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Vitamin D and Increase in Symptoms

Discussion in 'General Treatment' started by TheMoonIsBlue, Mar 9, 2011.

  1. glenp

    glenp "and this too shall pass"

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    glenp

    My vitamin D levels test OK. I take 1,000 mg of d3 along with the 400 mg in caltrate. I don't have any problems with that dose - and my blood levels are ok

    glen
  2. Lala

    Lala Senior Member

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    I believe worsening on vitamin D is herxheimer reaction. Our body produces lots of natural antibiotics/antivirals/antifungals when we supplement vitamin D. For example cathelicidines, which are produced directly kill borrelia, candida and some viruses. I am taking vitamin D continously, but I am only on 2OOO-3000iu daily. I started with 5000iu, but it was too much and I was not able to tolerate it. So I cut back to zero and them slowly increased doses. It usually takes few weeks to adjust to the dose till increased symptoms disappear. I would say one month for every 1000iu for me.
  3. penny

    penny Senior Member

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    TheMoonIsBlue,
    It sounds like we have some similar reactions, I love my magnesium glycinate! It is definitely one of my "can't do without" supplements :)


    Maybe for some, but I don't think that's necessarily true for everyone. The first time I noticed D making a difference was when I stopped taking a relatively low dose (maybe 400 or 1000 IU's) after taking it regularly for at least 7 months. I had started it with several other things all at once so didn't know what supplement was doing what (I know bad strategy, I've learned since then!).

    A little while after stopping my sleep started improving, it still wasn't fabulous, but it just felt a bit more 'normal' if that makes sense. Less of the body-pain-wake-up-change-position-body-pain-wake-up-etc. cycle. I didn't really realize it was the D making the difference still I started taking it again a couple of weeks ago (it seems like everyone LOVES the stuff and can't get enough of it, so I added it back in) and my pain increased and my sleep deteriorated. Stopped, again last Friday and am seeing a gradual decrease (knock on wood) in pain again.

    I think D is probably good and needed for a lot of people, but I think the problem is when people assume it will help them because it helps others. Personally I thought it would be good or innocuous, it never occurred to me (until recently) that it would be bad! And it was that assumption that kept me taking something everyday which exacerbated my symptoms and made me feel worse.

    I've learned how important it is to be a critical pill taker and approach all of them as a scientific experiment. As much as I can at least, lord knows it ain't easy with the brain fog and unpredictable nature of the illness. No more assuming that something will be good for me because some folks with CFS have good results or the FDA says it's good for us or whatever. I am willing to try, I just no longer assume.
  4. glenp

    glenp "and this too shall pass"

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    blood testing

    Please make sure that you are getting your D levels in your blood checked - before any mega diosing

    Vitamin D is one of the vitamins most likely to produce vitamin poisoning when it is taken in mega-doses. For most overdoses, the toxicity can be reversed, albeit, some may take over a year. However, vitamin D toxicity caused by overdosing is irreversible.

    Vitamin D and vitamin A are the most toxic of the fat-soluble vitamins. The symptoms of vitamin D toxicity are nausea, vomiting, pain in the joints, and loss of appetite. Toxic doses of vitamin D taken over a prolonged period of time result in irreversible deposits of calcium crystals in the soft tissues of the body, and these may damage the heart, lungs, and kidneys.

    In all cases, treatment of vitamin toxicity requires discontinuing vitamin supplements. Vitamin D toxicity needs additional action to reduce the calcium levels in the bloodstream because it can cause abnormally high levels of plasma calcium (hypercalcemia). Severe hypercalcemia is a medical emergency and may be treated by infusing a solution of 0.9% sodium chloride into the patient's bloodstream. The infusion consists of two to three liters of salt water given over a period of one to two days.

    The prognosis for reversing vitamin toxicity is excellent for most patients. Side effects usually go away as soon as overdoses are stopped. The exceptions are severe vitamin D toxicity, severe vitamin A toxicity, and severe vitamin B6 toxicity. Too much vitamin D leads to deposits of calcium salts in the soft tissue of the body, which cannot be reversed. Birth defects due to vitamin A toxicity cannot be reversed. Damage to the nervous system caused by mega-doses of vitamin B6 can be reversed, but complete reversal may require a recovery period of over a year.

    http://www.vitamin-d-side-effects.com/toxicity.html
  5. Waverunner

    Waverunner Senior Member

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    I just found another explanation why some people experience anxiety and other problems with Vitamin D supplementation.

    http://www.musclechatroom.com/forum/showthread.php?13043-Vitamin-D-sensitivity/page3

    "Vit D ramps up thyroid hormone T4 -> T3 conversion, but it doesn't increase your ACTH and thus doesn't increase your cortisol.

    So if your cortisol is already too low, then boosting Vit D will further reduce your cortisol, because thyroid hormone T3 requires plenty of cortisol to achieve the boost in metabolism (since thyroid hormone T3 and cortisol work synergistically to achieve the metabolism boost which is incorrectly attributed to thyroid hormone T3 alone).

    So you're going to have to boost your cortisol, and that's usually because your ACTH is too low, and that simply requires you to supplement with some transdermal pregnenolone (not oral)."
    jeffrez likes this.
  6. Dog Person

    Dog Person *****

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    "In the bone marrow, vitamin D acts to suppress the production of cytokines by megakaryocytes (the precursors to platelets) and, in the absence of the hormone (vitamin D), the cytokines produced inhibit normal marrow function". http://www.ncbi.nlm.nih.gov/books/NBK24/

    "A key focus of interest has been that cytokines in one of these two sub-sets tend to inhibit the effects of those in the other. Dysregulation of this tendency is under intensive study for its possible role in the pathogenesis of autoimmune disorders."

    When you take vitamin D it has to be converted to its active form in the liver and the kidneys with the help of enzymes that use up the B vitamin called riboflavin. If you are very low in riboflavin, by taking vitamin D, it lowers your riboflavin further. So though you are taking vitamin D, it is not being fully converted to its usable form and you are deficient. Thus cytokine production is not suppressed. The fact that cytokines themselves trigger the release of other cytokines and also lead to increased oxidant stress makes them important in chronic inflammation.
  7. Charles555nc

    Charles555nc Senior Member

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    I have a bad reaction to vitamin D, and ive tried it long enough to know its not a herxheimer reaction.

    You might want to look into the marshal protocol.
  8. taniaaust1

    taniaaust1 Senior Member

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    I suggest no one to take supplementation of D unless tests have shown they are deficient. D is actualy not just a vitamin but also one could say a hormone.

    Fat soluable vitamins are far more toxic then water soluable ones. The safe range of D is narrower then it is in vitamin A. More then just a few times the recommended amount may be too much in some people.

    Toxicity symptoms of D are .. increased calicum withdrawl from the bones and teeth which in turn causes an increased calicum and phosphorus concentration in the blood. Loss of appetitie, headache, weakness, fatigue, excessive thirst, irritability, apathy (these symptoms would be easy to mistake as worsening CFS), kidney stones, irrevesible renal damage, calicification of soft tissues (blood vessels), kidneys, heart, lungs, tissues surrounding the joints.. and death.
    (Hypervitaminosis D).

    Significant sources of D are sunlight, fortified milk, fortified margarine, egg yolk, liver and fatty fish.
  9. Gavman

    Gavman Senior Member

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    If people are looking for vit d for pale skinned people.. like me. I've found a b vitamin complex goes well to help blood flow and get more color in.
  10. Jimk

    Jimk

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    My take is similar to Lala: increases of more than 400 iu per 3-4 weeks produced reactions, but if I kept it gradual I easily worked up to my current 2400 iu dose. I have had chronic bacterial, and probably viral, infections and my Vitamin D levels were chronically low as well. Increases of 1000 units as per doctors orders wiped me out: aches, brain fog, fatigue. Gradual increases by 400 units (D3) for 3-4 weeks have been no problem. I have heard complaints from my non-cfs brother inlaw that vitamin D made his joints ache: but I've watched him deal with recurrent fungal infections, increasing joint problems and swelling, and lots of other symptoms that scream "chronic occult infections" me. If you ramp up endogenous antibiotics with D, you increase bacterial kill in joints and thus immune system clean up reactions such as inflammation and cytokine reactions.
    All this assumes that you are working to increase a measured low blood level. The cases of toxicity using D3 are rare. I have seen too many cases of total immune system crash from people on that D deprivation protocol, very dangerous. Sure you will get less reaction if you suppress your immune system by depriving it of essential nutrients, but you degrade health in the long run.
  11. Waverunner

    Waverunner Senior Member

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    I have no idea if this stays the same but some days ago I took a 20000 (twenty thousand) IU softgel and everything was fine afterwards. I read some studies that claimed a positive effect for certain diseases only above 10000 IU so maybe this has to do with it. 400 to 3.000 IU always caused problems for me. If I remember correctly, a few hours in the sun during summers are equal to 25000 IU of vitamin D.
  12. rlc

    rlc Senior Member

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    Hi all with problems with taking vitamin D, it does seem to be vitamin D week on the forum, so Ill put what I just wrote out for someone else here as it may help point people with problems taking it in the right direction.

    There are three different known categories of things that can cause problems, when taking vitamin D

    They are interactions with other medications.

    Undiagnosed diseases, which you shouldnt take vitamin D with.

    A lack of co factors.

    Vitamin D3 interacts with some drugs. On this page it says what these drugs are http://www.drugs.com/drug-interactio...itamin-d3.html so if youre taking any other medications make sure that they arent on these lists before taking the vitamin D.

    There are certain diseases that you are not supposed to take vitamin D with; they are diseases such as Parathyroid disorders, Sarcoidosis, lung cancer, non Hodgkins carcinoma and tuberculosis. You shouldnt take vitamin D with these diseases because it will cause a rapid rise in calcium levels, if anyone is having a bad reaction to vitamin D they should get there calcium checked to see if it is high, and then if it is, get further investigations to find the underling missed disease. The most common cause is Parathyroid disorders, there is an interesting tread going on here that explains that most doctors dont know how to diagnoses this properly and that it has the same symptoms as CFS and causes bad reactions to Vit D, http://forums.phoenixrising.me/showt...n-participants

    If people have a lack of co factors which are vitamins and minerals that are needed to absorb vitamin D it can cause some side effects the co factors are Magnesium, zinc, boron, vitamin A and vitamin K.

    A lack of magnesium is the main one that causes side effects, raising vitamin D levels can unmask the symptoms of magnesium deficiency which are things like muscle cramps, pain and twitching and palpitations etc. I went through this myself not to pleasant but bearable and resolved with taking more magnesium. Co factors are explained in more detail here http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/

    So if people are having bad reactions to taking vit D check that youre not taking another medication that interacts badly with vitamin D.

    Get your Calcium levels checked to rule out other diseases that you shouldnt take vitamin D with and ask your doctor to make doubly sure that you dont have any of the above diseases.

    If all that is OK the problem is probably a lack of co factors like magnesium, if you can, get a good naturopath to look into it they are well trained at this, the interaction between different minerals is very complicated, taking too much of one will lower the levels of another, so it is best to get advice from an expert in this e.g. a Naturopath.

    In my opinion it would not be wise taking Calcium with vitamin D unless you have been told to do this by a doctor, vitamin D increases calcium levels, so your calcium levels will rise naturally when taking vitamin D, if you are taking calcium as well you may end up with too much, another reason not to is that Calcium and Magnesium are antagonists so taking too much calcium will lower your magnesium level, if your bad reaction to vitamin D is caused by a lack of magnesium you will only be making it worse. The other reason is that, the reason why you are not supposed to take vitamin D with any of the diseases listed above (Hyper parathyroid etc) is that when you take vitamin D with these diseases it causes Calcium levels to rise dramatically, if you have one of these diseases and it hasnt been diagnosed and you then take Vitamin D and Calcium as well, your Calcium levels will sky rocket and you could end up in deep trouble!

    When taking large doses of vitamin D always make sure you get your levels rechecked to make sure that you are not taking too much.

    And always get a Vit D test first before taking it, it will help you to see what level of treatment you need if you need any at all.

    Hope this helps someone

    All the best
  13. xdopamine

    xdopamine

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    This is interesting! I have tried 100-5000IU and it always worsened my fatigue and weakness. The strange thing is that it only happens when I take vitamin D3 supplements - sun exposure isn't a problem for me. Can you describe your problems you got from 400-3000IU? You are taking dekristol right? Now I am wondering whether I can tolerate dekristol as well.
  14. Waverunner

    Waverunner Senior Member

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    My symptoms from low Vitamin D suppl. were excitatory neurotoxicity (feeling highly nervous and unwell) and an increase in allergies. You may want to read this article from SD:

    http://www.sciencedaily.com/releases/2008/01/080125223302.htm

    ScienceDaily (Jan. 25, 2008) Low blood levels of vitamin D have long been associated with disease, and the assumption has been that vitamin D supplements may protect against disease. However, this new research demonstrates that ingested vitamin D is immunosuppressive and that low blood levels of vitamin D may be actually a result of the disease process. Supplementation may make the disease worse.

    In a new report Trevor Marshall, Ph.D., professor at Australias Murdoch University School of Biological Medicine and Biotechnology, explains how increased vitamin D intake affects much more than just nutrition or bone health. The paper explains how the Vitamin D Nuclear Receptor (VDR) acts in the repression or transcription of hundreds of genes, including genes associated with diseases ranging from cancers to multiple sclerosis.
    "The VDR is at the heart of innate immunity, being responsible for expression of most of the antimicrobial peptides, which are the bodys ultimate response to infection," Marshall said.
    "Molecular biology is now forcing us to re-think the idea that a low measured value of vitamin D means we simply must add more to our diet. Supplemental vitamin D has been used for decades, and yet the epidemics of chronic disease, such as heart disease and obesity, are just getting worse."
    "Our disease model has shown us why low levels of vitamin D are observed in association with major and chronic illness," Marshall added. "Vitamin D is a secosteroid hormone, and the body regulates the production of all it needs. In fact, the use of supplements can be harmful, because they suppress the immune system so that the body cannot fight disease and infection effectively."
    Marshall's research has demonstrated how ingested vitamin D can actually block VDR activation, the opposite effect to that of Sunshine. Instead of a positive effect on gene expression, Marshall reported that his own work, as well as the work of others, shows that quite nominal doses of ingested vitamin D can suppress the proper operation of the immune system. It is a different metabolite, a secosteroid hormone called 1,25-dihydroxyvitamin D, which activates the VDR to regulate the expression of the genes. Under conditions that exist in infection or inflammation, the body automatically regulates its production of all the vitamin D metabolites, including 25-hydroxyvitamin D, the metabolite which is usually measured to indicate vitamin D status.
    Vitamin D deficiency, long interpreted as a cause of disease, is more likely the result of the disease process, and increasing intake of vitamin D often makes the disease worse. "Dysregulation of vitamin D has been observed in many chronic diseases, including many thought to be autoimmune,"
    said J.C. Waterhouse, Ph.D., lead author of a book chapter on vitamin D and chronic disease.
    "We have found that vitamin D supplementation, even at levels many consider desirable, interferes with recovery in these patients."
    "We need to discard the notion that vitamin D affects a disease state in a simple way," Marshall said. "Vitamin D affects the expression of over 1,000 genes, so we should not expect a simplistic cause and effect between vitamin D supplementation and disease. The comprehensive studies are just not showing that supplementary vitamin D makes people healthier."
    Journal reference: Marshall TG. Vitamin D discovery outpaces FDA decision making. Bioessays. 2008 Jan 15;30(2):173-182 [Epub ahead of print] Online ISSN: 1521-1878 Print ISSN: 0265-9247 PMID: 18200565
  15. xdopamine

    xdopamine

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    Yeah, I know about the marshall protocol. However, if vitamin D is really bad for us why can you tolerate high but not low doses? Why can I tolerate the sun but not tiny doses (100IU) of vitamin D3 supplements? It doesn't make sense to me.
  16. Waverunner

    Waverunner Senior Member

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    Yes, there are lots of critics to the MP, I just wanted to bring it up. The reason why I tolerate high doses better than low doses probably has to do with its effect. While high doses are enough to suppress inflammatory responses, low doses may not be. Moreover I heard that there is a difference in the form of Vitamin D produced through sunshine and that of supplements. I tolerate sunshine Vitamin D without any problem but I have no idea why this is because it's Vitamin D3 in both cases.
  17. healing1

    healing1

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    I have had calcium levels as high as 10.9 all my symptoms began with muscle twitching and poor sleep, stopped taking vitamins thinking they caused it, calcium has fluctuated between 9.6 and 10.6 since. I have added back in a multi with 800IU of D and twitching, heartburn, headache, thirst and feeling bad came on within 5 days. Magnesium does provide some relief, but I am not sure if I should avoid D or continue.

    My D-25 was 32 and D-1.25 was 52 on Trevor's forum over 60 is bad and if my D goes to 40 it seems mine would go over that. So I am thinking I should avoid D.

    How is everyone avoiding D? What supplements multis are you taking?

    I am taking HydroxyB-12, GNC MegaMen/Raw One Multis Alternated, L-Carnitine, Fish Oil and Copper (deficiency need 2mg for 6wks), Magnesium Citrate.

    How can I take out the Multi?

    What products has everyone been successful with in avoiding D?
  18. rlc

    rlc Senior Member

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    Hi healing 1, what is the referance range used for your calcium tests? If you are saying that your calcium levels are high you should not be taking vitamin D even though your vitamin D levels indicate deficiency. If your Calcium levels are high you should instead be being investigated for the diseases that cause high Calcium like parathyroid disorders etc, see my above post. If you have any of these diseases taking vitamin D is likly to make you sicker.

    I assume by trevors forum, you mean trevor Marshall? I advise extreame caution regarding the theories of trevor Marshall, I have explained why in this tread http://forums.phoenixrising.me/index.php?threads/vitamin-d-receptor-dysfunction.21996/

    Hope this helps

    All the best
  19. healing1

    healing1

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    D-1.25 16-81
    D-25
    <20 insufficient
    20-29 suboptimal
    30-100 optimal
    >100 toxicity

    I have tested parathyroid twice

    2-23-13

    Phos 3.1
    Ca 10.9 (results rechecked and verified * note on labwork)
    D-25 41
    PTH 16

    (Stopped all D supplementation on this day)


    3-18-13

    Ca 9.6
    Phos 2.9
    5.35 Ionized Ca 4.6 - 5.4
    24 PTH
    21 ACE (sarc marker)
    32 D-25
    52 D-1.25
  20. rlc

    rlc Senior Member

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    Hi healing1, i'm more then happy to have a look at your blood work, and see if I can find a medical source on the net which may help explain what is going on, However you are probably not aware of this, but many different countries use different units of measurements for the tests, so without knowning if say your Vitamin d is in ng/ml US or nmol/l UK etc, I can't make head nor tail of what your lab results mean, e.g if your PTH result is in pg/ml then it is ok, if it is in pmol/l you have a problem. I you can add the units of measure meant that all your test are done in to your last post, this will greatly assist me, in trying to help you.

    All the best

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