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Old 02-06-2010, 05:12 PM   #1
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alex9000 HB User
vitamin d deficiency

has everyone who has autoimmune problems been tested for vitamin d deficiency?

i'm curious about the relationship between autoimmune and vitamin d deficiency. A lot of people i talk to who have a autoimmune disease and that have tested their Vit D find out they have a vit d deficiency. Vit D deficiency can cause fatigue and pain and other symptoms.


i've suspected that what is going on with me may be auto-immune and I have had a vitamin d deficiency for a couple years now. I don't know why i have a vit d deficiency - i get enough sun and i eat enough foodstuffs with vit d. I will go on 50,000 for 6 weeks and then my Vit D goes into the normal range but then if i test 5 months later my Vit D has dropped down into deficiency levels.

my question is what could be zapping my Vit D. It may be an autoimmune thing.

so has everyone tested their vit d?

alex-

 
Old 02-11-2010, 05:52 AM   #2
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Re: vitamin d deficiency

Alex,

Vit D deficiency is widespread especially in the US. I am on 4000 of Vit D every day for prevention of cancer. I have skin cancer and it was recommended to me by my Oncologist to increase my D.... Also I have insulin resistance and people with Insulin resistance usually have low D and low Magnesium.

I was always taught to limit my Vit A D E and K because they were not water soluable and could build up in your system. But D is very very important.


Does one cause the other or vise versa? Hard to say. I watch my animals and they no matter what find a spot of sun to lay in everyday. Sunshine is the best way to get natural vit D. Everyone is so afraid of the sun but even with skin cancer I make sure to get a dose of sunshine each day.

I have 2 known autoimmune disorders and a 3rd is suspected so I hope the VIt D I am taking will help.

Oleander

 
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Old 02-11-2010, 08:25 AM   #3
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Re: vitamin d deficiency

Interesting. I just posted about this on the fibromyalgia board.

I've had auto-immune issues for years and was finally diagnosed with fibro (for the 2nd times, I didn't believe it the first) last fall. I was at the rhuematologist's the other day and I brought with me a list of ingredients that were in some "fibro" vitamins I was going to order. I didn't recognize some of the things listed, so I just wanted to make sure that nothing would interact badly with the medication I'm taking. When the doctor looked over the list he said "you know, we've never checked your vitamin D level". So he ordered the blood test.

I got the results today - the "normal" range in the 25-hydroxy vitamin D test is 30.0 to 74.0 ng/mL, mine came at 5.

I'm actually a bit ticked off that no one thought to check this before. My level is seriously low - and is probably the cause of a lot of my recent, (and some of my past) health issues. Perhaps I don't even have fibro - though I suspect I do, it's just that it would have been so simple to rule this out and no one thought to do so. My PCP ordered every test under the sun (no pun intended. lol) and never was vitamin D even suspected even though I have EVERY single one of the "symptoms".

It's very frustrating. So I'm on the 50,000 iu vitamin D pills for 8 weeks - and will be retested after that.

If I hadn't brought in that ingredient list - I would have never been tested, and THAT is scary.

Crazy stuff, medicine.

Good luck.
__________________
At 25 Dx of FM, +ANA Elevated SED Rate 1995
At 30 Stillbirth - fibroids and PCOS 2000
At 35 Hysterectomy due to PCOS & precancerous cells 2005
At 40 Dx of FM - this time I believe it -ANA 2009

 
Old 02-11-2010, 11:44 PM   #4
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Re: vitamin d deficiency

Quote:
Originally Posted by TiredMother View Post
Interesting. I just posted about this on the fibromyalgia board.

I've had auto-immune issues for years and was finally diagnosed with fibro (for the 2nd times, I didn't believe it the first) last fall. I was at the rhuematologist's the other day and I brought with me a list of ingredients that were in some "fibro" vitamins I was going to order. I didn't recognize some of the things listed, so I just wanted to make sure that nothing would interact badly with the medication I'm taking. When the doctor looked over the list he said "you know, we've never checked your vitamin D level". So he ordered the blood test.

I got the results today - the "normal" range in the 25-hydroxy vitamin D test is 30.0 to 74.0 ng/mL, mine came at 5.

I'm actually a bit ticked off that no one thought to check this before. My level is seriously low - and is probably the cause of a lot of my recent, (and some of my past) health issues. Perhaps I don't even have fibro - though I suspect I do, it's just that it would have been so simple to rule this out and no one thought to do so. My PCP ordered every test under the sun (no pun intended. lol) and never was vitamin D even suspected even though I have EVERY single one of the "symptoms".

It's very frustrating. So I'm on the 50,000 iu vitamin D pills for 8 weeks - and will be retested after that.

If I hadn't brought in that ingredient list - I would have never been tested, and THAT is scary.

Crazy stuff, medicine.

Good luck.
5 is dangerously low and I bet that is what is causing a lot of your symptoms. BTW - are you on vitamin d2 or d3? I went on d2 and it did nothing to raise my vitamin d but then an endocrinollogist put me on d3 and it brought my levels up to normal for awhile.

 
Old 02-12-2010, 05:15 AM   #5
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Re: vitamin d deficiency

I believe it's D2 that I'm taking - but I'm not sure. I will check on that because obviously it makes a difference.

I just got an email from the doctors office this morning that my lab results were online - so even though they called me and told me, I decided to look at them myself.

25-Hydroxy D2 - <4.0 unit ng/ml
25-Hydroxy D3 - 6.7 unit ng/ml

Interpretation: <10 (severe deficiency)
Optimum levels in the normal population are 25-80

So I guess when they told me 5, they were just averaging the two totals together? That sounds to me like the nurse doesn't even understand that D2 and D3 are different.

This is so frustrating.

The interesting thing is that once I read the results - I was almost relieved that finally something showed up on a test. Since there isn't a definitive test for fibromyalgia, you tend to feel like it's the "catch all" diagnosis when they can't find anything else wrong with you. Uggh.
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At 25 Dx of FM, +ANA Elevated SED Rate 1995
At 30 Stillbirth - fibroids and PCOS 2000
At 35 Hysterectomy due to PCOS & precancerous cells 2005
At 40 Dx of FM - this time I believe it -ANA 2009

 
Old 02-18-2010, 02:46 PM   #6
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Talking Re: vitamin d deficiency

I just found out my Vit. D level is 4 (D2 <4 & D3 4) VERY LOW. Dr. put me on 50000IU 1/week for 8 weeks. What I am wondering is what causes it to be so low? My biggest symptoms are extreme fatigue (now at least I have an answer for my BF when he just thinks I am being lazy) and muscle aches (mostly back/neck) which I was always attributing to my herniated disc, which it still needs to be taken care of. I also have high TSH level, 6.60, getting re-tested tomorrow. Anybody know how long it takes for this level of D to get responses from the body and if the two problems (Vit D deficiency & Hypothyroidism) have anything to do with other diseases? ANy info. would be appreciated as I am just atarting to research Thanks to all, this seems like a great site for anwers. Kat

Last edited by katbry49; 02-18-2010 at 02:47 PM. Reason: copy/paste

 
Old 02-18-2010, 07:29 PM   #7
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Re: vitamin d deficiency

Yes I have just been diagnosed low Vitamin D and I have MS. I am currently on Copaxone Injections and have I am having severe hive problems. That is when I went to the Dermatologist and she tested my blood.

 
Old 04-15-2010, 09:06 AM   #8
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Re: vitamin d deficiency

I am so happy I found this thread and hope you're all still out there!

TiredMother - in response to your post about levels, my doctor told me that to get the total D by adding the D2 and D3 levels together (she also said a normal D2 level is usually <4 unless you're already supplementing with D2.)

I was told my vitamin D levels were severely low - but mine aren't as low as some of the ones posted in this thread! My level was 15 ng/mL, and I've been feeling like garbage for almost 7 years now. I've been tested for everything else, but never for this. And for years I kept getting insinuations that my severe, utterly debilitating fatigue was "psychological" in nature. Which of course made me feel humiliated and slightly crazy.

I am a female in my mid-30s with no children, and since I was 29 I have had these symptoms of severe fatigue, muscle weakness, etc. I was diagnosed with a gynecological disorder called DIV, which is thought to be autoimmune in nature, but aside from my gyn no other doctor has thought there was any significance to the fact that I have this and feel as bad as I do.

I've been reading a lot of new studies about the connection between autoimmune disorders and Vitamin D, and I am very hopeful that this will make me feel better. If I can just overcome the fatigue I will be so thankful.

I too have been put on 50,000 IU for 8 weeks (it's D2 - I know there are arguments that D2 is not as effective as D3, but I've talked to my gyn and read some recent studies in the New England Journal of Medicine and I feel comfortable with this as a first try. If my levels haven't improved after I'm retested I will rethink this and ask more questions).

One thing I have noticed is that after only 2 doses I'm having bone pain that I never had before. It's not severe by any means, but I'm wondering if this is something anyone else has experienced?

 
Old 05-13-2010, 03:04 PM   #9
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Re: vitamin d deficiency

Hi Tiredpoet,
I would call your dr. I was taking 50,000 iu and it knocked the stuff out of me.
I took it 1x a week for 2weeks and it made me even more tired. My dr told me to stop the 50,000 and to take 2000iu of D3 daily and get tested in 8 weeks. Best of luck!
I suffer autoimmune addison's disease.

 
Old 05-16-2010, 09:36 PM   #10
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Re: vitamin d deficiency

Hey all,

Sorry to hear that everyone is feeling so cruddy and having a Vit D deficiency.

I have autoimmune thyroiditis or Hashimoto's and I have a Vit D deficiency although not as deficient as some of you but deficient none the less..

I was put on 50,000 ui Vit D2 1/wk for 12 weeks like most of you. I have only taken them twice as I am newly diagnosed with both hypoT and Vit D deficiency. So I wanted to ask all of u who have been taking Vit D the 50,000 iu pills, Do you get a burst of energy the day you take the pill and the following day?? I seem fell pretty good for about 24-48 hrs after I take it then I feel my self slowly slipping back to the same muscle fatigue and aches and pains and lethargy..

Please let me know if any of you have felt the same after taking ur dose of Vit D.

Thanks for your response in advance!

 
Old 05-17-2010, 07:45 AM   #11
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Re: vitamin d deficiency

I am on my second prescription of the vit. D. I never felt a difference. I never knew I had a deficiency. I was just having a physical and found out I was low, mine was at 22. I have never felt fatigued from it. Never felt energy from taking the vitamin, but nevertheless, I am taking my second round of it, and then I am going on vitamin D-3 2000 mg.

Sunny

 
Old 06-15-2010, 04:43 PM   #12
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Re: vitamin d deficiency

How are you feeling now? Have you noticed a difference?

I, too, found out I had a Vitamin D deficiency after nearly a year of "mystery" (read "all in my head") joint problems, fatigue, sleeplessness, GI issues and inflammation of all sorts. After a year of doctors and testing, I finally asked about my vitamin D levels. I was moderately deficient. I went on the 50,000 IU and couldn't believe how much better I felt within a month or so. However, in the last 2 months the joint problems and inflammation have begun again (it's got the same "flare-like" schedule as it originally did over a year ago). The only change is that I take the Vitamin D once a month now, rather than once a week...Is there a connection here????

What IS this link w/auto immune diseases? Or is this something else entirely? Am I trying to connect dots that don't connect?

 
Old 06-16-2010, 04:30 AM   #13
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Re: vitamin d deficiency

Hi!
I was feeling better with taking D 3 2000 IU daily, but I had addison's and I ran myself down so not feeling as good right know. The Rx 50,000 IU of Vitamin D made me feel exhuasted. So my Dr told me to take 2000 Iu daily. I go soon for the blood work. I was wondering if the inflamation is coming from wheat products, I suffer with the aches and inflamation when I eat wheat products(to much). I can get away with alittle. I hope this helps. When do you get your D level checked again??

 
Old 06-17-2010, 11:24 AM   #14
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Re: vitamin d deficiency

Hi! Yes, good point about the wheat. I do try to avoid it, usually. I have been a bit less attentive lately. I'm trying to be more careful again.
So sorry to hear you are feeling run down. Take care of yourself and hang in there!

PS I get re-tested in a couple of months.

 
Old 06-19-2010, 05:39 PM   #15
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Re: vitamin d deficiency

Hi Cole 123,
Just courious do you have an autoimmune diesese? I have Addison's (autoimmune) and Hypothyroidism. Before being treated for the Addison's I did suffer more so with the joint pain and arthitis.

 
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