Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

Vitamin D deficiency advice..

Discussion in 'General Treatment' started by Roostr, Apr 2, 2017.

  1. Roostr

    Roostr

    Messages:
    11
    Likes:
    8
    Hi All,

    I've just had some blood test results back and my doctor has flagged that my vitamin D levels are extremely low, 26nmol/L (healthy range 75-200). I have not been tested for Vit D levels before.

    I have reason to believe 26nmol/L is probably much higher than my average over the last few years as I have spent a fair amount of time in the sun in the weeks prior to this test.

    My Doctor has prescribed 90 days of 3,200IU capsules, then re-test.

    -I am not well versed in what Vitamin D actually does, but I have been suffering with a variety of cognitive and mood symptoms (*including severe fatigue, but do not think I actually have CFS).. I'm interested in information and personal experiences of benefits (if any) I can expect to see by correcting my vitamin D levels?

    - Having started the supplements 2 days ago, I have had extremely intense nightmares each night. Is this normal, and any tips on avoiding!?

    -I seem to feel very on-edge and anhedonic shortly after taking them, it makes it impossible to relax. It seems to take most of the day to gradually decrease to a manageable level... again any advice welcome to reduce this!

    -any other Vitamin D advice or stories welcome!

    Thanks
     
  2. pamojja

    pamojja Senior Member

    Messages:
    431
    Likes:
    433
    Austria
    Vitamin D3 at high doses gave me initially some more energy. However, I needed in average 8.000 IU for the last 8 years to keep mine up in a seemingly more advantageous range, in average had 60 ng/ml serum 25(OH)D3 (30-100 range).

    Disease-Incidence-Prevention-by-25(OH)D-Level.jpg

    Note the title of this graphic is a bit misleading. There weren't any randomized double-blind studies. Just an association of serum levels with incidence, which doesn't prove causation.

    Higher vitamin D3 will use up many cofactors. Like Vitamin A and K2. I had to remedy a severe Magnesium deficiency after starting D3.
     
    Last edited: Apr 2, 2017
    sb4, jason30 and aminopie like this.
  3. Neunistiva

    Neunistiva Senior Member

    Messages:
    228
    Likes:
    1,266
    Hi. I had my levels tested and I was at 20 nmol/L. I am bedridden and get no sun. but I eat plenty of fish and eggs. Go figure.

    I have ME/CFS, and I never got tested before for vitamin D levels. However I live in a very sunny region so I am sure before I got stuck indoors that it was fine. I don't think my ME/CFS is connected with vitamin D in any way. However, I do hope to feel at least a bit better after supplementing, 20 nmol/L is really low.

    It is possible to be in the sun and not produce any vitamin D. It all depends on the angle of the sun, time of the year, air pollution, whether you are wearing sunscreeen, your skin color, etc. I learned a lot about vitamin D from this http://www.mayoclinicproceedings.org/article/S0025-6196(13)00404-7/fulltext

    I am taking 1000IU in a form of drops and don't have any side effects.
     
    Sancar likes this.
  4. pamojja

    pamojja Senior Member

    Messages:
    431
    Likes:
    433
    Austria
    In fact, the lowest I ever measured was after 6 week on a South-Indian beach with at least 2 hours sunbathing each day, I didn't use suncream since I don't get burned and thought the sun would suffice: 27 ng/ml, to convert to mmol/l multiply by 2,49.
     
  5. jason30

    jason30 Senior Member

    Messages:
    214
    Likes:
    84
    The Netherlands
    Yes, Vitamin D, Calcium, magnesium and k2 are synergists.
    K2 helps with the absorption of vitamin D, so you mostly see those 2 in a bottle.

    When you take vitamin d and get side effects, the first thing you need to check is magnesium! They even say that you always need to take vitamin d and magnesium together.
     
    Mary likes this.
  6. Johnskip

    Johnskip Senior Member

    Messages:
    141
    Likes:
    90
    more magnesium will bring up vitamin d with b Co factors
     
  7. Johnskip

    Johnskip Senior Member

    Messages:
    141
    Likes:
    90
    it's called the magnesium root protocol
     
  8. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,164
    Likes:
    15,245
    Some basic information and useful links from the MEA on vitamin D deficiency: symptoms, investigation, prevention and treatment:

    Vitamin D and ME/CFS
    Link to recent BBC news item on prevention:
    http://www.bbc.co.uk/news/health-36846894 >>>>

    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 comment on the BBC item:

    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:

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

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

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

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

    The (UK) 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: 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 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
     
    Neunistiva likes this.
  9. Johnskip

    Johnskip Senior Member

    Messages:
    141
    Likes:
    90
    yes you need vitamin d but if you can and I know some of us can't but I think getting vitamin d through sun foods and cod liver oil is a better way than supplementation
     
  10. Johnskip

    Johnskip Senior Member

    Messages:
    141
    Likes:
    90
    I'm not turning people away people do what they want and what they believe I just suggest like doing your own research of the magnesium advocacy group by Morley Robbins like I did and this is what I believe in after supplementing d with low d results for a decade and all it was was toxic!!!!@
     
  11. Neunistiva

    Neunistiva Senior Member

    Messages:
    228
    Likes:
    1,266
    @charles shepherd Are those units maybe supposed to be ng/mL? U.S. uses ng/mL and Europe uses nmol/L where under 75 is defficient.

    I got tested recently and my levels of 25-hydroxyvitamin D were 20 nmol/L! (less than 75 nmol/L is deficient). I am bedridden and light sensitive, but I eat oily fish for at least 8 meals per week and I also eat eggs (not sure how many on average). I didn't eat any foods that are fortified with vitamin D, but I did take supplements of 400IU but obviously it wasn't enough.

    I wholeheartedly recommend any housebound or bedridden patient to get tested, it's a simple blood test.

    Cod liver oil is a supplement. As you said, most of us can't get enough sun and research has found most people can't get vitamin D from food, and that was my experience as well:

    I don't think you should turn people away from supplements without any objective reasons.
     
    pamojja likes this.
  12. Johnskip

    Johnskip Senior Member

    Messages:
    141
    Likes:
    90
    we are in this together and obviously no one is enjoying our condition I am here to HELP that's all from previous real life experience
     
  13. pamojja

    pamojja Senior Member

    Messages:
    431
    Likes:
    433
    Austria
    Obviously not all European countries, like mine. But agree, in my case even 6 weeks of tropical sun isn't enough and I need to supplement a lot to get just to the median of the normal range.
     
  14. duncan

    duncan Senior Member

    Messages:
    1,935
    Likes:
    4,196
    What makes you assume that the vitamin D deficiency seen in so many pwME is due to these factors? My understanding is that persistent infections can reduce levels as well. If the latter is true, perhaps any sustained immune dysfunction or autoimmune issue might be at play.

    I also wonder about the effect of vitamin D supplementation, i.e., are we just raising our lab values with no true impact on our bodies?
     
  15. Neunistiva

    Neunistiva Senior Member

    Messages:
    228
    Likes:
    1,266
    You missed my point, I was talking about numbers denoting sufficient and deficient being mixed up. Geographical location is irrelevant.

    Supplementation of vitamin D absorbes the same way as food does (some supplements, like B12, actually have much better absorption that food) . "Lab value" is how much viramin D is in your blood, how could that have no impact on your body?

    Deficient vitamin D levels have been connected with adverse health outcomes so it's a pretty clear-cut case in favor of supplementation

    http://www.mayoclinicproceedings.org/article/S0025-6196(13)00404-7/fulltext'
     
  16. duncan

    duncan Senior Member

    Messages:
    1,935
    Likes:
    4,196
    The same way other vitamins (of course D is not a true vitamin) can get into your system and just get peed out. The same way abx can be in your blood and not reach a targeted organ. Or perhaps it's a synthesis issue - I don't know. I, however, DO know that simply because your blood work demonstrates the presence of a foreign substance, that does not necessarily mean that substance is doing the job it is supposed to do.

    I can't subscribe to the purported cause of D deficiency in us - it reminds me of the old claims that MS is due to lack of sunshine. I just don't know if there is enough data to comfortably make that default assumption. There is also the further consideration that chronic disease sufferers also report low levels of Vitamin D. It's easy to think it simply boils down to not getting out enough - but I dunno. I know that is not the case for me, anecdote that I am.

    We have several oddities in many pwME I am not sure of the reasoning for. Abnormal Co2 levels, for instance. We are told that could be due to hyperventilation. I've personally had three well-regarded ME/CFS experts suggest that to me as an explanation for my Co2 levels. Bull. That's like saying our abnormal BP rates or HR when we stand are due to stress - a nonsensical claim that many cardios still make despite evolving insight into ANS dysfunction.

    btw, having said all that, I still take D supplements, because, eh, who knows?
     
    Last edited: Apr 3, 2017
    Crux and PennyIA like this.
  17. Johnskip

    Johnskip Senior Member

    Messages:
    141
    Likes:
    90
    vitamin d is a hormone
     
    duncan likes this.
  18. Neunistiva

    Neunistiva Senior Member

    Messages:
    228
    Likes:
    1,266
    If it goes from your stomach into your kidneys and gets peed out, it didn't really end up in your blood, did it?

    Look, I am no expert, but I did read the metanalysis I linked, and I suggest you do the same. Vitamin D supplements were shown to increase blood levels. Increased blood levels were connected with positive health outcomes. Too high or too low blood levels were connected with negative health outcomes.

    It seems pretty clear cut to me.
     
  19. duncan

    duncan Senior Member

    Messages:
    1,935
    Likes:
    4,196
    Perhaps you are correct, @Neunistiva . As I said, I take supplements in the hopes it does make a difference. I personally have not seen any, but I am one data point.

    But there is no way anyone can sway me into believing the primary cause of our deficiency is lack of sunshine. I think it runs far deeper than that.
     
  20. PennyIA

    PennyIA Senior Member

    Messages:
    718
    Likes:
    1,660
    Iowa
    I would have to state that I've tested VERY VERY low on Vitamin D and taken rx for it for years, and while my test values go up? The symptoms aren't improved. I also have a doctor who stated that Vitamin D3 Oil is more 'bio-available' whatever that meant, and it raises my levels better than the gel cap I get from the pharmacy.

    Still not convinced I see an energy improvement or otherwise while on them. Though, given the link to magnesium and the fact that I can't tolerate magnesium supplements but NEED espom salt baths to make my life manageable (go through around 120 pounds of it a year); my issue might be that I'm lacking enough of it as a co-factor, but I haven't found a way to supplement appropriately in a way I can tolerate (well, besides the baths, which is probably insufficient).
     
    Crux and duncan like this.

See more popular forum discussions.

Share This Page