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ME Assoc. June survey - Vit. D testing

Discussion in 'General ME/CFS Discussion' started by AndyPR, Jun 1, 2016.

  1. AndyPR

    AndyPR Senior Member

    Available on their website's homepage at http://www.meassociation.org.uk/, to find it scroll down, it is towards the bottom of the page in the centre column.

    and accompanying article http://www.meassociation.org.uk/201...-in-this-months-mea-website-poll-1-june-2016/

     
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  2. charles shepherd

    charles shepherd Senior Member

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    Full background information relating to why we are doing a survey on vitamin D and ME/CFS:

    [​IMG]
    Why are we asking if you have been tested for vitamin D deficiency in this month’s MEA website poll? | 1 June 2016

    [​IMG]

    Vitamin D deficiency can occur in ME/CFS and people in the moderate or severe category are at increased risk – especially if they are housebound and do not get out in the sunshine and/or are on some form of restrictive diet.


    So checking for vitamin D deficiency should, where appropriate, form part of the clinical assessment for ME/CFS.

    Taking a vitamin D supplement, after taking advice from your doctor or pharmacist, is also sensible if you are at increased risk.

    Treating any significant degree of vitamin D deficiency – which should be under medical supervision – is also important.

    All aspects of vitamin D, and vitamin D deficiency, are covered in the MEA information leaflet on vitamin D:

    www.meassociation.org.uk/shop/management-leaflets/vitamin-d/

    SUMMARY OF KEY POINTS RELATING TO THE VITAMIN D (25-HYDROXYVITAMIN D) BLOOD TEST
    Looking for reference ranges?

    The National Osteoporosis society (NOS) guidelines (UK, 2013) and the Institute of Medicine (US) classify vitamin D results as follows:

    * 25-hydroxyvitamin D of less than 30 nmol/L is deficient
    * 25-hydroxyvitamin D of 30-50 nmol/L may be inadequate in some people
    * 25-hydroxyvitamin D of greater than 50 nmol/L is sufficient for al most the whole population.

    Low blood levels of 25-hydroxyvitamin D may mean that you are not getting enough exposure to sunlight or enough vitamin D in your food to meet your body’s demand or that there is a problem with its absorption from the intestines. Occasionally, drugs used to treat seizures, particularly phenytoin (epanutin), can interfere with the liver’s production of 25-hydroxyvitamin D.

    High levels of 25- hydroxyvitamin D usually reflect excess supplementation from vitamin pills or other nutritional supplements.

    More info on the vitamin D blood test:http://labtestsonline.org.uk/understanding/analytes/vitamin-d/tab/glance/

    SUMMARY OF RESEARCH INTO VITAMIN D AND ME/CFS FROM THE MEA PURPLE BOOK
    Consider vitamin D deficiency in adults with restrictive diets and/or lack of access to sunlight.

    A retrospective study of serum 25-OH (hydroxy) vitamin D le vels in 221 ME/CFS patients found moderate to severe suboptimal levels, with a mean level of 44.4nmol/l (Berkovitz et al 2009).

    Vitamin D deficiency often goes unrecognised and can cause bone or muscle pain and muscle weakness. It can co-exist with ME/CFS.

    Levels < 25nmol/ml may be associated with symptoms. NB: Low serum calcium and phosphate and an elevated alkaline phosphatase are consistent with osteomalacia.

    RECENT HEALTH ITEM ON VITAMIN D DEFICIENCY IN THE DAILY MAIL
    www.dailymail.co.uk/femail/article-3404027/Is-surprise-reason-t ired-vitamin-D-energy-lower-blood-pressure.html

    ABSTRACT OF THE PAPER FROM BERKOVITZ S ET AL (International Journal for Vitamin and Nutrition Research, 2009,79, 250 – 254)
    Serum 25-hydroxy vitamin D levels in chronic fatigue syndrome: a retrospective survey.

    INTRODUCTION
    Patients with chronic fatigue syndrome (CFS) may be at risk of osteoporosis due to their relative lack of physical activity and excessive time spent indoors, leading to reduced vitamin D synthesis. We hypothesized that serum 25-OH vitamin D levels are lower in CFS patients than in the general British population.

    SUBJECTS AND METHODS
    We performed a retrospective survey of serum 25-OH vitamin D levels in 221 CFS patients. We compared this to a group of patients attending the hospital for other chronic conditions and to a large British longitudinal survey of 45-year old women, using a variety of appropriate statistical approaches.

    RESULTS
    25-OH vitamin D levels are moderately to severely suboptimal in CFS patients, with a mean of 44.4 nmol/L (optimal levels >75 nmol/L). These levels are lower and the difference is statis tically significant (p<0.0004) than those of the general British population from a recent national survey, but similar to those in patients with other chronic conditions. CONCLUSIONS This data supports the recommendation made in recent NICE guidelines that all patients with moderate to severe CFS should be encouraged to obtain adequate sun exposure and eat foods high in vitamin D. Oral or intramuscular vitamin D supplementation should be considered for those whose levels remain suboptimal.

    Dr Charles Shepherd

    Hon Medical Adviser, ME Association
     
  3. charles shepherd

    charles shepherd Senior Member

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  4. duncan

    duncan Senior Member

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    I think this may be a case of attributing the sun's rise in the morning to the rooster's call.
     
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  5. green_monster

    green_monster

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    In my case the low Vit D had nothing to do with lack of sunlight or lack of physical activity.

    When I was first getting ill and only mildly affected, I worked a very physical, outdoor job in the middle of the desert. No shortage of physical exercise and sunlight, yet my vitamin level was very low from the beginning.
     
  6. charles shepherd

    charles shepherd Senior Member

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    green_monster and Snowdrop like this.
  7. charles shepherd

    charles shepherd Senior Member

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    Causes of Vitamin D Deficiency
    Vitamin D deficiency can occur for a number of reasons:

    You don't consume the recommended levels of the vitamin over time. This is likely if you follow a strict vegan diet because most of the natural sources are animal-based, including fish and fish oils, egg yolks, fortified milk, and beef liver.

    Your exposure to sunlight is limited. Because the body makes vitamin D when your skin is exposed to sunlight, you may be at risk of deficiency if you are homebound, live in northern latitudes, wear long robes or head coverings for religious reasons, or have an occupation that prevents sun exposure.

    You have dark skin. The pigment melanin reduces the skin's ability to make vitamin D in response to sunlight exposure. Some studies show that older adults with darker skin are at high risk of vitamin D deficiency.
     
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  8. *GG*

    *GG* Senior Member

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    Concord, NH
    You looking for feedback from Overseas? Is there a poll? Not seeing it.

    GG
     
  9. charles shepherd

    charles shepherd Senior Member

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  10. Cheshire

    Cheshire Senior Member

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    30% never tested? Wow that's a basic and routine test.
     
  11. *GG*

    *GG* Senior Member

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    My level was 50 ng/ml, 30-100 ng/ml.

    GG
     
  12. Maria1

    Maria1 Silence speaks volumes

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    UK
    I am in the UK, white with Scottish/ Italian heritage, tan easily. I have always liked to spend time in the sun and am not really home bound, having 2 children, although I struggle to be out and about with my energy levels.

    My vit D was routinely tested by an endocrinologist, after hypothyroidism was picked up, about 18 months to 2 years after my ME diagnosis was confirmed by a CFS NHS clinic.

    At the time of testing I had already been supplementing for a while, but was 'deficient' according to NHS guidance, enough to be prescribed high dose supplementation. I've now reached sufficient but still on prescription twice daily dose from GP.

    I don't think my level was necessarily low due to being homebound, I was also anaemic prior to becoming ill with ME and think my body was low in lots of nutrients. I am a long time vegetarian who didn't really watch my nutrition for many years.
     
    Last edited: Jun 1, 2016
  13. Justin30

    Justin30 Senior Member

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    This test if not ordered by a specialist costs money now in Canada....or at least in my province.....

    Wait we are Canadian lets send hundreds of millions for diseases with treatment but lets....not treat or research the people in our own country...understaff our hospitals with nurses and Drs and not have enough GPs for the growing population....
     
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  14. charles shepherd

    charles shepherd Senior Member

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    Current results after 24 hours below.

    Interesting to note the very high percentage of people who have been found to have a vitamin D deficiency when tested, as well as the fact that 30% of people with ME/CFS have never been tested for vitamin D levels:

    Our monthly Quick Survey

    Have you had a blood test (25-hydroxyvitamin D) to check your vitamin D level? And if yes, what was the result before any treatment?

    Raised (2%, 2 Votes)
    Normal (7%, 6 Votes)
    Low (26%, 21 Votes)
    Very Low (35%, 28 Votes)
    Awaiting result (0%, 0 Votes)
    No - never tested (30%, 24 Votes)

    Total Voters: 81
     
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  15. fds66

    fds66 Senior Member

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    When I asked to have my levels tested a couple of years ago my GP put it on the form along with the other tests I was having at the time but the lab refused to do it because they didn't see on the form any evidence of vit D deficiency symptoms. Recently my GP did another set of tests and she put the vit D test on unprompted from me and it came back deficient. No idea how long it has been low. (In the UK)
     
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  16. charles shepherd

    charles shepherd Senior Member

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    That is a pathetic excuse for refusing to perform this test - especially when the path lab already has the blood sample

    People can have a significant level of vitamin D deficiency without exhibiting any obvious symptoms

    In addition, identifying people who have a slightly low level of vitamin D, and may therefore be at increased risk, means that preventative measures can be taken
     
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  17. Mij

    Mij Senior Member

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    I have to say that every healthy person I've known in the last 20 or so years has had very low levels of Vit D when tested. I live in Canada.
     
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  18. Mij

    Mij Senior Member

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    Theyve also increased the reference range for 25HYDR from 25-200 in 2007 to IDEAL 75-200 back in 2008 when I was last tested.
     
  19. Justin30

    Justin30 Senior Member

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    Great wonder what thats supposed to mean....

    Well sir everything looks within range.....your good to go....but????......there is nothing wrong with you sir
     
  20. Justin30

    Justin30 Senior Member

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    Well guess im deficient
     

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