab company that my results were sent to, and
she is the first one that called to tell me my results (all they know
there is if they are high or low, the dr. has to read them and tell
you how bad or good they are) . She actually cried and apologized to
me when I got the message from the doctor telling me that I had a
severe deficiency.

Thanks for all of you who have taken the time to read this!! Any
information or comments would be much appreciated. 

by jlr52629, Nov 09, 2007 08:43PMTo: mschvusangel Hi, I took Vitamin D
50,000 IU 2x's a week for four weeks and by the 3rd week, I felt
tremendously better. It was amazing...my aches and pains are pretty
much gone. The B12 injections help with the fatigue and I feel great,
that was low for me too. I still wonder about an underlying cause and
probably will see a GI doctor soon to see if there is an absorbtion
problem in the intestines. Have you heard of Spectracell Laboratories?
They test a lot of vitamins that no one else does. I haven't done it
yet, but I plan too. My rheumatologist told me of them.
www.spectracell.com 

by SufferingPain, Dec 08, 2007 03:34AMTo: Jlr52629 I have been
suffering from muscle and joint pains, with swelling of my hands and
feet since I was about 11years old (when I stated my menstrual cycle).
The pediatrician told my mom it was growing pains and my swollen feet
were because I was flat footed. The pains subsided (less flares ups)
when I was 17 and completely went away after the birth of my 1st
child. However, the widespread muscle and joint pains return when I
was 23 with the birth of my 2nd child and generally worsened day by
day, year by year after the birth of my 3rd child at age 30; all three
of my children were born without the use of drugs. Heck my labor pains
were nothing compared to the muscle and joint pains I was
experiencing. I suffered from very severe PMS until I had a
hysterectomy in 2000. After my hysterectomy my muscle and joint pains
subsided or went away for about 3 years. Then in 2003, I woke up one
morning with the worse pain in my neck. It felt like my head was too
heavy for my neck to hold up. I couldn’t turn my head right or left,
up or down without being in pain. Then everything stated hurting and
has continued until getting worse. I continue to have muscle and joint
pains and swelling of my hands and feet, on a regular basis since
2003. My primary doctor did a CBC, which indicated that I had elevated
RF, WBC, and Sed Rate, but everything else was within normal ranges.
She did chest x-ray for sarcoidosis, tested me for Lupus all test were
negative. She prescribed pain medication. In 2005 I started having
pain and ringing in both my ears. I was diagnosed with hearing loss
and I currently wear hearing aids. In 2005, the pain got so bad; I
returned to my primary care doctor she ran more blood tests – again
the RF, WBC and Sed Rate were high (much higher than before) but again
the ANA was within normal range – but because the RF was so high my
doctor referred me to a rheumatologist. This doctor diagnosed me with
Fibromyalgia and prescribed more pills. My current list of medications
include the following: I take naproxen and tramadol for pain (I only
take Darvocet or Percocet when the pain is very severe), Zanaflex,
Lexepro (ant-depressant), Ambien (because I have difficulty sleeping
or getting restful sleep). I tried to tell this rheumatologist that my
back and leg pain were getting worse but he just kept saying that my
pains were common with people suffering from Fibromyalgia. I told him
that the things I read about Fibromyalgia detail more with widespread
muscle aches, but I was experiencing both muscle and joint pains
particularly in both of my legs, my hips and lower back. He would
listen to me. Then I ended up in the ER I could barely walk both legs
were swollen twice their sides, I had shooting & stabbing pains going
down both my legs, hips hurt and my lower back was throbbing with pain
I couldn’t sit in a chair. I had an MRI done in the ER; the results of
the MRI showed that I have osteoarthritis in my hips and moderated to
severe lumbar spinal stenosis, mild spondylitis, pinched sciatica
nerve and degenerative facet and sacroiliac joints. The ER doctor
suggested I follow up with my rheumatologist. Now tell me why, would I
go back to the doctor that would not listen to me when told him I was
experiencing severe back and leg pains. I quickly got a referral from
my primary doctor to see an OrthoNeuro physician (orthopedic
neurosurgeon). I had a couple of epidural steroid injections and then
I had a nerve block done which relieved the lower back and my sciatic
leg pains for about 10 or 11 months. The ortho-neuro doctor also
diagnosed me with Ostero-Arthritis in both my knees, and shoulders. I
also made several trips to the ER with Chest pains and was finally
diagnosed with Tietze syndrome, which is an inflammation of the
costochondral cartilages of the upper front of the chest. The pain is
erratic, and sharp, I thought I was having a heart attack. This has
continued to be an ongoing problem of periodic chest pain that can
last from hours to weeks. It can cause difficulty sleeping and even
rolling over in bed is sometimes painful. Again, my blood testing
resulted in elevated rheumatoid factor and elevated Sed Rate. In
December 2006, I woke up one morning in the most tremendous pain in my
right arm and shoulder. I could not raise my arm even to brush my
teeth (it hurt with and without movement) I really felt like
amputating my own arm, that’s how bad the pain was. My ortho-neuro
doctor diagnosed synovitis, bursitis bone spur and shoulder
impingement syndrome. Treatment included anti-inflammatory medication
and cortisone steroids injections and finally I had arthroscopic
surgery on my shoulder followed by 10 weeks of physical therapy. In
July 2007, I experienced a similar incident with my left foot. I woke
up one morning and my foot hurt when I applied pressure my ankle was
so swollen I could wear my shoe. The doctor said I had tenderness and
swelling in the area of Achilles tendon. X-ray revealed bone spurs.
Treatment included splint and heel insert along with pain and
anti-inflammatory medications and steroid injection. In August 2007, I
eventually had to have surgery to removal the bone spurs.
I saw my primary doctor again in October 2007, she did more blood work
which had the same results elevated rheumatoid factor, elevated sed
rate, and elevated WBC. She referred me to a new Rheumatologist. I saw
him in November. He said I had both Osteo-Arthritis and fibromyalgia.
He prescribed a new fibromyalgia medication called Lyrica. He also did
a blood test for vitamin D deficiency – he said that vitamin D
deficiency has be link to widespread muscle pains
When I got home from work today there was a message on my answering
machine from the doctor’s office saying that my test results indicated
that I had severe vitamin D deficiency and to call the doctor’s office
first thing Monday. The doctor would like for me to start taking a
Vitamin D supplement and needs the number to my pharmacy. Hence, I
began searching the internet for causes of vitamin D deficiency and
located this forum. Sorry, my message is so long but I needed to vent.
Over the past few months I have been researching my symptoms over the
internet and my symptoms seem to relate to Chronic Inflammation,
ankylosing spondylitis or perhaps undifferentiated ankylosing
spondylitis, or perhaps mild early stage rheumatoid arthritis. But, I
don’t feel as though I can comfortably discuss my concerns about these
possible diseases with my rheumatologist. Because he seems so
determined that I have Fibromyalgia and he seems convinced that
vitamin D supplements and Lyrica will be the cure for all of my pains.
I can relate to the comments made by Stacy01 on 10/13/07, I am also
tired of being in pain and no matter what medicine I take I get no
real relief. But, I was also intrigued by comments made by jlr52629,
on 11/9/2007 who said that since taking vitamin D for approx 4 weeks
you felt tremendously better. Your comments made me think that perhaps
I should give the vitamin D supplements a try. Well I let you know
what the doctor says on Monday.

I found some interesting information about Vitamin D Deficency at the
website listed below (check it out):

http://www.knowledgeofhealth.com/pdfs/fibromyalgia.pdf 

by PlateletGal, Dec 08, 2007 04:27PMTo: jlr52629
Are you still feeling better with the vitamin D treatment ? Vitamin D
is not a true vitamin and it is an immunosuppressive steriod. Vitamin
D dysregulation is common in autoimmune conditions, fibromyalgia &
CFS. Taking extra Vitamin D, is probably only a temporary "treatment",
in my opinion. Unfortunately it doesn't solve the problem.

 

by overbeingsick, Dec 13, 2007 06:30PMTo: Anyone I have been feeling
terrible for years. I've been told it's CFS, my allergies making me
fatigued, depression. Over the last 8 months, I have started
aching,much like getting the flu, but it never comes on. I get low
grade fevers (which I've had since childhood), swollen lymph nodes,
extreme fatigue, feel "foggy", can't concentrate, pain when you press
on my stomach area, headaches, bloating, stiff neck, achy back, weight
gain (which I am unable to lose), the list goes on. I was recently
diagnosed with a vitamin D deficiency. I've been taking 2000 IU a day
for about a week. I know it's still early, but can anyone give me an
idea about when I MIGHT be feeling somewhat better? How long does it
take to get into your system and start helping? 

by Joe8k, Dec 19, 2007 10:16PMTo: overbeingsick I know what you mean.
Have the same sympthoms (back pain, foggy, musles weakeness, fatigue,
alrgies...), but no diagnostics of CFS, just hypersensitivities to
everything.
I have figured that I get brain fogged (some astraunauts gets while in
space) when exposed to some plastics. Just having some running showes
close by cause me to feel drowsy, and having problem concentrating. I
get similar problems from some heated plastic in power supply, like
the small transformers for laptops and other electronics systems, new
TV. It seem that the new devices and plastic cause problems, but not
the old electrnics. It may be that there has been some changes in the
chemistry they used to prodice them. One problems I see comming is
that the new high efficiency ligting (will become the only thing
available soon by law) does give me problems.

I have eliminated all the sources from around me, and feel much better
now. Turning off, and disconnecting the TV and electronic componants
when not in used.

I may very well be Vitamin D deficient. Just saw a documentary today,
and read a few web pages on the symptomes, which got me here. I am
effraid I have not been in direct sunlight often enough for many
years. Combined with a poor diet. The symptomeds started many years
ago, and now start to have leg cramps since a few months ago.

 Just learning about the Vitamin D deficiency symptoms make me so upset
 at the doctors. Why is it that they naver suggest it? This is
 extreamly unsetling to think that something so simple to treat, and
 something so common would not even be considered by the experts!
 

by ronpaul4prez, Dec 20, 2007 01:24PM wow... its like I post this
question

now I gotta read...

I just found out I have marfan syndrome. but I've been going
everywhere trying to figure out why I was always in pain. joint pain,
nerve pain, bone pain, muscle pain, etc. I was tested for
everything... everything except Vit. D. go figure 

by ronpaul4prez, Dec 20, 2007 01:34PM I can't believe what I'm
reading..

man, it feels so great to finally figure out whats going on with me.
best christmas EVER!!!!!!!!!

I'm 22/f... I've had pains as long as I can remember. I've had blood
test after blood test done, thousands and thousands of dollars, years
of freaking misery! and all I needed was some Vit. D!!! AAHHH!

and that's interesting about gulten. I was also just told I have that
disease, I guess its common with marfans

 so... basically.... my life story
 

by Sue6637, Dec 21, 2007 09:58AMTo: ALL For all of you that have been
diagnosed with a vitamin D deficiency and have had normal TSH results,
but still feel bad, may want to consider asking your physician to test
for thyroid antibodies. Your thyroid could be failing, but it is not
reflected in your TSH --- yet. 

by PlateletGal, Dec 22, 2007 04:02AMTo: Joe8k
Vitamin D deficiency is common in CFS & autoimmune conditions. I have
CFS and it sounds like you share many of the same symptoms that many
CFS patients do. You may want to read my profile and check out my
group that I started. I post the latest CFS info, diagnostic tests
needed for a diagnosis, physicians around the country and other
helpful info as well.

As far as taking vitamin D as a supplement. It is my belief that
people who have CFS and/or other autoimmune diseases may do well after
vitamin D supplementation, but it is only temporary. Sometimes they
can also feel worse. Vitamin D is an immunosuppressive steriod
hormone..... it is not a true vitamin. There is a lot of controvery
about that.

 Good luck !
 

 by overbeingsick, Dec 22, 2007 06:55AMTo: Joe8k I never thought about
 plastics being a problem. I do not get too much artificial lighting,
 so I don't think that poses a problem. I think the "D" may be helping
 some. I'm mostly only aching when the weather changes, barometer
 drops, etc., but many of the other symptoms are still here. Some are
 better, though. I guess I need to be patient.
 I will be grateful if this works, since I have felt sick since I was a
 child. I will also be very aggravated if I found out this was the
 problem all along, and have just been told over the years to "take a
 vacation", or "here's an antidepressant, try this".
 The legs cramps/aching is finally what drove me back to the doctor. I
 was continuously feeling like I was getting the flu, complete with
 chills. I now have a really great doctor who wants to "get down to the
 problem" rather than just handing out meds.
 

by ronpaul4prez, Dec 24, 2007 08:32PMTo: platelet girl platelet girl,
I know it may seem to you that everyone with the same set symptoms as
yourself has CFS, it's very unlikely.

these symptoms and complaints are extremely vague and overlap
tremendously. please keep this in mind.

 please don't take this the wrong way. have a wonderful holiday!
 

 by Honey2008, Dec 27, 2007 06:36PMTo: Platelet Gal Hi. I'm glad I
 found this website. I got sick months ago, but didn't know it. At
 times my vision would become blurry and it felt like I couldn't relax
 my muscles to sleep. I got pulsating sensations in my arms and legs
 and they were very stiff with cramping. I quit exercising because I
 was so tired. Then my immune system was comprimised in the middle of
 October. I left work early with a severe cold, fever, and chills,
 sneezing, and nausea and went to my doctor. Then she prescribed me
 antibiotics and ambien because I wasn't sleeping either. I became sick
 again with a swollen throat and tounge (spelling?) about a week later
 and went back to the doctor after making an emergency appointment
 during lunch the next day. I found out I had a jaw infection and
 thrush! Thrush is an overgrowth of bacteria on the tounge that can
 spread to the throat and cause fever and much discomfort I found out.
 It was caused by the antibiotics. Many times people with full blown
 aids get this, but I don't have AIDS or HIV. She also had to prescribe
 me another stronger antibiotic to get rid of the jaw infection this
 time. Then on about the first week of November I came down with a
 virus similar to the flu and the thrush still wasn't cured. I was
 taking this icky syrupy liquid called Nystatin. I guess it wasn't that
 bad, but many times it made me sick to my stomach and caused me to
 vomit. Plus I had to take the Nystatin 3 times a day. I finished two
 bottles full. After calling in sick 3 days one week and then being
 sick the entire weekend of the 9-11 of December my employer fired me
 for calling in on 9-12 and told me that it wasn't personal and I was
 affecting her bottom line since I was with an agency. Meaning she
 didn't reach her goals because of my illness. Ohhh tooo bad for her!!!
 Plus she told the employment department that I said I was too tired to
 go to work. I told them yes! I was too tired. I was really sick with
 flu like symptoms and kept going to work anyways in fear of losing my
 job. Just the week before they told me how valuable I was. NOT! I'm on
 treatment for vitamin D deficiency, loss of sleep, and seasonal
 affective disorder now. I am being treated with fluid vitamin D
 droplets as cholecalciferol 2,000 IU x 3 times a day, plus I'm allowed
 to take my GNC vitamins. I eat only healthy foods now. The other day I
 took my dog out and out of the blue started running. It felt great!
 There is no underlying cause except for vitamin D deficiency and an
 escalation from that into poorer and poorer health symptoms. Vitamin D
 deficiency is said to cause rickets in children and cancer in adults,
 and it also has been linked to compromising the immune system. I read
 online that the CDC has listed this as an epedemic and during winter
 months especially where the sun does not shine vitamin D can affect as
 many as %40 of the population in those areas in various ways, from
 muscle aches to a messed up immune system, its all symptomatic of
 vitamin D deficiency (if that's what you have). I'm not saying that if
 you have these symptoms it is vitamin D deficiency but you should
 definitely get tested. I was also tested for a bunch of other things
 including Thyroid abnormality and they all came back normal. Now with
 my new medical results and through releasing my medical records to
 myself I can fight the employment departments decision to not pay me
 because they think I'm a lazy -- who just likes to stay home and
 pretend to be sick and lay on her lazy but. No. I would much rather
 have my $$$ and $17 per hour back without relying on my family and
 friends for help to pay bills through these tough times. Honey2008
 

by mountaindew171, Dec 27, 2007 11:50PMTo: everyone Well all of your
stories ring close to mine I guess. Even when I was a kid I had bone &
muscle aches and yes I remember the term "growing pains" I couldn't
help wonder though when I was in my 20's & 30's when these "growing
pains" were going to realize I was grown!

So finally a few years back I talked to my doc at the time, she tossed
out the fibromyalgia diagnosis but I think it was more a fact of
having to call it something. She prescribed me flexeril which did
nothing but make me feel hungover the next day. I moved back to town
soon after that and one of the docs in town was a fibro specialist so
I went to see him. He tended to agree with me that fibro wasn't really
the diagosis but he didnt do much to find out what it was. His
assitant did a lot of blood workups, mainly looking for a thyroid
condition but didnt find it. The assistant soon went out on his own
and I followed to his practice because at least he was trying. I got
the b12 shots (didnt help)

I finally said the hell with the docs, I hurt I'm going to make it
stop so I was buying my percocets from other people just to keep the
pain down. (not a good idea as I'll tell in a minute) I went to the
doc a couple months ago because of a rash but also because of feeling
like ----. He did some more bloodwork and I recieved a call from the
nurse telling me they were worried about my GFR levels, She didnt
expect me to know what that meant but I went through CKD with my mom a
few years ago. My level was a 41 which is stage 3 CKD. They wanted to
retest in a few weeks and see where it was so the first thing I
stopped was the percocet because although the oxy in it is ok its the
APAP that kills your kidneys, I knew that just never thought I was
taking enough to worry about. So long story short my retested number
was 71 which is still low but not as severe. It was a big difference
and both my doc and I were surprised. He said a lot of things can
cause the kidneys to malfunction and thats when he tested my D levels.

Got the call today and the nurse says my D level is 1/3 of what it
should be and I need to be taking 1000IUs of D a day. Now I see some
of you saying you take 50,000???? Is that correct? And if so what good
is 1000 a day going to do me?

 Also he seems to think the D level being down cause my kidney problem
 but the way I see it if the kidneys are malfunctioning they cant
 matabolize the vitamin D and that causes the deficiency. Am I looking
 at that the right way? Its kind of like which came first the chicken
 or the egg. And then is there something else causing both problems?
 

by mkor, Dec 30, 2007 07:13AMTo: Honey2008 dear Honey2008
i also have pulsating in my arms and feet but i also have
uncontrollable rage,shaking sensation in my head and muscle twitching
etc that goes along with it.
Did anything you took stop the pulsating?
thankyou 

by justlikeyou, Dec 30, 2007 09:50AM im 43 and male, ive had many of
the symptoms mentioned above on and off over the years, and the thing
that makes me feel better is when i eat well and dont eat cr@p.

i mean zero cr@p food, no bread, sugar, coffe etc etc, nothing bad,
only veggies etc. i feel much better in 2 days, but when i start to
feel better i start to eat all the cr@p again :(

candida has been on my mind for 12 years, im sure if i ate really well
id be healty, but i cant seem to stop eating the junk.

does anyone here eat a strictly healthy diet and still have these
symptoms?

or do we all drink coffe and eat sugar and bread and other zero
nutriant high toxicity items?

be honest :) 

by Soonerman, Dec 31, 2007 12:25PM Candida overgrowth seems to be a
major problem. Especially Honey2008, you have the oral thrush that
indicates too much candida, and said you have taken antibiotics for a
seemingly prolonged period of time; this can allow the bad bacteria to
take over in your body/gut. It can lead to many symptoms, google it,
and will upset absorption of vitamins/minerals. Like justlikeyou said
following candida elimination diet and maybe taking a good probiotic
could fix that problem and eliminate your symptoms (depending on the
severity). Candida and Gluten Intolerance/Allergy (or celiacs) are the
two main culprits I have run across that cause malabsorption and
vitamin deficiencies (mostly B12 I have found; I don't know about the
D though). Just a thought, but those are two easy things to look into
and fix if they are the cause. 

by Lucyanne, Jan 02, 2008 11:10PMTo: all very interesting discussion.
I am 48 and have been dealing with 'all of the above' for about 15
years. Was just told today by an eye doctor that Vitamin D probably
plays a big role in my condition, so I will check it out. 

by ch81, Jan 04, 2008 09:04PM This was just what I was looking for...

A couple months ago I started having intense tingling in hands/feet,
dizziness, fatigue, headaches, muscle weakness, hyperreflexes etc.
Went to ER, PCP, and finally referred to neurologist who did MRIs of
entire spine/brain, spinal tap, and multiple X-rays. Everything came
back normal, perfectly normal. This lasted for about a month. Then one
day it was gone... and I was good for about 34 days. 3 days ago it all
came back. Pain in legs is so bad I can hardly walk and OTC pain meds
do not work. Went back to neurologist who started to think it wasn't
neurological and ran more blood work (Thyroid, Lupus, Arthritis,
Vitamin E/D/B12).

Got test results today and my Vitamin D was at 16. They said they
aren't sure if its all related and there is an underlying cause but it
helps them look a little deeper. After seeing all your responses it
makes me wonder if this might be the ticket. Supposed to call PCP
Monday to get on supplement while neuro calls around for further
ideas.

Hoping this helps!! Thanks for all your insight! 

by ronpaul4prez, Jan 16, 2008 02:18PM well, I was diagnosed with joint
hypermobility syndrome, and some other syndrome with my knees. so I've
been going to physical therapy 3 days a week. and also at the time of
the diagnosis I was sick with some cold/virus... so I figured I'd wait
to take the Vit. D when I didn't feel "sick", so I could tell if it
was helping...

well I forgot all about taking it. I thought the pain was all from
being hypermobile. hits forehead

so anway, now my doctor probably thinks I'm nuts and wanting to stay
sick... ha ha haa ha. yeah, go me!!!!!! I'm an idiot.

also my doc wants me to go to gastroenterology... I told him it's just
IBS, but he said he needs to rule other things out before he says it's
only IBS. soooo, yeah, here I go again! LOL. 

by marianny, Jan 19, 2008 04:17PMTo: all of you Thank you, thank you
for being here and writing your notes. I thought i was going crazy
with this symptoms and absolubtely no one believes that vitamin d
deficiency can have this symptoms. Everyone says is depression and i
know for sure it is not. Im going to the endocrinologist in 2 weeks.
Sometimes, i cant stand, seat, sleep, work. The pain is not something
i can handle. Knowing that there is other people like me, makes me
understand im not going crazy. Thank you! 

by dlightful, Jan 29, 2008 11:21PM Weird Symptoms
by dlightful, Jan 27, 2008 10:51PM
I am 41, started to experience some weird stuff lately. First symptom
, feel almost like the old trick when your friends would pretend to
crack an egg on your head and you would feel it running down your
head, this can last a couple of days sometimes. Then very weird pains
in my chest, arm pits, upper arms, shoulders and wrists. Sometimes my
upper chest and shoulders feel a cold sensation. Also feel very
fatiqued, and breathless. As you all probably know, many tests at the
doctor. Bone Scan, came back normal, ECG, showed no heart problem,
Chest x ray showed a broken vertebrae (for no reason) havent fallen or
hurt myself. Hormone test show, I am post menopausal (still
experiencing my period however) and a vitamain d deficiency also was a
result of these tests. Doctor has instrurcted me to up vitamin d to
2600 iu per day and also has me on a mild anxiety pill to stop me from
freaking out about all of this. Up until now, I have been been very
healthy and active. Anyone have any advice for me....please 

by RiaT, Mar 04, 2008 05:55AMTo: Everyone I was wondering if anyone
has fatigue with Vitamin D deficiency. I am just about to be tested
for it. I have celiac/coeliac and lactose intolerance, Vitamin B12
deficiency, and Diabetes Insipidus. Even though I am being treated for
everything, I still have debilitating fatigue and severe pain in my
hands (back and sides), fingers, wrists, and sometimes my lower arms.
Occasionally I get it in my ankles, and the pain in lower legs and
feet, lower arms and hands, is worse when I'm cold.

My doctor is checking my Vit D now, and prescribed that I winter
somewhere warm (but to tell him if I choose Italy, so he can come and
visit). My doctor does have a sense of humour but is great in that he
has never failed me and took all my symptoms seriously and saved me
from some more permanent problems. I also still have continuous
vertigo, tinnitus and balance problems, but have accepted that it
might never go (after three years). It would be nice to live a more
normal life and not be in pain and be constantly tired. I'm not
expecting miracles, just an improvement. 

by Soonerman, Mar 04, 2008 10:02AMTo: RiaT Since you have Celiac,
have you been completely gluten free? Also as you said Celiacs
generally have trouble with dairy until their Villi in the intestines
has healed and then most can handle dairy fine.

Generally Celiacs have low B, D, and K vitamin levels due to the
severe malabsorption. Yes fatigue and pain are a big part of Celiacs
and of course low B12, D, K, whatever else your body has not been
properly digesting. Going gluten free will allow your body to heal and
allow you to start properly absorbing these vitamins and nutrients;
but until then you should be having B12 shots and if low in anything
else other supplements until your body has healed. 

by Kre8Joy, Mar 06, 2008 05:37PMTo: All Vitamin D Seekers I have FMS,
Primary Sjogren's Syndrome that as my Docs say "You pulled a really
dirty end out of the fire!' because it seems to have moved so quickly
into my heart and nervous systems. I had Dysautonomia prior to the
symptoms for Sjogren's and I have terrible pain from Myofascial Pain
Syndrome in my muscles. The FMS and MPS started within four months of
two minor rear-ended auto accidents ten years ago. Until that point, I
was disgustingly healthy. At this point, I have few healthy disc left
in my spine and have been on a strong pain management program for my
neck and upper back since 2001. Those of you with FMS know that even
the strongest narcotic pain meds do little for Fibro pain and my
program helps some pain, but the other takes constant managing with
biofeedback, deep-breathing, relaxation, but mainly prayer. There is
one crisis after another, with the doctors running and chasing a
diagnosis, usually something very scarey that turns out to show
something, but nothing treatable and nothing that really explains the
total deterioration of my health and life.
Then amazingly five months ago as I was telling one of my specialist
that I was worse and she was telling me that I had really been through
a terrible year so it MUST be stress. I had taught all this and been a
support group facilitator and I was certain that something was
happening to me. She did say she wanted me to step down to the lab and
I did.
She called back the next day and told me how low my Vitamin D was and
put me right away on the "PROGRAM". As I began to read about the pain
and fatigue and other symptoms the deficiency could cause, I emailed
my Rheumy, just knowing I had stumbled onto something wonderful. He
had dxed my right hip as mildly Osteopenic 18 months prior and when he
emailed back, his response was, he did not know how I fell between the
cracks. I should have been tested then. They "missed" me. Then I
realized that it caused the problem in my hip. The more I read, it
occured to me that No one should ever be concretely dxed with CFIDS or
FMS without ruling this out first, because the symptoms are so
similar.
After four months, the lab tested me again and my doctor was hoping
for a reading of 40 (normal being 32-100 at the lab she uses) and my
reading was 69.5. No wonder my energy level was better. A constant
tingling and numbness in my hands and feet that had been blamed on my
Sjogren's and DYS was so much improved. I was tolded to stop the RX
and go to an OTC 1000 unit Vitamin D supplement. This week, after
three months of that regiment, and slowly having my fatigue return,
and the pain increase again, and blaming the tingling in my hands on
so many things, the Dr. asked to check my Vitamin D just to be certain
it had stayed up. . .......
She called today and it was back down, this time only to 19.7, but
when you have an auto-immune illness and you are supplementing with
1000 units each day, and what I have read says you become symtomatic
at 25 and lower, and I slid that low--even pumping that supplement
faithfully each day. SOMEONE HELP.
There has to be a difference in supplements. I understand there are
different names. What I as taking says Vitamin D (as cholecalciferol)
1000 iu. It also contained Calcium 120mg. The RX is 50,000 and is a
gel capsule, and this OTC is a tablet. The Dr.'s nurse just said to
take a Vitamin D Supplement at 1000 units a day and that is the only
one that strong I found.
The suggestions of the Thyroid are excellent. Several years ago, my
TSH were always normal and I was symptomatic, a physician I had to
speak at a Support Group Meeting told us to always request a FULL
Panel Thyroid test, and that any other kind was useless. He told us
that it should include TSH, T3, free T3, T4 and Free T4 and I hope I
remember that correctly. When mine was tested that way, it was found
that my T3 was virtually non-existant. I had enough TSH or the hormone
to give the gland permission to make the T4 and it was producint T4 in
adequate amounts, but over simplification is that it takes T3 to
convert the T4 to a useable product down at cell level, so that
metabolism and cell rejuvenation takes place or all the good stuff.
So, it just wasn't happening. My Dr. had tried T4 and nothing
happened, added T3 and nothing happened and she went against some
warnings and tried this theory called "Wilson's Syndome" and ordered
compounded T3 in titrated doses from a compounding shop. I guess we
Shocked my thyroid back into knowing how it used to work before the
accidents. It required careful monitoring of my heart. It never
occurred to me that Vitamin D had anything to do with it, my body temp
has stayed around 97.3 since and it was always 98.6 unless I was ill,
all by life. Hope this is readable. If anyone knows about OTC
Supplements for Vitamin D, maybe it would explain how I bottomed back
out so fast. There is an auto-immune connection here. My Dr. told me
that 90% of her patients, who are all auto-immune patients with
Sjogren's and Lupus and FMS and Sclerderma or MS and RA so many of us
also have Mitral Valve Prolapse-- I keep naming to see if the rest of
you see a connection at all. Oh, my Dr. also is a patient, so she also
was deficient in Vitamin D. I have not asked how many have gone back
down after going so high. Oh, yes, on my OTC bottle, there is a circle
that says "D3" Does that ring a bell for anyone? 

by bamabird, Mar 08, 2008 01:12PMTo: vitamin D Deficiency Almost 50
and found the vit. D> deficiency. Must have had this since childhood
since also scoliosis was found a leg length discrepancy (1/2 inch leg
shorter on my left shin) as well as porphyria. MRI has found also disc
degeneration and bone marrow has some problems. Where is a list of
bone marrow specialists to look at further bone marrow damage?

Sincerely,

elizabeth from St. Paul, MN
--@---- 

by mschvusangel, Mar 08, 2008 06:40PMTo: bamabird I have an earlier
post if you wish to read.

I also have scoliosis and my right leg is 1/4 inch shorter than my
left leg. Never thought anything about it being associated with
Vitamin D deficiency though. I have also been told I have the disc
degeneration, (this was actually found when I was about 20 years old).
Of course the doctors seem to think nothing of it and I still have yet
to find a doctor that knows anything about the vitamin D deficiency.

I was on prescription vitamin D 50,000 IU's per week for 12 weeks as
well as 3,000 IU's over the counter per day because of a Vitamin D
level of 16. After the 12 weeks of therapy my level went up to 32, but
3 weeks off the Vitamin D it was back down to 20. 

by medicmommy, Mar 09, 2008 12:37PMTo: all Hello!
Vitamin D deficiency is a symptom...many of the symptoms you all have
listed I also had...after 4 years of suffering, I finally went to a
different doc...And LO! I was diagnosed with hyperparathyroidism! Docs
just don't look for this! It is pretty uncommon and gets misdiagnosed
frequently...Please see an endocrinologist...My symptoms
were...frequent headaches, heartburn, joint, muscle and bone aching,
constipation, frequent urination, muscle spasms, tetany, fatigue,
kidney stones, elevated blood calcium levels, gallstones, and just
before I had it corrected, rapid heart beat episodes and elevating
blood pressure...Oh, also difficulty concentrating/ remembering
things...I'm sure there were a few others, but, happily, I'm better
now...Good luck all...Check out Parathyroid.com for symptoms...Keep in
mind, some of these symptoms could be from thyroid trouble too (Not in
my case...) 

by timexquartz, Mar 12, 2008 09:59PMTo: all I read this entire
thread, and I still don't know if anyone felt better after taking
50,000 IU of Vitamin D for 4-6 weeks. I was diagnosed with Vitamin D
deficiency after I saw my doctor with symptoms of leg and muscle pain.
My initial reading was 21. The doctor prescribed 50,000 IU for 4
weeks. The doctor tested me again after 6 weeks and it came back with
41. Then after 6 months I went back to see my doctor again with the
same symptoms. He tested me again, and my result was 6! I took 50,000
IU for 8 weeks and continued 1,000IU over the counter supplement on
top of that everyday. After 8 weeks I went to see the doctor again and
my result came back 18. I am not felling better after all that heavy
doses of Vitamin D. Has anyone had similar experience? 

by ch81, Mar 13, 2008 06:58AMTo: timexquartz I am 9 weeks into my 10
weeks of 50,0000IUs and I still have all my symptoms. I am supposed to
return next week for a follow up test. My endo basically told me my
syptoms (symptoms) weren't being cause by the low VitD... I really
wished it was that quick fix! 

by timexquartz, Mar 18, 2008 07:34PMTo: all So, it looks like that
after taking 50,000IUs a week does not make any difference at all. I
know that I have taken about 20 tablets of 50,000IUs in the last year
alone. And I do not see any improvements in my conditions. Then what
is the point of taking these heavy doses of Vitamin D? What I am dying
to find out is the real cause of the Vitamin D deficiency. Is there
any disease behind it? I don't think lack of sun exposure is doing
this to me. I get plenty of sun exposure once I found out that I am D
deficient. 

by mschvusangel, Mar 19, 2008 10:48AMTo: timexquartz/ALL I have the
same questions!!! What is the underlying cause of the deficiency? I
too have had no relief of my symptoms. Actually, after taking the high
dose of Vit.D it makes me ache worse. My initial Vit.D level was 16
and after 12 weeks of 50,000 IU weekly and 3,000 IU over the counter
daily my level was only 30. 2 weeks off the regimen my level was back
down to 20. I have gotten plenty of sunshine, and take a daily multi
vitamin, so what is the problem? I stay so tired all the time and my
family just doesn't understand!!!

Does anybody else have other symptoms besides just the aches and
pains? I have had several other issues other than just the muscle
aches. 

by RiaT, Mar 21, 2008 04:11AMTo: Soonerman Hi and thanks for
replying.

I'm am strictly gluten free now for 14 months and after a second
endoscopy my villi are already healed. With most people the lactose
problem improves but not with me. I'm still very much lactose
intolerant and have been told I probably will always have this problem
as I have suffered all my life from stomach problems. I have vitamin
B12 injections monthly and have my levels checked regularly.
My results came back and I am slightly Vit D deficient (25) but am to
receive no treatment. I have been taking supplements, so I guess it
would have been worse if I hadn't. I'm a little young for such
severity but after an x-ray have been told I have severe arthritis in
my hands and soft tissue loss. I still think I have a bone problem as
I have general pain in the long bones of my arms and legs. Pressure on
my shins and arms causes pain. But I have been referred to the
teaching hospital to try to get to the bottom of it as my doctor
thought it was reasonable of me not to want to give up just yet and
accept that I will fatigued for the rest of my life. I spend days laid
up on the couch and many more when I can do little apart from watch
TV. This is not me at all. I'm a writer and researcher. I do have
better periods but they don't last long. My GP thought it might be an
accumulation of all my problems including chemical imbalances caused
by the Diabetes Insipidus. Yet, my blood sodium blood tests come up
okay. My niece has Coeliac and is fit and well now and she hasn't been
on the diet as long as me. She does have osteoporosis at 33 years of
age. My bone scan one year ago was fine.
I think I'm unlucky but I'm fighting to at least find out the cause of
my problems. I remain cheerful and hopeful and not depressed. I get on
with my projects the second I feel a bit better. I am to receive help
in the house too. I'm a survivor but have to admit I did cry when I
found out about the arthritis as writing is my life. I need my
hands!!! I did some research though and I'm trying to help myself as
much as possible. I wish everyone on here luck in finding causes and
remedies to their problems. And as soon as possible I'm off for a
break in the sun! It's snowing here.

xxx 

by OSMRDucks, Mar 30, 2008 07:48AMTo: timexquartz/ALL March 2007
I was diagnosed with vit.d deficiency (level was 9). This was after 12
years of increasing symptoms which included: muscle pain & spasms;
inability to sleep; hair loss; IBS; severe fatigue; depression;
tingling in hands & feet; TMJ; pos. ANA; ect; and just like everyone
else I was told to take Paxil and Ibuprofen which of course I did not.
Finally the nurse practioner in my GP office listened to me and just
ran the gamut with my blood. Everything else came back normal except
the Vitamin D. I was treated with 50,000 IU 3x per week for 8 weeks,
then told to take 800 IU (over the counter) every day (level 59 after
8 weeks and was beginning to feel better). By June I was commenting to
my family that I must have bought a bad bottle of Vitamin D3 because I
felt I was "slipping back" to where I had been. Went back to MD in
Sept. and found level was at 20; treated again & level went up, then
back down. My doctor knew this was beyod her teaching so she sent me
to a Microbiologist & Endocrinologist at Boston Medical (March 2008).
He is the "Go-To" man for Vitamin D. He said I will need to be treated
for the rest of my life, and that the levels will need to be monitored
until stable. So take heart, if vitamin d deficiency is your true
problem then you will begin to feel better after 8 weeks or so.

p.s. This doctor also indicated that vitamin d is the "Master Hormone"
which has a part in controlling others such as TSH, testosterone, and
the like. I have more information if you are interested. 

by mschvusangel, Mar 30, 2008 08:22AMTo: OSMR/ALL I just read your
post and I would be interested in hearing whatever information you
have on the Vitamin D deficiency. I too have had the same problem as
you, as soon as I finish the prescription, my levels go back down. The
over the counter D doesn't work. I have searched for many months on
information regarding Vit D and have found very little info. I have
asked my GP, Neuro, Endo, and Rheumatologist all for information about
Vitamin D deficiency and they all have basically the same answer, "I
don't really know what is causing the epidemic of the Vitamin D
deficiencies, that's just something that hasn't really been a problem
until now, so we don't have very much information on it".

My question is, if the doctors don't know much about it then how am I
supposed to get better!!! I have felt generally ill for nearly a year
now. Some days are better than others, but for the past 1-2 months I
have felt the worst in my life! I just feel like I can't go on some
days. It's not depression, as some have said, it's just an
indescribable, overwhelming feeling of fatigue. On top of the fatigue,
i have these horrible muscle cramps that come and go (happens in my
arms and legs). Sometimes the cramps are so bad that you can visually
see the muscle twisted up.

I have been checked for everything imaginable, and thus far the only
things that have really came back abnormal is my hormone levels
(mainly high levels of testosterone), low CO2, elevated CRP and Sed
rate, and of course low Vitamin D.

Over the course of doctors, I have been diagnosed with Psuedo Tumor
Cerebri (found after routine eye exam showed optic disk compression),
PVC's (premature heartbeats), high blood pressure and osteoarthritis
in lower back. I am on Atenolol, Diamox (for eyes), Metformin (for
hormone imbalance), Vitamin D, Hydrochlorothazide, and norvasc. None
of it seems to be working, and I am at a loss as to what to do now. My
muscles seem to be getting worse w/the D and I don't know what else to
do.

 

by DCL, Apr 02, 2008 07:21PMTo: Everyone I'm new here and have all the
same issues that most others are discussing. I was told by my doctor
that I am deficient in D as well. While I don't get as much sun as I
should I usually eat salmon twice a day...which is a very high natural
source of D.

After reading all of your posts, some of you questioned what the
underlying reason was for the deficiency, why your levels would go
back down after prescription level D, and why even after massive
amounts you didn't get better or felt worse. I found this article that
my just give the insight to these questions. Some of us may hvae true
vitamin D deficiency, but other may relate to the article. Also be
sure to check the date...this is cutting edge info.

http://www.sciencedaily.com/releases/2008/01/080125223302.htm 

by Avonlady08, Apr 04, 2008 09:45PMTo: Everyone I am a 47 year old
female. A year ago, I had pain in my upper back, neck, jaw and ears.
Went to the ER thinking I was having a heart attack. EKG was fine -
then my cardiac enzymes came back elevated. I wound up in the hospital
getting 2 stents the following day. After the heart event, I still
have pain in the back of my neck ( burning) and down my arms and legs.
I have been to a neurologist, and he said not related. Could be
fibrolyalgia. I do have lupus- and my rheumatologist ran a Vit D test.
It came back saying that it was undetectable. So, I was on Vit D
therapy 50,000 units once a week for a couple of months and got the
level up a to 26. Now I am on therapy once a month for 3 months and
then will be rechecked. I have a week go by where nothing hurts at
all, then a couple of bad days. Im just wondering if this is all
related to Vitamin D, even the heart attack. My cardiologist doesn't
think so. They have me on Neurontin and advil. Any ideas if Vit D
would cause all of this?? 

by RiaT, Apr 09, 2008 02:46PMTo: DCL Thank you for the link about
vitamin D deficiency. Taking supplements did worry me, especially with
recent research that taking supplements of Antioxidents (especially
synthetic) for instance, can actually cause problems in the long run.
It appears that more and more vitamin supplements are thought to cause
more problems than they help. I've read for instance that high levels
of calcium as prescribed by your doctor is now beginning to result
(after about 10 years) with some kind of bone rot. I'm glad so far
that I don't have to have calcium although it's a possiblity at some
point with me being coeliac and lactose intolerant. I will avoid it if
possible. As for my slightly low Vit D, I'll wait for the sunny
weather!
I've finally received my appointment at the academic hospital to see
an endocrinologist at the end of May. All my blood results and history
from the past 18 months where sent for review and I'm to see two
specialists, one after the other covering one and a half hours. So I'm
waiting to see what happens before taking anything other than my
desmopressin (for my diabetes Insipidus) and B12 injections for my
pernicious anaemia.

 

by jsilas, Apr 15, 2008 03:02PMTo: All I am a 28 year old male, and I
have been dealing with several of the symptoms listed in this
conversation.

I had quite severe joint and muscle pain, poor circulation, headaches,
back/neck aches, and accute pain in my guts (gastrointestinal tract).
I also have experienced a severe inability to concentrate and focus,
and poor memory.

I went to the doctor and he ordered a full blood workup; I ended up
'donating' 7 large vials of blood, and that was just for a routine
workup (I hadn't been to the doc in several years at that time). The
tests all came back normal, save one; Vitamin D levels. Mine were at a
precarious low (~10).

My doctor started me on a regimen of 4,000 I.U.s of Vitamin D per day.

Within 2 weeks, I noticed that I wasn't waking up all night to joint
pain and limbs falling asleep; I was able to sleep the whole night
through. My joints have not been feeling nearly as painful as they
were, and I attribute this to the increase in Vitamin D. Also as an
interesting sidenote, I had a few small warts on one of my hands, and
within a month of taking this level of Vitamin D, the warts literally
disappeared. My wife could scarcely believe it; she just keep looking
at my hand over and over in awe.

I go back into the doctor next week for them to recheck my Vitamin D
levels, and see what this regimen has led to.

Unfortunately, I am still experiencing the gastrointestinal pain and
general discomfort, which I'm starting to believe might be a symptom
of another issue; perhaps the same underlying issue which has caused
my VitD deficiency in the first place.

I will happily share the results of my blood work with you all when it
comes back, and will update this conversation if I learn anything new.
My doctor does seem willing to dig and find out what is going on to
cause this deficiency, so I'm hoping he'll play sleuth and get me/us
some useful information.

 Best of luck to you all; I will update as soon as I know more...
 

by send2annee, Apr 18, 2008 11:54AMTo: All I am so happy to have found
this website and thank all of you for the information you have posted.

I too have been sick and achey (achy) since as far back as I can
possibly remember. In the past 2 years though everything has started
to get much worse.

I suffer from hypothyroidism, hashimoto's disease (thyroid disease),
high blood pressure and depression. This has been going on for
years .............................

I saw an endocronologist years ago for the hypothyroidism and
hashimoto's diagnosis. Saw the endocronologist for a few more years
then let the primary care take over with that, so I wouldn't have to
see both docs.

In the past year I had an ovary removed (had a huge cyst). When the
ovary was removed I started having menopausal symptoms. My memory got
even worse than it already was ........ At times I couldn't remember
something from one minute to the next! The gynecologist and primary
care did bloodwork, my thyroid was screwed up and my hormone levels
were menopausal. For months they kept checking things and changing med
levels etc. Started taking prozac for depression and menopause.

I finally decided that I needed to go back to the endocronologist to
find out what is really happening. She looked at my previous blood
test results etc., listening to what I had to say about how I was
feeling and said, your thryoid problems and menopause symptoms will
fluctuate for the next year or so and we will have to continue to
monitor what is going on BUT she said, 'I would bet that you have a
vitamin D deficiency also.'

She did the blood tests, everything came up normal (the menopause was
gone this time ....) and the only thing that was bad was the vitamin D
level. My level was 15 (I was told normal was 32 - 100) SO, she has
prescribed 50,000 units of vitamin D once per month.

I haven't started this yet, just got the prescription. I'm hoping that
this does work and I finally feel better. I guess we will see. If I
feel better after all of this years it will be a miracle.

I'll have to research this further though. I wonder if my thryoid
problems are causing this.... Also, recently, they found a cyst on one
of my kidneys. I had a cat scan this week for that. (No results yet).

I also wonder if this is hereditary. My mom has been sick like this
all of her life. She said she has only had a few times in her life
when she felt well. I just told her about this Vitamin D things and
suggested she have hers checked. Her doc said, "We have to have a
reason to do that test." She told him "My daughter has vitamin D
deficiency etc. etc." They said, "That isn't a good enough reason."

Is this common in anyones family? 

by fallenstarsparkle, Apr 22, 2008 10:19PMTo: everyone thanks for all
the information everyone. I too have recently been diagnosed with vit.
d deficiency, after several years of a weakened immune system(I am
currently on round 3 of antibiotics for one ear infection that i have
had now for over one month) and have more recently become increasingly
achy, tired and scatter-brained. I compare it to a constant mild
hangover. Th joint pains(particularly in my hips and shoulders) keep
me from falling asleep at night, I have been having frequent
headaches, muscle pains, back pain and have had little to no energy at
all. Everyone kept asking me if I was depressed, but having been
through that before as well, I knew this was different.

Much like most of the other postings, the doctor decided to draw some
basic bloodwork, including kidney, liver and thyroid function tests,
lyme titer and western blot for lyme, CBC and a few others. The ONLY
thing that came back abnormal(aside from the evidence that i am
fighting the ear infection) was the vit. d deficiency.

Most web sites it seems only list the bone problems, so i was really
glad to come across a group of people experiencing similar symptoms to
me. It's nice to know that its not all in my head!

If anyone has come across other informative websites, could you foward
them to me? that would be great. thanks! 

by fallenstarsparkle, Apr 27, 2008 08:24PMTo: everyone also, by the
way, i was wondering if anyone else bruises very easily....i have
countless bruises that i just cant explain. please let me know.
thanks! 

by Totie, Apr 28, 2008 09:42AMTo: all I was currently diagnosed with
deficency in Vitamin D and B12 this month. I was given a B12 shot,
take B12 tablet everyday for now. I have to take 500000U once a week
for 12 weeks as well. I have not been given any reason for it, don't
know if i will for the deficency. I live in Texas so sunshine in my
body is NOT lacking....

I go back this week, so I will ask what happens now, and if she knows
why it happened. 

by rockerwoman, Apr 30, 2008 12:56PMTo: all Wow,I was looking up Vit D
definicy and found this Forum.
I can feel for you with the pain issues,and it does hurt alot.

I had spine surgery,did okay for a few month's afterward's,then,I felt
achy all over right down to my bone's.
I was tired all the time,got depressed,cuz I was doing so good
then,this all kicked in.

I had alot of xrays done on my spine and another MRI,they thought
somthing went wrong,after my fusion.

Then my Doctor had a Vit D. blood test done on me.It took awhile to
get my result's back,I live in indiana,and the test had to go to
Mayo's clinic,after a week,my Dr called and said,I have Vit D
defiency.

She put me on Vit d,50,ooo unit's,a week.I started feeling good,after
a few month's,then she decreased it to,once a month,then I started
feeling like ---- again.

So now,she is testing my parothyroid,and I am waiting to see how that
comes back??

Thank's for this site,and your post,and all the replies back,it is
very interesting.

 Just wanted to say,your not alone,with the pain.
 I will post back after my blood test result's.
 

by timexquartz, May 02, 2008 10:19PMTo: All I am desperately trying
to figure out a reason behind my Vitamin D deficiency because taking
heavy doses of supplements is not working for me. I have also made a
few changes in lifestyle so if something that I am doing that may be
causing this deficiency then I can find that out. 1) I am religious
about taking at least 8 hours of sleep now. I have been doing it for
last 2-3 weeks. 2) I stopped drinking coke 2 weeks ago. I will try to
go without coke for at least couple of months. No diet soda. No
carbonated drinks. 3) I want to stop drinking coffee. I will probably
start that too.

 Are all of us heavy coffee drinkers? I know I am. I have probably
 drunk 3 cups of coffee at work everyday for almost 4 years now. What
 if heavy caffeine intake could cause Vitamin D deficiency? Let us all
 post about our habits here. Maybe we all have some common
 habit/lifestyle that may be responsible for the Vitamin D deficiency.
 My bad habit is this: I don’t do breakfast in the morning. I go to
 work with empty stomach and once I am there I put a cup of hot coffee
 in my empty stomach. This has been going on for almost 4 years now. :(
 

by mschvusangel, May 03, 2008 08:16AMTo: timex I don't think it has
anything to do with caffeine because I consume very little and my
levels are still low. I usually don't buy sodas for our household, and
we don't drink coffee.
I have to admit, I don't eat a very healthy diet, but I do try to
incorporate foods that are high in Vitamin D into it. I buy O J, milk,
butter, ect... that have extra D and calcium. I have been doing this
for several years because I have such bad knee and back pain. I
thought adding calcium and Vitamin D to my diet would help, but low
and behold several years later I find out my levels are way below
normal.

I have racked my brain, and the internet trying to figure out what
could be the cause of the deficiency and still have no clue. I have
asked every doctor I have come in contact with if they know anything
about the deficiency epidemic and none of them have had a clue!! they
say that it is just now becoming a problem and they just don't have
enough knowledge about the problem. I firmly believe that there is an
underlying cause, but the doctors will never figure it out because
they know nothing about it in the first place. I have been on the
therapy for several months now, and the highest my levels have gotten
is 25. That was when I was taking the 50,000 IU's weekly in addition
to my daily D fortified multi-vitamin, daily over the counter D
2,000IU and daily cod liver oil.

I know I have read somewhere that having a low D level puts you at a
great risk for developing cancer, and auto-immune disease. 

by darlingdivatx, May 04, 2008 12:09AM You need to check info at
www.parathyroid.com. This is hosted by the leading doc in the US on
the parathyroid. This is the gland that regulates calcium. This gland
)there are actually 4) can sometimes go wacky. One, or more, of them
grows and produces too much PTH. It is not uncommon to have your vit d
fall as a result of this, because vit d and calcium are related.

 Check out the website and it will explain everything there. Good luck.
 

by JackieCalifornia, May 05, 2008 02:10AM Well, I wrote a loooong
post, but it looks like it disappeared in cyberspace.

The bottom line is: I've been reading about the interrelation of
calcium, magnesium, postassium and phosphorus (all electrolytes in
your blood stream that coordinate a bunch of metabolic activity), and
if your magnesium levels are low, then your calcium levels are also
probably low, and too much Vitamin D (to increase calcium levels) or
just straight calcium supplementation can just drive the magnesium
levels lower and cause BIG problems. It's a big feedback loop, and if
your body doesn't have enough magnesium, the calcium doesn't know
where to go, so it ends up being deposited in not-so-good places like
heart valves (!), maybe arteries (?), muscles (perhaps some of the
pain some of you are having), and other soft tissue (which maybe
explains all the calcifications on my mammogram).

Magnesium is hard to test for, because most of it's not in your blood
stream, it's stored somewhere else in your body, and your body will
just keep taking more out of storage and putting into your blood
stream, so the blood levels of magnesium look normal even though your
body is running out.

Doctors can't easily tell if your magnesium levels are low, so they
don't test for it. They do however test for your calcium and Vitamin D
levels, and if they're low, then you get supplements.

Sounds logical, except that 'excessive doses of Vitamin D or calcium
supplments can result in increased renal kidney magnesium
excretion,' according to www.mgwater.com. See the link there to a book
by a Dr Seelig, called 'Magnesium Deficiency in the Pathogenesis of
Disease' -- esp. section 12.4.4.1. It's an old book and very
technical, but I haven't found anything that contradicts its logical
approach. Therefore: not enough magnesium means your body shuts down
its need for calcium, and so also its production of Vitamin D to
collect the calcium -- and by trying to goose the Vitamin D or calcium
levels, your body doesn't know what to do with the extra, since the
magnesium isn't present to handle it all.

I have Lyme disease and am being treated with a certain kind of
antibiotic, and have recently learned that Lyme bacteria love
magnesium (so they are eating my body's supply of it up) AND the
antibiotic I am taking ALSO reduces my magnesium levels, which
explains perhaps why I've been having a badly irregular and fast
heartbeat -- but when I take magnesium supplements, it settles right
down. Magnesium is critical to modulating heart rate! (Though I have
to be careful not to take the meds and the extra magnesium at the same
time, because the meds aren't as effective then -- needs a few hours'
gap.)

 Go figure. I'm going to check all this with my doctor next time I'm
 there, but thought I'd put this out here for what it's worth. I'll
 certainly question the wisdom of lots of Vitamin D supplements.
 

by Elooooooo, May 10, 2008 04:15AM I am a 26 year old female and I
also have Vitamin D deficiency. The doctor has prescribed me 2 tablets
of vit D and calcium a day. Ive been taking them for a week now but
still no change can anyone tell me if the muscle pain gets better
after months of treatment? I have a two year old so maybe being
pregnant and breast feeding for a year hasn't helped? 

by stepho11, May 28, 2008 07:15PMTo: All I have just been diagnosed
with Vitamin D deficincy after 6 months of not knowing what caused my
pain. I suffer with headaches, muscle pain, joint pain, and pretty
much over all pain. I have a constant headache, but the rest of my
pain comes and goes at different spots. I was so surprised to find
this website and see so many other peole going thorugh the same thing
as me. In some ways it comforts me, I am not alone...other people
understand. But then I realized that everyone else who has posted
messages suffers daily as I do. It's horrible! I was just put on
Vitamin D 5000 IU for once a week and hopefully by the time the school
year starts in the fall I will be better.
Have any of you with Vitamin D Definiency dealt with irratibility? I
think I may just be frustrated because no one in my house truly
understands what I am going through. I have found some relief with
Aleve, but not completely. Maybe the Vitamin D will help me. Who
knows? I can only pray that it will. I hope everyone else facing this
horrible condition can find relief of your own... 

by beachbirdie, Jun 03, 2008 02:38AMTo: All I'm so glad to have found
this forum. I did not realize what a terrible epidemic this Vitamin D
deficiency is. It is also scary to think there might be underlying
diseases that are going undiscovered.

I've been pretty miserable this year with the fatigue, achiness, etc.
I've also caught every bug that went around town, and most recently
suffered a diverticulitis attack. Can't figure out where THAT came
from, I don't eat the Standard American Diet. Arrgghh.

I just found out my Vit D level is at 19, the "normal" range is
30-100. I'm taking 2,400 units of D3 a day and will retest in 3
months. It is discouraging to see how many of you have symptoms return
so quickly after stopping supplements.

I also have Hashimoto's disease. For all of you who have this, please
beg your doctors to check your Free T3 levels. T3 is the active
hormone used by your cells, and it is common in Hashimoto's to have
very low levels of T3. I felt like garbage for many years on the
standard "Synthroid" treatment, and didn't start feeling well till my
doctor added some Armour Thyroid (has both T3 and T4) to my meds.
There is also a synthetic T3 that can be used in TINY amounts (I'm
talking 3 to 5 micrograms, NOT the 25 mcg doctors think of when you
mention Cytomel). A lot of doctors will resist this, but it really is
helpful to adjust meds based on T3 levels. Read the book "The Thyroid
Solution" by Ridha Arem. There are also some good thyroid disease
forums out there. 

by lefty4, Jun 05, 2008 07:45PMTo: to all: I was thinking I was going
crazy, I too have a vitamin D def., and in alot of pain. I used to be
able to go all day and never quit. Now I am so exhausted and have no
energy. I am married with 2 little children and it is hard to tell
them NO mommy is too tired. In my head I am that woman with energy to
go all day, but my body says no. I know what you mean not wanting to
complain to your spouse that you do not feel good. I know they
probably get tired of hearing that, but what do you do. I also have a
high rheumatoid factor but the doctors say nothing is wrong--Yeah
right!!! I know what my feels like and it is not it's usual self. I
have been feeling this way for 5 years now......It does help to know
there are people out there with the same symptoms, thanks everyone for
all your information.....Lefty 

by dankou, Jun 18, 2008 07:29PM hi everyone, i'm 45 M i've been having
strange symptoms since last summer. it all started with a strange itch
the came the dizziness and bone and muscle pain, burning sensation
sometimes in my arms legs and face. my family doctor requested all
kind of blood work to make story short i had low vitamin D ( 12 ) for
the first month and a half he gave me nothing even though i was dizzy
and on pain all the times he said it's no cause for concern, then a
month and a half later he give me vitamin d 50.000 units once a week.
i got better but toward the end of the week i begin to feel worse agin
as the dose wear out. i feel there's something else causing the
vitamin D deficiency but my doctor doesn't agree. i'm thinking about
going to the ER i'm sure when my 13 weeks prescription run out i'll be
back to square one. 

by LawGirly, Jun 19, 2008 09:56AMTo: All Well here's another person
with a stuff happening - no answers - except a Vitamin D deficiency.
I'm a 47 yo female married mother of 2 kids under 13 - healthy in all
other respects - except for carpal tunnel that I've had for 12 years
off and on - I just live with it/ignore it.

My story - woke up a few weeks before Xmas '07 - off balance - weird.
Figured I was just sleepy. Went walking with my walking group - walked
like a drunkard. Explained - woke up this way - was not drunk! Later
that day full on vertigo - had to be walked to my room to lie down for
an hour or so. For the next three weeks - I felt like a bobble head -
my eyes didn't track when I moved my head - like a camcorder w/o
steady cam. I elt seasick all the time.

Went to an ENT - he gave me exercises to retrain my brain to adjust to
the motion. "Don't come back if it's gone by next appt." It was - I
didn't - then a few weeks later wham - the boobleheadedness was back
balance still poor.

Went back - he ran caloric tests - diagnosis Nystagmus - but why?
Ordered brain MRI. Sent me to physical therapy for the balance.

Meanwhile - I've been pestering my GP that I want an ENDO to check my
hormone levels b/c something is not right.

MRI - "normal." ENT punts me back to my GP. GP sends me to
Ophthalmologist who supposedly is good with nystagmus. First thing he
says I don't know much about nystagmus. He saw it and literally looked
up possibilities - clueless. I knew more from the internet. Said see a
NEURO - OPTHAL.... there are none where I live.

ENDO says all tests normal except - Vitamin D - It's @ 19. She puts me
on 50,000 iu for one week - then 1 per month for 3 months. I finished
the week 2 weeks ago - I will see her in August for another level
check.

My balance is better - but it's not 100%. The nystagmus - flared up
last week badly for 2 days - then gone.

I'm pushing the GP for a NEURO - I want MS ruled out - because
nystagmus and low Vit D are often associated with that.

I can't believe how long it takes to get to the bottom of something
like this!

Take care - all! 

by peggy125, Jun 25, 2008 07:22AMTo: All Just like couple other people
mentioned, get your parathyroid checked everyone. Low Vit. D, high
total calcium (this one could be within normal or high normal range),
high ionized calcium and urine calcium will point to the parathyroid.
In 2003 my total calcium was 10.4, just 0.2 above high normal but
disregarded by MD. I've been given the diagnosis of Fibromyalgia as
well even though in my heart I was thinking it had something to do
with my thyroid since I do have autoimmune thyroid disease (I was very
close). Five years later, and convinced I was loosing it, my new
endocrinologist Dx'ed me with hyperparathyroidism. I'm in the process
of having some more testing done to see if I'll have my thyroid
removed as well do to elevated calcitonin.
www.parathyroid.com
It's a great site for all of your "moans, groans and bones" 

by KayBee73, Jun 25, 2008 04:16PMTo: All You're all dealing with very
similar symptoms that I dealt with for over 15 years. They included
swelling/tingling of hands and feet, brain fog, fatigue, intensely
sore muscles (especially hips & knees), recurring eye infections,
recurring bladder infections, asthma, hives, weak/brittle hair, change
in skin texture, livedo reticularis, thickened/hardened skin on soles
of feet, some symptoms of Lupus and Sjogrens, photosensitivity, right
leg 1/2" shorter than left, TMJ syndrome, to name a few. Also, looking
back, I was knock-kneed as a child, and pretty thin. Never in a
million years would I have thought all these symptoms could possibly
be related, but it turns out that they were. In addition to the above,
beginning in 1992 I started getting awful skin lesions, which mostly
appeared on my jaw line, neck, upper chest, scalp, and shins. Usually
they would crop up as intensely itchy bumps, one or two at a time, and
lasted for months on end. As they slowly healed, they inevitably left
ugly pock marks. I've had at least 15 lesions surgically removed from
my scalp over the years. Throughout the course of this time my
dermatologist kept insisting it was acne, but never once took a skin
sample for biopsy to confirm her (mis)diagnosis. – I KNEW the lesions
were a far cry from being zits, but no matter what I said she blew me
off.

In August of 2006 I began extensive internet research, which kept
leading me to the fact that my set of symptoms could be a result of
hypersensitivity to artificial coloring and other chemical additives.
So, in August of 2006 I threw away everything in my home that
contained artificial coloring, dyes, preservatives, fluoride
(toothpaste, etc.) pharmaceuticals such as the quinolones (Levoquin,
Cipro, etc. – I agree these drugs and others are contributing to
modern illnesses), and all other food, cosmetic, and household items
containing chemical additives - I won’t drink fluoridated water either
(google fluoride and adverse effects). Petrochemicals are probably the
most harmful to those of us who are hypersensitive to them. So many
people don’t realize that most make up and hair products contain a
cesspool of potentially harmful chemicals such as dyes – many of which
are derived from coal tar, those awful parabens, etc. The garbage that
is dumped in processed foods & beverages is truly disgusting. I threw
away a small fortune's worth of makeup, soaps, hair products,
household cleaning items, all processed food & drink items – the
reward for doing this was well worth every penny, and then some.

Within two days my entire strange set of symptoms began to improve
and/or disappear. The swelling and inflammation disappeared right away
and never returned. I’m certain that dyes (particularly the red dyes,
carmine, etc.) had been a huge enemy to my body. Humans are not
designed to tolerate constant bombardment of so many toxins, by
ingestion and/or topical application (many can be absorbed directly
through the skin). Ultimately, the cumulative effect ends up causing
these weird health problems we’ve all been dealing with (body-burden
overload of toxins). Most doctors don’t yet acknowledge these
chemicals as being the cause of illness. Besides, they “practice
medicine” which is, of course, more chemical ----. I believe that
people are finally starting to realize just how harmful a lot of these
chemicals truly are.

For nearly two years now, I have not used ANYTHING containing dyes or
any other harmful chemicals, inside or outside my body, and the
improvement has been consistent AND remarkable. However, in spite of
my vast improvement in health, there were still a few problems that
remained, the worst of which were the lesions. They weren’t as bad as
before, much smaller & didn’t last as long. Nevertheless, I knew there
was still something else irritating my system. My GP referred me to a
rheumatologist, suspecting it could be related to an autoimmune
disorder. The rheumatologist had me tested for everything imaginable.
Sure enough, after having nine vials of blood sucked out of me, it was
confirmed that I had a Vitamin D deficiency, a sensitivity to gluten,
and my immune system was being over-worked. My IgA level was only at
60 (normal is between 80 and 400), which is yet another sign of Celiac
Disease/gluten sensitivity. So, it was determined that the skin
lesions were actually the result of a secondary disease of Celiac
called Dermatitis Herpetiformis. I immediately began taking 1000 IU's
of D3 and within a six month period my level climbed to 30, which is
in the low-normal range. At the same time, I started the gluten-free
diet. Within just a few months, I began to feel even better and the
lesions backed off. Now, after being gluten-free for nearly a year, I
feel half my age, and new people I meet can't believe that I'm 53
years old. My hair has come back beautifully, skin texture is normal,
no more asthma, the TMJ has also miraculously disappeared after
suffering with it for 25 years, no more painful muscles – no more
symptoms at all! I still continue with the vitamin D therapy and
probably always will because I’m fair skinned and the sun just burns
the heck out of me anyway, so I usually try to avoid it for the most
part. Fluorescent lighting is also very irritating to those of us with
sensitive eyes and skin, so I avoid that as much as possible too.

First of all, try a gluten-free diet. You're looking for causes of a
Vit. D deficiency…Celiac Disease/gluten sensitivity are definitely
culprits. Maybe at least research the subject to see if perhaps it's
something that might be affecting your health. Also, please consider
avoiding dyes/artificial food colorings, carmine (a red food &
cosmetic dye made from crushed up cochineal beetle bodies). Do some
research, as it will lead you to other helpful info about how all
these and other toxic chemicals are harming us.

 Good luck to all of you and I hope you’re as lucky as I am in
 discovering the cause of your problems.
 

by Shenade, Jun 25, 2008 09:21PM I have vitamin D deficiency and low
calcium as well. The Doctor put me on 50,000 IU's of vitamin D for 6
weeks. My body responded to it and my calcium levels went up. I am
currently on Rocaltrol at a much lower dosage. I was diagnosed with
Pseudophyperparathyroidism. Basically, my body does not absorb vitamin
D or calcium yet my parathyroid glands are not producing enough of the
hormone. This affected me greatly. Before I was on the medication I
was exhausted all the time, sick, and I had horrible muscle pain all
over. Now I am much better. I would recommend you see a hormone
specialist to make sure you do not have a problem with your
parathyroid gland. 

by timexquartz, Jul 25, 2008 07:55PMTo: All Looks like a few people
have pointed to parathyroid issues for the vitamin D deficiency. I
will be going to my Doctor with this new information and talk to him
about what I have read on the parathyroid.com website.

Has anyone done similar? Has anyone got tested for abnormal
parathyroid function and found it to be THE cause of the vitamin D
deficiency? 

by Cloie99, Jul 27, 2008 07:36PMTo: All Thank you all for this web
site. The doctors acted like I was a crazy when I ran through my long
list of symtoms and complaints. Or they told me that I was just
getting old. Some doctors were sympathetic, but had no clue as to what
was causing my symptoms. One doctor told me it was probably the
flu...in July? I too have been suffering from many of the above
symptoms for the past year. However the symptoms got much worse in the
last few weeks: intolerable fatigue, burning and aching neck and back
muscles, tingling hands and feet, burning in lower abdomin (abdomen)/bladder
area, heart palpitations, racing heart, constant headaches,
unbelievable foot pains, nausea, insomnia, eye irritations...the list
goes on and on. Prior to this, I was very healthy, except for
well-managed type 2 diabetes. I was so healthy, that I would work out
in the gym 2-3 times a week, prior to symptoms getting so
debilitating, I could hardly get out of bed. I kept feeling so
exhausted, like I was hit by a truck and had the flu all the time.
Doctors ran all the usual tests: heart monitor, EKG, CBC, urine
cultures, thyroid, mono, pneumonia, etc. etc. Everything came back
negative except for low Vit. D (Level 10). I was put on a Vit. D
supplement. Almost immediately, the headaches, dizziness and fog went
away. Aching in feet and tingling in hands subsided. Palpitations
became much more infrequent. I was prescribed 1.25 mg once a week.
What I want to know is what is the conversion amount for this to IU's?
I can't seem to find a calculator on net to convert mg. to Units for
Vitamin D? My pharmacist told me the formula is too complex for her to
work out. So I want to know if I'm taking equivalent of 50,000 Units a
week? I still have symptoms and wondering if I can take more Vitamin
D. Is there such a thing as too much? Is sunlight better than the
supplements? And btw, I think I know what caused my deficiency. I was
taking the diet drug Alli (to lose that last 25 lbs.) and not taking
any supplements. Needless to say, I won't touch the stuff anymore.
Thanks, Cloie 

by jerrib, Aug 07, 2008 12:12PMTo: All ok, so now I know I'm not
crazy...but now the real work starts. In addition to my D being at 20,
CPK levels are elevated and my Folate Serum is low. I'm wondering if
anyone out there has had their doctor mention if these could be
connected. Thoughts? I've read all the posts and didn't see anyone
mention either of these two.

I'll be starting my Vit D today, but from what it sounds like out
there, it's a mask and not a solution to the problems of my bone
fatigue, twitching, joint pain, weight gain, tingling etc...

Any help is appreciated 

by Hudson, Aug 13, 2008 02:57PMTo: All Add me to the list of low Vit D
people. I have hashimotos thyroid and muscle aches and bone pain etc.
Went to see a rheumatologist who diagnosed me with low Vit D. My level
is 23 and she wants it to be >32...ideally at least 40.

She started me on 50,000IU's once weekly and I could not tolerate
that, so for the last 4 weeks I have been on 4000IU's daily. I do see
some improvement, however, I am not cured by any means. I suppose it
takes longer than 4 weeks to get my levels up.

After reading here, I have some concerns about the parathyroid issues
and am going to ask my GP to check this next week.

Has anyone here been diagnosed with a parathyroid tumor?

Hudson 

by karajo, Aug 31, 2008 10:22PMTo: Cloie99 Hi Cloie,
not getting exposure to sunlight on a daily bases can cause low
vitamin D levels. There are some other illnesses that can cause low D.
I know Lupus is one of them. Having a small bowel resection,
vegetarian diet, Fibromyalgia and CFIDs. This is probably not
everything, but it can get you started thinking. I believe I have
Lupus and low D too. It didn't take very long to get the level back
up. I had terrible leg/toe cramps until I got it in the normal range.
Living in Louisiana helps too. We get lots of sunshine.
KaraJo 

by Rob23462, Sep 04, 2008 11:17AMTo: pains 47 The pain, weakness &
fatigue (myalgia) I am experiencing have been incredibly debilitating.
After 2 years of suffering my MD tried the right blood test and I
started vit-D therapy today (one dose weekly for two months, then
monthly for six months with some re-evaluation along the way). I sure
hope this works. -RD 

 by Sandy3939, Sep 11, 2008 05:24PMTo: Rob23462 how much Vit D is your
 Dr giving you weekly for 2 months. I just started 50,000 units once a
 week for 2 months then 1,000 mg once a day for a month then retesting.
 

by tw52, Sep 15, 2008 09:57PMTo: Cloie99 1.25 mg of vitamin D is
equivalent to 60,000 I.U. This dose is in line with what the Vitamin D
experts recommend.
I too found out that I was deficient a few months ago. I had attended
a conference on nutrition and heard an expert speak about Vitamin D
and deficiencies. It's actually a pro-hormone with many effects
besides helping to regulate bone density. I was stunned to realize
that he was describing symptoms that I had for years (bone pain on
pressing on the lower leg) and that I could be deficient. I also had
extreme fatigue, progressive mental fogginess and irritability,
intermittent dizziness, pain in the soles of the feet, tingling in the
legs and arms that was progressing to very strong burning pains in the
arms and shoulder. Also had a persistent burning pain in the lower
right abdomen (sounds familiar, yes?). The problems with mental focus
were very alarming to me and eventually drove me to a Neurologist whom
I asked to do a Vitamin D test in addition to the many other tests he
ordered. He ridiculed me for asking, but ordered it anyway. It was the
only "positive" blood test, coming in a 17 ug/ml. Since he didn't know
what to do he told me to "go see an Endocrinologist." I have since
seen a new Internist who prescribed 50,000 IUs 2x/week for 6 weeks. By
my 4th dose (2nd wk) I was feeling much better mentally and a bit more
energetic. After 6 weeks I was retested and came in at 50 ng/ml. For
the most part the tingling has stopped, and arm pain is better. Leg
pain not as noticeable but I learned that it may take a year to
completely subside. I am pretty happy, especially because I am much
more alert and focused than I had been, and far less irritable. My
aggressive course of therapy is over but I'm concerned about relapse,
so I'm trying to continue the supplements, taking at least 1000 IU per
day and getting some sun when I can. With my strong family history of
colon cancer, I'm telling my family to get checked (many with colon
caner are vitamin D deficient) and take a supplement each day if they
can't get into the sunshine. I wish you the very best and hope that
your therapy helps. It is important to be vigilant and not let an
unknowledgeable physician deter you. Remember that deficiency means
that levels are at the point of causing disease. It's not simply a
matter of "it would be nice if they were higher." Good luck to all.
tw52 

by nickname108, Oct 04, 2008 01:04AMTo: Everyone I was just diagnosed
with a Vitamin D deficiency (7 - the norm is greater than 32). The
doctor prescribed Vitamin D 3 times a week for 4 months. I am 28 years
old and after a lot of reading I don't think I want to treat this
synthetically. My question is (and I hope someone has an answer) would
it be possible for me to get the level up with just sunshine? or
should I take the Vitamin d until my levels are normal and then use
sundhine to try and keep it that way? Thanks. 

by ckupets04, Oct 04, 2008 04:37AMTo: nickname108 hey nickname108,

you and I seem to be in the same boat. I am 29 years old and was
recently diagnosed with vitamin D Deficiency 14 nmol/L. (normal range
is 75-250nmol/L). My doctor as well as a few specialists on the
subject have told me that with my severe deficiency, sunlight alone
will not be enough to raise levels to normal. I am not a doctor so I
cant give you medical advice but my guess is vitamin d supplements
will be the best route for you.

nickname108, if possible could you send me a private message to my
inbox with a list of your symptoms that youve had? Id just like to see
if we have similar symptoms.

 

 by AudreyRose, Oct 04, 2008 07:46PM I am a victim of low Vitamin D
 also. This was discoverred by an endo I was seeing for my Thyroid.
 When I questioned her about the low D findings (5) she ordered a PTH.
 (Parathyroid Test) which came back extremely elevated. All this in
 late 2006. She did not have a clue to what to do next except to tell
 me to sit in the sun. I found a place that was doing some studies on
 PTH and Vit. D. and they were eager to do a highly upgraded High
 Resolution CT scan of the neck. This showed a parathyroid tumor on my
 lower right side. Well, they did not know what to do about this as all
 my calcium tests were normal. Had the calcium be elevated along wiht
 the elvated parathyroid Hormone test, I would of been escorted to the
 OR room to have that parathyroid tumor removed, microscopically. It is
 now almost 2 years later and I am still no further in knowing what is
 going on. I ahve many of the symptoms of Hyperparathyroidism, i.e.
 severe gerd, osteoporosis, kidney stones, LVH (heart) up and down high
 blood pressure, sleep problems, calcified myocardium (sp) and thhe
 lsit goes on.
 I see my third new endo on Wednesday. I am so discourgaged as the Best
 test to see a parathyroid adenoma is the 99T Nuclear Setamibi test.
 This also showed the right lower parathyroid tumor. Yet, my serum
 calcium is very normal (8.7-10.2) thus confusing both the doctor and
 the patient. They have done several Ionized calciums and they are
 always one point off of low normal. Makes no sense.
 I have been on 50,000 Units of D, five times now. It barely brings the
 D up. Forget the sun with me...it does nothing. My Celiac test was
 normal. The only change I see of recent is that the potassium levels
 are low normal......3.5. In the past they have always been 4.3 which
 is great!
 All of the above should be classed under" Mysterious Disorders".
 

by matd22, Oct 05, 2008 09:50AM by matd22

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matd22
Female
NJ
Member since Dec 2007
Mood: matd22 ...

, less than a minute ago
I can tell you some of my symptoms with a test result of 8 then up to
85 back down to 14--------
bone pain in the foot and lower leg,
wrist and shoulder pain
thumb pain, neck pain, mostly generalized bone pain. Any other Fatigue
or depression or other problems present I cannot attest to but I do
have along with thyroid problems (for years). However I took vit. d
and it went up to 85 then I went on maintenance dosage of 1000 mgs a
day and it went back down to 14. so I am back on the 50,000 dosage as
per doctor, I am considering an endo next to look deeper into symptoms
as I feel there is an underlying reason such as the body not absorbing
vitamins and minerals properly because I certainly take enough of
them. Allopathic doctors do not address how the body really works they
only look at bits and pieces.
I hope to find an endo who will check to see WHY vit.d3 is bouncing
around. I will report results soon I hope. Good luck with your quest.
I know vit d can wreek havoc. The pain is unbearable at times. I take
Vicodin to help with that but it really never goes away, and just
comes on really out of the blue when it hits hard. It is depressing
yes for sure.
I do have severe A/O in shoulders and neck so that does no help
situation with bone pain and it is sometimes difficult to distinquish
one bone pain from the other.
I wish you best of luch.Hope you find the right doctor. and make sure
They are open to your suggestions to different tests. (do your own
research !!) or try another doctor !!!!!! Good Energy to all. 

by maddyjo, Oct 05, 2008 10:57PMTo: all I too was recently diagnosed
with d deficiency and have been treated with 50,000iu of vitamin d
very sucssessfully. My internist said all I need is 400 iu of D daily
and some sunshine which I never got before. I work alot inside. I was
diagnosed with HYPOthyroidism the same day as the test was done for
the vitamin d deficiency...My doctor did not tell me that the two were
linked. I noticed here in the thread that alot of you are mentioning
thyroid problems (spcifically parathyroid) as being related. Does
anyone know if HYPO thyroidism could be related to this d deficincy as
well?????? If so at least I will feel like this may be a reason for it
(besides the lack of sunlight) Thanks Maddyjo 

by matd22, Oct 06, 2008 11:25AMTo: maddyjo I see many references to
para thyroid and I intend to have mine checked out by an endo. I no
see a Rheumatologist, he found the problem when I complained of bone
pain. Your Dr Probably would not tell you the two are linked b/c tey
do not know---unless they do a complete work up with horomones,
regular doc won't go there, some endo docs don't go there either--do
your home work before visiting the doctor.when you go suggest the
tests that you want performed. 

by maddyjo, Oct 06, 2008 07:39PMTo: matd22 thanks....I guess I should
see an endo. I was not going to, since my internist got my d levels
back to normal and my thyroid levels as well with synthroid. He just
said to come back in 6 months and he would re-test the d levels and
thyroid hormones. I guess they don't want to recommend a specialist if
they think they can help... Probably they do not want to loose a
patient to other doctors....hmmmmm 

by matd22, Oct 07, 2008 10:08AM if your d levels start to bounce back
and forth then it worth investigating further. Because Vit D3 is a
hormone then it stands to reason it should be left to a endo to
investigate why your body is reacting the way it is, it is not just a
matter of ---fill-er up with some vitd-please especially if it
fluctuates. I guess once it is regulated then an internnist can
monitor. Hey isn't this why we have specialists now---'cause your PCP
just can't know it all?? 

by BigFree, Oct 14, 2008 01:46AMTo: all I had most of the symptoms
people have expressed about having a Vit D deficiency. Let me tell you
how my doctor found that out and what be related to why I have that
deficiency.

I went to him with the major complaint about my gut. I would get a
bloated and very full feeling in my gut just eating a few bites of
almost anything. It also hurt pretty bad. The secondary symptoms I
also complained about were minor headaches, 'fogginess', loss of
memory, minor joint pain, facial swelling(especially around the eyes),
decreased libido and irregular bowel movements.

My doctor took me seriously and ordered every blood test the lab
offered; I saw him check every box on the checklist! :)

My tests came back and they indicated 3 things:

1. Helicobacter Pylori infection in my gut.
2. Signs of decreased liver functions.
3. Severe vitamin D deficiency.

I'm hoping they are all related. He put me on antibiotics for the
infection and prescibed 1000 IU daily of vit D. He will re-evaluate me
at the end of the two weeks I'm on the antibiotics. I'll post an
update when I get one.

Thanks to all who have posted in the past. This kind of info is
invaluable in helping people figure out what is wrong with themselves
since it is increasingly difficult to find doctors willing to dig down
to find out what is really wrong with people. It seems if it's not a
simple cut and dry case, they have no time to put into it. Maybe it's
the insurance companies fault. They want to reduce costs even at the
expense of sending a patient away that is in pain. I guess as long as
you don't die, they are not liable for providing insufficient care.
All I can say, is to not give up when seeking medical attention. Be
persistent. Do you're own research. find out what tests your doctor
should order and then give him the symptoms you have to make valid his
ordering of that test. Help him/her out as much as you can and you'll
likely get that in return. Also, don't disregard their suggestions on
what you should do. Follow their directions and let them know that you
did.

 When you are more proactive about your own health you are more likely
 to get assitance along the way.
 

by lilo933, Oct 25, 2008 10:44AMTo: all i had been very tired,
sleeping 9 hours for the past several months. found to be low in iron.
got levels to normal but still felt the same. found to be vitamin d
deficient. was prescribed 1.25 mg ergocalcife once a week. found
myself with heartburn from it. it took a while to realize it was the
vitamin d that did it. i was 7, now am up to 27. i thought something
is strange that my vitamin d is so low. i asked to be tested for
celiac disease. it came back negative. i then just started to take
myself off wheat and gluten. it is day 4 and i feel much more energy.
so i think i have gluten intolerance which affects my body's ability
to absorb vitamin d. my usual diet has foods with vitamin d and i walk
outside everyday for over an hour. i will continue with being
wheat-free and see how it goes. i think it is an underdiagnosed
problem that many people have. i'm not absolutely sure i have it.
however, it was not on the radar of my doctor. i knew something did
not feel right and some research on my own.

 

by dankou, Oct 26, 2008 08:55AMTo: all by dankou

Jun 18, 2008 07:29PM
hi everyone, i'm 45 M i've been having strange symptoms since last
summer. it all started with a strange itch the came the dizziness and
bone and muscle pain, burning sensation sometimes in my arms legs and
face. my family doctor requested all kind of blood work to make story
short i had low vitamin D ( 12 ) for the first month and a half he
gave me nothing even though i was dizzy and on pain all the times he
said it's no cause for concern, then a month and a half later he give
me vitamin d 50.000 units once a week. i got better but toward the end
of the week i begin to feel worse agin as the dose wear out. i feel
there's something else causing the vitamin D deficiency but my doctor
doesn't agree. i'm thinking about going to the ER i'm sure when my 13
weeks prescription run out i'll be back to square one.

update

 hello again , 4 months later my vitamin D level is @ (77) now most of
 my symptoms are gone. i still feel dizzy from time to time. currently
 i'm taking vitamin D (1000 IU) daily, my doctor suggested i stay on it
 for now, i dont know if this's the end of it .
 

by matd22, Oct 26, 2008 08:46PMTo: dankou Sorry your dr took your
symptoms so lightly. Some dr's are just learning of the extent of the
Vit d deficiencies, and most don't know the pain that accompanies
it.The strange part of the deficiency is that it can fluctuate and so
you should be aware of your symptoms retrurning and see that the dr.
re-tests you, If he does not cooperate, see another doctor. There is
an underlying reason when it see saws so you should be informed. Do
not rely on the doctor to do all the research. good luck.
Mine returned a few months later--but hit a different set of
bones,---go figure--- 

by SpasmQueen, Nov 04, 2008 06:41PM Although I am so sorry about what
you are all going through, I am delighted to read all these posts
because it looks like we have so much in common!

I have had a very difficult year. Winter 2007 I caught a cold that led
to ear infections, bronchitis and sinus infection. I was extremely ill
for 2 months and it took a lot longer to fully recover. My spleen was
removed after a car accident so I'm immunocompromised and typically
get very sick, but this was definitely the longest lasting infection
I've ever had. I'm wondering if a virus can cause the symptoms I'm
having.

But not only that, my job was very unsafe and I experienced some
traumatic events so I quit. This was hard for me emotionally and I'm
wondering if PTSD triggered these symptoms. Since I resigned I've been
under a lot of stress trying to find comparable pay in my field or
other meaningful work. But not only have I NOT found a decent
opportunity, I'm actually unable to do my job because I've been
injured and it's recurring so I'm hoping to go on disability until I
regain my strength.

I know stress contributes to illness so I'm wondering how big a role
it plays with my symptoms. I've delved into some interesting research
in the psychoimmunoneurology.

You see, I hurt my neck doing heavy lifting 3 times this past year.
The third time left me debilitated for 3 months and I went through
Physical Therapy and still see my chiropractor regularly.

After my illness and while I have been recovering from this neck
injury all kinds of crazy symptoms flared up and I'm still struggling
to figure out how to help myself so I did some blood tests.

Turns out I had symptomatic sub-clinical hyperthyroidism for a few
months but it recently went back to normal. I never took medication
for this. I still have the symptoms.

I'm showing low Vitamin D (19) and on regiment of 50,000IU weekly for
3 months. It's been 3 weeks and I'm not ready to say I'm feeling
better because my symptoms come in unpredictable waves. I may feel
decent today, but there's no telling how I'll feel in a few days.

Especially difficult to deal with is my muscle stiffness, aches and at
times debilitating spasms in my neck and back. I also have strange
jerks, twitches and pulsing in my muscles. Twice my esophagus was
spasmism like crazy. These symptoms cause great anxiety in me. I have
strange tickling sensations on my skin that make me itch and jerk
around and keep me up at night. I also have hot flashes and other
menopausal symptoms like restless legs but I'm only 31 and my FSH is
normal. I also have IBS and it's just awful at times.

My fatigue is just awful too. I was a very active person before all
this but now walking my dog a few blocks gives me headaches and
exhausts me and even hurts me. Walking up stairs hurts! I feel like an
old lady! I've also fallen into a deep depression because I'm not
myself anymore. I so terribly want to feel like me again. I want to
jump around and dance and run around and be happy again, but all this
stiffness, pain, irritability and fatigue won't allow me.

And finally the "brain fog!" It's the worst! Somedays I cannot think,
focus, concentrate or communicate. I can't compose an email or make a
phone call. I can't do anything really but sit and stare. It genuinely
feels like a fog rolls in and stops the good synapses in my brain from
firing leaving me irritable and angry and frustrated for days at a
time. I know this is not just depression.

I have an endocrinologist appointment next month and am on my way to
see a chinese medicine/acupuncturist tonight. I'm hoping to find out
more answers and ways to deal with this.

I'm sure I'm suffering from Chronic Fatigue Syndrome and Depression,
and I haven't ruled out Fibromyalgia yet.

But I'm not sure if these conditions popped up because of my stress,
my injury, an illness from last Winter or some underlying disease that
keeps rearing its ugly head by throwing off my thyroid and vitamin
levels. Whatever it is, I want my life back and a decent medical
explanation. I can't believe how much you have to advocate for
yourself and how difficult it can be to get certain tests! I can't
believe doctors don't offer more service to help rule out
possibilities.

A lot of you were thinking about seeing a specialist. Please let us
know what your endocrinologists and gastroenterologists have said.

Thank you for reading my post! 

by JackieCalifornia, Nov 05, 2008 01:47PMTo: spasmqueen Think about
it being Lyme disease. There are some good threads on Lyme hereabouts.

...and hang in there! 

by justkim, Nov 10, 2008 08:10AM So frustrated by all of this. I was
diagnosed with Vitamin D deficiency three years ago. I suspect it's
been a problem for much longer. Have had numerous tests done;
Parathyroid, Autoimmune Diseases, Fibromyalgia, CFS, Food allergies,
Lyme disease, Celiac, Candida, Pernacious anemia, Blood calcium, Bone
density scan, etc. All normal. Kidney function is normal as is
Thyroid.

After taking 50k of vitamin D, 10 doses for 20 days, my level rose to
27. This was after waiting 6 weeks to see if it helped. I have been
taking 6000 units daily for 5 months, now have a level of 32.5. Have
also been diagnosed as anemic, with an extremely low blood saturation.
Can't tell if my shortness of breath is from the anemia or low vitamin
D. Have also had a variety of procedures; Endoscopy, colonoscopy,
lower bowel exam with barium. All have come back normal except for
some benign polyps that were removed. Doesn't explain the continued
gastrointestinal problems and other symptoms that persist. Night
vision is pretty bad; cracked my eyebrow open the other night. Also
have had 5 broken bones, (fingers and toes), in the past two years.
Gastroenterologist is baffled by the gastro problems and now is
looking at pancreatic insufficiency or bacterial overgrowth as a
possible cause. If my iron doesn't improve, i.v. iron is next on the
list.
Hope no one takes offense at this, but sunshine is not the end all be
all for vitamin D deficiency. At least not for me. I spent quite a bit
of time in the sun while taking the mega doses of vitamin D. It didn't
help but added some truly attractive blotchy brown spots to my face.
Lovely.
Going gluten free has helped somewhat, but not much. Any ideas,
suggestions on what to do next? I am encouraged with my new doctor;
the last one wanted to give me antidepressants. I would still have the
same symptoms, but would have felt better about it. (?) I don't mean
to sound like such a grouch, but this is really wearing me out. For
those of you dealing with this, you know how hard is it to keep family
motivated and relationships on track while living with this. A social
life, volunteering, etc. just seem out of reach at this point. I'm
ready to be well... 

by matd22, Nov 11, 2008 07:16AMTo: all Frustrated...I also wanted
answers to my symptoms that kept returning every few months. My
rheumatologist narrowed it all down to anti-seizure medications. So
let it be known that anyone taking any anti seizure medications may
have a decreased vitamin D level. I take topamax for migraines. I will
continue to take them for migraines as they help. But my Doc says that
the maintenance dosage should be higher like 2000 units instead of
1000 daily. Let's see if this works for me. But anyone else... please
be informed of your other medications and aware that it is not always
about sitting in the sun. 

by madgeOwens, Nov 23, 2008 01:25AM I have read that parathyroid
disease can cause increased PTH and decreased
Vitamin D.
www,parathyroid.com has more info for all of you. 

by shorty411, Nov 26, 2008 11:28PMTo: to all I've read all of the
comments and I have many of the same problems. I did hear this on some
late night infomicial that the only way to get Vitamin D from the sun
is through our eyes so if you wear sunglasses while in the sun you are
most likley not getting enough Vit. D. As for me I'm very lactose
intolerant and I've been seriously avoiding the sun for the last 10
years. So I'm not surprise to be Vit. D dificient. I am looking
forward to starting my 50,000 units of Vit. D and am looking forward
to feeling better. I'm thankful for my good days and as soon as we
have a sunny day in the Pacfric NW I will make a point to go outside
and sit in the sun to read a book. and keep my sunglasses off. Thank
you all for sharing it has givien me many insights to discuss with my
Doctor. 

by matd22, Nov 28, 2008 12:49PM UVB rays are the ones that burn the
skin and can damage the eyes. Combined with cold wind and snow, UVB
has the potential to cause snow blindness (photokeratitis), a
temporary (lasting 12 to 48 hours) but painful problem in the cornea
of the eye.

Although not all scientists agree, there is some research that
suggests that daily exposure to UVB in very bright sunlight over a
period of many years may cause cataracts, a gradual clouding of the
lens of the eye.

Don't know what info mercial you watched but DONOT believe that your
eyes need sun directly for vitamin D---wrong, wrong, wrong, you surely
will be in big trouble down the road.....Do protect your eyes in the
sun always, and get vitamin D exposure on your exposed skin for 10
mins per day! Arms etc. 

by trace1973, Dec 17, 2008 12:24AM After my 2nd child was born my
right shoulder "went out" from carrying him in is car seat and perhaps
from the strength training I was doing. I was diagnosed with a rotator
cuff injury but no tear. The year my son turned three I was still
going to the Chiro. because the injury would flare every once in a
while.
Then my LEFT shoulder started hurting. But this time it was different.
It was (is) like an intermittent deep joint pain. This pain was much
worse than my rotator cuff problem!! I could hardly function when it
would happen. Then I stared to get headaches that would start in my
neck and wrap forward up my head to my eye and temple. The combination
of these symptoms left me depressed and fatigued. It also put a stain
on my relationship. My husband would get frustrated because I was
always complaining to him. He started saying that I was making my body
have pain because I was stressing so much. I went to the Dr. and he
did a bunch of test and an MRI on my shoulders but found nothing.
Well, after prompting from my Dr. and my husband I went on
antidepressants. Well, I don't "stress" as much but I still have the
pains. Dr. put me on vicodine for the pain but it is only helping the
symptom. I want a reason and a treatment. At that point, though, I
chalked it up to strain from my previous shoulder injury and kept
going to the chiro.
Now...however, the list gets longer. My arms, hands, legs, back and
rib cage hurt. (both muscle and joint) I also have swelling, numbness
and tingling in my toes and fingers. When it flares up I get a low
grade fever never above 100.2. Another weird symptom is body twitching
which happens mostly when I sit still. It is like my reflexes are
being stimulated and I twitch. This also affects my throat. Sometimes
my esophagus spasms and I cant get in air or swallow. (kind of like a
"whoop" from Whooping Cough.) Thank god this lasts for only a few
seconds. The last straw was when I started to have shortness of
breath. I can somewhat handle pain and muscle spasms, but when I can't
breath I get panic attacks! SO I again went to the Dr. The Dr. did
some blood tests and tested my protein levels. He said low protein
would cause swelling with numbness, tingling and essentially breathing
problems. (dont have that result back yet) I just didn't feel
satisfied with the Drs reaction. He actually asked me if I was eating
a proper diet as if all of this was my doing. I guess that annoyed me
because I am a very healthy eater.
Anyway, I thought perhaps my symptoms were hormonal so I started
looking on the web for answers and came upon this site.
I also saw a web site about a disease called Syrinomyelia. The info
about Syrinomyelia was very interesting. There was some info about it
being triggered my a trauma. When I read SpasmQueen's post it made me
think of this disease. I just thought it might help. Also, there was
another disease that has some of my symptoms called Acute Intermittent
Porphyria.
I don't know if it is hormonal, vitamin D or any other problem.
But, the one thing about most of these posts that truly bothers me is
the reaction of the Drs. They treat the pain casually, they seem to
dismiss the anxiety we feel as well as the loss of living that we all
have. I have two kids, a job, a husband and a life and I cannot have
these symptoms without answers. It seems as if many of you are
frustrated as well. As I can't always expect my family and friends to
hear complaining all the time with, but I want my Dr to take me
seriously. I feel very isolated. I am only 35 - way to young for all
of this @#%&!
NOTE: Even though antidepressants did not help the pain they do help
me deal with it a bit better. 

by JackieCalifornia, Dec 17, 2008 02:50PMTo: trace1973 Have you
thought about getting a second opinion?

I too bounced around very ill for a couple of years and got the
shrug-and-a-drug-sample routine over and over.

Finally found a doctor who ran the right tests and I'm getting treated
now, but it took persistence.

Don't give up! Don't give up! Don't give up! 

by avasmommy01, Jan 09, 2009 03:26PM After the birth of my daughter in
January 2008 I've been on a steady decline. I've felt so alone and
frustrated. No doctors seem to want to help. I've had them tell me I'm
just anxious/depressed. I have been diagnosed as Vitamin D deficient.
I tried the 50,000 IU, but it made me worse. I've just started taking
2000 IU of D3 everyday. I also have spondylolisthesis L4/5, an annular
tear at C6/7, and a small cyst in my thyroid. These were recently
diagnosed via MRI. So I live with chronic pain.

I have so many of the symptoms listed on this site. Right now I'm
having a "flare" of low-grade fever (99.8), joint pain, my ears NEVER
stop ringing, and I have constant sinus congestion, and fatigue. I'm
not suicidal but sometimes it's hard to imagine living this way for
the rest of my life. I've had many tests and they all come back
negative with the exception of the Vitamin D deficiency. I've seen my
primary care, orthopaedist, gyn, neurologist. I have to see my primary
care doc again to see about getting an ultrasound of my thyroid to
check the cyst since I have a family history of thyroid cancer
(paternal GM).

It's comforting to see other people are going through what I am going
through. Although I wish none of us were... 

by calwo, Jan 10, 2009 06:27PMTo: All Everyone here, please see the
following web-site with important Vitamin D information:

http://www.vitamindcouncil.org/

See the section on Pharmacology. (Look at all the other sections too!)
Many of you have said your doctors have prescribed Vitamin D. It may
be that they have you taking ergocalciferol, which is not as potent as
cholecalciferol, according to this site. You do not need to have a
prescription for Vitamin D. This site says the best Vitamin D to take
is cholecalciferol, which is a Vitamin D3 that is available over the
counter. Do not take Vitamin D2.

The site says - SUPPLEMENT WITH CHOLECALCIFEROLThe important thing to
know: cholecalciferol is the vitamin D to take. Do not let your doctor
give you any prescription medication for vitamin D. The only exception
to this is ergocalciferol. Although with ergocalciferol you must
remember you are taking a drug—not a vitamin—that does not normally
occur in the human body.

This site also has information on how to get testing. They recommend
that if you are going to self-supplement you should get tested
periodically. Some people will not need to supplement in the summer or
contingent seasons. The only way to know is to test.

Also, some of you say that you get sun. This site explains the
relationship between latitude and adequate sun exposure. Also,
sunscreen blocks Vitamin D. You can probably never get enough Vitamin
D from diet alone.

Educate yourselves. Your doctors may be less educated about it than
you can be. Try to find a doctor who knows a lot about Vitamin D. It
is your health. 

by calwo, Jan 11, 2009 01:58PMTo: All It sounds as though some of your
doctors think that supplementing you for 8 weeks or so with the 50,000
iu prescription, then continuing with a 1,000 iu over the counter D3
is enough. If your levels drop with the lower dosage it is my opinion
that you are not getting a "bad" bottle of D3. You may not be getting
enough D3. Depending on your latitude and season you may need more.

Go to the Vitamin D Council site (see post above.)

Also, I have heard that anti-convulsants such as Neurontin
(gabapentin) can block Vitamin D. I do not know if Lyrica would fall
into that category, so check.

And again, test, test, test.

 If you believe you cannot absorb vitamins intestinally the Vitamin D
 Council site (under Links or Resources) has a link to sun lamps.
 

by calwo, Jan 11, 2009 02:05PMTo: All And another thing.

See the Vitamin D Council site (look above for link) and make sure
that your doctor is testing you for the correct type of Vitamin D. You
do NOT want the 1,25-dihydroxy-vitamin D test. You DO want the 25(OH)D
test.

See this link for complete information:
http://www.vitamindcouncil.org/health/deficiency/am-i-vitamin-d-deficient.shtml

Discuss it with your doctor if necessary. 

by polishgal, Jan 22, 2009 05:55AMTo: all I too am vitamin d
deficient. Have most of the same symptoms. I have had breast cancer,
colon polyps, joint pain, arthritis in knees, shoulder and thumbs.
(surgery on knees and both shoulders) I also have an underactive
thyroid and take meds for that. My vitamin D level is less than 4. In
December, I started taking a perscription for 50,000 units once a
week. I was given a script for one year. I've been told by my GYN to
have my doctor retest for vitamin D levels in about three months. I
live in the northeast where we don't get much sun. When taking
antiboditics, I usually am prescribed levequin because I am allergic
to so many antiboditics. My doctor sent me to an allergist. He
informed my doctor that levequin is best for me. I also have been
tested for RA and thankfully that turned out negative. When I get home
from work, all I want to do is rest. During the summer I was walking
everyday, but now I don't have the energy to go to the mall and walk
it like I did last winter.
Please any help would be appreciated. 

 by Mazat, Jan 25, 2009 09:23PM After years of testing and going to an
 Endo for what I thought was thryoid problems (have all the symptoms)
 nothing was coming up, levels normal, except prolatin level, well now
 they are fine, but something new started...kidney problems and stones.
 I just got my lab results back and I am vitamin D deficient, but she
 is also testing for PTH (parathyroid hormone). I looked it up
 (hyperparathyroidism) and this could be everybody's problem. It is
 something no one ever thinks of and is commonly misdiagnosed.
 They start you off with vitamin D therapy and if in 12 weeks I am not
 responding, it possibly means surgery to remove something that is the
 size of a grain of rice (well normally, but with symptoms, means it is
 enlarged) We have 4 of them. They say after it is removed you feel
 almost instantly better and the bone and muscle pain go away within 3
 to 4 weeks. There is a lot of info out there about it...look it up!
 Worth a shot to talk to your Doctor about it!
 

by Rickey523, Jan 29, 2009 11:20AMTo: All Hi I am a 55 year old male
and have struggled with fatigue for several years now. Other symptoms
include irritability, lack of focus, brain fog, dizziness, some aches
and pains in the hips and knees but not severe like most on thie
forum. I have been to several Drs. with no luck. I have been on every
depression med you can think of with no impact. I have been going to
an Endo thinking I might have thyroid problems. I just saw her today
and my VIT D was 7.4. I don't know yet but I assume this is the first
time it has been tested, I will verify that later. She perscribed
50,000 IU Vit D once per week for 12 weeks then 50k once per month.
One question here I read something about D2 and D3 and that D3 is the
better one but the perscription is D2. Any clarification would be
appreciated.

Has anyone else had similar symptoms as noted I don't have the severe
bone and muscle pain that most others have noted. I am so tired of
feeling bad which I am sure just compounds the problem. I am going to
a rheumatologist in a couple of weeks who supposedly deals with CFS. I
am not sure if I have CFS I function every day even thought most days
its not easy and even job 8-10 miles a week in good weather.

Members thoughts would we welcome. 

by lilo933, Jan 30, 2009 09:02AMTo: Rickey523 consider getting off
gluten and dairy. i had fatigue, joint pain in left hip and left hand.
was sleeping over 9 hours and still feeling tired. had brain fog. my
vitamin d was 7. my doctor also prescribed high doses of vitamin d
which my body could not process. i did some research.
i got myself tested for celiac which was negative. then i took myself
off gluten and dairy. turns out i am sensitive to the proteins in
both. am feeling much better. being gluten and/or casein sensitive can
make one unable to absorb certain nutrients. it is an effort to stay
away from bread and wheat of any kind but my vitamin d levels are
normal now and i feel more like myself. the joint pain in my hip which
i had for 3 years went away in 3 weeks, the same day the pain in my
hand went away. its been 3 months and i am still pain free. this may
not be what you have but it might be worth a try. 

by Rickey523, Jan 30, 2009 09:49AMTo: lilo93 Wow glad you are feeling
better. Did you do anything else during the time off gluten and dairy.
Sounds like you tried the high doses of D with little or no impact.
Did you stop the D? 

by lilo933, Jan 31, 2009 09:11AMTo: Rickey523 i did take vitamin d but
since i could not process high doses of it, i did not take any for
about a week. then i started with 400 iu and slowly built up to 4000
iu a day over a period of 2 months. i did not do anything else. i am
on 2000 iu of vitamin d now. look up gluten and dairy sensitivity and
you will see info on elimination diets for gluten and dairy. you stay
off these things for 2-3 weeks and then add one thing back to see how
your body reacts. then you take everything out again to clear the
slate and try another thing. the reaction is quite clear if there is
one. 

by JackieCalifornia, Jan 31, 2009 02:12PMTo: moderator Would you
consider archiving the older posts on here and/or starting a new
thread? This is so unwieldy and takes so long to download...and I have
a fast computer connection. 

by cgonzo9, Feb 04, 2009 11:34PMTo: Anyone
I'm 18 years old and for the past 3 or 4 months I've been dealing with
fatigue (I sleep anywhere from 8-16 hours, no matter how long I sleep
I'm still tired), muscle pain, joint pain in my knees and hips, back
pain, I'm constantly sick (colds). Due to the fatigue and aches my
general doctor thought I had mono. First we did a mono spot test and
it was negative. I went back a couple weeks later, still no better, he
told me I probably did have mono the test must have been wrong. He
didn't do a blood draw because he was fairly sure it was mono and I
should just sleep it off. A month or so later I went back no better
and they drew blood I tested positive for epstein barr but it wasn't
acute. He referred me to a rheumatologist to check for arthritis. I
finally saw this new doctor and he thought maybe reactive arthritis
and did a full panel. I got the results today, I have a severe vitamin
d deficiency (I'm not sure the level) and like a lot of people here
they started me on 50,000 IU twice a week for a month and 20,000 IU
once a month after that. This has been so bad that in the last 3-4
months I didn't go to school. Thankfully I graduated early in the
beginning of January, but I missed almost my whole senior year.

My problem is, the doctor wants me to take the supplements and come
back in 6 MONTHS. They didn't say anything about an underlying cause
which concerns me. I do live in a place with little sun in the winter
but no one else in my family that gets just as much sun as I do and
eats the same as I do have this problem. I don't what step to take
next and I'm sick of being sick. Any ideas? 

by Encephalomalcia, Feb 04, 2009 11:55PMTo: pain47 Shooting pains come
from nerves. Sounds to me like you have pinched nerves in your back. A
chiropractor can help you with this. When the low back nerve is
pinched there can be shooting pains down the leg either on the inside
or the outside or down the middle all the way to the end of the big
toe (if bad enough). The spinal manipulation of the low back is easy
usually takes a lumbar roll. Your chiropractor has to be strong enough
to support your weight when doing this. Make sure when you make the
appointment that the chiropractor does lumbar rolls because some do
not because they are unable to support the weight of their patient.
Depending on which nerves are affected will depend on your symptoms
and where the shooting pains will be. When nerves are pinched they can
persist with a feeling of hot, water running, or shooting pains. Ache
requires heat and shooting pains require ice. If you are unsure what
kind of pain it is ice is always safe where heat can do some damage if
acute. It is true that if you are lacking calcium and/or vitamin D
your bones will hurt extremely bad. This has happened to me. Have you
had a bone density test? Never too young for a bone density test
especially if you have lot any height. Measure yourself to make sure
that you are the same height that you were. Also, lay on your back
flat and raise your legs up in the air. Are you legs both the same
length? If not, your hips are out of joint also. Hope you are feeling
better soon. 

by JackieCalifornia, Feb 05, 2009 02:54PMTo: cgonzo9 Is it possible
you have Lyme disease or another similar infection? I have Lyme plus
another disease, and my Vit D is very low -- no one knows why, and
frankly the doctors don't seem to care. Low Vit D is a symptom, but
for some reason doctors treat it as a disease itself. It would be like
giving someone with a broken leg crutches instead of setting the
break. Go figure.

If you live in or near woodsy areas, you are at risk for Lyme. Doesn't
mean you have it, but it's possible and worth checking out.

Lyme is something doctors have a hard time recognizing, because there
is a serious difference of opinion in the medical community about how
to diagnose and how to treat Lyme. Regular doctors usually blow it
off.

There are some Lyme forums on this website, you might check in there
to find some information for a doctor, sometimes referred to as an
'LLMD', meaning a 'Lyme-literate medical doctor' who specializes in
Lyme.

Your symptoms sound much like Lyme ... but I'm no doctor.

Good luck to you -- don't give up. 

by JackieCalifornia, Feb 05, 2009 03:24PMTo: cgonzo9
http://--------------/SupportGroups/UnitedStates/Idaho/

If you copy and paste that link, you will find two people in Idaho who
are keyed into Lyme-related stuff. One is located in Boise. You might
contact them and see if they can help you find a Lyme literate doctor
-- that is, one that understands Lyme and the difficulty of diagnosing
it.

Also there is a recent book called "Cure Unknown" about Lyme that
explains the politics that are getting in the way of treatment, if it
doesn't seem right to you and your family that your regular doctors
don't have an interest in this possibility.

I'm not saying you have Lyme, but your symptoms are quite similar to
things other people report -- aches, pains, extreme fatigue --
especially among those in your age range who would not be expected to
have old-age ailments. 

by Louiehas3, Feb 05, 2009 04:48PM I had a total knee replacement back
in October 2008, and after that the nightmare began. I developed an
infection in the leg, and had to be readmitted to the hospital for IV
antibiotics. The blood cultures take forever and my infection couldn't
so they poured anything and everything they thought might help the
infection. It then killed my digestive tract and I dropped about 60+
pounds. I had so much pain in my body. My legs ached, my head ached,
my right side around my ribs, and even my arms ached. I couldn't sleep
because my muscles ached so bad even taking vicodin for pain. I can't
concentrate and I have had blurred vision from time to time. From
October to December I was hospitalized 5 different times. The last
time was when my kidneys shut down and I was heading for kidney
failure. Recently, I went to my primary and had a whole bunch of labs
done and to my surprise, they found out that my vitamin D levels were
not even a 9. On top of it, I have been on synthroid for years and now
they had to increase my levels again. Over the years I have had to
take as much as 400 mcg of synthroid. Yes that is a lot! I wonder how
long this vitamin D has been an issue? My knee replacement has been a
longer healing process because of all this and the vitamin D is making
it worse. Does anyone have skin and or hair problems from the vitamin
D deficiency? I have had problems with that too and wondered if it was
related? I am glad I found this website and hopefully I will be able
to get back from bad to worse. I am taking prescription vitamin D for
13 days, a green gel pill. Everyone else seems to have a different
dosage. Hope I am not getting too little. 

by violetteivy, Feb 10, 2009 10:43AM Hi, I have been diagnosed with a
Vit. D deficiency after experiencing muscle twitching, weakness, flank
pain, cramping, diarhea (diarrhea), headaches and EXTREME FATIGUE. I
am so frustrated because I've been on 50,000 I a week for a month now
and I am not getting better. All blood work, whcih was a lot, came
back normal, but I can't do the things I normally do. I have a special
needs daughter and can't take care of her like I did. I also work full
time, but can't for the past month. I am so frustrated because I am a
get up and go person and that has well, gone. I noticed muscle burning
at the gym and started sweating as soon as I started to work out. Now,
i can't do any of that. Walking up steps feels like a ran a marathon.
Needless to say, I am not just frustrated, but I am scared too. These
symptoms are SCARY! My dr. is good, but I don't think he's 'on it'
like he should be. He says that I might have Lyme as I had a target
bite 20 years ago and this could be from that so he's treating me with
anitbiotics. I start today. My lyme test came back negative, but he
still thinks it could be it. Any advice would be greatly appreciated
as I am really anxious to get back into life. that's why i know it's
not depression, I WANT to do things, I have the desire, but
physically, i can not. 

by breepo, Feb 13, 2009 08:43AM Im 16 years old and i have been
feeling sick for the past year. I have been out of school multiple
times and to the doctors. this week i recently visited the doctor and
and they took bloodwork and i had chest x-rays. this was the second
time they had done this. My doctor called today and said i was vitamin
D deficient. She said at my age (16) i should be at a level 40, and i
was only at a level 15. She said drinking all the milk in the world
wouldnt help but i would need to start taking 2 calcium a day and
50,000 millagrams of Vitamin D a week. In the summer i am going to
have to spend 10 minutes outside without sunblock on as much as
possible. I just hope this works! 

by cool1971, Feb 13, 2009 09:35AMTo: snowhitetiger Hi Snowhitetiger,
I have had some symptoms for lupus in the last 2 years
It turns out now that I have a positive ANA as well; although further
tests have not shown any evidence of any inflammatory or autoimmune
condition, but have discover a bad vitamin d deficiency.

My symptoms are mainly mild pain in joins and muscles, slight
inflammation of knees, specially when exercising (I stopped exercising
properly almost 2 years)
Extreme fatigue at times and general tiredness 90% of the time follow
by periods of feeling healthy enough -not like in the past, but good
enough- when I do more normal life.
Strong shivering cold sensations on my spinal cord from lower back to
the top of the back of head, going to shoulder plates. When this
happens I get extremely cold having to cover myself with a ridiculous
amount of cloths, I get very very exhausted, my legs become very weak,
my joins seem like they will melt and a general sensation of legharthy
takes over me. I go to bed and try to rest for a few hours.
This episode is followed by days or weeks when I would feel generaly
ill, with flu like symptoms, cold most of the time and lots of
fatigue.
During winter08 these symptoms cohabitated with dreadful chest
infections and I found life very hard. My lungs recovered now and I
have had a CT scan that was ok. I still get chest infections and
during this the cold shivering sensations in spinal cord, along with
the fatigue, weakness of legs and joins becomes a more frequent
feature. However this winter09 I only have got 3 chest infections and
I managed to recover from them after 3 weeks of each which is good
considering I have asthma and therefore my lungs are weaker.

Well, the vitamin D might explain the bone-muscle pain, my doctor said
yesterday and now I am on a 2 month treatment with tablets for vit D +
calcium that should make my pains in legs go away.

The other symptoms (the coldness in spine, etc) may get better,
although the doctor doesn’t associate them with the vit d.

My concern comes because i have now looked at a few lupus sites and
found a lot of answers for my symptoms (hair loss, extreme cold
sensations, extreme fatigue, bone pain, joins pain, etc)

I have even found on this site a comment of a certain symptom (feeling
like cold water has been spelled on your legs) described in the exact
way as it has been going on with me for the last 5 months. the lady
was a lupus.
On top of that, there is a lot of literature and research showing
links in between vitamin d deficiency and lupus, which my doctor has
not mentioned to me.

 

by cool1971, Feb 13, 2009 09:38AMTo: Violetteivy Hi Violetteivy,
Like you I do want to do hundreds of things as i used to, but my body
is so tired i feel extreme fatigue, and reading about lyme symptoms a
while ago made me think it could be related;
Now my dr has found I have an ANA positive (test associated to
autoimmune conditions -95%of lupus patients have a positive one) so he
is not looking at lyme. Since yours is negative, you are right that
perhaps your dr should be considering other possibilities as well.
I was told yesterday I had Vit D deficiency and that may explain my
bones, joins, and muscle pains along with my as well extreme fatigue
at times.

 I have posted a long comment to Snowhitetiger that it may be useful
 for you too, on any case I do sympathy with you and wish you all the
 luck and strength.
 

by SarahJ146, Feb 18, 2009 09:37AMTo: Everyone Boy am I glad I found
this post, it's finally where I "belong". I am a 31 year old female -
always very healthy up until June of 2008, apprx. 4 weeks after I had
my first baby, symptoms started setting in. Terrible - horrible joint
pain/bone pain/muscle weakness/extreme fatigue & exhaustion - this all
sums it up. It was crippling to say the least. After many many tests
and 3 doctors - they found I was severly vitamin D deficient. STarted
the 50,000 UI's daily for 6 weeks in December. Yes, I noticed
significant improvement in my symptoms and was just recently given the
100% approval bill of health by my endocrinologist. HOWEVER, I am
still noticing some symptoms - the same ones from when they were
really bad - they just arn't as bad now. I am still noticing fatigue
(never get a burst of energy or second wind), and pain in my
arms/hands and feet - only sometimes. Not all the time and it's still
better than what it was. I also have a lot of morning stiffness that
goes away in less than half an hour. Now, she told me that I am fine
according to her and if I want, I can see a rheumotologist but my GP
tested me for all of that stuff too and everything was negative. None
of the doctors felt that I had RA or anything like that and looking at
the symptoms, yes, some are similiar to RA but A LOT of them are not.
And after having this severe Vitamin D deficitency that caused all of
these problems, I find it very hard to believe that I also have RA. I
mean, the Vit. D did help significantly. Right now my Vit. D is at 45,
which is great, and I am taking 2300 UI's supplement daily - this was
told to me by my endo. So why am I still noticing some symptoms?? She
seems to have no idea as all the doctors. Any suggestions on what I
should do?? I wonder if the severity of the vitamin D cause permanent
damage to a couple of my bones but my calcium and ALL bloodwork is and
has been normal.
Help ?? Thank you~
SarahJ 

by Lenore38, Feb 18, 2009 02:00PMTo: SarahJ146 Maybe you have Celiac's
Disease. I was diagnosed with Celiac's in late August of last year and
have recently been tested and put on Vitamin D 50,000 UIs for 12
weeks; I then have to take 1500- 2000 a day afterwards. The problem
being; once I take the over the counter supplement; I have to make
sure that it is also gluten free - alot of your vitamins and pills are
NOT. Have your GPo or Endo check you for Celiacs. They can do a blood
test and then confirm with a biopsy. It is controlled with a STRICT
diet. But you would have to change beauty products, toothpaste,
shampoos, the way you eat - etc. 

by SarahJ146, Feb 19, 2009 02:55PMTo: Lenore38 Thank you. Actually -
my endo. is going to test me for that I think during my next
bloodwork. I don't know why she didn't do it yet, maybe she's waiting
to see what my Vit. D number turns up to be in a few weeks. She did
mention it though and said that it's very rare. I have been taking
over the counter supplements daily - 2300 IU's a day but since I
stopped the 50,000 IU's per week about 6 weeks ago, I have contuned to
feel worse and the 2300 helped a little, but is not sustaining. I know
my Vit. D levels have dropped cause I can feel it. I just recently
(yesterday) started taking 3300 IU's daily to see if that helps and/or
makes any difference. Cause obviously the 2300 isn't cutting it. I
know that you can take too much Vit. D but that it has to be a crazy
amount daily over a long period of time - right? Thank you for
responding. I woke up today feeling better, less stiffness but weird
pain only in my right foot - it's so annoying. I will check for the
gluten-free stuff. 

by SarahJ146, Feb 19, 2009 02:58PMTo: Lenore38 Also - may I ask how
did you know to get tested? Were you in a crazy amount of pain and did
you just have a baby? Looking back I think I was slightly Vit. D
deficient before I got pregnant, just cause I was so tired all the
time but I am shocked at how much pain this can cause. It blows my
mind because it affects everything you do. Did you have a tremendous
amount of pain? It took 3 doctors to figure out what I had and to even
think of testing my Vit. D. levels 

by briarosa, Feb 22, 2009 12:08AM My last level of vitamin d was 6. My
doc said it`sw the lowest # he`s seen on any of his patients. I am
also B-12 deficient. I have Crohn`s Disease and now newly diagnosed
ankylosing spondylitis. Which one caused the D defiency??? I also love
the people who comment we don`t get enough sun. Sorry but that is not
the only cause of D defiency, it`s plain ignorance to say we don`t get
enough sun. I get plenty. Then why am I B-12 defienct too??? and my
potassium get s low??? not enough sun, huh, lol . No it`s underlying
diseases that also can cause the problems. I have so many things wrong
with me and so many symptoms it`s ridiculous, lol. 

by Jing08, Feb 22, 2009 03:05PMTo: All After two years of searching
for what ails me, I was diagnosed with Vitamin d deficiency. I am
hoping, after reading letters in this forum, that Vitamin D
supplements will put an end to this.

I experience: constant lower back pain, hip pain, tingling in feet,
legs and hands, a heavy feeling in my upper arms, stiff neck with
pain, a burning/tired feeling across my shoulders and particular
difficulty rising from a chair or bed and trouble ascending stairs.
All of this is at its worst in the morning.

Would you describe how you feel? Thank you. 

by JackieCalifornia, Feb 23, 2009 04:41AMTo: Jing08 Well, have you
considered Lyme disease? Your symptoms sound similar, though Lyme
affects everyone who has it differently.

There is a Lyme Disease Community here on medhelp; you might go visit
and see if you find any help.

There seem to be a lot of people with Vit D deficiency, but I haven't
yet heard anyone say their doctor treats it as a symptom of an
underlying condition instead of a thing in itself.

For instance, if you were limping when you walked, wouldn't a good
doctor want to find out WHY you were limping and fix it, instead of
just giving you a leg brace and telling you you'll be fine now?

How can there be such an epidemic of Vit D deficiency? Is it that drs
didn't used to test us for it and so didn't know we were deficient?
Any ideas out there? 

by SarahJ146, Feb 23, 2009 08:46AMTo: Jing08 and JackieCalifornia
Jing08~
I had a lot of the symptoms that you describe but not tingling. I was
SO stiff everywhere, to the point that you can hardly move. It was
worse than when I had been in a bad car accident a couple years prior.
Also - my arms were very heavy, that was because of the muscle
weakness I had. It hurt to shake my son's bottle of 6 ounces. And when
he was 8 lbs., I could barely pick him up - felt like I was trying to
pick up 50 lbs. My fatigue and exhaustion was beyond anything I had
ever felt before and I had tremendous bone pain - particularly in my
feet/ankles. And yes, just like you, mine was way worse in the
mornings. and by 7 or 8pm at night, I really didn't have anough energy
to do much. As soon as my son went down for the night, I followed.
JackieCalifornia~
I agree with you and do not understand why my doctor is just treating
the Vitamin D def. and doesn't seem to think that anything is causing
it, which kind of scares me (will be looking for a new doctor). I
don't want her to be treating a symptom and not the cause. But maybe
that's all it is - she just hasn't looked into it enough to where I'm
comfortalbe. When I asked her why she thought this happened - her
response to me was "malnutrition". That is total B.S. and never even
asked me my diet. I am extremely health consious when it comes to my
diet and I eat better than most people I know. So if I am Vit. D def.,
then everyone I know should be. Also - no - doctors do not routinely
test for Vitamin D. In standard bloodwork - it's not standard. It took
3 doctors before anyone thought to check my vitamin D. It was a
terrible experience and completely unnecessary in my opinion. I am
taking apprx. 4,000IU's daily and it's helped so much - after I did
the standard 50,000IU's weekly for 6 weeks. As soon as that stopped,
my symptoms started returning. I don't think my doctor is taking this
seriously and I think that she has no idea how much pain this caused
me.
SarahJ 

 by Jing08, Feb 23, 2009 11:31AMTo: JackieCalifornia Yes, I have been
 tested for Lyme three times. I live on Cape Cod and it is always
 considered first when you present with muscle pain, etc. I had to
 ELISA test and a Western Blot. All tested negative for Lyme. Thanks
 for you input.
 

by Jing08, Feb 23, 2009 11:47AMTo: SarahJ146 Thanks for your response.
Bone and muscle pain seem to be a given for a lot of things, but
hearing about the heaviness in your arms really rings the bell. Did
you take a Vitamin D supplement, and if so, has it helped?

 

by SarahJ146, Feb 24, 2009 10:27AMTo: Jing08 Oh my goodness yes...it's
helped tremendously. Jsut about all gone. Make sure you take D3
vitamins - it's kind of trial and error to see which dosage works best
for you. I started at 2,000IU's and it wasn't cutting it. If you still
feel some pain, you can increase it. I am now up to 4800IU's daily and
it's working really well! 

by Jing08, Feb 25, 2009 12:04PMTo: OSMSDucks Would you share the
name of the endo @ Boston Medical Center? Thank you. 

by Jing08, Feb 26, 2009 07:26AMTo: SarahJ146 Thanks for the D3 info. I
am on my way to GNC to get some. I hope I have as good results as you
did. 

by iowafarmgal, Mar 02, 2009 09:25AM Just had my low D levels
addressed by an endocrinologist and he suggested the 1Xweek 50,000 IU
D capsules, even after I told him I am obviously D-intolerant (tried
taking 2000 IU, even 400 IU, with results of lack of concentration,
brain fog for at least a day after each dose). He "wasn't familiar"
with vitamin D lamps, which I've been researching on www.mercola.com.
I asked him to research it for me. If this works, that would be great.

Being raised with farm animals, I have had parasites in the past.
Could this have caused a depletion of D levels? Wondering if I need to
have this checked out again. 

by JackieCalifornia, Mar 03, 2009 01:46PMTo: jing08, sarahj146,
iowafarmgal Besides being tested for Lyme, were you also tested for
co-infections like babesia, bartonella, ehrlichiosis, and whatever? I
would guess Lyme usually comes along with those, but the treatments
for the coinfections are not necessarily the same drugs as for Lyme.
Just a thought.

I am low in Vitamin D and have been for quite a while -- tho I wasn't
tested for Vit D levels until I was ill with what turned out to be
Lyme and a coinfection, so I don't know how long the Vit D had been
low.

I also have to say: I don't ever remember hearing about this
'epidemic' of Vit D deficiency until recently, and am a tad suspicious
that it's suddenly such a huge problem.

That said, I had an endocrinologist prescribed huge doses of Vit D for
me but it just didn't seem right ... so I didn't take them. More
recently, after doing a bunch of reading, I started taking cod liver
oil that has both Vit A and D and some other good chemicals in it --
there is a lot of talk about ocean pollution making cod livers into
toxic waste dumps, but I have the $$$ fancy cod liver oil from Norway
blah blah.

The recommended 1/2 tsp per day upset my gut (it's a laxative) but 1/4
tsp per day seems to be okay so far .... and I have to say I am
feeling better -- not so brain dead and dull. I take it before I go to
bed, because it makes me drowsy ... like a sunbath by the pool used to
do. (Maybe that's the brain fog iowafarmgal described?)

 Much remains unknown. I do wonder about the unintended effects of
 massive amounts of D3 -- what other things does it throw out of whack?
 

by redangel1, Mar 17, 2009 04:39PMTo: Vit D def I am grateful there is
information here and saddened that so many people are suffering. I
have experience so many of the things posted here. I just went to a
Rhuemy last week and I won't know the results until early next month.
Today I did find out my Vit D was very low and of course after reading
all these posts...I am not surprised. I know this Dr took my symptoms
seriously...whether she will continue to dig deeper of just send me
off with a script is yet to be detemined. I had a total thyroidectomy,
2 carpel tunnel surgeries,(on same hand as it never healed and stayed
swollen for 5 months before the surgeon humored me and did an MRI,
suggesting he wouldn't find anything. He was wrong!) 4 surgeries for
endometriosis, severe case of Eppstein Barr, and 2 months ago was in
the ER with Pluerisy.(I never heard of the word before that day!) I
always take MUCH longer to get well when sick and I have no energy,
pain EVERYDAY in my feet, ankles and knees. I a great husband and a
miracle baby (literally b/c of infertility), positive APA, Insulin
resistant,(had gestation Diabetes when pregnant) anxiety (no surprise
there...even diagnosed with Panic Disorder) and I am sure my hormones
are out of whack even though my results show I am not in
perimenopause. I guess I do not WANT to have something come back, but
I also will feel so defeated if the only thing is Vit D def. I KNOW
there is something going on. I can't imagine living this way and not
being able to really enjoy my toddler. I waited 39 years to meet him
and I just want to feel better. Of course one endocrinologist who was
supposed to really be good told me to go see a Psychiatrist. That was
my last visit to her.

Thanks for listening and any advice would be appreciated. 

by Joe2449, Mar 19, 2009 03:18PMTo: All I was diagnised with Kidney
failure last year and after some serious treatment things have
stabalised or so I thought. I started to get some pain in my hips this
moved to my hands, fingers, wristes, knees and ankles. Mentioned this
to my Doc who did'nt really know. So went back to my Gp who did not
have much of a clue "got to do with your kidney"was the Ans I was
getting. Anyway pestered him and finally got referred to the
Rheumatologist who happen to mention Vit D3. Gave blood and waiting
results. Googled Vit D3 came up with this site and low and behold all
my symptons are here! thought for a bit I was going crazy trying to
get everyone to believe me.

Joe 

by laraann79, Mar 25, 2009 09:25AMTo: all Hi,i am 30 and have been
having a lot of symptoms that the doctors could not explain since i
was around 15 years old .ok i will give ya some history first. i got
married when 13 and had my oldest son just before i turnned 14 he was
2 months early than i had my oldest daughter just after i turnned
15.My 3rd child i had at age 18 ,my 4th at age 19,my 5th at age 25 and
my 6th at age 27. ok i was fine after my first child ,but about 3
months after my 2nd childbirth i started getting tired i was working
out a lot and it just got harder and harder to make it through the
work outs and i was starting to gain weight also had headaches at this
time he gave me prescription ibuprofin and said to see if that helped
a month later i went back i had gained within about 1 to 2 months
almost 30 pounds i told him something wernt right i wasnt eating and
workin out and still gaining and my hands started hurting so he ran
tests and it came back with underactive thyroid so i went on med for
it how ever he also tested for RA and it came back negative so he said
i had CTS and told me to wear braces on my hands and wrist .I also
became depressed and put my self in counseling was diagnosed with
depression ,ocd,and anxiety ! but still i didnt feel all better until
a few years later but just before i got better i had a seizer and went
through all the test to find out that it was prob just stress related
i got divorced a couple months later and my thyroid went back to
norrmal on its own in early 1997 .
Later in 1999 after ive had 2 more children almost exactly 3 months
after my 4th child i started gaining weight,getting tired ,had
swelling in my hands that cause a lot of pain and same symptoms also i
had to go on antidepressants again.But this time all tests came back
normal also i started feeling better in 2002 started losing weight
again and was ok till again after my 5th child at around 3 months
after giving birth all the same symptoms started again and it wasnt
till end of 2005 that i started dropping weight again and i was not
able to get pregnant that whole year prior until a couple months after
my body started going back to normal .also this time when my body
started to fix itself insted of a sezier i woke up from a nap swollen
to the point i had to go to the hospital and go on a fluid pill and
with in a week of that i had a bad allergic reaction to a cheese steak
sandwich had to go back to hospital . but after this my body went back
to normal again or atleast until i had my 6th child again about 3
months later it all started again but this time it started with
tiredness then a lil weight gain woke up swollen again and when i went
to doctor to get fluid pill my blood pressure was low also .
now i should also mention that while my body was messed up in 2005 i
also started having pain when i would take a step then i got a
stabbing pain between my shoulder blades and it was hard to walk for
about three weeks but by the time my body went back to normal i was
not having much pain and the docs did think at first that it was lupis
or ra or also had mentioned fibromyalgia also .
Now when it started back after 6th child i ended up quiting my job for
a few months to rest .than went back to same job and ended up falling
and messing my back up real bad my nuro doctor says i need new spine
so i now have constant muscle spasms nerve damage and just a lot of
pain i have degenertive disc disease with bone spurs and myofacial
pain aswell .and im still having the excessive sleepy feeling.so i
decided after blood test and sleep studies and heart monitors and so
on that i need to figure out what was wrong i started researching
hormones and vitamins i started taking vit b12 cause it seemed to fit
and a multi vitamin and also a&d vitamin . i started to lose a little
weight and have a little more energy but a long way from being normal
again .oh and i forgot to mention that i also became diabetic in 2008
but i dont always test high so it took almost 6 months of testing
before i went on the pills for it .
so i went in to have kidneys tested and asked the doc to test for some
of my vitamins ,D,B12 ive been taking vitamins since sep 2008 and i
was slightly high on vit b so he said to take it everyother day but i
was still low on vit D .
so i believe that all of theese wasted years were due to vitamin
defficency this whole time due to having many kids and so close
together .once one vitamin is low it can cause a chain reation in ur
body .It can work just like ur thyroid causing all kinds of problems
including causing ur body not to utilize sugar or other nutrients .
I would almost bet my life on it that its the vit D that is the cause
of all the symptoms. i should also state that i also have rage isues
that have gotton worse over the years and dizziness , trembling also
but when my body felt normal i did not have the symptoms or depression
and even my hands felt better during the normal periods of time.I am
also currently going to doc for memory issues to . sorry to write such
a long comment and for any miss spellings . i am glad that i found
this site ! i have wished to feel normal for so very long and to have
everybody know that im not crazy that ive been saying for years that
my body is messed up even though it looked like everything was normal
on test results . i wish that the doctors were more open to doing
tests other than the usual screenin panel they do .Cause now that ive
found out what is wrong with me i still have the messed up back to
boot.i wish i could get all those years of feeling so bad that i didnt
want to live anymore back !!! I am happy because i now know that i am
going to be able to get back to feeling better sooner than later but
when i started reading all of ur stories i also cried ,because to
think that ive been living like this for so long and all the life it
had took from me for so long . all because of something so simple as a
vitamin!!!!! I wish all of u the best and hope that u r all doing well
!!!!! 

by laraann79, Mar 25, 2009 10:40AMTo: all well i was reading some more
of ur posts and wanted to add that if for any reason ur stomach is
messed up maybe acid or hurt burn or even a flu that iritates ur
stomach or even possibly pregnancy could cause a disruption in it .
this can cause u to not absorb vitamins as u should and if u r taking
vit d u should be taking vit c inorder to absorb vit d . and the cold
numbness i have had along with facial numbness well actualy about half
way up the back of my skull all the way down to my feet and hands so
it is possible the vit d is the cause for it . also i read in a
article about a year ago that 30% or so of people tested for lyme get
a false negative back.also thyroid u can also give a false negative .
also on the ana if u r a women it can be considered normal if u r a
little low because they thaught i had lupis back in 2005 and sent me
to rhematoligist but xrays came back good except for my knees showed
some wear but oddly enough they were about the only place that wasnt
hurting lol . the doc told me not to worry about the ana test that it
was not uncommon for women to test low. but how ever i have been
tested since and it is fine also off and on the test for inflamation
(inflammation) comes up inflamed and then goes back to normal so i
think it is very possible that at different times symptoms will very
depending on how or wat other minerals and vitamins the low vit d will
affect !!! thanx 

by FirstLady1197, Mar 26, 2009 04:33PMTo: Everyone Hi, I am really
glad i found this site. thanks to eveyone who posted, it has been very
educational. i am a 31 yr. old female who was just told that my
vitamin D level was very low. how low they didnt tell me. i went into
the emergency room 2 weeks ago with severe headache, blurred vision,
body pain, fatigue, nausea and weakness. they perscribed me 800mg of
ibruprophen and reglan 10mg. the ibuprophen gave me severe pain in my
upper stomach right up under my rib cage, so i stop taking it. after
taking these meds the symptoms still did not go away. thats when i
went to my Dr. who took bloodwork and told me that my vitamin D level
was low and that i need to get a ultrasound done on my liver since
recent ultrasound found a "spot" on it. i am waiting on the results to
see what is going on. what should i do until the results come back.
duh i know the answer PRAY! thanks for all your testimonies! 

by LYMEAID, Apr 07, 2009 04:13AMTo: All with Aches and Pains. People
who have had countless symptoms including fever, joint pain, muscle
pain, lack of concentration, poor memory, dizziness, low energy,
shakiness, poor sleep, feeling of heart attack,facial and extremity
numbness and tingling etc. to name a few- symptoms consistent with
many of you, have been to my knowledge diagnosed with D deficiency,
but also might have symptoms consistent with Lyme diesease. This could
explain a bunch of things as well as lead to many more questions. You
draw your own conclusions...

The trouble is most docs know very little about LYME or they dismiss
its signifigance. Testing has a high incidence of false negative,
there are numerous categories of LYME that you could contract other
than the commonly tested for borrelia burgdoferi, there are several
ways to get it other than ticks, and you may not even notice a tick on
you. The LYME symptoms may come and go over time making them more
difficult to identify. Some tests may be more accurate in early stages
while others are more accurate during later stages. There are many
tests for LYME that your family doc or insurance company will probably
never reccommend, if they even know about them in the first place.

A great place to learn about LYME is at Columbia University, NY where
they can run a full array of tests with leading edge technology,
knowledge, and research, and take LYME concerns much more seriously
than most doctors. If they are able to help even one of you that would
be great! They can at the very least give hope for a solution to LYME,
possibly to your health! just find Columbia University LYME center
info on a search engine...I have never been there so I can not
reccommend them. On the other hand, from what I have read, they are
among the top in the Lyme research field. 

by daxy69, Apr 09, 2009 12:50PM hello, have also been diagnosed with
low vit D, level is 13 instead of 60 -100. i too also have been
feeling awful, incredibly tired, emotional, headaches, pains and aches
in legs and arms and last week sharp pains in legs. have been put on
alfacalcidol to raise my levels.

before finding this site i did think i was going slightly mad, and in
a way i way i am relieved to find this, although not good to hear that
other people are struggling with this too.

i have another two weeks to wait before i see the DR again, and not
sure how i will cope, i think i will have to try and rest and maybe
take some time off work. although, sitting around doing nothing does
not help and feel very restless.

also, an odd symptom is that my legs buzz sometimes like my mobile is
ringing and on vibrate, but its not, it my legs. this is how i first
found out what was going on.

i have just been discharged from hospital after 18 months of Graves
Disease, some of the symptoms are similar, but i do think i have had
this shortage of Vit D all that time, as i had to give up cycling to
work round that time as my legs became weaker and weaker.

 Anyway, i wish all good health!
 

by Taximom555, Apr 09, 2009 09:27PMTo: all For those with joint pain,
including CFS and fibromyalgia sufferers, and for those with vitamin
deficiencies: most doctors do NOT know that undiagnosed celiac disease
can cause these symptoms. They mostly think of celiac as an intestinal
ailment, but it is an autoimmune condition where symptoms can bypass
the intestines entirely, and the immune system can attack joints,
thyroid, skin, pancreas, brain, etc., causing an unbelievably large
range of symptoms. It almost ALWAYS causes vitamin deficiencies.

On the bright side, it's the easiest disease in the world to cure, and
the cheapest: don't eat gluten (the protein in wheat, rye, and
barley).

The reason doctors don't know about this is that they are trained and
taught by the pharmaceutical industry, and the pharmaceutical industry
cannot sell a drug for this. They don't make any $ if you change your
diet and stop taking all the medicines they throw at you.

Check out some websites on celiac: www.glutenfreeandbeyond.com,
www.celiac.com 

by amyk, Apr 14, 2009 08:11PMTo: Everyone Although Vitiman D
Deficiency may be a symptom of something more serious (as many people
have stated above) it may also be due simply to lack of sunlight
(staying in all day, covering all skin when in sunlight, using
sunscreen whenever outside etc.).

So...(in my opinion)...keep aware and informed (and get tested and
talk to your doctor about whatever you feel necessary etc.), but don't
"jump the gun" and convince yourself you have some terrible disease. I
did this once. I googled my symptoms once and convinced myself I had
Rheumatoid Arthritis. I went to the doctor in tears...all "freaked
out" and the doctor laughed at me and shook his head and told me I did
not, indeed, have it.

My point: Worry...BUT don't worry (if that makes any sense)

Crazy Fact: Seems the whole skin cancer prevention thing is tricky:
Sun burns (and too much exposure) can lead to skin cancer and using
sunscreen (and covering up) can lead to lack of vitamin D which can
lead to skin cancer.

Go Figure!!!

A.K. 

by daxy69, Apr 16, 2009 03:04AM after 5 weeks of taking alfacalcidol
and one capsule of cod liver oil and half a calcium tablet (they are
too big to swollow) every day (last two tabs recommended by a nurse
friend), i can say that i suddenly feel better this week, it was also
the easter weekend so i rested (although i did drink enough alcohol to
drown a small horse), but compared to how i felt last week i am a
different person, anyway, thought i would share this

 

by PattyE112, Apr 18, 2009 12:30AMTo: Everyone I just tested low 18. I
am starting 50000 tomorrow for 4 wks. I suffer from severe depression,
anxiety, weight issues, cholesterol, high blood pressure all within
the last 2 years. This will be amazing if that is what it is. I am 46
and have felt something is up with my hormones. I will keep you
posted. 

by daxy69, Apr 18, 2009 12:43PM after feeling great for one day, i
have gone back to feeling awful again, but at least i know that i can
feel better. but have gone back to usual symptons, feel extremely
tired to the point of feeling exhausted, feel short of breath,
emotional, and seem to gaining weight even though i am not eating more
than usual, havn't slept well for last 3 nights which may be a factor,
but the way i feel is more than just in need of sleep, hey ho, hope i
will feel different again soon

 

by tiffdog5, Apr 20, 2009 08:08PMTo: Everyone I am a 29 year old
female and 4 weeks ago was finally diagnosed with Vitamin D
deficiency. My level was a 6. My rheumo. prescribed me 50000 IU D
capsules. I take them once a week for 4 months. I'm on my fourth week
and although I am feeling a little better, I have my good days and bad
days.

This whole journey began the first week of February this year with
severe chest pain, headaches, terrible joint pain in my wrist and
ankles. Sometimes the pain would travel very strangely to different
parts of my body. Watery diaherra that lasted 5 days, and I still have
it periodically. (sorry to be so detailed, but it may help someone
else suffering like we all are), shortness of breathe, pain on my ride
side of abdomen, lymph nodes were horribly swollen, severe upper back
pain, dizziness, I also lost my appetite completely. I went to my GP
and told him that I felt like I had been beaten up by someone. He told
me I had the flu.

This went on for a month and a half and my symptoms seemed to get
worse. I LOST 18 lbs. and I felt extremely horrible. I have a 17 month
old who I have to watch and it was very hard for me to function in
everyday life. My mom had to come and help me with the baby, I simply
couldn't function. This comes from a person who has a very high pain
tolerance. I gave birth to my child naturally with no pain medication.
(by choice). And honestly I would rather give birth any day than deal
with this pain.

I asked my GP to send refer me to a rheumotologist and he thankfully
did. My GP didn't think there was anything wrong after doing a chest
x-ray and ultrasound. I also had to go to the ER one night from severe
chest pain. They did a ct scan and told me they couldn't find
anything. Then I went to a rheumotologist and she tested me for lymes
disease and vitamin D. I tested a 6 on vitamin D and my lymes disease
came back in the middle range. Whatever that means. But they said I
don't have Lymes Disease. I should also add that I have had Hashimotos
Thyroid Disease since the age of 14. And have had no other health
issues. My rheumotologist told me that it is very common for a person
with an autoimmune disease(Hashimotos Thyroid) to get another
Autoimmune disease. But she hasn't done any further tests.

I hope this is just a lack of being in the sun, and hopefully it has
something to do with my hormones changing after the birth of my
daughter. However, I still have vague pain in my wrists and ankles, I
still get headaches, and I have this visual problem with glare. It
seems like everytime I look at something bright there is a glare in my
eye for awhile. I also have lateral chest pain, I'm bruising really
easily, sometimes my eyes itch, as well as my hands and feet, (maybe
once a week they itch and not really bad), and lower back pain.

Honestly, I'm loosing faith in my docs. they are not very supportive
and they act like the prescription vitamin d will solve everything. I
just hope with more time on this prescription my symptoms will fade. I
don't know what else to do. Currently I am on Levoxyl for my Thyroid
disease, 50000 Iu Vit D, Centrum performance, vitamin C, and sometimes
I take Prilosec to help with my chest pain. It doesn't always work
though.

Thanks for sharing all of your stories they have truly helped me!!!
And I hope my story helps someone else.
Good Luck to you all!!
Take Care 

by twprn76, Apr 20, 2009 10:22PM 32 yo male
Just found out that my Vit D level was 10. IAbout a year ago had an
accident and broke a rib and got costochondritis. Doctor thought it
was my heart and sent me to the hospital. Everything with my heart was
neg. Got treated for costochondritis and it felt like it when away.
Does it come Back? I now have headaches/headpain in my temples and all
over my head about 8 months. Even went to er because my headache neck
pain. Pain in my rib chest area for about the same time. MY pain moves
around my chest and ribs. I had 3 ekgs for my heart in a year and they
were all the same and normal. Cardiologist did not want to see me
again. My nuerologist said it was migrains or FMS. I am not depressed
and I work in the mental health field. I have a burning sensations in
my right shoulder, DR sent me to gastro. He said that is not why I
have pain in my shoulder. He did scope me and found out that i have
esophogitus (which i never feel) and a polyp Possible barrets
syndrome. I get tingling in my feet, especially my sole of my left
foot and sensations all over my body. Took two lymes test both
negative. I live across from the woods. There was a spot on me with
some black thing in it. The docs told me it was a staph infection.
Then also got an infection in my salivary glands in my mouth. I am
glad I am not the only one with these symptoms. Two Drs later one of
which said I have no idea what is wrong with you. Got a new Dr and she
ordered these test. 1 pill 50000 units once a week for 12 weeks.
Hopefully I will start to feel better. Sorry so long. 

by BrenBren2009, Apr 21, 2009 12:37PMTo: vitamin d deficiency folks I
am 57, lost 1 kidney to cancer 4 years ago - extremely healthy prior
to that. Post op pain lasted for years - especially ribcage pain. It
was intolerable - have been unable to wear bra for 4 years due to the
pain in that area (wear loose bra tanks)

Consulted many specialists with zero findings. Prescribed many serious
narcotics - only morphine, Tilox & Tramadol eased the pain.

Friend mentioned her bone pain was relieved by high doses of D. So I
requested blood test & it came back a "2". Was sent to endo who
re-tested, stating he'd never seen anyone with a level of 2. His lab
came in with "0" - totally undetectable levels.

After 50,000 units 3 times per week for 5 months, my ribcage pain
diminished greatly. I've been off the prescription for 2 months & now
the pain has begun returning every night. I will see the endo next
week for follow-up.

Strange how this seems to relate to the kidney issue. Must research
that further.

 

by Jing08, Apr 22, 2009 11:09AMTo: BrenBren2009 I, too, had a
life-threatening condition last year that involved serious
prescription drugs and a surgery similar to yours. Then I suffered
from severe lower back pain, muscle aches and spasms and just plain
bone pain. All tests came back negative, but finally the Vit D showed
extremely low.

I don't think your pain/vit D issue has any connection to your kidney
issue. I think that you, like I, were so compromised by our health
problems that we were not eating well and not getting outside enough.
That simple. Since I have started the vit D and getting out for my
walks (without sunblock) I am just about back to normal. (Once my
level is up, the sunblock goes back on.)

 

by tiffdog5, Apr 22, 2009 06:43PMTo: Everyone Does it take along time
for the Vitamin D prescription to make a difference?
I'm on my fourth week of 50,000 IU that I take once a week. My Vitamin
D level was 6. And believe it or not when I first started taking them
I started to feel better, but now all my symptoms are coming back
slowly. I now have an extreme stiff neck pain that radiates to my
shoulders. And my lower back is killing me on my right side.

Can anyone offer some advice?
Thank you 

by daxy69, Apr 30, 2009 03:35AM i wish i could, am coming up to a
month now (original level was 13) am assuming when i go back to my DR
i will have another test,

currently am feeling rubbish, not sleeping well at all, interesting to
note info from tiffdog5 i am am incredibly itchy, all over, mostly
legs, feet, hands, body

legs are in contact low ache, still have trouble walking, feel like i
have been on long walk, long marathon and long swim, but i havn't,
someone said to me when i arrived at a work meeting this monday "did
you cycle in" as i was so short of breath, i had just been walking.

not good really,

 

by considerthis, May 06, 2009 07:10AMTo: all couldn't read the entire
post set, you all sounds like you THINK you know what you are talking
about. Most doctors DO try to find the answers to your problems, even
when you have left the office, we are still thinking about you.
Sometimes we simply can not find an answer and this is serious reality
that people with all their internet and technology seem unable to
accept. Further, vitamin D deficiency is very common and DOES NOT
necessarily mean you have some mysterious underlying condition. Yes,
you should get a thorough evaluation, but maybe you just need to get
out in the sun more! 

by daxy69, May 12, 2009 03:11AM that is so unhelpful, really, when i
went to the doctor with thyroid issues he completely treated me like i
was wasting his time, started telling me that after 3 minutes that i
had to go as there were other people waiting to see him (i was the
only person in the waiting room). When three days later they called me
back with greaves disease and was apparently really ill he wanted to
shake my hand and all the other doctors wanted to get their hands
round my throat as they had little experience of seeing a hypo-thyroid
person before.

i have spent the last 15 years or so supporting people in my career
and i have to say if i treated people like i get treated by my doctor,
i wouldn't have got very far earning people's trust. there are many
more stories i have about attending my doctors, i have a nurse friend
and i tell some of the stuff, she is pretty horrified by my tales,
such as being told the reason I may not be able to get rid of a cold
is that my partner may have transmitted a sexual transmitted infection
on to me! That I wasn’t feeling well because I must be depressed (six
months later diagnosed with graves disease).

That when I called to get the results of the vit D levels the
receptionist on the desk, read the results and told me that all was
normal, she is not supposed to do that, PLUS the results were not
normal they were at 13!. You have to laugh really!

however, i did not come on here to rant about doctors or be told i
'should get more sun' i was hoping that sharing what i am going
through might be helpful as my personal experience not being treated
well by your doctor or not being listened too can have negative
effects on your well-being.

From this website I have worked out that I may have had low vit D for
about 3 or 4 years and that may have been the underlying issue with my
health for then. If I could depend on my doctor for help or support
then I life would be different, but, living in London it just ain’t
like that. I really do wish I could get a ‘thorough evaluation’ and be
treated like an adult, really. But that does not seem to be on the
menu so I look elsewhere for some kind of resolution I found that
here.

Thanks and support to those who continue with this.

 Ps, in case people are interested, had a lovely day in the country on
 Friday day, felt refreshed and full of life on my return to the city,
 however, aching legs kept me awake all the of the night. Work wants to
 send me to ‘occupational health’ and the company want access to my
 medical records, funny! Have no frame of reference for this, do I just
 say yes?
 

 by PattyE112, May 14, 2009 09:59PMTo: Everyone Update from my post of
 April 18, 2009 - I must say in the last week a startling clarity and
 lightness in my emotions has come over me. I will test my blood
 tomorrow at the lab. I will let you know what it came in at. I took my
 last dose on Wed 5/12. I now am taking 2000 units per day as
 prescribed. I still have aching calves at night and I have had a bad
 round with seasonal allergies so physically it is hard for me to
 decipher exactly how I feel but emotionally I sure feel better!
 

 by PattyE112, May 23, 2009 12:03AMTo: Everyone I got my results today
 and my level is now 54. I am to take 2000 units daily. I feel
 emotionally like a new person, depression is gone. Anxiety is back to
 what I used to feel like. I am sleeping well and my dreams are very
 active. I remember them better. My legs still cramp but I again the
 allergy season is not at all agreeing with me this year so I'm not
 sure physically how I feel since I am tired and no energy. I tell
 everyone I know about vitamin D. This should be on the top of the list
 for all psychiatrists, doctors and therapists. In fact I think I'll
 even write Obama and suggest it as part of the new Health Care Reform.
 

by JackieCalifornia, May 23, 2009 11:46AM I have just come back today
after several months away from reading this series of postings on Vit
D, and there are flags popping up in my mind as I read. I too was ill
for several years and told my Vit D levels were too low and to take
large supplemental doses as many of you are being told to do. This was
from a very good endocrinologist, and the best diagnosis she could
come up with was 'chronic fatigue', but she had no explanation for WHY
my Vit D levels were so low. I knew however that there was something
serious going on with me and kept looking for a more definitive
diagnosis, which turned out to be Lyme disease and another disease
like malaria (called babesiosis) that is sometimes carried by the same
ticks that carry Lyme. I am now under the care of a doctor who
specializes in Lyme and am making excellent progress -- all without
Vitamin D supplements. (There is some theory that taking Vitamin D if
you have Lyme makes the situation worse -- I won't get into the
details here, but just throw that out as a thinking point if you go
reading about these issues.)

Several of you above say that you were tested for Lyme and came back
negative. There is a RAGING debate in the medical community about the
diagnosis and treatment of Lyme. The so-called mainstream position
held by the Centers for Disease Control (CDC) and the Infectious
Disease Society of America (IDSA) are: (1) as to diagnosis, most
doctors want to see a big red circular ('bullseye') rash, and then the
first and sometimes only test that is done is called an ELISA, and if
it comes back positive, then a Western Blot test. The problem is that
the rash doesn't show up in everyone, and neither one of these tests
is very accurate and miss many obvious infections; and (2) as to
treatment, those who are diagnosed are treated with perhaps 10 to 30
days of antibiotics and told that they are cured, no matter how they
feel, and that any remaining symptoms are your body's immune system
overreacting to a now-absent disease.

Unfortunately, the CDC and IDSA have come to these conclusions based
on outdated and inaccurate information submitted by doctors some of
whom have or had a financial and career interest in not looking stupid
by changing their minds now in the face of continued research and
treatment developments. Another group call International Lyme and and
Associated Diseases Society (ILADS) takes the newer and more
thoughtful point of view that we really don't know everything, but
there are people out there suffering who are not being treated because
we don't fit into the narrow standards for diagnosis and treatment set
some years ago by the IDSA-types. Most doctors currently practicing
are taught to believe the CDC/IDSA as authorities on the subject,
which usually works fine, but in this case, there is strong indication
that they are wrong AND stubborn. Let's put it this way: even the CDC
says that Lyme is the most common vector-borne disease in the United
States. It is present in all parts of the US and Canada, as well as
Europe, despite what some say.

Lyme disease is caused by a spirochetal bacterium, similar to the one
that causes syphilis. Yes, the veneral disease syphilis. The
corkscrew-shaped Lyme bacterium has a fondness for hidden places in
your body that, once established there, antibiotics cannot easily
reach -- such as your brain and your joints (are your knees bothering
you?), making Lyme actually harder to treat than syphilis. The Lyme
bacteria also have a neat trick of hiding from your immune system by
shape-shifting into a cystic form that lets the bacteria sleep until
they are ready to come out and feed and reproduce. Testing for the
cystic form is, as far as I know, not possible, and treatment is
difficult (but not impossible) if Lyme progresses much past the first
few weeks after infection.

The symptoms of a post-bite rash (seen only in perhaps half of Lyme
patients) go away within a few weeks, and the ELISA and Western Blot
tests are highly variable in their sensitivity and accuracy, leading
many doctors to believe that Lyme disease is not present or has been
cured, and so they look no further -- but what about continuing
symptoms? The doctors often call this a lingering overreaction by your
immune system to a disease no longer present, and so don't want to
treat it, or are often too happy to hang a psychological diagnosis on
Lyme patients who continue to manifest symptoms of severe anxiety,
short term memory loss, depression, lack of concentration, difficult
in word-finding, which are not uncommon in untreated Lyme. The
continuing damage that Lyme can and will do is in fact a serious
matter, similar to what happened to those with syphilis before
penicillin was invented: years or decades later, severe dementia can
result, in addition to the other earlier symptoms of joint and muscle
pain, memory problems, heart damage, and others. This is a serious
disease too often not taken seriously, and it does not go away by
itself.

I personally never saw a tick or had the rash the doctors are so keen
on, and when I was in the ER (twice) with severe heart irregularities
(on top of severe fatigue, confusion, terrible headaches and muscles
cramps), my dr simply increased my estrogen dosage and had me tossed
out of the ER the second time as an attention-seeker and a
hypochondriac. In fact, I had recently been infected with Lyme and the
malaria-like disease and was seriously ill, remaining that way for
quite some time until I found my way to a doctor who follows the more
progressive ILADS standards of diagnosis and treatment. If I had been
diagnosed and treated properly at the early stage (in the ER), I would
not have progressed to the point that I am now. Treatment for me now
is rather prolonged, but still possible, and the sooner treatment
begins, the better the chance of a complete cure.

Be forewarned that if you follow a path to determine if you have Lyme
beyond the 'gotta have a rash and a tick, gotta pass the ELISA and
Western Blot' approach, your current doctors may try to discourage and
belittle you as pursuing quackery, but if you're as sick as I was and
making no progress, what do you have to lose by looking into it? My
life was disintegrating day by day, and not pursuing and treating was
not an option. Doctors believe that desperate patients will try
desperate treatments, but patients deserve respect and care and
appropriate treatment no matter how desperate they are. This disease
is on the cutting edge of medicine, and smug doctors who think they
know it all are not honoring their profession or themselves. (I
remember when the standard in medicine was that anyone with a stomach
ulcer was giving to themselves because they were too stressed out --
that changed not too many years ago when the bacterium H. pylori was
discovered to cause stomach ulcers.)

The symptoms of Lyme vary greatly from person to person and over time,
so it's a tricky one, but also a very serious disease. If you are
interested in learning more, join us over at the Lyme Disease forum
here on MedHelp.

Sorry for the long post, but it breaks my heart to read your stories
and think that you may have Lyme and other co-infections that your
doctors are overlooking while you continue to suffer. Best wishes to
you all.

 

by jeannewemail, May 26, 2009 07:48PMTo: everyone Dear readers,I hope
to have it diagnosed :hypovitaminosis D. It all started in 2003 I was
always tired and the only signs was pains in my knees,it would come
and go without any regular pattern.A physician did a couple of knee
xray ,it was ok,also some lab work everything was ok ,antinuclear ab
was -,ESR was -,lyme disease-,c reactive protein -,rheumatoid factor
-,except the calcium 10.9 mg/dL,he just gave me some Ibuprofen.

After all those years the pain never really went away each time all
the blood test just showed the same borderline hypercalcemic #,the
other abnormal test was alkaline phosphatase 97U/L, ALT at 80 U/L and
the creatinine slightly elevated at 1.6 mg/dL more signs
appeared:difficulty to seat down (I had to grab the arm chair to help
to releave the pain in my knee)same thing when getting out of a
chair,out of my bed or out of my car .My all body felt achy,sore,stiff
like if I had train in the gym.all that mostly in the morning. If i
had to pick up something on the floor It was a challenge sometimes.I
felt like my whole body was rusting away.Sometime i woud also have
pain in my right elbow and my lower back.My lips were always
dry,always thirsty in the morning,have a urge to chew on ice. Beside
all this I kept working out (weightlifting) at the gym 2 hours 3 times
a week.....For a while I tought I had fibromyalgia,Reactive
arthritis,depression,hypercalcemia,hepatitis related
arthritis,osteoarthritis,lyme disease,hemochromatosis...

Finally an endocrinologist tested the vitamin D (25) it is 11 ng/mL
and he hesitantly told me to start taking vitamin d carefully not to
increase the calcium.Not satisfied with his answer I did my reseach
and concluded that 400 iu was not enough I just started on 5000 iu of
cholecalciferol daily and I will test the calcium regularly at the lab
where I work to watch for any vitamin d toxicity.I think that I have
what they call hypovitaminosis D myopathy (see article at this link
http://www.springerlink.com/content/173e6gwhxlrr7gj5/).

I'm still following up with different physician my last kidney sono
was ok.I'm glad i found that forum to learn and share knowledge about
vitamin D deficiency. 

by ruzalily, May 29, 2009 08:53AM I have learned a lot about Vitamin D
deficiency from reading all of these posts. I am still wondering,
though, about the relationship between Vitamin D and calcium. My
calcium is on the high normal side, meaning if it goes up by .2 it
will be out of range, and my Vitamin D is very low. My PTH test was
normal months ago, and my Lyme test (for whatever that's worth) was
negative. I have had symptoms that you have all described here -
muscle and joint pain, numbness and tingling, muscle twitching,
headaches, TMJ, clicking in my ear...the list goes on and on. So, my
rheumy said that I need 2000 IU of Vitamin D daily, as well as
calcium, 600 IU. I started taking this dosage a few months ago and
many of my symptoms subsided, but my existing heart symptoms
(arrhythmia) were exacerbated, maybe due to my calcium. So, I stopped
taking it and now my symptoms are back. I'm going back to the endo on
Monday, and I really want her to look further into a parathyroid
problem. Can a person have a parathyroid problem with a normal PTH?
Does taking Vitamin D increase calcium levels in the blood? I am 43
and have osteopenia and feel far older than I should. Any suggestions
on how I should approach this with my doctor? Thanks! Lily 

by 911rach, Jul 02, 2009 09:56PM I am very happy to have found this
site...I thought maybe I was crazy...I think maybe the doctors thought
it too at times. Just found out today my d level is a 4. All the pain
and worrying and not sharing the pain because it sounded so
ridiculous...all the weird unrelated symptoms
I did not want to not tell my doctor, but it sounded so wierd
describing the symptoms. I thought she might think I was a
hypocondriac, heck, I would have if I were her and did not know myself
so well. I NEVER copmplained ever about physical discomfort so this
was very difficult for me. Chest pains, dizziness, muscle cramps, hip
pain, rubber band streched sensation in legs, major discomfort in
shoulders and head and the brain fog was the worst.I am very fortunate
that she ordered this test for me as I find that it was getting worse
and worse.Now I know why. I really hope that the strong supplement
will work quickly and end it all. I'll be sure to check back 

by sarodplayer, Jul 17, 2009 10:41AMTo: EVERYBODY I have always had
morning stiffness and recently started suffering from trigger finger.
After reading up on it, I started taking Vitamin E, Fish Oils and a
multiviamin. My symptoms worsened with pain being added to the mix.
Left hand all fingers and right hand, just my middle finger. When I
did a blood test, it came back with Vit D at 15 which is classified
low. I was about to start vit. D supplementation when I decided to do
more research and came up on the Marshall Protocol. Everybody here
MUST do a search on this and go to www.marshallprotocol.com before any
vitamin D supplementation. If sunshine or vitamin D supplementation
increases your pain, you most likely have vit. D disregulation going
on which basically is the conversion of 25 OH vitamin D into its
active form 1, 25 Dihydroxy Vitamin D. This conversion which is
normally controlled by kidneys goes out of whack when L form and Cell
Wall Deficient bacteria start converting outside of your kidneys and
this plays havoc with your system. The only way to get rid of these
bacteria and the chronic disease is to severly avoid Vit. D
supplementation and get on the Marshall Protocol.

Also note that your symptoms may get worse in summer when you have
greater sun exposure.

PLEASE NOTE: Vitamin D is not a vitamin, it is a very potent steroid
that your body tries to tightly regulate since it has known 970 plus
gene expression impacts. It is also a secosteroid with known
immunosuppressive effects. The FDA should ban the addition of vitamin
D into our food chain.

I am seeing my doctor today and the first thing I am going to request
is a 1,25 Vitamin D and 25 OH vitamin D ratio test. The 1,25 Vitamin D
is very hard to do correctly and is only done with any reliability by
Quest Diagnostics (according to the marshall protocol site).

 

by leatherbutchpa, Jul 26, 2009 10:12AMTo: All I came upon this chat
board after 2 months of searching diffrent things and another light
bulb went off maybe lol.
I have been in chonic pain for the last 4 months.
It has progressively gotten worse in the last 2 months when I went
into the hospital! The dr though it was was a galblader attack. After
they ran thier tests they said nope not the gal blader? I was in for a
week they sent me home telling me it was a nerve inpingment? Go to
pain management for your treatment! Nothing helped thier either, now
several dr's later and lots of research. I had a catscan done in the
hospital in June, Last week MRI.I was reading my tests results and
noticed my liver is increasing in size?No one has picked up on this
yet / IE DR'S. Do you know if Vit. D deficency would cause this issue?

 I went to a orthopedic dr. I told her I kneeled on my bed in a ball
 position it helped the pain to a level 2 from a 8-9. Now im off to a
 surgeon.
 Now lets see what happens ? Maybe im having multiple issues?
 Thanks for letting me chat :)
 

by sedona1005, Aug 25, 2009 03:29AM I have Fibromyalgia, Crohn's
Disease, IBS, Plantar Fasciitis, Carpal Tunnel Syndrome & of course
Depression. I've had pain so bad in my legs lately that it feels like
something is forcing my muscles out of my legs when I walk. I am in
constant pain, I feel like I have bruises all over my body, especially
in my shoulders and chest.

The doc ordered xrays including pelvis, sacroiliac joints &
lumbosacral spine series, and all came back normal. He ran blood
studies of all sorts and the only problems were Vitamin D deficiency &
then my usual high level of inflammation. He has started having me
take Vitamin D 50000UNT 1x/wk for a month & then once a month
thereafter & Calcium 600mg. He added Sulfasalazin 500mg 2/2xday for
the Crohn's. I've already been taking Lyrica 150mg 2x/day, Cymbalta
60mg 1x/day, Elavil 50mg 1x/day & Lidoderm patches for my ribs as
needed.

Now he's sending me back for more blood studies in 3 weeks to follow
up, but has added a test for Sjogrens & didn't mention it in my visit.
I haven't been able to work since the middle of December due to all of
my ailments.

Does anyone relate to all of these problems? How does one get on
disability for all of this mess? With my insurance being $500/month
before copays, prescriptions, etc., I'm in need of some income until I
can get back on my feet again.

He put me on Prednisone for one week & my gall bladder pain
disappeared as well as my Crohn's pain & Plantar Fasciitis pain. I've
been off of it for 3 days now & the pain is already coming back.

If anyone has any advice, information or even comments, please let me
know. I appreciate the help in advance. Thank you! 

by daxy69, Oct 01, 2009 02:43AMTo: all well, got my results back from
the hospital yesterday, i had to ask my doctor to refer me for second
opinion,

have riased methylmalonic acid, suggesiton of IM vitamin B12
replacement thearpy, been prescribed 1mg injections 3 times a week,
when loaded to move to oral dosage

also, vitamin d is now 46 (was 13) also, have been prescribed Vit d
replacements,

am sure of this means something of course, hopefully things will start
improving

 

by Mga138, Nov 27, 2009 09:10AM I went to see my docter because I
thought I had leukemia. My bones hurt all the time and my muscles were
so weak. I was shocked when I was just told I have a very low level of
vitamin D in my system. It was 9.5! The scary thing being that I was
already taking a vitamin D supliment when I took the blood tests. For
the past year I was feeling terrible most of the time. My stomach was
always hurting, heart rate was over 100 bpm my muscles we weak, I was
always tired and dizzy. I went for several heart exams I had a
colonoscopy and endoscopy. All came back ok and I was always told I
was just anxious. I was put and many different depression medications
and gained 50 pounds- but not until this week did a doctor find my
very low vitamin D problem. She ordered 3 different 24 hour urine
tests and many more blood tests and also a whole abdomin (abdomen)
sonogram. I never read any posts where people say what the underlying
cause of their vitamin D problem is. 

by minmtn, Jan 20, 2010 06:39PM A related discussion, Vitamin D
Deficiency was started. 

by Holyspirit, Feb 14, 2010 01:27AM Hello to all of you,
I have a very bad Vitamin D problem but my doctor said that it would
be ok. I have a bone spur in my chest and my fingers I read that a
lack of vitamin D can cause bone spur. But they said no that were not
true, but I know that it can.
I am taking Vitamin D. I was tested and all the vitamin D was almost
gone. Sometime the doctors don't want to go through the time to real
help.
Mary 

by Holyspirit, Feb 14, 2010 01:32AM Hello everyone,
I had a vitamin D problem, I had pain seem like every where in my
chest I founded a bump doctor xray said it was a bone spur. It really
hurts I am
taking vitamin d I waiting to see if it helps. 

by Holyspirit, Feb 14, 2010 01:34AM Hello to all of you,
I have a very bad Vitamin D problem but my doctor said that it would
be ok. I have a bone spur in my chest and my fingers I read that a
lack of vitamin D can cause bone spur. But they said no that were not
true, but I know that it can.
I am taking Vitamin D. I was tested and all the vitamin D was almost
gone. Sometime the doctors don't want to go through the time to real
help.
Mary Related discussions

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has being into to of what happens when your vitamin d levels are low only go there! there do himself what vitamins are in oranges what happens when your vitamin d levels are low
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of more through too yours ourselves of vitamin b3 while
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