problems tolerating vitamin d supplements?

Discussion in 'Fibromyalgia Main Forum' started by Dicey, Jan 8, 2009.

  1. Dicey

    Dicey New Member

    Hi everyone:

    Haven’t been to these boards in a year or so as I am doing WAY better from my ME/CFS. But my doctor and I are still working on getting me back to where I want to be, and we found my vitamin d levels were low.

    The problem I am having is tolerating any of the supplements (and prescription) we’ve tried. Has anyone else had this experience? If so, did you eventually find a particular brand that worked for you? Or how did you deal with it?

    I do OK with the first dose usually, but then start to feel progressively worse, the longer I keep taking it. All my symptoms get worse, low-grade fever starts up again, and the worst thing is my sleep gets all messed up again—it is like I am too wired. Somehow it just seems like my body does NOT agree with taking vitamin d supplements! I am keeping at it, trying to take it only every few days and see if I can tolerate it in lesser amounts.

    My dr. and naturopath both say they have never heard of anyone not tolerating vitamin d and strongly encourage me to continue.

    Anyway, curious if anyone else has had problems and how they dealt with them. I am so tired of things that are supposed to make me feel better winding up making me feel much worse!

    But super-glad to be way better overall :)

    Thank you!
  2. mmztcass

    mmztcass New Member

    any supplement/vitamins I begin, I begin with the lowest doses possible and then work up. I usually know within a week if I'm going to have any problems. I have never been able to take a full dose of anything, and noticed the same problems with the medicine. When I first began seeing a Rheumy for the RA, I asked to start out with the Methotrexate on the lower doses possible and then work up as needed.

    Take care... :)
  3. Elisa

    Elisa Member


    I also have low levels and get very sick after even the smallest dose of Vit D3 The last two times I ended up in the ER with heart and breathing problems. I wish I knew why?

    God Bless.

  4. Rosiebud

    Rosiebud New Member

    intolerance to medications and supplements are very common with our illness. Its very frustrating and I really dont know why or what can be done about it.

    If there are side effects I get them.

  5. greatgran

    greatgran Member

    I thought it was just me so glad you posted this. I am low in vitamin D3
    and have tried the supplements . The first time I tried a large dose and got so sick and Depressed, I thought I was dying, didn't dream it was the vitamin D. I finally got to sick to take anything and finally got to feeling better, so tried only a 1000 units of D3 within 3 days I started the nausea and depression again. Last week I thought I would try it again and the same thing.

    My vitamin D3 is only 17 so I need it but why is it making me so sick and depressed? I am going to try to get out in the sun but this time of year its hard.

    Yes, I do have trouble with other supplements. I am now taking a multiple vitamin, vit. C and magnesium and these don't seem to bother me. I had one doc tell me just to take 3 multiple vitamins a day , one with each meal and see how that works. He also wants me to start on B complex, haven't yet. I am lucky if I get my Vit. C and multiple vit. thats about all I get down.

    It's not you , I have the same problems.

    Let me know if you find any kind that works.
  6. mmztcass

    mmztcass New Member

    Look for any 'inactive' ingredients in the vitamin D3 supplement. I can't have Soy, it will make me hypER from the Graves Disease I have. I have a bottle of a liquid dropper 2000 I.U. of Vitamin D3 which contains just a bit of Soy. I do okay with that since I only use it once per day of one teensy weensy drop. Then I also take it in a tablet form by Dr. Weil of 1000 I.U. of vitamin D3. I also have additional vitamin D3 in my multivitamin.

    I try to buy supplements/vitamins that have the least amount of 'inactive' ingredients so I don't have a cause for any reactions.

    Take care... :)
  7. Dicey

    Dicey New Member

    thanks so much everyone who replied! Glad to know I am not alone in this! that is a great tip on minimizing inactive ingredients--I am going to look closely at the ingredients tomorrow...

    take care everyone,
  8. lukro

    lukro Member

    Dicey, I cannot tolerate vit d 3 in any form. I tried many different brands and some w/o any fillers (or few fillers) and they all whack out my thyroid. I also tried various doses--same bad reaction.

    Do you, by any chance, have thyroid problems? On another board (thyroid) several people have the same difficulty (the vit d interacting badly w/ thyroid).

    In the meantime, my vit d level is extremely low and my doc is puzzled how to increase it. I also live in the pacific northwest and we get little or no sun.

    You are not alone. If you figure out why you cannot tolerate vitamin d, please let us know.

  9. Since your Dr is a Naturopath, any chance of doing weekly vitamin IV's?

    I can't tolerate many medications (pain meds, specifically) and just about any vitamin/supplement, and even when I *do* tolerate them, I don't absorb them, due to basically being torn up from my throat to my b**t.. literally..

    My integrative medicine dr had me doing weekly vitamin IV's, for a while... until a bunch of things came up, financially, a couple of years ago, him being an Integrative medicine doctor, naturally, everything was out of pocket.

    I did not feel 'better' per se, from the IV's, but, we at least knew I was getting SOME nutrition. Sometimes, actually, most times, I had to come home (only 5 blocks away!) and nap for quite a while, after my IV...

    I don't know if it was sitting there for an hr (in a very very cushy recliner), or the lights (the drs office lights, hospital lights, etc make me "sick" i.e. fatigued, migraine headache, very sluggish)

    The lights at school used to do the same thing, so, I was always a "slacker"... turns out I was just truly 'sick' and the lights made me extremely sick & sluggish.

    the IV's cost me almost $121 a week... but, when* we could afford it, hubby insisted on them... hoping anything would help, & knowing (via bloodwork) that I am at least deficient in 4-5 different things, as well as having numerous virus', baterial infections, systemic yeast, & mercury & bismuth toxicity...

    That's something to *mention* to your doctor, anyways...

    I don't know if "D3" comes in I.V., or even IM shot form, but, I'm supposed to start 2,000 IU of it, with a multivitamin as well, and haven't so far, due to being too sick to even leave the house, and also knowing I won't be able to tolerate that dose.

    The IV's I got, were a bunch of different vitamins, and we called it the 'big' bag, & "banana bag" due to the yellow color... they *TASTE* nasty, but, they were worth it... sometimes, as bad as I am now, I wonder if I might be better if I could've continued those,

    or at the very least, if I wouldn't have gotten two NASTY, NASTY flu's already, from Mid-September, thru Dec 27th.. (high fevers, first for me in many many years), as I normally go through 'phases' of 'low grade' fevers, up to 99.6*

    Anyhow, if your doc could give u shots, or IV's of it, you might not suffer as bad, and the cost may not be as much as the huge multi-vitamin bags I got (along with a B12 shot 'chaser' lol).

    Good luck... I have to see my pain clinic NP Monday, and plan to discuss the same thing..

  10. mmztcass

    mmztcass New Member

    I have had Graves Disease for over 8 years now. Prior to that I had undiagnosed hypOthyroid symptoms for 35 years since as a teenager. I never got it checked out but recognized the symptoms once I got GD and was overmedicated which brought me to hypO symptoms. before I corrected my antithyroid doses to get out of the hypO hell.

    I seem to do fine with supplementing the vitamin D3 with the GD I have now.

    What kind of thyroid problems and/or symptoms are we talking about here to make it hard to supplement with vitamin D3? It could be because vitamin D3 is a hormone together with thyroid. That's something for me to think about.

    Thanks and take care... :)
  11. lukro

    lukro Member

    I'm talking about hypothyroid problems--hashimotos specifically. Yes, the hormones together cannot be tolerated by some w/ hashimotos. Why some people and not others? Don't know, but am very interested in figuring it out.

    Some people on the thyroid board say that they discovered that they needed less thyroid medication when on D3. For me, when I take D3 it makes me extremely hypo. My doc did a blood test and I was more hypo when on D3.
  12. tony233

    tony233 New Member

    Have you tried the D2 form of Vitamin D. I seem to tolerate it better.
  13. lukro

    lukro Member

    No, I did not try D2 because I read somewhere (or heard) that it is basically useless.

    What was your D level prior to D2? What is it now? I should try it.

  14. Forebearance

    Forebearance Member

    Hi Dicey!

    I have been having problems tolerating large doses of Vitamin D supplements, also.

    I bought little sublingual lozenges that are 2000 IU of D3. If I take a whole one, I get depressed. So I have been taking a very small amount of one.

    When I read that Vit D acts more like a hormone, then it made sense. I'm very sensitive to hormones and any changes I make in hormones have to be done very gradually.

    Thanks everybody for sharing tips about this. I'm going to try a different brand and see how it does.

    I also am hypothyroid and take Armour thyroid and Thytrophin supplements.

  15. SpiroSpero

    SpiroSpero New Member

    I have the same problem with most supplements. I tolerate the first doses and then slowly or sometimes very fast start building up an intolerance. Reason unknown but I suspect a viral cause.
    I know some people who now tolerate everything again after they have been treated with Valcyte.
    Please read:

    HHV-6 Drug Induced Hypersensitivity Syndrome

    Numerous studies have linked the reactivation of HHV-6 to Drug-Induced Hypersensitivity Syndrome (DIHS)/drug rash with eosinophilia and systemic symptoms (DRESS), an uncommon but severe cutaneous adverse drug reaction characterized by acute widespread erythmea with high fever, and multi-organ involvement, especially liver dysfunction. However, the specific mechanisms for viral reactivation and modification of the clinical features remain unclear. A small in vivo study in Japan demonstrated that HHV-6 reactivation induces synthesis of proinflammatory cytokines, specifically elevations of TNF-a and IL-6, which may modulate the clinical features of the syndrome (Yoshikawa et al. 2006). Preliminary results from a study in France suggest that the immune response observed in DRESS patients is principally directed against Human Herpesviruses, especially HHV-6 (Descamps 2006). Another study sought to determine whether herpes viruses reactivate from latency in an obligate order in the course of DIHS, and whether herpesviruses contribute to the clinical manifestations of the syndrome. The real time PCR results from patients with severe DIHS demonstrated that herpesviruses reactivate in a sequential order as described in patients with graft-versus-host disease (GVHD); the sequential herpesvirus reactivation is coincident with the various clinical manifestations in patients with DIHS (Kano et al., 2004). Finally, a group in Japan retrospectively analyzed reports of DIHS published in medical journals and found that nearly 84% of DIHS patients had HHV-6 reactivation by increase of HHV-6 IgG and/or increase of HHV-6 DNA in the peripheral blood (Aihara 2004).