Vitamin D sensitivity

MeSci

ME/CFS since 1995; activity level 6?
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I seem to have had an adverse reaction to Vitamin D, although the dosage is within the range that is supposed to be well-tolerated according to studies reported e.g. here.

I started taking an increased dose in mid-March, totalling about 2250 iu a day, about 1450 of which was D3 and the rest D2.

Either this was too much in itself, or I should have stopped after the spring equinox, when the sun is high enough for it to be possible to make enough Vit D in our skin as long as we get enough sun exposure - and I was getting plenty of that.

I started getting diarrhoea, frequent lower-back pains and polyuria that didn't respond to desmopressin, so was presumably kidney-related and involved excessive excretion of electrolytes in urine (solute diuresis).

Then I had two bouts of spreading unilateral numbness in one day, involving my face and arm, which alarmed me.

Although I don't know the cause of the numbness (maybe electrolyte deficiency? I hope that was all), other symptoms suggested kidney stones, which too much Vitamin D can cause via hypercalcaemia. Whilst kidney stones can resolve, hypercalcaemia can also cause calcium to be laid down in other places, which can be more serious.

I am feeling generally better since cutting Vit D back to about 1250 iu a day, reducing calcium intake (for a while at least), and I have also started taking more magnesium, in the glycinate form.
 

beaker

ME/cfs 1986
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Hi,

Are any of you sensitive to vitamin D supplementation?
Taking more than 500 units makes me weak, dizzy, nauseous and feeling drunk. Even at this dosage, I feel tired.

Is anyone familiar with this?

Thanks.
Sometimes the brand and form can also make a difference.
There was a recent study that showed that what is in the bottle of Vit D is often not what is on the label.
READ HERE
It could be that there is something else in there or the dose is not what it says.
The study suggests making sure you take a brand that is USP certified as they were w/o the problems than other kinds.
I use Nature Made and have no issues.

You can also get your blood levels checked for both CA and D to make sure you are getting enough and not too much.
 

nandixon

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Hi,

Are any of you sensitive to vitamin D supplementation?
Taking more than 500 units makes me weak, dizzy, nauseous and feeling drunk. Even at this dosage, I feel tired.

Is anyone familiar with this?

Thanks.
Yes, 500 iu is also about my limit for the benefits of vitamin D, versus more than that making my "normal" levels of fatigue/exhaustion much worse. I have to take it at night, and I can tell that even that amount causes additional next day tiredness, but I seem to end up feeling worse overall with lower amounts.

There's definitely a significant, but minority, subset of us who are intolerant to supplementing vitamin D (either D3 or D2) and who also have associated 1,25-dihydroxyvitamin D3 (i.e., calcitriol) levels that are too high relative to the more commonly measured 25-hydroxyvitamin D3 levels.

The issue seems pathologic and has, in most cases, nothing to do with a person's intake of any other minerals or vitamins like calcium, magnesium, phosphorus or vitamins A or K, etc. (the usual recommendations from sources like the "Vitamin D Council" are also completely unhelpful).

Assuming we don't all have some occult form of sarcoidosis, which might be responsive to, e.g., prednisone, I really think it could be useful for researchers to look into this because it might lead back to a possible underlying mechanism for some cases of ME/CFS.

I've actually been thinking about doing a poll on this for a while. I'm guessing the problem may affect around 10% of us, but it's hard to say. The poll would be a little tricky to word because it really needs to include wording to account for the presence of both or either of: an intolerance to vitamin D supplementation and/or calcitriol levels that are too high relative to the "regular" vitamin D levels.

I'll try to set one up soon.
 

MeSci

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I have no idea what my calcitriol levels are, so I can't do your poll. I don't know how easy it would be to get it tested in the UK. There is an external poll here, and the person who created it is a PR user - @tandrsc.

I'm wondering if the intolerance problem could be due to SNPs in the VDR (Vitamin D receptor) gene - I have three:
Bsm (58980 A>G), Fok1 (25920 T>C) and Taql (60058 T>C), all of which are said to "reduce calcium absorption due to reduced Vitamin D response."

The supplement I was taking is this one. It looks as though the company is connected to the Vitamin D Council, or maybe actually a part of it.
 
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MeSci

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@MeSci, the poll is worded such that if you don't know your calcitriol levels you can just assume they're normal. (You can change your answer at any point in the future if you're tested and find out differently.) Thanks!
Sorry - didn't notice the note! I still don't know what I should answer, as a small amount seems OK for me, whereas it seemed to be higher doses that caused problems.

I think I will wait to see the outcome of stopping the higher doses, as I only stopped recently, but it is looking good so far. It could be months before my Vit D levels normalise and I (hopefully) get rid of any excess calcium.
 
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Thank you all for your input. I'm surprised to see that so many of you experience this. My family doctor's response to my bringing it up was "that isn't possible".
There seems to be a link to calcium sensitivity too. Foods rich in calcium or calcium supplements make me feel dizzy, weak and thirsty as well.
 

Crux

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I haven't been able to tolerate vitamin D, even with low levels. Calcium also made me ill. ( I became hypercalcemic)

It may be a good idea to check calcium levels. High calcium is dangerous.

I've begun to think that my gut infection could be related to the intolerance.
Since treated the gut, I'm better able to tolerate the sun...though not ready to try a supplement.
 

MeSci

ME/CFS since 1995; activity level 6?
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Thank you all for your input. I'm surprised to see that so many of you experience this. My family doctor's response to my bringing it up was "that isn't possible".
There seems to be a link to calcium sensitivity too. Foods rich in calcium or calcium supplements make me feel dizzy, weak and thirsty as well.
I've had that 'not possible' reaction from a doctor to things that I know are connected, for example when I told one that when I was suffering IBS symptoms my legs became very tired and weak.

Perhaps he doesn't know about the vagus nerve!
 

Effi

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My family doctor's response to my bringing it up was "that isn't possible".
@karendo12 I've heard 'that isn't possible' SO MANY TIMES. Yet the reality proves that what I experience IS possible, because it's happening in my body. It's not because it hasn't been scientifically proven that it is impossible. I learned to just shrug off the 'it's impossible', and trust my body's signals. If I try something and it doesn't feel good, it means it's not for me.

Good luck in your search!
 

PeterPositive

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I haven't been able to tolerate vitamin D, even with low levels. Calcium also made me ill. ( I became hypercalcemic)

It may be a good idea to check calcium levels. High calcium is dangerous.

I've begun to think that my gut infection could be related to the intolerance.
Since treated the gut, I'm better able to tolerate the sun...though not ready to try a supplement.
I have a very similar problem.
Several digestive issues and my stomach seems unable to process more than 1-200 IU a day. Sometimes not even that :(
 

MeSci

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I'm grateful to @karendo12 for this thread. I had seen numerous threads in which everyone was reporting beneficial effects, or at worst no effect, from Vitamin D supplementation, and was puzzled that I seemed to be the only person getting adverse effects. Examine.com only found a small amount of evidence of adverse effects:
19.1. Kidneys
One Meta-Analysis that examined the link between Vitamin D and mortality (of which a decrease was seen mostly in elderly women) found that there was a higher risk for nephrolithiasis (Kidney Stones) when Vitamin D was paired with Calcium supplementation, with a RR of 1.17 and a CI of 1.02 to 1.34 from a sample size of 74,789.[296] The increased risk of kidney stones and the decreased mortality rates were both only seen with vitamin D3 supplementation.[296]

19.2. Squamous dysplasia
High serum vitamin D levels have been associated with esophageal Squamous dysplasia,[297] as one study taking a cross-sectional study of 720 participants in China noted that subjects with Dysplasia had circulating vitamin D levels of 36.5nmol/L while those without dysplasia had 31.5nmol/L and the highest quartile had a relative risk of 1.86 compared to the lowest quartile.[297]
It took a while to conclude that Vit D seemed the most likely culprit for my symptoms, and now I feel more confident that my conclusion is probably correct.

I had been puzzling over the cause for weeks, and coming up with several theories, but addressing the other potential causes didn't seem to be working, whereas I think I am getting somewhere by reducing Vit D.
 

MeSci

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I have a very similar problem.
Several digestive issues and my stomach seems unable to process more than 1-200 IU a day. Sometimes not even that :(
The study I linked to earlier discusses links between VDR variants and hypercalcaemia resulting from excessive calcium absorption from the gut when Vit D is taken.
Direct evidence for an interaction between the BsmI VDR polymorphism and Ca intake first came from an analysis of BMD changes in patients receiving Ca and vitamin D supplements, showing higher lumbar spine BMD losses in BB than in Bb or bb genotypes (4). Similar to this finding, one study has suggested faster BMD loss in the BB genotype of the VDR in hemodialysis patients (6). In keeping with this hypothesis, an interesting study on postmenopausal women has shown a decreased fractional Ca absorption with the BB genotype compared to the bb genotype (5). Other studies have also confirmed the association between VDR genotype and intestinal Ca absorption (3). Thus, subjects with non-BB alleles seem to have an increased efficiency of intestinal Ca absorption.
 

Crux

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I have a very similar problem.
Several digestive issues and my stomach seems unable to process more than 1-200 IU a day. Sometimes not even that :(
This has been troubling for 7yrs. now since the doc first checked. I've read other forums where people have expressed side effects and been dismissed.

The old adage, 'more research is needed', could be implemented here.

I seem to remember that you,@PeterPositive , have been working on some gut issues?
 

PeterPositive

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The study I linked to earlier discusses links between VDR variants and hypercalcaemia resulting from excessive calcium absorption from the gut when Vit D is taken.
Thanks, it is an interesting article.
I have never thoroughly investigated the problem. Last time I checked my calcium levels they were ok (9.5 mg/dL)

This has been troubling for 7yrs. now since the doc first checked. I've read other forums where people have expressed side effects and been dismissed.

The old adage, 'more research is needed', could be implemented here.

I seem to remember that you,@PeterPositive , have been working on some gut issues?
I still am :)
The Vit D kills my digestion pretty quickly. 2-3 doses are sufficient. Or a big one of 4-600 IU, at once. :rolleyes:
I've tried using a D3 Cream which I thought would bypass the whole issue and to my horror the problem came back. :wide-eyed:

The only hypothesis I have is that my liver is not happy with it, so it doesn't matter whether it is digested or absorbed via the skin.
And yet, I don't have the same problem if I take the sun for a moderate amount of time (~30 min). I have also been thinking of buying a UVB lamp for the cold months.

cheers