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Vitamin D

Discussion in 'General ME/CFS Discussion' started by Jessie 107, May 15, 2017.

  1. Jessie 107

    Jessie 107 Senior Member

    When I was having blood tests last year to find out what is wrong with me, my vitamin d was low so now I take a supplement for it.
    I don't know if I should stop talking it now the weather is better? If the sun is out I always sit outside for a while.
    What do you advise?
  2. pamojja

    pamojja Senior Member

    Retest. Personally I need about 200 mcg to get to a serum level of about 60 ng/dl over the years. Once I went to a tropic beach for 6 weeks and thought I could do with much less. But came back with deficient levels again.
    *GG* likes this.
  3. TigerLilea

    TigerLilea Senior Member

    Vancouver, British Columbia
    I take a lower dose over the summer months and a higher dose over the darker fall/winter/early spring months.
  4. dangermouse

    dangermouse Senior Member

    My vitamin D was low even though I get some sunshine (when in sun room) and take 2 000UI daily. I'm on 20 000UI for a week, then back on 2 000UI daily, in six weeks retest.
    Last edited: May 15, 2017
  5. *GG*

    *GG* senior member

    Concord, NH
    I take 5000 IUs year round, and rarely have high levels. I do get tested about 2x a year, at least. My CFS specialist test it, and so does my PCP. I take 10,000 IUs once around September, and am just cutting back now, in case I get more sun soon.

    dangermouse likes this.
  6. charles shepherd

    charles shepherd Senior Member

    Basic information from the MEA on vitamin D deficiency - research, symptoms, testing, prevention and treatment - in relation to ME/CFS:

    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 vitamin D deficiency - which should be under medical supervision - is essential

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

    Summary of key points relating to the vitamin D (25-hydroxyvitamin D) blood test:

    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 almost 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:

    Summary of research into vitamin D and ME/CFS from the MEA purple book (2017 edition):

    Consider vitamin D deficiency in adults with restrictive diets and lack of access to sunlight.

    A retrospective study of serum 25-OH (hydroxy) vitamin D levels 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:
    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.
    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.
    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.
    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 statistically 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.
    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, MEA
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  7. Kalliope

    Kalliope Senior Member

    I tend to get low levels too :meh: even though I have access to daylight now.

    Is it true that people with glasses and contact lenses could take them off once in a while when outside to let the eyes have direct daylight, as some (or a lot?) vitamin D can get absorbed via the eyes, or is that just a myth I've picked up from somewhere?
  8. Basilico

    Basilico Florida

    This is a topic that I think is quite complicated; there are many unknowns and I don't know what the answer is. My gut feeling is if you are getting enough sun, then supplementation shouldn't be necessary. However...

    I have been trying to learn more about vitamin D, and the more I read, the more confusing it is because very little is actually known.

    I live in Florida and get full sun on a regular basis all year round. I am far enough south that the angle of the sun allows me to produce vitamin D the entire year. Yet, I technically have vitamin D deficiency (29). How is this possible? So I've been on a wild goose chase trying to understand vitamin D.

    For example:

    "The characteristics of 1,25(OH)2D are those of a hormone, and consequently vitamin D is a prohormone rather than a true vitamin. The structure of 1,25(OH)2D is similar to that of other steroid hormones. As long as sunlight exposure is adequate, 1,25(OH)2D can be produced by the body without the requirement for ingestion in the diet.

    Precisely defining vitamin D deficiency or insufficiency on the basis of 25(OH)D values is still a matter of much debate. A useful but rather simplistic classification of vitamin D status is shown in the Table. A cutoff value of 30 ng/mL is sometimes used for optimal vitamin status. On the basis of measured concentrations of 25(OH)D, many patients are given a diagnosis of vitamin D deficiency or insufficiency when most have no evidence of disease."

    Then I came across this study:

    Low vitamin D status despite abundant sun exposure.
    Binkley N1, Novotny R, Krueger D, Kawahara T, Daida YG, Lensmeyer G, Hollis BW, Drezner MK.
    Author information

    Lack of sun exposure is widely accepted as the primary cause of epidemic low vitamin D status worldwide. However, some individuals with seemingly adequate UV exposure have been reported to have low serum 25-hydroxyvitamin D [25(OH)D] concentration, results that might have been confounded by imprecision of the assays used.

    The aim was to document the 25(OH)D status of healthy individuals with habitually high sun exposure.

    This study was conducted in a convenience sample of adults in Honolulu, Hawaii (latitude 21 degrees ).

    The study population consisted of 93 adults (30 women and 63 men) with a mean (sem) age and body mass index of 24.0 yr (0.7) and 23.6 kg/m(2) (0.4), respectively. Their self-reported sun exposure was 28.9 (1.5) h/wk, yielding a calculated sun exposure index of 11.1 (0.7).

    Serum 25(OH)D concentration was measured using a precise HPLC assay. Low vitamin D status was defined as a circulating 25(OH)D concentration less than 30 ng/ml.

    Mean serum 25(OH)D concentration was 31.6 ng/ml. Using a cutpoint of 30 ng/ml, 51% of this population had low vitamin D status. The highest 25(OH)D concentration was 62 ng/ml.

    These data suggest that variable responsiveness to UVB radiation is evident among individuals, causing some to have low vitamin D status despite abundant sun exposure. In addition, because the maximal 25(OH)D concentration produced by natural UV exposure appears to be approximately 60 ng/ml, it seems prudent to use this value as an upper limit when prescribing vitamin D supplementation.

    This leaves me with LOTS of questions:

    1) If adequate sun exposure is all that is required to produce sufficient vitamin D, how is it possible that a majority of people who have more than enough sun exposure have "vitamin D deficiency"? Perhaps the levels used by labs are actually not valid. In fact, there is no definitive answer as to what adequate vitamin D levels are.

    2) Is it possible for different people to have different optimal vitamin D levels based on their genetics? From what I've read, this seems very likely, yet there is only one range applied to all people across the board.

    3) How safe is it to supplement vitamin D longterm? This is never addressed by doctors, which I find very concerning. Vitamin D is not a vitamin; the characteristics of 1,25(OH)2D are those of a hormone, and consequently vitamin D is a prohormone rather than a true vitamin. The structure of 1,25(OH)2D is similar to that of other steroid hormones.

    4) As long as there is no physical evidence of Vitamin D deficiency, what is the benefit of raising it? I've taken vitamin D in the past and never noticed any improvement. I know I'm not alone in this. If someone feels better from supplementing with vitamin D, then that's great and they should continue. But if there's no improvement, why continue?

    5) There is a built-in shut-off valve that prevents people from producing more than a certain amount of vitamin D from sunlight exposure after a certain amount of time. Clearly, there is a reason for this. I don't know if this feature is to keep overall levels from rising above a certain level, or to prevent the level from rising too much too quickly. How safe is it to ignore the body's threshold and subject it to far more vitamin D in the form of supplementation than it determined was appropriate?

    I'm not a medical expert, and it might be that there are good answers to all of my questions. But I have yet to find a doctor who is interesting - or willing - to discuss any of them with me.
    Last edited: May 15, 2017
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  9. pamojja

    pamojja Senior Member

    Honestly, haven't found any MD who would be willing to discuss any research during consultation with me..

    Sure, these study results are all only observational. But so are those that assume that cigarette smoking is the cause of the majority of preventable deaths, which also rarely anyone would deny.

    One thing important to consider with any individual high dose supplementation is what some here call refeeding-syndrom. For example in my case, a sub-clinical Mg deficiency got very severe by trying to get my serum levels up to a seemingly more advantageous range. In fact, just to avoid painful muscle-cramps I now also need to take at least 1.8 g/d of supplemented elemental Mg. Blood levels are still deficient. But everyone has different preconditions and bio-chemical individuality.

    Also consider the codependency of all the fat soluble vitamins, like Retinol (which can't be converted from Beta-Carotene in up to 50% of the population) and Vitamin K2.

    Much more discussions on controversial findings with Vitamin D at that side. As already said, in my case 8.000 IU/d of vitamin D3 kept my 25(OH)D serum levels at about 60 ng/ml during the last 8 years (which is about mid-range with my lab), while 22.000 IU/d of retinol gave me only about 550 µg/l of serum levels (425 - 831 normal range). Too bad K2 can't be measured, but I make sure to get enough of that completely nontoxic vitamin too.

    However, for me the the case with vitamin D3 is also easy to decide, since with such very comprehensive supplementation (in fact of all vitamins, most minerals and beneficial amino-acids) I could revert a 60% government-certified walking-disability due to PAD.
    Last edited: May 16, 2017

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