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Some questions for those who have been taking vitamin D3

Discussion in 'General ME/CFS Discussion' started by serg1942, Sep 25, 2018.

  1. serg1942

    serg1942 Senior Member

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    Hi everybody,

    I have been working on a thorough review on vitamin D supplementation--which I am finding much to my surprise to inhibit pretty much all parts of the immune system with a potency similar to that of corticosteroids--, and it would be very important to me, in order to finish this investigation and reach valid conclusions, to know the following questions. I'd really appreciate your inputs here! I will be sharing with you my article really soon:

    For those of you who have been taking vitamin D for a long time:

    1. How much of vit D3 (Cholecalciferol) have you been taking and for how long (more or less)?

    2. If you are measuring blood levels, could you please let me know what concentration of 25-hidroxicolecalciferol (Calcifediol) and of 1,25-dihydroxycholecalciferol (calcitrol), in blood, have you achieved (please give me the units if possible)? I am much more interested in the levels of the active form, calcitrol, as I assume that its precursor, Calcifediol, did rise in serum by taking supplemental vit D3. I need to know if this makes the active vitamin D to increase even more (it is usually high in chronic diseases), given that this is the one that might be causing serious problems.

    3. If you could let me know which were your previous levels of both vitamins (previous to start supplementing vit D3), this would be also really helpful!

    Thank you very much in advance!
    Sergio
     
  2. pamojja

    pamojja Senior Member

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    Guess you'll get more quicker results if you search the forum for 1,25-dihydroxycholecalciferol, also try google site search. Never got it tested myself. Here are my results for 10 years, started comprehensive supplementation in 2009:

    Code:
    year: ng/ml - mcg/d
    
    2009:       -   50
    2010:   63  -  160
    2011:   43  -  140
    2012:   62  -  300
    2013:   84  -  200
    2014:   50  -  190
    2015:   78  -  210
    2016:   72  -  170
    2017:  101  -  220
    2018:   93  -  160
    You can read about the details and how much it helped here.
     
  3. serg1942

    serg1942 Senior Member

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    Wow @pamojja , this is helpful!!!! Thank you so much! It is not that easy to find studies which have measured both vitamins after a period of time of supplementation in chronic conditions... I have been researching this subject for weeks, and read over a hounded studies, and yet this point was still a mystery to me... Never thought I would find it by searching on the forum either, as it is a very specific measurement what I'm looking for, but I'll try!

    As per your improvement, I'll read your post. After everything I am researching, it seems clear that vit D3 supplementation does help many patients with many conditions, but its molecular effects are not very different to that of corticosteroids or that of TLR inhibitors, or that of other specific anti-inflammatory drugs for autoimmune conditions. You are actually inhibiting both the acquired (this is not necessarily bad, although you do it in such a powerful way that I think it might be dangerous) and the innate response (here's the real dilema). So, you are letting intracelullar infections to spread, and even though you can get symptomatic relieve from vit D3, in the long term you are worsening the situation in my humble opinion (which I'll back up soon with plenty of evidence). Supporting this idea, there is evidence indicating that, even when the 1,25 dyhydroxicholecalciferol is high, it is not really activating its receptor (VDR), so there's no way you are boosting the innate-vitamin-D-mediated immunity; you are rather immunesupressing even more...

    Again thank you so much!
    Best!
    Sergio
     
  4. serg1942

    serg1942 Senior Member

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    What do you mean? aren't these your results over the years of blood 0,25 hydroxycholecalciferol (first row) and 1,25 dihydroxicholecalciferol (second row)?

    Thanks! Sergio
     
  5. serg1942

    serg1942 Senior Member

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    Ok, I'm sorry @pamojja , the units (different to Spain) got me confused... you only measured the 0,25 one???...I don't get it, as the numbers in different units should be proportional, but these are not... Could you please explain what you measured?

    Thanks anyway for sharing!! Sergio
     
  6. pamojja

    pamojja Senior Member

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    The year, averaged out 25(OH)D serum levels and the daily vitamin D3 intakes in mcg.

    Also relevant to vitamin D serum levels, have been since 2012 in the deepest winter each for 6 weeks to a South-Indian beach, where I've got full-body sun-exposure each day from 10-12AM and 3:30-5:30PM without suncream. Never got sunburned. But by therefore lowering supplementation returned with even below normal serum levels one time. Last year I quit one of my part-time jobs, and therefore also during the Central-European Summer got 40 days with daily 2 hrs sun-exposure. But this Summer really beat it all, have been getting already 90 days! Thereby also love the cold-water adaptation starting right now. End of last year had my highest 25(OH)D of 135 ng/ml. Showing that only since recently sunshine is for the first time substantially contributing to my serum levels.

    Don't you think I would have felt it by now? Instead had a 60% walking-disability revoked from PAD! And sometime think it really strange that with so many chronic diseases to have had my last sickness leave (3 days) 12 years ago already. Am actually getting jealous about some of my coworkers, who are otherwise totally healthy but still enjoy sickness leaves.

    Would love to see the evidence, but usually scientific studies only test one agent at a time, in this case vitamin D. Every experienced supplementer knows hows stupid to do that would be. One needs each and every nutrient, with D3 especially vitamin A, Ks, Magnesium, etc. And at high doses too. I haven't found even one study looking into combined supplementation.
     
    Last edited: Sep 25, 2018
  7. serg1942

    serg1942 Senior Member

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    :thumbsup: Ok, thanks for clarifying!
     
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  8. Mary

    Mary Moderator

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    This sounds a little scary! I've been taking 5000 IU of D3 for many years, probably at least 10 years if not more.

    Here's my last two blood tests:
    8/16 - Vitamin D,25-OH (25 hydroxyvitamin D, calcidiol 25-hydroxycholecalcifoerol test -
    Range: 30 - 100, result: 52

    12/17 - Same test, result 61

    I didn't see results for calcitrol.
     
  9. Hufsamor

    Hufsamor Senior Member

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    I have tried dvit supplements over and over again, different brands, different doses. But i get sick every time. Complainig to my doctor, she told me to use solarium 10 min twice a week. (I am from norway, so in the wintertime it is not enough sun to get what i need from the real sun....It was a rule for how much time in the sun i would need summertime as well - i think 10- 20 min in shorts an singlet in the sun every day)
    Just in case you dont do well on d vit sup either.
    (And if you are able to sit in the sun every day)
     
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  10. pamojja

    pamojja Senior Member

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  11. Thinktank

    Thinktank Senior Member

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    I will have to look up the numbers from the past 5 years but overall 25-oh is low and 1,25 di-oh is high.
    Vitamin D supplementation makes me feel sick, no matter the dose.
     
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  12. Sundancer

    Sundancer Senior Member

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    I use 400 iu daily in summer ( as codliveroil) and add twice 5000 a week in winter.
    I started taking supplementation when I became sick, as I've always been walking and working in the sun and all of a sudden was bedbound. I tjhought it logical, was the first sup I started taking.

    in the summer that I was falling ill ( so before supplementation) D25OH was 107.

    last year my new GP had it measured twice, 106 and 111 ( so with the abovementioned amounts)
    I'll stay on this dose until I'm (hopefully) able to get in the sun again.
     
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  13. pamojja

    pamojja Senior Member

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    I think there are intrinsic problems in trying to confirm one's bias with asking such a question on a forum. As already mentioned, companion nutrients you don't even ask for might play a much higher role than is scientifically assumed. Secondly, everyone advising supplementation above certain harmless RDA amounts, advises to do so by making sure serum levels, be it 25 or 1.25, do stay in range. Therefore most having a series of tests would have the dose adapted accordingly. Where one could expect everyone responding with too high 1.25 levels, having at least reduced the dose. And therefore sort of impossible to find even one where the same dose of vit D3 despite high 1.25 levels would increase it even further.

    Like the experience of Thinktank, high levels despite not supplementing wouldn't confirm the bias. Since in his case there must be totally other factors at play causing high levels, he doesn't even tolerate supplementation.

    However, having now read that thread - beside finding further cases with high 1.25 levels but not even tolerating vitamin D supplements, or ceasing supplementation without followup - to my surprise I also found exactly 1 interesting report having consecutive testing with high levels, AND STARTING at a high supplemental dose:

    Despite the difficulty of even finding such cases, the only found till now does confirm that missing Vitamin D and companion nutrients could be at fault, and starting with high doses didn't raise it further, but even brought 1.25 levels down to a healthy range.
     
    Last edited: Sep 26, 2018
  14. pamojja

    pamojja Senior Member

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    Just ask yourself this question: how many would stay alive without corticosteroids? For example in an adrenal crisis?
     
  15. pamojja

    pamojja Senior Member

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    Checked what https://www.labtestanalyzer.com says about higher than normal calcitriol levels. Do take it with a grain of salt, in that they just started to sieve through the whole of scientific literature this year (really a difficult and endless task; also considering the hierarchy of evidence). And always best to check the reverences for oneself (at times single case reports, where completely unknown factors may be at play).

    And the suggestions:
    In comparison to my highest peak at 135 ng/ml (25(OH)D):
    So till now they haven't seem to have found any real association between high 1.25 and 25 levels. The first is caused by diseases. The later by supplementation of Vitamin D.

    However, Dr. John Canell's findings in sieving the literature:
    Personally vitamin D brought serum calcium up from below normal within 2 years of starting to supplement. And stayed at the mean since. Ionized calcium at the perfectly mean of range for last 4 years. Parathyroid hormone also from below normal to just above the lower end of range tested repeatedly. Phosphor at the lower third of the normal range in average.
     
    Last edited: Sep 26, 2018
  16. pamojja

    pamojja Senior Member

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    Looking at these 2 particular reverences for the claim that elevated vitamin D increases risk of all-cause mortality, they both relativize their findings in the end:
    Most likely reason for such epidemiological results (which never proof causation due to unknown confounders) is, that only supplementation causes higher 25(OH)D levels. Therefore only those with preexisting chronic diseases (as in my case) would try to reach such high levels. And still in the end die earlier, but not from the higher levels, but more likely the chronic issues itself.
     
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  17. jesse's mom

    jesse's mom Senior Member

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    I have a question on this subject. Please excuse the fact that I am real beginner in learning to supplement.

    My new DR ahd blood work once, then asked me to come back and have some other blood tests. She prescribed a very high dose vitamin D3 (1.25mg 50000 unit that I was to take once a week.

    I took it on Saturday afternoon, since then my blood pressure has dropped dangerously low. It has been hovering around 100/50, both evenings and today down to 95/40, my beats per minute are not high. I was passing out in medsentance yesterday evening, then it began to come up. I slept 3 hours and then was awake all night.

    Is there anything I can do to naturally bring this down? Walking around the house is not helping and I do not want to fall.

    At what point should I go to the dreaded ER?
     
  18. pamojja

    pamojja Senior Member

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    Not much one can do against sensitivity to a high dose vitamin D, except stop taking any, along with reducing calcium intake (esp. diary). Personally wouldn't take such unnatural high prescribed boluses at once, which often aren't even vitamin D3 but D2.

    I'm hoping you returned to somewhat normal and didn't need to go to the ER.
     
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  19. Crux

    Crux Senior Member

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    Vitamin D can increase the production of nitric oxide, a gas that relaxes blood vessels and lowers blood pressure.

    In the ER, vitamin D overdose is treated with corticosteroids, fluids, etc.

    Fat soluble vitamins, such as K2,E,and A are needed for Vitamin D uptake.
     
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  20. jesse's mom

    jesse's mom Senior Member

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    Thank you, I had to treat my asthma with a Advair dose, and my emergency albuterol puffer. i have since stopped wheezing and had some normal BPs in the 120/90 range. I was super thirsty and drank lots of water and some tea.

    This now makes perfect sense.
     
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