low vitamin d and auto immune

Hi Alex: I have been getting treatment for MCS at a clinic and EVERYONE they test there has Vit, D deficiecy or on the low side. They say that anything that "attacks" the body can cause the deficieny, dont really know why that is.

That's an interesting question and I'll be interested to see the responses. I know that when I started prednisone I was told to take calcium supplements and was told to take the calcium supplements that also have vitamin D in them.

I've also noticed a lot of people with autoimmune diseases have low vitamin D, especially people with lupus who have to stay out of the sun. But apparently there is something about the disease process itself that can also cause low vit D. Mine was deficient before I knew I had lupus and before I ever started avoiding the sun.

When I was first referred to the rheumatologist, my vit D was 7. She put me on 50,000 IU 3x / week for a month, and then 2x / week until it was back up to normal. Now I'm taking 1000 IU / day to maintain. The vit D didn't help my symtoms any, but it definitely needed to be corrected for bone health. My calcium levels were fine, though.

AlexB - on my first visit to the rheumie, she checked my vit D level, which came back at 17. She started me on 50,000 units once weekly for 8 wks. I could only take 3 doses. In me, it seemed to make me feel worse - more muscle pain and spasm and fatigue. After reporting this to rheumie - she told me to stop the 50k and go to 1,000 per day. I decided to wait awhile and let my body settle down, and then I just never started back on it. A year or so later, she checked me again and the level was at 5. This time she said get on 1000/day and I did. Rechecked levels in 2 mos. only this time the lab ran the H25 and the 1,25. The 1,25 was extremely high - and the H25 was even lower than it was before! It made absolutely no sense. I was ordered off the Vit D - and was rechecked again 2 mos later - at which time the 1,25 had returned to nl range and the H25 was at 20 something. I now take Vit D in my daily multiple, which is 500mg. See the rhuemie again in 3 weeks and will probably retest again (after 8 mos. on the multiple only).

There are some interesting posts on the Lyme board about Vit D - with some references to the wacky Vit D levels (like mine) being reported by lymies along w/ some connection to AI and other disorders. I think we need to remember that Vit D is really a hormone, can build up in our bodies and is a catalyst for some very confusing things. You said you actually got worse on your Vit D supplement as well - though it could be coincidence. You and I are the only ones I've seen to report this - it will be interesting to see if others do. My main concern is people shouldn't just assume it's all good - it seems there is a vast range of dosages out there and I hope everyone is monitoring their levels from time to time - and remembering to consider Vit D as a possible culprit if things take a turn for the worse.

Lucy

I have MS and my Vit D was so low the doc said that it was life threatening. She put me on supplements but cos I am so allergic to evertthing it made pain and spasms worse. So I started trying to sit in the sun 15 mins at 11.am which is possible for me cos I live in southern hemisphere. Did that as much as possible (dont much like the sun as it makes me feel weak) when I next took the test I was just at the bottom of normal which I thought was good but doc said still not good enough. And yes I too have read that world wide people are low in Vit D though of course it is worse for all of us with an auto immune disease. I do not know what the solution is.

Can anyone tell me the symptoms of low vitamin D levels? I finally got mine tested but no clue when I will see the results.

According to my research which has been extensive and took over 3 years malnutrition during childhood alters our immune system in ways that if the malnutrition is bad enough can mimic AIDS and that although recovery is possible no one is sure if complete recovery of the immune system ever occurs. Malnutrition as an adult is no where near as damaging to the immune system but still causes harm. Perhaps it begins with low vitamin D levels in childhood causing changes in the immune system that cannot be undone even when those levels are corrected if it has been low too long and then as an adult those changes make us vulnerable or prone to autoimmune diseases whcih in turn can cause many deficiencies.

I can say much of my childhood I suffered from low level malnutrition and I was sick my entire childhood. I can also say I have always had problems with the sun- from as early as I can recall I have always been told to avoid the sun because it makes me physically ill and causes weird rashes.

Lupies with end stage renal disease have a triple whammy!  ESRD causes major parathyroid malfunction which results in low vit. d.  I get a 'pro-hormone" called hectoral with my dialysis treatments that help me absorb vit d.  I also take Zemplar.  Judy