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Should I take vitamin D?

Discussion in 'Immunological' started by tinacarroll27, Mar 19, 2017.

  1. tinacarroll27

    tinacarroll27 Senior Member

    Hi all!! Not sure if I am putting this is the correct forum area but immunity seemed the best. Any way, recently blood tests have shown I have very low vitamin D and my GP ( I am in the uk) put me on vitamin D supplements. I have been taking the supplements but I think they are not agreeing with me as my symptoms have felt slightly worse recently (more headaches and muscle pain) and can't think of anything else new in my life that could cause this. Then I saw this on YouTube and it made me think perhaps I shouldn't take vitamin D. According to the video Dr De Meirleir says that we tend to have high 125 Vitamin D which is a result of inflammation and the last thing you should do is give vitamin D supplements. I am not sure which vitamin D I was tested for but my suspicion is that it will be the 25 version of the Vitamin D as it is a cheaper test. He also says you should also check the ratio of 25 to 125 and in normal healthy people it will be around 1.5 or 2 but in ME he finds it much higher around 4 or 5. Not sure if my GP will do the test for 125 Vitamin D or even know all this information, especially where ME is concerned or how to treat it. Makes me wonder if I should keep taking the supplements... is it safe for me to continue? I know GP and the NHS generally know very little about this illness, so I should I trust them on this?

  2. *GG*

    *GG* Senior Member

    Concord, NH
    This is news to me. Vitamin D is an immune modulator. I ahve mine checked at least 1 time a year. I take 5K IUs year round, and 10K during the shorter months.

    My levels are rarely to high, and usually at a good level!

  3. Neunistiva

    Neunistiva Senior Member

    I am interested in vitamin D as I have started taking supplements several days ago due to very low levels of 25(OH)D.

    This is what Wikipedia says why 25(OH)D is measured rather than 1,25(OH)D
    Interestingly, a quick search of vitamin D, infection, and auto-immunity suggests:


    Like having brain fog doesn't make these decisions difficult enough on its own, everyone seems to disagree with each other.
  4. Hugo

    Hugo Senior Member

    Kennys explanation sounds in parts like marshall protocol

    I personally dont belive in the treatment in marshall protocol. Its a dangerous protocol and most people quit it. But its hard to know if his theory is somewhat correct, maybe further studies in D-vitamin 1.25 and 25 in chronical ill would be in place.

    By the way if you do take vitamin D (I do aswell because im deficient in 25 (OH)D as you are) it could be useful to take it with magnesium

    There is generally no need for D vitamins during the summer because of the high intake from the sun.
    Last edited: Mar 20, 2017
    Daffodil likes this.
  5. charles shepherd

    charles shepherd Senior Member

    Basic information from the MEA on vitamin D (deficiency, symptoms, testing, prevention and treatment) and ME/CFS:

    Vitamin D and ME/CFS
    Link to recent BBC news item: >>>>

    Everyone should consider taking vitamin D supplements in autumn and winter, public health advice in England and Wales says.

    It comes as a government commissioned report sets the recommended levels at 10 micrograms of the vitamin a day.

    But officials are concerned this may not be achievable through diet alone, particularly when sunlight, which helps in vitamin D production, is scarce.

    Low vitamin D levels can lead to brittle bones and rickets in children.

    Dr Charles Shepherd comments:

    We often flag up the fact that people with ME/CFS, especially those who are partially or totally housebound, are at increased risk of developing vitamin D deficiency - mainly due to the lack of exposure to sunlight (which helps with vitamin D production) but this may also be compounded due to lack of foods that are good sources of vitamin D in their diet (i.e. oily fish, eggs, fortified breakfast cereals).

    This new advice from Public Health England, which recommends that everyone should consider taking a vitamin D supplement during the autumn and winter months, is therefore very relevant - because vitamin D is essential for good muscle and bone health. So any deficiency of vitamin D in ME/CFS could add to the problems of muscle weakness that is already occurring.

    On a personal basis, I will now be following this advice and taking a vitamin D supplement during the autumn and winter months.

    Link to the most recent MEA statement on vitamin D and ME/CFS and our June 2016 MEA website poll on the subject:

    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:

    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.

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
  6. PatJ

    PatJ Senior Member

    Yukon, Canada
    Vitamin D makes my symptoms worse, some much worse especially fatigue and sensitivity to certain types of light.

    If you do take vitamin D then certain cofactors are very important, especially magnesium. Many people develop problems when taking vitamin D (such as developing kidney stones) that are related to induced magnesium deficiency.

    This site has good information about cofactors etc.

    trishrhymes likes this.
  7. Neunistiva

    Neunistiva Senior Member


    This does not apply for many people with ME/CFS, especially more severe ones, as we are housebound or bedridden, light-sensitive, and can sleep during the day.

    Interestingly, I don't eat restrictive diet, I eat a lot of fatty fish and some eggs during the week, and still my 25 (OH) levels are shockingly low, 8 ng/mL (above 30 ng/mL is normal).
    *GG* and PatJ like this.
  8. Hugo

    Hugo Senior Member

    No ofcourse, I meant for the people that are out sometime during the day (even very short time is enough during the summer).

    Housbound could be enough to just open the window if one not are light-sensitive.
  9. kangaSue

    kangaSue Senior Member

    Brisbane, Australia
    Hugo likes this.
  10. aaron_c

    aaron_c Senior Member

    I can't tolerate oral Vitamin D, but UV-b light works fantastically. Stephanie Seneff claims that vitamin d produced in the skin is in fact vitamin D sulfate, which has somewhat different properties than the unsulfated version. It's the only reason I know of that explains the difference.

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