Vitamin D


I have read a lot (on here and independently) about a connection between Vit D deficiency and fibromyalgia so at my last appointment with my Rheumy nurse I asked her to test my Vit D levels to see whether this is the case with me. I have monthly bloods anyway so she reluctantly agreed, although I think she only did to shut me up! Anyway, when I phoned the GP surgery to get the results, they hadn't been done. Questioning my GP as to why, he told me they don't check vit d levels, unless they have been specifically requested by a kidney specialist!! I explained the reason why, and that the rheumy nurse had requested etc and he basically said 'tough!'. The lab won't test them.

Has anyone else in the UK has this problem? Have people self-medicated with Vit D and had results? If so, what doseage? Or does anyone have any ideas how I can get my Vit D levels checked?

Sian x

24 Replies

  • Hi reni73, I was taking Vitamin D some months ago which I got from the health shop. H+B who claimed was very good for Fibro! But I had to stop taking mine as I'm on Warfarin and it interacted with it! Sorry I cannot be of anymore help... Aisha x

  • Hi Aisha,

    Thanks for answering, before you had to stop, did you feel any benefit? X

  • Hi reni73, I suppose I did feel good for awhile. And I was glad to be taking something that was going to help me feel better and I was on it about a month or so but I've been now advised my GP that I'm not to try anything else without seeing her first but she said that the Warfarin is the worst medication that interacts with most things. Health shop can advise you but they usually tell me that I should okay it with my gp, but if your not on much medication then I'm sure you may be ok! One thing I do take even though it doesn't go with the Warfarin but the nurse is aware of it, is Slippery Elm Bark in Capsule form for Ibs and or Cranberry Aloe Vera Juice I take it every time I get a flare up. Good Luck.....Aisha x

  • No way, have you seen this :O

  • OMG i cant believe that.

  • Do you have any symptoms of low vitamin d levels ... Yes people with fibro can have low levels of vitamin d but many don't ... I have had fibro 23 years and my levels have always been fine ... As Aisha says above you can self medicate but then you are in danger of taking a supplement that interacts with your meds or even overdosing on vit d which is not good

    VG x

  • Thanks VG, I think that many of the symptoms of Vit d deficiency and fibro are similar aren't they? So I'm not sure. I do take your point though about it being 'iffy', I think I'm looking for a neat and easy something to blame the fibro on.


  • I don't blame you reni73 that you want something to blame the fibro on! Are you on any medication for your Fibro and does it help you? Aisha x

  • As well as fibro, I have a couple of other auto immune conditions including rheumatoid arthritis. I take so many meds that I rattle when I walk lol, just over 200 tablets a week, plus one injection lol. I take Amitriptyline for fibro, and it does help me sleep a bit better. I take tramadol for pain, which is better than before, but it doesn't take all the pain away. Xx

  • Hi Reni

    My Vit D levels were checked 3yrs ago, at my GP, on request from a rheumy. They were quite low, in the middle of July! So they gave me a prescription, and since then I have been buying OTC from H & B or elsewhere. On a recent visit to the pain clinic, the consultant told me the recommended dose for fibro sufferers is 5000 IU a day, and I should buy them from Amazon! So, as usual, different info from different sources. You pays your money, you takes your choice!

    But I really don't understand how your GP reckons they don't test for Vit D! I'd go back, see a different doc, and ask again.

    Good luck

  • I asked for a test, was found to have low levels, so was given a course of the German imported pure vitamin D. I had to take two a day for ten days and now take it weekly. I am supposed to take the weekly capsule for 8 weeks. I am into the fourth week and although initially felt the pain levels had decreased they are now just as they were before, so I can't say that I have noticed any significant difference

  • TOTAL RUBBISH>>>>>>>>> my doctor told me I was having a blood test for Vit D deficiency and just that. Had the Rhume the next day he also wanted it done, I explained my GP had just requested, so what a load of bull your gp is feeding you.

  • My gp is treating my vd. Having bloods tomorrow then in two months at his request.

  • Have you asked for a med reveiw ... I see you are taking 200 tablets a week .... I am wondering if all those tablets may be interacting in some way and making you feel worse... I have found I don't tolerate many meds so it could be worth while getting. Them all checked out then asking for a vit d test .. If your GP is unhelpful then go and see another at the practice .... Never be afraid to ask when it's our health at stake

    VG x

  • Hi,

    what a shame they did not test you. My rheumy asked for the test for me.



  • Forgot to add that my old GP put it on my notes to follow up and check at intervals but not sure my new GP will follow through.

  • My rheumatologist recommended that I take cod liver oil capsules, which are a natural source of Vit D.

    I didn't have a test beforehand, but I have felt a very definite benefit from taking them.

    Apparently Vit D deficiency is common in the UK because of our low sunshine levels, and these days with people eating less butter and margarine, our intake of Vit D tends to be low.

    I don't think this deficiency is a cause of fibro, but it would aggravate the condition, as a chronic lack causes bone deterioration, and muscular pain.

    Moffy x

  • The simple solution is to take Vit D and see if you feel any better for it.

  • Or Cod Liver Oil because then you have the Omega 3 as well.

  • Or a probiotic multivitamin :)

  • I asked for Vit D test after reading about it on here and the GP did it without a problem my level was low at 21 so it was the right thing to do. My depression is better and I think my pain has improved despite lowering the dose of pain medications which must be better for me in the long run

  • Hi, my endocrinologist asked for the vit D checking, it was really low and so was calcium. Push for it . If you've seen it somewhere print it off. X

  • my gp tested me for it and the result came back that i was low on vit d, so the now give me calsichew. he tol me a will notice a big ghange in my pain but truthfuly i dont feel any ghange.but ask gp for it maybe it will help you.

  • To everyone taking Vit D,, standard Vit D is synthetic, it is said to be very toxic,, like most synthetic things.

    Vit D3 is the more natural form of Vit D the source of D3 is from algae,, this form is not toxic in the way that the synthetic one is.


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