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Vitamins B12 & D Deficiency


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#1 docmartenmom

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Posted 22 February 2011 - 12:02 PM

Hi Everyone,

The specialist in NYC just called me with labs and said I have a Vitamin D deficency, as well as my B-12 deficiency (pernicious anemia - no intrinsic factor). I have had the B-12 deficiency for over 2 years now, remedied by weekly B-12 injections. She recommended 2,000 mgs/day of Vitamin D pills.

My question is - have any of you experienced BOTH vitamin deficiencies? I am curious if this is part of scleroderma or mixed connective tissue disease or not.

Thanks for your input - have a pain free day!

Lori

#2 Joelf

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Posted 22 February 2011 - 01:02 PM

Hi Lori,

Coincidentally, I have had the results of a blood test which showed my MCV (Mean Corpuscular Volume) to be raised to 104. (Normal level is between 84 and 98.) The reason I mention it, is that one of the reasons for the MCV raised levels are because of having too little Vitamin B12 and I'm going to have a few more blood tests to determine the cause. The tests are done at my doctor's surgery, not the hospital, so as they know very little about Scleroderma, I can see I shall have to keep them up to speed!! ;) They didn't mention Vitamin D levels; :emoticon-dont-know: but obviously I will have those checked as well as people like me with Interstitial Lung Disease can suffer with a Vitamin D deficiency, although to date I haven't had a problem with that.

We've got a interesting link here about Vitamin D deficiency and also about Vitamin B12 deficiency which I hope will be of interest to you and help with your question.

Jo Frowde
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#3 docmartenmom

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Posted 22 February 2011 - 04:35 PM

Thanks Jo, I'll look into the links - Yes, I think getting your vitamin D level checked would be very helpful for you with what you are dealing with. I'm fortunate I can drive to Manhattan to see an expert - having to teach your doctors about what you need is such an exhausting thought! They should be paying you in that case right? (((hugs)))

Lori

#4 ladyhawke

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Posted 22 February 2011 - 07:26 PM

My doctor told me to take the max for vita D, and I tested low for B as well, they said it was because of the drugs. Prednisone and Imuran. I take both vitamins now and have been ok. - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#5 docmartenmom

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Posted 22 February 2011 - 10:24 PM

Hi Lisa - I'm glad you're doing OK now. I have been getting weekly B-12 shots for pernicious anemia for over 2 years and I have a needle phobia, which is hilarious considering LOL! My doctor said to take 2,000mgs/daily of D - hopefully I can absorb it. I'm fretting I may not be able to absorb it, since I can't absorb B-12. ~ Lori

#6 Joelf

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Posted 23 February 2011 - 03:06 AM

Hi Lori,

I'm glad you started this thread; it's very interesting to me. Poor you, a needle phobia must be very inconvenient considering the amount of blood tests we Sclerodermians have to have! :(

I'm going to enjoy my blood tests because I always get a lot of pleasure from telling my doctor and the nurses how to do their jobs! ;) :yes: :lol:

Lisa, that's a good point that you've made; I'm on the same drugs as you, so that's actually quite a comfort.
Obviously everyone's different but it does ease my mind a little to know of others in the same boat......thanks to both of you!! :thank-you:

Jo Frowde
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ISN Sclero Forums Manager
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International Scleroderma Network (ISN)


#7 uknlv18

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Posted 23 February 2011 - 07:58 AM

Hi everyone,

I was diagnosed about 8 months ago with a Vitamin D deficiency, no mention of any B's at the time. This was before they knew about the Limited Systemic Sclerosis and all that. When my general practitioner found out about my condition he was going to stop prescribing the Vitamin D supplement, as Vitamin D usually has calcium in it as well to help your body absorb it. But I discussed it with my Rheumatology nurse and she said they prescribe it all the time, so perhaps it is a common side affect of the disease?

Glad to here you are doing better though.

Cheers
Jean

#8 docmartenmom

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Posted 23 February 2011 - 08:22 AM

Haha you're brave Jo - considering my needle phobia, I think someone's having a good laugh on my behalf now that needles are a weekly part of my life! :lol: From reseaching on the web and on this website, there seems to be a correlation between autoimmune issues and Vitamin D deficiency. Here's hoping I won't need 2 needles weekly :(

Lori

#9 docmartenmom

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Posted 23 February 2011 - 08:41 AM

Hi Jean,

From everything I've heard and read, Vitamin D supplements are recommended for Vitamin D deficiencies. I do know that when I get my weekly B-12 shot, my numbers on labs always come up high.

Hang in there Jean :)

Lori

#10 CraigR

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Posted 23 February 2011 - 11:18 AM

Regarding needle phobia - isn't there a sublingual (absorbed under the tongue) version that doesn't go through the stomach?

I understand pernicious anemia to be an autoimmune condition, from what I've read. Thus it wouldn't be surprising to see it in a case of scleroderma, since we often have the overlapping autoimmune conditions.

There have been several articles about the high rate of vitamin D deficiency among scleroderma patients, with some conjecture that it mught be involved in causation.

Good luck,

Craig

#11 Shelley Ensz

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Posted 23 February 2011 - 11:37 AM

Hi All,

I thought I'd pop in with some links regarding this thread.

Vitamin D Deficiency, Sunshine, and Scleroderma
and Anemia of Chronic Disease.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 docmartenmom

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Posted 23 February 2011 - 02:03 PM

Hi Craig and Shelley,

Thanks for the links - I read through them and they're very helpful :)

I cannot do sublingual - any oral B-12 will not be absorbed in my system, hence the weekly shots. I tried the sublingual last summer and it did no good, unfortunately. Ugh. Frustrating! When I meet with my doctor tomorrow I will find out more about it

Lori