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BAD REACTION TO D3 SUPPLEMENTATION

Discussion in 'General Treatment' started by alice111, Jan 23, 2013.

  1. alice111

    alice111

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    I have recenlty discovererd after trial and error that vitamin D3 supplement is bad news for me. It has been the only variable- started it symptoms flared- stopped it they calmed down, and did this twice 6months apart. It is bizzare and hard to understand, but it very definatley causes some kind of flare. Join pain gets worse, i get chilblains on my feet, and other symptoms.

    Has anyonelse had this??? dOes anyone understand why? the only thing I have been able to find is Marshall, everything else seems to say vitamin D good. However accoring to marshall the sun is bad too, but i do not get these symptoms with sun exposure, just the oral supplementation. if anyone could shed some light that would be greaaaat!
    thanks,
    jasmine
  2. Ema

    Ema Senior Member

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    Most vitamin D tests measure the storage form, 25-OH, because the body generally keeps pretty tight control on the active form, 1-25D. In healthy people, it is usually pointless to measure the active form because no matter if you are high or low, the level will generally be pretty steady around 20-30.

    However, in some people with chronic inflammatory illnesses, the body loses the ability to regulate to the active form. So when you get high levels of 25-OH D, the storage levels can climb up to 75 or 100 and cause a whole host of problems not including immune suppression. This is generally the exact opposite effect that most of us want considering why we started taking vitamin D. This may also cause a problem with the Vitamin D receptor.

    I actually think that a lot of people are going to shoot themselves in the foot trying to get high levels of 25-OH and not also keeping an eye on 1,25 D especially if they have a chronic illness like ME/CFS. I have revised my previous opinion on this matter and think that a level of 25-OH that is more sensible is in the range of 50.

    Here is an essay that may help explain this all better:

    http://arizonaadvancedmedicine.com/articles/immune_system_dysfunction.html

    Were you taking a high dose of D3? Have you had any recent testing of vitamin d to know that you have a deficiency?

    Ema
    alwayshopeful likes this.
  3. alice111

    alice111

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    Great info, this is what i have been reading. i just last week had a test done for both 25 and 1,25. so far the 25 came back and is low, waiting on the 1,25 which is really the one im interested in. very curious to see what it shows. do you have any ideas on why the sun would not create the same problem as the d3 supplementation? thanks for your reply!
    jasmine
  4. Ema

    Ema Senior Member

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    I'm not sure where you are located but in many parts of the US, it is not even possible to make Vitamin D from the sun during almost half the year due to the angle of the sun. I think Mercola has a chart on his website that allows you to calculate your own location. So it's at least possible that you are not making much Vitamin D from the sun for most of the year despite exposure.

    Ema
  5. dannybex

    dannybex Senior Member

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    If your 1,25-d is high, it may also be simply because your calcium is low -- which can be a natural result of low vitamin d, especially if it's been low for years.

    Mine 1,25-d was high recently -- actually the first time I had it tested -- and in hindsight I've been eating very little calcium-rich foods and not getting much calcium supplementation either. Since increasing the calcium, I'm able to tolerate vitamin D3 much better. I haven't had the 1,25-d retested yet -- will wait a few months -- but have been advised to continue the vitamin d3. It regulates immune function.
  6. Ema

    Ema Senior Member

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    https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=177
    Crux likes this.
  7. dannybex

    dannybex Senior Member

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    Which completely contradicts the CIR advice that vitamin d (25-d) supplementation increases1,25-D levels.

    From the second study: "...
    The dietary calcium:phosphorus ratio was inversely related to serum 1,25-(OH)2D."
    Which suggests that 1,25-d may have been high due to low dietary calcium/phosphorus.

    It should be noted that the CIR group is an offspring of the Marshall protocol folks -- many of whom are still taking antibiotics daily (Meg Mangin who heads the group has been taking abx for TWELVE years). Marshall always insisted that his protocol cured a variety of illnesses within 2-3 years...

    High calcium of course is a concern, and could suggest sarcoidosis. But low calcium is an unreliable blood test (from what I've read) as 1,25-d will pull calcium from the bones (causing pain and bone spurs!) if there isn't enough calcium in the diet.

    Vitamin D and Innate Immunity:

    http://www.ncbi.nlm.nih.gov/pubmed/20067648

    Vitamin D and anti-microbial peptides:

    http://www.ncbi.nlm.nih.gov/pubmed/20067648

    http://www.ncbi.nlm.nih.gov/pubmed?...ez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

    Tuberculosis is a disease with similarities to sarcoidosis. Here's a study re vitamin d deficiency and TB:

    http://wwwnc.cdc.gov/eid/article/16/5/09-1693_article.htm





    d.
  8. robertpcx

    robertpcx

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    Do you supplement with magnesium? Magnesium like calcium goes hand in hand with Vitamin D3 not magnesium oxide though, magnesium chloride, or magnesium oil which is sprayed on the skin and rubbed in, absorbed through the skin is more easily tolerated and goes directly into the blood stream. The ratio of magnesium to calcium should be 1 to 1. They should be taken at different times of the day magnesium and vitamin D3 in the morning and calcium in the evening. Calcium will block magnesium from the chemical receptors it needs to attach to in the brain.

    You might check out: She has much info about calcium magnesium and D3 and their interactions:
    Overdosing Vitamin D3

    Carolyn Dean MD ND | Monday, December 24, 2012
    Magnesium experts, Morley Robbins, Rick Mather and I are crafting an article on the problems with excess vitamin D. It will shatter a lot of myths about this substance including the fact that it’s not even a vitamin but really a hormone.
    To illustrate our point, here is what a member of the The Magnesium Advocacy Group wrote about her experience with Vitamin D3 on Facebook.
    “Due to having severe bone lose my doctor told me to take D3 but did not tell me to take magnesium. After being on the D3 at dosage of only 2000mg per day I started having cramps, heart palpitations, fatigue, insomnia, high blood pressure (I had always had low BP ) and many other problems. I thought it was the D3 so I stopped and started doing research to find that you never take D3 without mag. If your magnesium level is already low the D3 will use up more of your magnesium and cause all kinds of problems. All that summer I could not even get out in the sun to get natural vitamin D without getting heart palpitations and cramps in my legs. It has took me almost 2 yrs and I am still not 100%.
    She continued. “I have come to believe that with low magnesium everything is off. Your vitamin D will be low because it needs magnesium and your cholesterol will be high if magnesium levels are low. Before taking magnesium my cholesterol was running a little high. Thyroid level was running low and my D was never checked but am sure it was low also but when my blood work was done again after taking magnesium for about 6 months my thyroid levels and cholesterol levels were both back in normal range plus my iron had gone up from 41 to 82 and my B12 had gone from 401 to 800. Fasting blood sugar went from 103 to 98. The only thing I was taking was maggie so I know that is what did it.”
    Bottom line? Magnesium is active in over 80% of the body’s biological functions so many of the interrelationships and intricacies haven’t even been studied yet. What do we suggest? Keep taking your magnesium and to balance your vitamin D, use natural sunlight, cod liver oil and butter oil for the necessary vitamin A and vitamin K that make vitamin D work properly. Go to the Weston A. Price Foundation website for more information.

    http://drcarolyndean.com/

    http://drcarolyndean.com/2012/12/overdosing-vitamin-d3/

    There is a listing of other blog entries at the bottom of the webpage, on the above page you should check them out to.
  9. penny

    penny Senior Member

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    Yep, me too! I don't know that I can shed much light on the why, but my ME symptoms definitely get worse when I'm supplementing vit. D.

    My last trial with supplementation was a small dose of equilbrant which I described in these two posts (1, 2). Since then I have also started minimizing dietary calcium and vitamin D, and have noticed a difference when I'm a little more lax on this. For example I ate a couple of servings of frosted flakes in the fall (I didn't realize it is enriched with vitamin D) and had a noticeable increase in muscle pain and cramping within a couple of days. I think avoidance helps me feel better, but I got pregnant a couple of months after figuring out this connection which confuses things somewhat - though the frosted flakes were during the pregnancy, so it seems I am still sensitive to vitamin D. Just for clarity I don't totally avoid D/calcium foods, I still eat butter and have occasional nibbles of cheese or a cappuccino, but I mostly avoid them.

    I also haven't been able to pin down whether I have negative effects from the sun. Despite being in a good location for sun generated vitamin D, I don't spend a lot of time outdoors. But occasionally I do get a fair amount of sun, and I haven't had any noticeable or distinctive side effects from that.

    As to the why, I briefly hoped it was because of hyperparathyroidism, which is attractive because it is comparatively treatable. My blood calcium levels do seem to fluctuate more than is normal, and have several times been on the high side of normal, but my PTH (pituatary hormone, I think) seems to be behaving as it should (low when my calcium is high), so the endocrinologist said "no". But this might be worth looking into.

    There's also some discussion on this thread "second guessing the consensus on vitamin D" (the first 11 or so posts are the article in question being pasted), I found the posts by Syptomatic useful and interesting, she doesn't identify as having ME, but has the negative reaction to D and seems very knowledgeable about some of the reasons why this might be the case.

    [I also supplement a lot of magnesium (oral and nightly epsom salt baths) for most of my illness and while I think it helps 'mitigate' the effects of calcium/d, I still am unable to tolerate them even with my high magnesium intake.]

    I hope some of this helps, and I just want to say that while this reaction to D kind of sucks, I've been really glad I discovered this interaction because it gives me something that I can do that helps me feel a little better (despite my occasional cheats ; ) Good luck!
  10. maryb

    maryb iherb code TAK122

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    Hi Penny I too have major problem with supplementing with vit D, I feel really ill pretty quickly, yet I love being in the sun and always feel better in the summer ( yes we do get a little sun in the north of the UK!!)
    Its difficult to get your head around this stuff at times.
    I will post my vit D results when I can dig them out, I was advised by one doc to take vit D and another not to......
    penny likes this.

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