vitamin d question

[Ema]

Here is some very recent research on the optimal levels of vitamin D. It is published May 2012, so it can hardly be more "modern" than this. It is also the largest study to date, comprising almost 250,000 subjects. The study concluded that the lowest mortality risk was associated with 50-60 nmol/L. This fits very well with what the IOM is recommending.

http://jcem.endojournals.org/content/early/2012/05/09/jc.2012-1176.abstract

The problem I have with this article is that we are not discussing "all-cause mortality" but rather optimal immune function. I don't think that one can extrapolate one from the other which is a problem with many research studies - too limited scope and focus - in my opinion.

There is a lot of controversy on this topic as usual. All of the doctors I have seen in the past 3 years are now recommending levels of 80-100 ng/mL for their patients with immune dysfunction.

For me to get my levels up over 50 ng/mL requires 5000-10000 IU/day. So I think everyone must determine their own personal optimal level along with their doctor and then test after supplementation to determine what it takes to get it there.

 

[adreno]

The problem I have with this article is that we are not discussing "all-cause mortality" but rather optimal immune function. I don't think that one can extrapolate one from the other which is a problem with many research studies - too limited scope and focus - in my opinion.

It is hard not to draw associations between mortality and immune function. After all, optimal immune function should ensure the longest possible lifespan. If not, what is the purpose?

But there are other studies showing detrimental effects of high vitamin D levels. For instance, one study (from 2012) found increased inflammation when vitamin D levels exceed 21 ng/ml:

In a study of more than 15,000 adults ages 18 to 85, researchers at Johns Hopkins University found that after blood levels exceeded 21 nanograms per milliliter — the lower end of what is usually considered normal — ​

any additional vitamin D led to an increase in CRP.​

http://www.nytimes.com/2012/01/17/health/research/risks-when-too-much-vitamin-d-is-too-much.html​

 

[xrayspex]

is vitamin d similar to a hormone?

 

[Ema]

It is hard not to draw associations between mortality and immune function. After all, optimal immune function should ensure the longest possible lifespan. If not, what is the purpose?

If you get hit by a car (all cause mortality), it doesn't really matter about your immune system. That's exactly what I mean about one not necessarily correlating to the other in these type of narrow studies. Thanks for helping to make that clearer.

But there are other studies showing detrimental effects of high vitamin D levels. For instance, one study (from 2012) found increased inflammation when vitamin D levels exceed 21 ng/ml:

http://www.nytimes.com/2012/01/17/health/research/risks-when-too-much-vitamin-d-is-too-much.html​

Again, this study only deals with "asymptomatic" adults...not our population at all. Who knows if these results correspond to our experiences or not? This study doesn't tell us.

It may or may not so my opinion stands - supplementation is an individual decision to make with one's doctor because no one really knows for sure what the optimal level is and if it is the same for everyone.

 

[Ema]

is vitamin d similar to a hormone?

Vitamin D is a steroid hormone.

http://drgominak.com/vitamin-d

 

[xrayspex]

Interesting back and forth about the research on it, I really wish we were 100 years in the future in terms of health understanding....there is a great article in the current Atlantic mag about Larry Smarr, a studied man who explored how to optimize his own health even though its not his area of expertise, he is quite briliant, but he came up against brick walls with trying to get MD support, he learned a lot from colonscopy info on self and predicted AI in himself but MDs just want to do emergency type work and look at people like him as hypochondriac, but he argues its the future...my summary off, read it last week but check it out.....I agree with the premise that healthcare could now be radically revolutionized based on tools they already have but they likely stick to the old method of waiting til something terrible makes it self known instead of doing gut tests prempitvely to cut back on testing costs however in long run it costs everyone more $ cus people are sicker by time they figure it out.
I want to give my doc the article as the points are made so articulately and what is different for us with ME is that we arent trying to get tests preventively, we have already been hosed, but of course because we can't be measured by their tools and put into a neat respected diagnostic box we suffer

anyway, regarding the hormonal aspect of D, I wonder if that is why i have trouble with it since minute amounts of organicish bioidentical estrogen or progesterone or testosterone or dhea etc tht i tried to baby step myself into numerous times always made me feel bad, ie headaches malaise bad mood MCSish etc I always reflect on Mikovitz statement that estrogen bad for XMRV....I know her paradigm may not be the official final one but maybe she was onto the rough draft of something that relates to some of us

do you think its worth it to try to coax my body into tolerating minute doses slowly of D and see if can build from that overtime? the issue of large amounts is moot with me whether its good per research or not given my sensitivity.
it has taken me like 4 months to feel sort of ok with .10 ml of gabapentin, its helping but was really rough to get here with weird side fx and still are some but it helps more than hurts so i persist

hey I am not political on this day one way or other but its an excuse to post a band i love, have a good one!

 

[Ema]

That is a great article! I think it should be a new thread...

http://www.theatlantic.com/magazine/archive/2012/07/the-measured-man/9018/

"Larry was beginning to have serious doubts about the way medicine is practiced in this country. “Here’s the way I look at it; the average American has something like two 20-minute visits a year with a doctor,” he explains. “So you have 40 minutes a year that that doctor is going to help you make good decisions. You have 500,000 minutes a year on your own, and every one of those, you are making decisions. So we’re already in a situation where you are in charge of your ship—your body—and you are making a lot of pretty horrible decisions, or else two-thirds of the United States’ citizens wouldn’t be overweight or obese. You wouldn’t have the CDC saying that 42 percent of Americans may be obese by 2030, and a third of all Americans may develop diabetes by 2050. That’s the result of a lot of bad decisions that people are individually making on their own.”

 

[adreno]

If you get hit by a car (all cause mortality), it doesn't really matter about your immune system. That's exactly what I mean about one not necessarily correlating to the other in these type of narrow studies. Thanks for helping to make that clearer.

So your argument is that the lower mortality rate associated with the 50-60 ng/ml had nothing to do with vitamin D, but were simply because they were less hit by cars (or other accidents) than the people in the low and high ranges? That would seem to be a statistical oddity, if that were the case.

Again, this study only deals with "asymptomatic" adults...not our population at all. Who knows if these results correspond to our experiences or not? This study doesn't tell us.

There are no clinical studies of vitamin D in CFS cohorts (that I'm aware of), so treating us with vitamin D is experimental. The best we can do is look at studies done with vitamin D in other diseases, and see if there are beneficial or detrimental effects. And this is exactly what the IOM and other agencies have done, before giving their recommendations. A single study will not give us the whole picture, but extensive meta-analysis can help to make the picture more clear.

The upshot of my argument is that when people start to recommend doses that are much higher than the official recommendations giving, the burden of evidence should be on them to show that this is beneficial and safe. If we can at least agree that the matter is still controversial, it would make sense to stay on the conservative side, before making blanket recommendations to everyone about supplementing high dose vitamin D (or anything else for that matter).

It may or may not so my opinion stands - supplementation is an individual decision to make with one's doctor because no one really knows for sure what the optimal level is and if it is the same for everyone.

Well, if no one knows anything, then your doctor's treatment is simply arbitrary. Instead of following arbitrary suggestions, I would look to the recommendations of government agencies, who have probably done more extensive meta-analysis of this issue than any single doctor has.

 

[Ema]

There are no clinical studies of vitamin D in CFS cohorts (that I'm aware of)

Exactly! So posting studies from other populations is often pointless because they could just as easily have nothing to do with issues pertaining to us.

It's one thing to read narrowly focused studies and think about how that could further influence research in directions more applicable to ME/CFS and neuro/endocrine/immune illnesses in general and totally another to try to draw conclusions as to what we should or shouldn't do from them. That information is simply not presently available and many people choose to become their own guinea pigs instead. I can't fault them for that choice. It's one I've certainly made myself from time to time rather than trying to infer possibilities from narrow studies or waiting for the "perfect" study to be produced.

If we can at least agree that the matter is still controversial, it would make sense to stay on the conservative side, before making blanket recommendations to everyone about supplementing high dose vitamin D (or anything else for that matter).

I do agree that it is controversial. I wrote that in my first post.

Perhaps it makes sense for you to stay on the conservative side but that is a personal choice that may not be right for everyone. I've read enough from other sources that I trust to make a different decision for myself.

Well, if no one knows anything, then your doctor's treatment is simply arbitrary. Instead of following arbitrary suggestions, I would look to the recommendations of government agencies, who have probably done more extensive meta-analysis of this issue than any single doctor has.

I'm not talking about a single doctor and you apparently have much more faith in government agencies than I do for unbiased reports.

 

[adreno]

Perhaps it makes sense for you to stay on the conservative side but that is a personal choice that may not be right for everyone. I've read enough from other sources that I trust to make a different decision for myself.

It's good that you can make your own decisions; I try to do the same. That is also why I do not make recommendations about what people should do. But when I see blanket recommendations based on incomplete information, I do try to complete that information, so that people have a better chance of making the right decision for themselves.

I'm not talking about a single doctor and you apparently have much more faith in government agencies than I do for unbiased reports.

Perhaps, but I do not see why they should be biased against higher vitamin D levels? They already recommend supplementation. But I will gladly admit to having more faith in research than doctor's individual opinions.

 

[Ocean]

I have not had good luck with feeling that I feel ok taking vitamin d so I quit a couple years ago.
But the more I read the more I think I should try it again. I have bad luck with most supps and meds.
Can anyone who is MCS recommend a great brand and method of taking D? start out low, pulse, liquid, brands etc?

I just wanted to say that I have had a lot of trouble with D but it helps me too. I'm finally figuring out that my troubles with it are likely due to my getting low on the D cofactors and that causes symptoms. So keep an eye out for that. I have to take a lot of magnesium and have added some zinc and am still experimenting. I also take A (or not A but something your body turns to A, can't remember what it is now) and K2.

I take very low D only 400 mg every other day at most, because of the side effects I get. But the D helps a lot and I hope eventually to get all the cofactor stuff sorted out. I must be very low on zinc and mag. because I feel deficiency symptoms immediately when I start D and I can't seem to get enough mag. in me to stave off the symptoms if I take more D than I currently am. Even with the little I take I have trouble. As to your original quesiton, I like to take a dry vitamin D, mine is by Twinlab.

 

[jepps]

This is a study about vitamine D supplementation and its effects on the microbiome:

http://link.springer.com/article/10.1007/s00394-015-0966-2

Vitamin D3 supplementation changed the gut microbiome in the upper GI tract (gastric corpus, antrum, and duodenum). We found a decreased relative abundance of Gammaproteobacteria including Pseudomonas spp. and Escherichia/Shigella spp. and increased bacterial richness. No major changes occurred in the terminal ileum, appendiceal orifice, ascending colon, and sigmoid colon or in stools, but the CD8+ T cell fraction was significantly increased in the terminal ileum.

Vitamin D3 modulates the gut microbiome of the upper GI tract which might explain its positive influence on gastrointestinal diseases, such as inflammatory bowel disease or bacterial infections. The local effects of vitamin D demonstrate pronounced regional differences in the response of the GI microbiome to external factors, which should be considered in future studies investigating the human microbiome.