Vitamin D sensitivity

[MeSci]

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)

Blood calcium measurement seems very complicated, as explained here.

 

[karendo12]

@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!

Thanks, Effi!

 

[Lacey]

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.

I find I'm sensitive to it as well, glad to know others have noticed this as well, because I wasn't sure if it was the Vit D supplements, all I knew was it made me feel ill after taking it.

 

[aaron_c]

I am also experiencing fatigue from vitamin D.

This blog is interesting. The author had a bad reaction from vitamin D, causing a "splitting headaches and ... white-hot-iron-vise-crushing-my-lungs sensation." These were ameliorated by thiamine of the TTFD variety. Strangely, although she does seem to have fatigue problems, she says that vitamin d improves those at high doses...although she may have been taking enough thiamine to cause her insomnia at that point, so possibly the story would be different without the thiamine.

I'll give thiamine a try in the next few days, see if anything improves.

[EDIT: For myself at least, I believe I have found the solution. See my later posts on Vitamin A]

 

[SOC]

This is really interesting. I'd love to see if there are Vit D good/bad subsets identifiable by other symptoms and/or testing.

I'm one who does very well with Vit D supplementation. I take a large dose and feel best when my Vit D level is high or high/normal, which is very difficult for me to achieve.

I have no gut symptoms. I take a sublingual liquid D3 rather than a pill, if that makes a difference.

 

[nandixon]

This is really interesting. I'd love to see if there are Vit D good/bad subsets identifiable by other symptoms and/or testing.

I agree that this is very important and I think has been overlooked for far too long in ME/CFS research. Understanding why a significant subset of ME/CFS people are intolerant to vitamin D supplementation may help give some critical insight into the disease, for everyone. I recently started the vitamin D poll in my signature to try to get some idea how significant the problem may be.

My best guess as to what might be happening is based on the consistent finding in ME/CFS research that a significant number of patients have increased regulatory T cells (Tregs) and correspondingly low natural killer (NK) cell function. (See, e.g.: Role of adaptive and innate immune cells in chronic fatigue syndrome/myalgic encephalomyelitis)

Vitamin D, as calcitriol, significantly induces/helps activate Tregs. This can happen, for example, through increased expression of FOXP3 - a defining Treg attribute. (See also the diagram below for additional immune effects of vitamin D.)

This should mean, I think, that there should be a greater tendency for individuals with high Tregs (and possibly low NK cell function) to be intolerant to vitamin D, while individuals with normal Tregs (and possibly normal NK cell function) should be more likely to tolerate vitamin D.

(Nothing is ever black or white in this disease, of course, and vitamin D affects hundreds of different genes and enzymes.)

(Image from: Vitamin effects on the immune system: vitamins A and D take centre stage)

 

[SOC]

This should mean, I think, that there should be a greater tendency for individuals with high Tregs (and possibly low NK cell function) to be intolerant to vitamin D, while individuals with normal Tregs (and possibly normal NK cell function) should be more likely to tolerate vitamin D.

(Nothing is ever black or white in this disease, of course, and vitamin D effects hundreds of different genes and enzymes.)

Interesting idea! I'd love to see some follow-up.

My experience would fit with your thinking. I have normal-high NK cell function and I not only tolerate, but need, a high dose of D3.

On the other hand, my daughter has low NK cell function and also needs a high dose of D3, and tolerates it well.

As you say, nothing is ever black or white with this disease.

 

[nandixon]

Interesting idea! I'd love to see some follow-up.

My experience would fit with your thinking. I have normal-high NK cell function and I not only tolerate, but need, a high dose of D3.

On the other hand, my daughter has low NK cell function and also needs a high dose of D3, and tolerates it well.

As you say, nothing is ever black or white with this disease.

Thanks! To be honest, I'm not clear on how strong the apparent (inverse) correlation between number of Tregs and NK cell function is supposed to be. So perhaps both you and your daughter might both have normal Treg levels, while having normal-high and low NK cell function, respectively.

I have low NK cell function and don't tolerate vitamin D, but I don't know my Treg level. (I do have low CD4+ T cells, which I think may also tend to indicate high Tregs, but I'm again not sure.)

I think we really need to have the number/percentage of Tregs, i.e., the number of CD4+FOXP3+ T cells, specifically determined for all of us as a matter of routine.

I wonder how difficult it is to obtain labwork with FOXP3+ T cell measurements outside of research studies? I don't think I've seen anyone on the forum post any T cell results with the FOXP3 marker, but then I've only recently become interested in it.

 

[Gondwanaland]

@nandixon how about deficiency in other fat soluble vitamins? If one is deficient in vitamin K, obviously supplementation with vitamin D will worsen the picture.

 

[SOC]

Thanks! To be honest, I'm not clear on how strong the apparent (inverse) correlation between number of Tregs and NK cell function is supposed to be. So perhaps both you and your daughter might both have normal Treg levels, while having normal-high and low NK cell function, respectively.

I have low NK cell function and don't tolerate vitamin D, but I don't know my Treg level. (I do have low CD4+ T cells, which I think may also tend to indicate high Tregs, but I'm again not sure.)

I think we really need to have the number/percentage of Tregs, i.e., the number of CD4+FOXP3+ T cells, specifically determined for all of us as a matter of routine.

I wonder how difficult it is to obtain labwork with FOXP3+ T cell measurements outside of research studies? I don't think I've seen anyone on the forum post any T cell results with the FOXP3 marker, but then I've only recently become interested in it.

I have pages of immune data from a research institute, but I don't see the expressions "Tregs" or "FOXP3+". I'm ignorant about immune stuff, are there other names or symbols that might be used for those things?

 

[aaron_c]

@Gondwanaland: I have been wondering this too.

Here is a page from the Weston A Price foundation written by Christopher Masterjohn. In it he quotes a woman who wrote to him. She said:

As I mentioned before, there seems to be a subset of us for whom even low doses (1,000 IU/day) of Vit D cause kidney stones, chest pain, fatigue, and aches and pains, even though our 25 OH D levels were ‘low’ (23). We get these symptoms as soon as a week after using the D. . . . I saved myself a trip to the ER with the above symptoms by remembering previous articles of yours about balancing the fat-soluble vitamins, and took about 100,000 IU of Vit A from fish oil and 5 mg of K2. Within 1/2 hour ALL the symptoms disappeared. This happened more than once so I know it is not coincidence. You are definitely on to something here.
​

Kidney stones seem probably related to not enough vitamin K. I don't know enough to divide up the other symptoms she lists.

I take about 22 mg of vitamin k (MK-4 variety) every day, but I wonder if I am low in vitamin A. I will try to take some vitamin a before adding more vitamin D and see how it goes.

PS I only tried increasing my benfotiamine a little before I ran into the article by Christopher Masterjohn, so I can't say much about its effectiveness. Because I like the Weston A Price foundation, I will try vitamin A before going further with the benfotiamine.

 

[Gondwanaland]

@aaron_c you should add that people should not try this at home
Taking vit K can cause severe side effects as well, esp. in such high doses. I thought I was gonna burn in pain from taking as much as 250mcg on its own

Do you balance it with vit E as well? For me it is a must.

 

[aaron_c]

@Gondwanaland

Thanks again Izzy! Yes, there are definite risks to taking as much vitamin K as I am, and I am not necessarily suggesting that anyone try it. I only mentioned it to suggest that the fatigue I experience from vitamin D probably isn't coming from vitamin K deficiency.

That having been said, if one is going to take vitamin D long term, I do think keeping a close eye on one's vitamin K status would be a prudent precaution, particularly for those of us with a chronic inflammatory condition or intestinal dysbiosis that theoretically could contribute to the depletion of vitamin K. Taking Vitamin D while deficient in vitamin K seems risky to me because vitamin D will increase our intake of calcium, and without enough vitamin K, our bodies don't know what to do with that calcium.

You know, I hadn't thought to balance it with vitamin E. I will look into it!

 

[aaron_c]

PS: @Gondwanaland, I assume you are balancing the vitamin K with vitamin E? Or is it vitamin D with vitamin E? Yes, they are all fat-soluable, so perhaps they all need to be balanced with one another? But it seems like you were referring to a specific relationship. Could you say more about how much you take of each?

Thanks!

 

[Gondwanaland]

PS: @Gondwanaland, I assume you are balancing the vitamin K with vitamin E? Or is it vitamin D with vitamin E? Yes, they are all fat-soluable, so perhaps they all need to be balanced with one another? But it seems like you were referring to a specific relationship. Could you say more about how much you take of each?

Thanks!

Right now I can't tolerate any vit K, it causes too much pain. I am in a vit K flare right now triggered by Clostridium butyricum. I must figure out a way to supress the pain in order to tolerate it. And I am convinced the K2 deficiency is at the root of at least 60% of my health issues.

I have unknowingly worsened my vit K by taking vit E continuously fro 1.5 years after I stopped the warfarin. SO I don't know what a right proportion would be between E and K. You know that the principle is that E acts like a blood thinner, and K acts as a blood thickener (mainly K1, but I think K2 as well due to the calcium transportation).

 

[nandixon]

I have pages of immune data from a research institute, but I don't see the expressions "Tregs" or "FOXP3+". I'm ignorant about immune stuff, are there other names or symbols that might be used for those things?

If it'd been tested I would think it would say either "Tregs," "regulatory T cells," or include the FOXP3 marker somehow, for example, "CD4+CD25+FOXP3+." (Regulatory T cells used to be called "suppressor" or "suppressive" T cells instead of regulatory T cells, so if the data was old enough it might use that term, I guess.)

 

[aaron_c]

@Gondwanaland: Just to flesh the picture out, the Linus Pauling Foundation web site says that [EDIT: vitamin a can inhibit vitamin k absorption]. I can't see how this would cause your particular problems...but it does give me pause in regards to my high dose of vitamin K.

 

[Gondwanaland]

@Gondwanaland: Just to flesh the picture out, the Linus Pauling Foundation web site says that vitamins a and k appear to compete with one another for absorption. I can't see how this would cause your particular problems...but it does give me pause in regards to my high dose of vitamin K.

Interesting, last year I tried to supplement with vit A, but felt worse on it (no wonder), but it helped me to sleep better. Hmmm I will slow down with high beta-carotene foods!!!! Thanks for the warning, Aaron

Edit -- Aaron, thank you so much for the LPI link, I had never looked up vit K other than at the WAP site. At the LPI site I found the warfarin mechanism

 

[aaron_c]

Hmmm I will slow down with high beta-carotene foods!!!! Thanks for the warning, Aaron

Hmm...I have my doubts about the necessity of avoiding beta carotene: According to this study, only about 3% of beta carotine is converted to vitamin A.

In addition, I found this study from 1990:

Plasma vitamin K concentrations and prothrombin coagulation activity were determined in 26 normal adults who had received daily beta-carotene supplementation (0, 15, 30, or 60 mg) for six months. Neither plasma vitamin K nor coagulation activity were significantly decreased at any supplementation level. Thus, chronic beta-carotene supplementation, even at high daily doses, is not expected to result in clinical vitamin K deficiency. The data suggest separate mechanisms for intestinal absorption of beta-carotene and vitamin K.
​

So I am not too worried about getting beta-carotene from food.

​

 

[MeSci]

I seemed to get an exacerbation of gall bladder problems from D3, as well as apparent kidney problems. I have had intermittent pains in the upper-right abdomen for years, and a doc thought it was my gallbladder, but I thought at the time that it was my liver (lactate overload?). Anyway, the pain is usually mild, but just occasionally I get a brief sharp pain. When I was on the D3, or shortly after stopping, I had one of these, and the next day my stool contained some dark specks, which I suspect were small gallstones/biliary sludge. I had seen these strange dark specks a few days earlier too. The D3 had caused a general loosening of the bowels, and to my great relief things are getting back to normal in that respect.