anyone treated for low vit no avail?

Discussion in 'Fibromyalgia Main Forum' started by jsshutt, Jun 17, 2008.

  1. jsshutt

    jsshutt Member

    I have been low in Vit D for a long time. I have been on 50,000 units prescribed by Drs for over a year and a half and it will not go up. Same with my 12 yr old son who was Dx with Fibro.
    Anyone else have same problem or solution?
  2. mujuer

    mujuer New Member

    Does your Dr. have any answers for you as to why your numbers are not rising? I just had some blood work done yesterday and asked for a vit. D panel to be taken. I hope someone has the answers. P
  3. jsshutt

    jsshutt Member

    2x week? I guess I can try, although my Dr will not up my script to that much. Will have to do it with another Vit D and take 10 a day!
  4. zoster

    zoster New Member

    I had a very low 25 OH Vit D and normal 1,25 Vit D, supplemented with 4000IU per day and actually my bones and joints really started to hurt more, I became very stiff all over with even more sore muscles. Got my levels up then stopped the supps and the 25 OHD went back down again.

    I am considering Lyme testing.
  5. cfsandlyme

    cfsandlyme New Member

    just thought I'd mention that your dose seems incredibly high.

    I, too, have low vitamin d and have just started treating it with about 500 iu per day.
  6. Slayadragon

    Slayadragon New Member

    I've been perplexed about Vitamin D for a while. Just as many people here seem to feel worse as feel better after taking it.

    My new CFS doctor seems to have put some thought into this and recommended that I take it to boost my immune system. (My levels are below normal, though not terribly so.)

    However, my experience is that whenever I do something substantial to increase the killing of pathogens, I get a herx response as a result.

    This happened when (at this same doctor's suggestion) I increased my intravenous Vitamin C to 50 cc (from 25 cc). I get the same response from doing this as from doxy or similar antibiotics.

    I wouldn't be surprised if Vitamin D did the same thing, especially if taken in high dosages.

    I've decided to take a small amount (5000 units or less) for a while and see how things go.

    I wouldn't be surprised if I needed a whole lot to get my system up to speed though. I now am taking 30-40 g (yes, GRAMS) of Vitamin C orally in addition to the IV's, and it still isn't enough.

    Going back to the IV's: now that I've done the higher-dose ones a few times, they are affecting me a lot less intensely. Hopefully this means that a lot of the pathogens---I think we're talking lyme here---have been killed off.

    With lyme especially, it seems like the saying "no pain, no gain" may have some validity. I've yet to hear of anyone getting better from that without going through at least a bit of hard times.

    I'd rather do it with vitamins than antibiotics if it's possible though.

    I wish we knew more about this!

    [This Message was Edited on 06/18/2008]
  7. AndrewB

    AndrewB New Member

    I take it you've already exhusted the natural sunlight option for Vit D3? 15 min for fair complexions, 30 min for med complexions and 1 hour for dark complexions - twice a week.

    Vitamin D needs to be synthesized at 220 nanomers and Scandium - the twelfth most abundant mineral on the sun - just happens to come at us at 220 nanomers.

    So basically, Vit D3 is produced from sunlight.

    Good luck
  8. Marta608

    Marta608 Member

    I had little apparent result from the 50,000 IU although the numbers increased. It was when I began taking regular supplementation that I felt different/better. I've heard some experts say that the D that's used in the 50,000 prescribed dosage is often not effective. Don't know why.

    You might check with your doctor and try taking 2,000 IU a day for awhile from a health food store and see how you feel. Keep track of your number though with regular blood work.

  9. Leaknits

    Leaknits New Member


    I've heard that people taking a D supplement must also get 10 to 15 minutes of real sunlight daily. Sun somehow activates the D supplement.

    Since my dr won't order up D test because he says he doesn't know if the lab will do it, I've no idea whether I need a D supplement nor which sort, if I really DO need the D in pill form.

    Slapping on my researcher's hat to go find out what "normal" D level is. But: I wonder if normal for people without this d'd is the same as OUR normal??

  10. sunbird76

    sunbird76 New Member

    ...and I mean a lot. At least 30-45 minutes a day, some days much than that. I have CFS and FM and I was taking 2000 IU of D3 a day and my level was not budging from from a 4 after a year of supplementing (my doctor said it was the lowest level she had ever seen). My level is now 20 after 5 months of sunlight nearly every day, plus taking 3000 IU's D3 per day. So getting my level up is a slow process but I think the sun is the key element for me.
  11. mrlondon

    mrlondon Member

    Studies of high levels of 1,25(OH)2D, like that which occurs in hyperthyroidism and sarcoidosis, can block conversion of vitamin D to 25(OH)D. I would suggest having your 1,25(OH)2D tested to see if this is the case. Taking extra calcium with the vitamin D might help in this situation, as the calcium should lower levels of 1,25(OH)2D. You might be having a problem absorbing calcium.

    Or you just might need to take a lot more vitamin D. See:

    <a href="">Vitamin D intake to attain a desired serum 25-hydroxyvitamin D concentration.</a>

    - Mark
  12. Febricula

    Febricula New Member

    My vitamin D went up for a while and now it's falling. I have no idea why. :/

    (I take 2000 IUs a day -- going to raise to 3000 and test again in 3 months).
  13. msSusan

    msSusan Member

    I feel more aching/inflammation(?) when taking even low doses of D. I tried 2,000 mg and felt awful. Even at 1,000mg I didn't feel good.

    I'm now trying 500mg and getting early a.m. sun. My D level was at 9 two months ago so I hope it goes up soon.
    [This Message was Edited on 06/20/2008]
  14. mrlondon

    mrlondon Member

    If you feel bad when taking vitamin D, you might want to get your 1,25(OH)2D levels checked. When people have very low 25(OH)D, if they start taking vitamin D, studies show that it may cause their serum 1,25(OH)2D levels to rise. And if they are high to begin with, it theoretically might make you feel worse. Are you taking enough calcium? Calcium should be taken with vitamin D. It helps to lower 1,25(OH)2D. Some forms of calcium, especially calcium carbonate does constipate, so either take a different form, or just take enough magnesium to offset that effect. - Mark

  15. jsshutt

    jsshutt Member

    Our D,25-Hydroxy tests show only D,25-OH,D3 and D,25-OH D2 and then total D,25

    I couldn't understand the PubMed link article either, can you explain it?