Vitamin D Deficiency ?

by Kalio1, Jul 17, 2006 12:00AM

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 12:00AM

To: 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 sad 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 partial 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 women. Most of what I've read attributes this to sunscreen and adults no longer drinking enriched milk, 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 10:21AM

To: 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 11:10AM

To: 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 11:49AM

To: 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 02:38PM

To: 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 08:00PM

To: 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 12:22AM

To: 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 03:16PM

To: 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 03:56PM

To: 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 02:21AM

To: 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 09:04PM

To: 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 04:27PM

To: 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 amanda_1980, 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 04:29PM

To: 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 04:32PM

To: 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 01:48AM

To: 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 02:17AM

To: 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 11:06AM

To: 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 12:50PM

To: jlr52629

Can you please list all of your symptoms ?

Thanks !

by jlr52629, Oct 09, 2007 06:04PM

To: 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 10:38PM

To: 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 01:12PM

To: 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 07:43AM

To: 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 08:43PM

To: 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 Suffering_Pain, Dec 08, 2007 03:34AM

To: 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 04:27PM

To: 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 06:30PM

To: 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 10:16PM

To: 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 09:58AM

To: 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 04:02AM

To: 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 06:55AM

To: 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 08:32PM

To: 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 06:36PM

To: 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 11:50PM

To: 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 07:13AM

To: 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 11:10PM

To: 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 04:17PM

To: 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 d_lightful, Jan 29, 2008 11:21PM

Weird Symptoms
by d_lightful, 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 Ria_T, Mar 04, 2008 05:55AM

To: 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 10:02AM

To: Ria_T

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 05:37PM

To: 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?