Vitamin D, osteopenia and sarcoidosis

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I am very confused about what to do.  Background - many years ago, about age 35, I was diagnosed with sarcoidosis.  It was completely asymptomatic and I thought nothing more of it until a couple of years ago an x-ray revealed traces of, as they put it, "old granulomatous disease" in my body - it was an x-ray of my spine so I assume these traces are in or near the lungs.  I'm currently taking prednisone for polymyalgia rheumatica, another inflammatory disease, and consequently taking significant Calcium and Vitamin D3 (and other relevant supplements) to protect my bones (already told I have "low bone mass").  Recently had Vitamin D level tested and I am nearing toxicity, level of 169.  A bit of reading on the internet makes me wonder if the presence of these granulomas can be causing this, as I certainly haven't been taking outrageous amounts of D3 supplements, nothing out of the ordinary for someone in my situation and age (I'm now 69).  Don't know what to do, really.  Have stopped the extra D supplements, especially as it is now getting sunnier, and hope that things get normal soon.  But should I be worried about my bones - apparently this high level of D is a problem, far worse than a slightly low level for people with sarcoidosis.

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  • Posted

    What does your Dr recommend and how often do you follow up with him or her? Also do you see a specialist for sarcoid... ( very important) , how's your diet? Eat foods that help in inflammatory. Mint leaves, blueberries, WTC! Many more out there that help. Diet is very helpful for you and your sarcoid
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    • Posted

      Thank you.  As implied in my post, sarcoidosis hasn't actually been on my radar until this Vitamin D test.  So new thing.  No specialists involved yet.  Who treats sarcoid?  Not due to see GP until August or September.
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  • Posted

    Hi Anhaga,

    your case is very complex, so I don't think someone on the forums can help you with an answer. In my opinion (I have no medical background), you should definitely stop taking vit D. until the level decreases (maybe during the summer, but make sure you stay in the sun about 15 minutes a day so that your body absorbs enough vit d naturally). From september onwards, I would go back to vit d supplementation, but I won't take the dose recommended (maybe, take half of the recommended dosage). My advice is based on a similar situation: since I my thyroid was removed, I've encountered serious issues with vit d - the levels fluctuate up and down waay too much. When I was taking supplements, vit d levels increased too much; when i stopped taking them, the levels decreased. After a while, I decided to take half of the recommended dosage and it works perfectly (as an example, the recommended dosage for the supplements I'm taking is 6 tablets a day -- this will be in total 600mg calcium and 2000 UI vit d; for more than a year, I've been taking 3 tables, which means 300mg calcium and 1000UI vit d and my vit d and calcium levels are within normal limits. I also sent you some links regarding vit d supplementation and sarcoidosis in your private message inbox. Good luck and let us know how it goes... smile

    Magda 

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    • Posted

      Thanks.  My doctor had already told me to halve the dose, but after doing some reading and with summer coming I've decided to stop all D supplements I can avoid, and maybe even reduce the calcium slightly.  Thank you for the links.  
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  • Posted

    Hi Anhaga, 

    I am not a doctor and I was just recently diagnosed. I am 52 and have very low Vit D levels. The MS specialist that diagnosed me with Sarcoidosis said I need to take some suppliments; however I have been reading some case studies and such on the internet from doctors that says taking Vit D is dangerous for sarcoid patients and seeing the low levels doctors "mistakenly" prescribe Vit D. I would research this before continuing. I have decided not to take more than a multivitamin only. 

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    • Posted

      I just read a post on this site titled Vitamins and Sarcoids and several recommend no multi vitamins or clacium either and stay out of the sun. So hard to know what to do ; (
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    • Posted

      If your D has been checked and found low, then you should be fine to take it, or get sunshine.  The issue occurs when people have granulomas which convert the inactive vitamin D to the active form, which I suspect has happened to me, because now if I take supplements I run the risk of getting to a toxic level.  You don't.  And you do need D for bone health.

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    • Posted

      I htink we both need to get our D checked regularly, and also our blood calcium level.  I hope my doctor agrees.  She seems remarkably laid back about this problem!
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  • Posted

    I just got  prescription in the mail for 12 50,000 unit capsules of Vit D3. I am to take 1 each week for 12 weeks. It seems my Vit D level barely registered and I am extremely deficient. Maybe that's why I feel so bad. I have been taking multivitamins daily plus extra B12 but I never go outside unless I have a doctor's appointment because the wind hurts my face horribly from my trigeminal neuralgia which they now say was caused by the neurosarcoidosis. My husband wants me to take it but after everything I have read I just don't know but I think I need it so I guess I will. 

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    • Posted

      Somewhere I read an article which said that on balance sarcoid patients should be supplemented.  In your case I think there's no question you need the Vitamin D.  It's only those of us who have a high reading who need to be careful of our intake.  If I find the article again I'll private message you the link.

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