1. Guest, the 'News in Brief' for the week beginning 7th June 2021 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice
  3. Contribute to feedback on the CDC Evidence Review, for more details click here
    Dismiss Notice

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

Discussion in 'Vitamin B12, D and other deficiencies' started by Aslaug, May 6, 2021.

Tags:
  1. Aslaug

    Aslaug Moderator Staff Member

    Messages:
    1,049
    Likes Received:
    5,671
    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.
     
  2. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    4,650
    Likes Received:
    24,329
    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.
     
    Louie41, alktipping, MeSci and 5 others like this.
  3. Aslaug

    Aslaug Moderator Staff Member

    Messages:
    1,049
    Likes Received:
    5,671
    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".
     
    Louie41, Hutan, alktipping and 5 others like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    8,113
    Likes Received:
    47,987
    Location:
    UK West Midlands
    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.
     
    Louie41, alktipping, MeSci and 3 others like this.
  5. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    4,650
    Likes Received:
    24,329
    It seems the one supplement most GP's recommend in general for all their patients is vitamin D.
     
  6. Aslaug

    Aslaug Moderator Staff Member

    Messages:
    1,049
    Likes Received:
    5,671
    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 :whistle:
     
    Louie41, Hutan, alktipping and 5 others like this.
  7. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    4,650
    Likes Received:
    24,329
    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.
     
  8. Aslaug

    Aslaug Moderator Staff Member

    Messages:
    1,049
    Likes Received:
    5,671
    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.
     
    Louie41, alktipping, MeSci and 3 others like this.
  9. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    1,898
    Likes Received:
    14,818
    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! :laugh:

    I have the red hair for the job, anyway...
     
    Aslaug, Louie41, alktipping and 5 others like this.
  10. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    3,669
    Likes Received:
    37,454
    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.
     
    Last edited: May 6, 2021
    TigerLilea, MeSci, inox and 7 others like this.
  11. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    4,513
    Likes Received:
    21,542
    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.
     
    MeSci, Aslaug, Peter Trewhitt and 2 others like this.
  12. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    4,939
    Likes Received:
    37,516
    Location:
    UK
    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.
     
    MeSci, Aslaug, Louie41 and 5 others like this.
  13. Joan Crawford

    Joan Crawford Senior Member (Voting Rights)

    Messages:
    265
    Likes Received:
    3,104
    Location:
    Chester, UK
    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
     
    Mij, Lisa108, MeSci and 7 others like this.
  14. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    3,876
    Likes Received:
    21,743
    Location:
    UK
    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

    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.
     
  15. Aslaug

    Aslaug Moderator Staff Member

    Messages:
    1,049
    Likes Received:
    5,671
    I wish more doctors knew more about vitamins.

    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.
     
    Mij, MeSci, Wonko and 1 other person like this.
  16. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    4,513
    Likes Received:
    21,542
    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/
     
    Mij, MeSci and Peter Trewhitt like this.
  17. Hutan

    Hutan Moderator Staff Member

    Messages:
    13,978
    Likes Received:
    58,468
    Location:
    New Zealand
    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:

     
    Wonko, Peter Trewhitt and Amw66 like this.
  18. Aslaug

    Aslaug Moderator Staff Member

    Messages:
    1,049
    Likes Received:
    5,671
    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.
     
    Last edited: May 7, 2021
    Mij, Hutan and Peter Trewhitt like this.
  19. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    3,876
    Likes Received:
    21,743
    Location:
    UK
    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/

    [​IMG]
     
    Mij, Amw66, MeSci and 1 other person like this.
  20. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    4,650
    Likes Received:
    24,329
    Interesting. I started getting reactivations of viruses in 2001 soon after taking vitamin D regularly. I have stopped taking it on and off for a few weeks over the years and seem to feel 'better', but dismissed the correlation.

    Now that summer is here I'll be absorbing natural vitamin D instead of supplements. I wonder if we metabolize sun and supplements differently?
     
    MeSci, Amw66 and Peter Trewhitt like this.

Share This Page