Vitamin D and ME

[arewenearlythereyet]

UK Study showing a link between low vitamin D status and IBS symptom severity. Written by Dr Bernard Corfe Oncology lecturer at University of Sheffield.

This piqued my interest. Its calling for more RCT information but suggests that vitamin D status needs to be tested alongside all patients with IBS since there appears to be a connection. He also suggests that supplementation may help reduce symptom severity.

https://www.nutraingredients.com/Ar...ight&utm_medium=OnSite&utm_campaign=copyright

Abstract for the paper here:

Vitamin D status in irritable bowel syndrome and the impact of supplementation on symptoms: what do we know and what do we need to know?

https://www.nature.com/articles/s41430-017-0064-z

 

[Midnattsol]

Vitamin D and ME, should pwME have high vitamin D?

I've been told ME/CFS patients should have vitamin D levels >100 nmol/L. Does anyone know where this could originate from? The highest vitamin D levels recommended in any guideline I am familiar with is >75 nmol/L, and I am not aware of research that says there are any reason to go beyond this for anyone.

I found one small study on vitamin D supplementation and vascular health in ME/CFS that found no benefit of vitamin D, and one prevalence study on vitamin D deficiency in patients in North-west England.

 

[Mij]

The guidelines changed in Canada several years ago.

In general, results of less than 25 nmol/L point to a vitamin D deficiency, while the range between 25 to 75 nmol/L signals a potential deficiency. A good mid-point is 76-250 nmol/L - below that number signals deficiency and above suggests elevation.

 

[Midnattsol]

The guidelines changed in Canada several years ago.

In general, results of less than 25 nmol/L point to a vitamin D deficiency, while the range between 25 to 75 nmol/L signals a potential deficiency. A good mid-point is 76-250 nmol/L - below that number signals deficiency and above suggests elevation.

Yes, below 25 nmol/L we get skeletal deformities; rickets in children and osteomalacia in adults. So most countries have a lower reference range between 30-50 nmol/L to cover any potential extraskeletal effects of vitamin D. Those who most strongly believe in the extraskeletal effects have reference values >75 nmol/L. In Norway the lower reference is 50 nmol/L, I wonder if it'll increase when guidelines are revised soon.

That pwME should have >100 nmol/L have shown up a few times in ME/CFS groups I'm in and I can't get a reference for it besides "It's shared in many ME/CFS groups".

 

[NelliePledge]

I was told this as well by a Dr who is knowledgeable about ME. Vitamin D was literally the only thing my GP followed up after I’d had my consultation with the ME Dr. I’m pretty certain my result was around at 70/75 at that time which the GP said was perfectly ok despite being towards the lower end of the reference range and what the ME dr had said. A couple of years before I had scored about 50. GP Didn’t even suggest supplements.

Since then th NHS has actually said a couple of years ago that people here should supplement vit D in the winter. And supplementing Vit D was quite actively pushed last winter in the context of Covid. All my elderly rellies are now on it.

I was already supplementing Vit D when I scored 70ish so apart from trying to get outside if possible didn’t really know what else I could do about it.

 

[Mij]

It seems the one supplement most GP's recommend in general for all their patients is vitamin D.

 

[Midnattsol]

It seems the one supplement most GP's recommend in general for all their patients is vitamin D.

Coming from the northern part of Norway, where many are insufficient, that is not my experience. My GP's have often been very mistaken about how easy it is to get adequate vitamin D. I do somewhat enjoy being told that eggs and butter is a good source of the vitamin though, and that the sun in march is able to provide any useful contribution to vitamin D stores (never mind the amount of clothing people wear at that point). Makes me feel that dietitans are indeed needed

 

[Mij]

Maybe it's only Canada then since we have the highest rate of MS in the world?

I took cod liver oil many years ago and it barely raised my D levels, and may have put me over the ref range for vitamin A.

 

[Midnattsol]

Maybe it's only Canada then since we have the highest rate of MS in the world?

I took cod liver oil many years ago and it barely raised my D levels, and may have put me over the ref range for vitamin A.

I know many with MS that have been recommended to have vitamin D levels >75 nmol, and they also recommend that at the university I'm at. I wouldn't really mind if pwME were told the same, but I don't see where the >100 nmol/L value comes from.

 

[Kitty]

The only intervention I've ever had is a nurse informing me that redheads have trouble absorbing enough vitamin D, but their bodies can actually make it. I've no idea whether that's medical fact, or something she read in the People's Friend whilst waiting for her appointment at the dentist's!

I have the red hair for the job, anyway...

 

[Hoopoe]

A family member who is a doctor recently told me that he had a patient with pain everywhere and depression, on antidepressants. Her vitamin D level was 6 and this was the cause of her symptoms.

 

[Amw66]

When my daughter failed to get better after testing positive for glandular fever and fatigue was becoming an issue I requested gp test vit D status. He was reluctant to do so, but agreed .

Her level was 21 which shook him a bit. He himself would not prescribe without seeking advice from a consultant.

The high dose required was offered as a liquid or as pills. Both caused horrendous side effects which have been put down to the colouring in both liquid and capsule.

she did previously have a hive type reaction to amoxycillin when taken as a capsule for a throat infection but was OK previously with liquid. The only difference seemed to be colouring in the capsule ( which was the same compound as the vit D one) .
It could if course be something totally different.

I don't think it made as huge a difference .

We supplement as she is housebound and has bouts of sleep reversal. Whether it us sufficient I don't know. We would have to request a test as it's not part if a standard work up.

 

[Wonko]

Last time I had my vit D checked it was 14.

Trying to raise it was really surprisingly painful.

A couple of months ago my GP (who didn't know I'd done anything about it) made an unannounced home visit and was shown this test result, along with one other (a quite high ferritin result) and she didn't bat an eyelid.

 

[Joan Crawford]

A family member who is a doctor recently told me that he had a patient with pain everywhere and depression, on antidepressants. Her vitamin D level was 6 and this was the cause of her symptoms.

This occurs occasionally with patients referred into the NHS pain service I work in. Even had a colleague who thought she was developing fibro and it turned out to be low vit D. I defo follow up in GP letters if I see they have tested low

 

[Arnie Pye]

I've been told ME/CFS patients should have vitamin D levels >100 nmol/L. Does anyone know where this could originate from? The highest vitamin D levels recommended in any guideline I am familiar with is >75 nmol/L, and I am not aware of research that says there are any reason to go beyond this for anyone.

I found one small study on vitamin D supplementation and vascular health in ME/CFS that found no benefit of vitamin D, and one prevalence study on vitamin D deficiency in patients in North-west England.

This link suggests that we should all have a vitamin D level of 100 - 150 nmol/L (40 - 60 ng/mL) :

https://www.grassrootshealth.net/project/daction/

The research links for that website are here :

https://www.grassrootshealth.net/research/

Is the above site reputable? I don't know.

Another link : https://www.health.harvard.edu/blog/vitamin-d-whats-right-level-2016121910893

But in 2011, the respected Endocrine Society issued a report urging a much, much higher minimum blood level of vitamin D. At that time, their experts concluded: “Based on all the evidence, at a minimum, we recommend vitamin D levels of 30 ng/mL, and because of the vagaries of some of the assays, to guarantee sufficiency, we recommend between 40 and 60 ng/mL for both children and adults.”

The only evidence of benefits from vitamin D supplementation that I have is anecdotal. It benefited my husband - he couldn't bend his knees, which made it very difficult for him to get on and off the train he took to and from work. Then he started supplementing vitamin D and hey presto! he could bend his knees again.

 

[Midnattsol]

A family member who is a doctor recently told me that he had a patient with pain everywhere and depression, on antidepressants. Her vitamin D level was 6 and this was the cause of her symptoms.

When my daughter failed to get better after testing positive for glandular fever and fatigue was becoming an issue I requested gp test vit D status. He was reluctant to do so, but agreed .

Her level was 21 which shook him a bit. He himself would not prescribe without seeking advice from a consultant.

The high dose required was offered as a liquid or as pills. Both caused horrendous side effects which have been put down to the colouring in both liquid and capsule.

she did previously have a hive type reaction to amoxycillin when taken as a capsule for a throat infection but was OK previously with liquid. The only difference seemed to be colouring in the capsule ( which was the same compound as the vit D one) .
It could if course be something totally different.

I don't think it made as huge a difference .

We supplement as she is housebound and has bouts of sleep reversal. Whether it us sufficient I don't know. We would have to request a test as it's not part if a standard work up.

Last time I had my vit D checked it was 14.

Trying to raise it was really surprisingly painful.

A couple of months ago my GP (who didn't know I'd done anything about it) made an unannounced home visit and was shown this test result, along with one other (a quite high ferritin result) and she didn't bat an eyelid.

I wish more doctors knew more about vitamins.

This link suggests that we should all have a vitamin D level of 100 - 150 nmol/L (40 - 60 ng/mL) :

https://www.grassrootshealth.net/project/daction/

The research links for that website are here :

https://www.grassrootshealth.net/research/

Is the above site reputable? I don't know.

Another link : https://www.health.harvard.edu/blog/vitamin-d-whats-right-level-2016121910893

Thanks!

By skimming the names of the references from grassroothealth I'm not so sure about the conclusions made, a comparison of a group with 20 ng/ml to a group with 40 ng/ml cannot say if a level of >30 ng/ml is enough. Will have to read them a bit more carefully

In the guidelines from the endocrine society which the Harvard site seems to quote, it says >75 nmol/L or >30 ng/L as the cutoff for insufficiency, while it is said at the very end that "For clinical care, it appears that all current methodologies are adequate if one targets a 25(OH)D value higher than current cut points; for example, a value of 40 ng/ml is without toxicity and virtually ensures that the individual's “true” value is greater than 30 ng/ml."
So it's an argument to be on the safe side due to different measuring methods (which of course also means that the data used to make these guidelines can have wrong "true" Vitamin D levels). This reminds me that I did have a patient as an intern with vitamin D >100 nmol/L (40 ng/ml), and he said it his GP said his numbers were great.

 

[Amw66]

Generally people associate vitD with rickets.
My gp did not know 5 years ago that it plays a key role in immune system.
With COVID I think all gps now know a bit more


There has been research done re vitD and EBV and MS .
From a bad memory EBV can switch particular vit D metabolic genes off and on and reactivate retroviruses .
( I was looking for why my daughters level was so low and EBV can modulate a lot of things )

To check I was not going completely mad ( no coffee yet ) I did a quick search

https://www.docwirenews.com/conditi...s-in-multiple-sclerosis-facts-and-hypotheses/

 

[Hutan]

I haven't checked out the study but people interested in insulin resistance and Type 2 diabetes might want to check out this recent NZ study:

A nutrition researcher has found that South Asian women with insulin resistance improved markedly after taking vitamin D supplements. Pamela Von Hurst, a nutrition lecturer at the Institute of Food, Nutrition and Human Health at Albany, conducted the study for her PhD thesis.

Ms Von Hurst says while diet and exercise play a major part in the onset of type-2 diabetes, her findings reinforce the importance of vitamin D from the sun and supplements to prevent type-2 diabetes, which has reached epidemic rates in New Zealand. She also found evidence of vitamin D increasing bone strength in older women.

Initial screening of 235 Auckland women from India, Pakistan and Sri Lanka aged 20 and older, revealed 47 per cent were insulin deficient and 84 per cent were vitamin D deficient. The 81 recruited for the study were split into two groups for a randomised controlled trial and given a vitamin D supplement or placebo. As well as an improvement in insulin resistance among those who took vitamin D for six months, Ms Von Hurst says post-menopausal women in the study also showed a reduced rate of bone breakdown.

 

[Midnattsol]

I haven't checked out the study but people interested in insulin resistance and Type 2 diabetes might want to check out this recent NZ study:

Are you sure it's recent? I find an article of hers from 2009 with 235 South Asian women from Auckland. Notably, to be included in the study these women had to be insulin resistant, vitamin D deficient (defined as <50 nmol/L) and not take vitamin D supplements of >25 mcg/day. After six months of supplementation median vitamin D had increased from 21 nmol/L to 75 nmol/L in the supplement group, and they had improved insulin markers compared to those who received placebo. Endpoint vitamin D levels >80 nmol/L had the highest effect on insulin resistance.

However, at the end of the study the insulin resistance is similar between the two group, the statistically significant finding was that the change between groups were different (Vit. D group: From 1.5 to 1.7, the placebogroup from 1.7 to 1.5). I'm not sure I would call that clinically relevant, but I'm not familiar with insulin and glucose measurements for this population (it can be different between ethnic groups) so there might be some cutoff values I am not familiar with. That the vitamin D groups at endpoint had the same values as the placebogroup had at baseline makes me think it is not that important (they were after all deemed insulin resistant to be allowed into the study).

I do find it interesting that they would include participants that supplemented with <25 mcg/daily, it is only recently it has been allowed in Norway to sell supplements with daily doses of >20 mcg. Norway has been very restrictive with vitamin D supplementation and worried about toxicity.

 

[Arnie Pye]

Generally people associate vitD with rickets.
My gp did not know 5 years ago that it plays a key role in immune system.
With COVID I think all gps now know a bit more

From the grassrootshealth website there is this chart, suggesting that incidence of quite a lot of ailments is reduced with optimal levels of vitamin D.

Source : https://www.grassrootshealth.net/document/disease-incidence-prevention-chart-in-ngml/