low vitamin d and auto immune

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Regular Member

Date Joined Apr 2007
Total Posts : 27
   Posted 10/15/2008 4:17 PM (GMT -6)   
how many here have vitamin d deficiency?

i've been reading a lot of online literature about the connections of low vit d and auto immune

could vitamin d medications help stabalize the immune system or are they just feeding an already stronger immune system?

i was put on 10,000 IU of vitamin d when my vitamin d was 32 (range 32-100+) Technically thats not vit d deficiency because it's one point in range. I didn't notice any improvement of my health after taking the vit D, in fact my AI symptoms got worse (although i have no reason to attribute that to the VIT D, may be a coincidence)

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Date Joined Sep 2008
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   Posted 10/15/2008 5:11 PM (GMT -6)   
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.

Regular Member

Date Joined Apr 2007
Total Posts : 27
   Posted 10/15/2008 6:13 PM (GMT -6)   
i've wondered why i had vitamin d deficiency when i get enough sun and eat enough dairy and foods with vit D

is vit d deficiency one more way to show signs of AI?

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Date Joined Jul 2005
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   Posted 10/15/2008 6:19 PM (GMT -6)   
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.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
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   Posted 10/15/2008 6:32 PM (GMT -6)   
Calcium supplement contain D because the D helps the calcium enter the body better. So does fat. So calcium should be taken with food that has at least a bit of fat.

I read that the general public has Vitamin D deficiency is because of everyone wearing sun block. Not sure if that's valid but it would sure make sense.

Lupans have a double whammy because we work hard to stay out of the sun. So we would be deficient to just because of that. Now if our illness destroys Vit D in the body, we have a double whammy.


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Regular Member

Date Joined Mar 2008
Total Posts : 60
   Posted 10/15/2008 6:47 PM (GMT -6)   
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.
~ Bee

God is the strength of my heart! - Psalm 73:26

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Date Joined Apr 2006
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   Posted 10/15/2008 10:25 PM (GMT -6)   
Everyone should have their vitamin d levels checked.  There is a growing body of research linking vit d deficiencies to auto immune diseases and cancer.  Supplements should be taken if you are low.  It is difficult to get enough in a normal diet.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller

Veteran Member

Date Joined Jun 2008
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   Posted 10/15/2008 11:11 PM (GMT -6)   
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.  
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing

Regular Member

Date Joined May 2008
Total Posts : 58
   Posted 10/15/2008 11:21 PM (GMT -6)   
A year agoJune I had my thyroid removed at that time they found out my Parathyroid levels have been thur the roof. They don't know why, but my calcuim level are down in the dumps but so is my Vit D levels I'm back on 50,000 units of Vit D a week. We can't get the one down and the others up. It has been a year and half. The Doc's tell me normal is that the parathyroid levels and the calcuim levels are both either high or low, not like mine 1 high and the other low.

Fibro since 97, Lupus since 99, neuropathy and other nerve damage.
On to many Meds to list, Finally got a date for SSA of July 1 after to many years of fighting for a hearing.

Regular Member

Date Joined Aug 2008
Total Posts : 271
   Posted 10/18/2008 7:14 AM (GMT -6)   
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.

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 10/18/2008 9:25 AM (GMT -6)   
Hi There:

I too have low Vitamin D levels. I've taken at least three different rounds of supplements to get my vitamin D levels back up to the normal level. Of course, I avoid the sun as much as I can and I'm sure that has a huge impact on my levels.

I recently found out that my latest bone density test was 16% worse than last years and I'm at serious risk of fracturing a bone. Eight years of steroids are really taking a toll on me. Not only are my bones weakened, but I've got cataracts in both eyes. I'm going to see if I can get in and see the eye doc and maybe get the cataracts removed some time soon.

Anyway, I also have low levels and I drink vitamin D milk and take my supplements. I hope all of your levels come up quickly.

Take care,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 10/18/2008 1:45 PM (GMT -6)   
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.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, now cellcept

Tá mé breá
Regular Member

Date Joined Aug 2008
Total Posts : 140
   Posted 10/19/2008 1:04 AM (GMT -6)   
I just read an article in our local paper that the pediatricians have upped the daily allowance of Vit. D for children due to research showing low vit d levels lead to autoimmune diseases.

so is it the disease that cause the deficiency, or the deficiency that causes the disease?
Marie-43 yr old mother of 6 grandmother of 1 going on 2!
dx 2008 - myelofibrosis - possibly autoimmune, osteoarthritis in spine, testing for possible MS or CNS lupus / vasculitis. family history - mother RA/Lupus maternal gma - lupus.
rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, b6, b12, flaxseed oil, C.

"All we have to decide, is what to do with the time we are given" ~ Gandalf

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 10/19/2008 2:42 PM (GMT -6)   
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.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, now cellcept

New Member

Date Joined Oct 2008
Total Posts : 1
   Posted 10/30/2008 10:15 AM (GMT -6)   
 I'm taking Vit D tablets prescribed by my GP after my blood tests showed i was extremely defficient. however, recently i had further tests and they came up as abnormal with regards to my autoimmune. I'm seeing a Rhumatologist next month, however could a lack of vit d be related to autimmune deseases? 

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 10/30/2008 12:10 PM (GMT -6)   
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

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 11/1/2008 12:07 PM (GMT -6)   
My Vitamin D level is low and my rheumy put me on 50,000 IU a week.

From what I've read low vit d levels have been found in people with heart disease and low levels are associated with PAD. In the article below it states Vit D may protect the heart, etc.




Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)

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