Vitamin D: I have had a letter today... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Vitamin D


I have had a letter today from the hospital to say that I have low vitamin D levels (even though a letter last week said everything was fine!) My levels are 44.1 and normal levels are 75 - 250 so I am quite a way off normal and need vitamin D tablets from doctor now. Just wondered. If anyone else has/had this and if I could be a part of fibro or just another thing to add to my sick list!

16 Replies

I'm afraid so, low vitamin D is something most of us have , the one's who don't know have not been tested.

Well that's kind of good, at least its not going too become a whole other problem on top of the fibro.

Does this mean I should be getting tested on a regular basis from now on or do I just have a lifetime of taking yet more tablets.

And what sort of things are related to the loow levels? Is it the fatigue and lack of energy?


Hi hjones,

I had my vitamin d level checked a few weeks ago at the rheumatology clinic and my level was 30 and so i have to take a 50,000 IU tablet, of oxybutynin for 14 days, i queried this dose as i thought it rather high but my GP said that it is only a 14day course which they prescribed to patients with low vitamin D and when i have finished this course i have to take sachets of "Cacit D3 500 mg/440 IU for ever. I hope this helps.

I think low vitamin D is another thing that goes with fibromyalgia, but i am not sure but i will find out as i have to go back to the hospital later this month.

Take care

Bonnie Lass

Vitamin D is known as the sunshine vitamin. We need to spend 15 Mins a day in the sunshine without sunscreen to keep our levels up. In the Uk That is problematical due to our lack of sun, especially over the last few years. It helps prevent rickets, and is needed in women to help oesteoporosis. I take a daily vit D tablet. They are ok.

Maybe I should ask my GP to add a test for this onto my regular thyroxine level blood tests? I get so tired during the year keeping up with my studies that I pretty much hibernate over the summer. I have just started taking a multivitamin tablet every day in the hope I can avoid "freshers flu" this year - knocked me out completely for three weeks last year and it took even longer than that before I fully recovered.

hjones in reply to ArctoLindy

It could be worth asking for it. From what I've read on the internet if vitamin D is low is causes problems with bones, muscles and energy levels and of course some of the main things in fibro (well for me) is lack of fatigue, muscle and joint problems. I'm going to go to the chemist this morning to get some tablets incase I can't get into the doctors on monday


my levels are 13 .. Just had bloods taken again ... Usually elevated calcuim go hand in hand with low Vit D .. So you need calcuim levels checked before self perscriping Vit D .. I have had many problems with both because I self perscriped ended up with Hyperparathyroidism with an operation to remove my left parathyriod . Can i suggest a reall good site that explains the link between the two

hjones in reply to aura2

Maybe I'm lucky then as my calcium levels were fine according to the doctor. They didn't sell vitamin D in my local chemist so ill have to wait till monday anyway so I can find out a bit more from the doctor. I will checkout the website, thank you x

Kasha in reply to hjones


I too have just been found to have low Vit D (32) I had read about how low Vit D levels can be present in fybro sufferers so I was taking a supplement from the chemist the problem with that is the RDD is between 400 - 800mg daily, this dose would not have touched my Vit D deficiency so I might as well have saved my money :-( My consultant put me on a 20,000IU tablet once a week for 4 weeks so 80,000IU for the month. so I was taking no where near the correct dose to help my deficiency.

low Vit D levels can cause pain and in particular "bone" pain, the times ive been to my GP and said I feel as though the bones in my legs hurt :-( particularily my shins. She looked at me like Id grown a 2nd head!! now i find low Vit D can cause this very pain.....Good luck with getting it sorted xx

hjones in reply to Kasha

I was talking to a customer in work who used to work in a chemist and she said that due to it being so low the over the counter stuff would be no good so I'm glad I didn't get any now!

I'm getting straight to the doctors on monday morning to get something sorted, just gutted I'm now going to have even more tablets to take but if it gets me sort then I guess I don't have much choice! X

Shirldeanne in reply to hjones

You can buy Vit D from supermarkets also, you don't necessarily need a chemist

Ah my gp is doing a vit D test on me next week..... So hopefully will find some answers x

Wow... I had a Vitamin D test too, it had to be a urine test, done all finicky like.

It came back fine apparently. But, my pain is very bad.

My partner just found a new doctor in town that bulk bills, so i'm going to go there and re take the test. The doctor i'm seeing now really has no idea about fibro, and honestly, I think she doesn't believe in it. I'm sure she thinks i'll be right after i loose weight. I've lost weight before.. and I still had pain. Anywho.. yes.. I have also heard that low vitamin D levels are a symptom of fibro.

Its rather hard to keep up really isn't it? lol... with the fatigue n all.. just which tests ones had and what to do next. Wishing you well! :) xox


I was diagnosed with severe vit D deficiency (my level was 30)

I was prescribed 50,000iu once a week for 8 weeks, the medication was called Ergocalciferol.

It was precribed by the hospital and I could only get the prescription from the hospital pharmacy, as it's only available "off licence" in such high doses.

I had to finish the 8 week course then wait a month before returning to the hospital for a blood test to see if my levels had improved.

I was eventually notified that my levels are near normal limits now.

Now I've been prescribed Calcichew D3 Forte. I presume I shall be on these long term.

I don't think bying vit D from a chemist would be very sucessful in raising vit D levels. The amount you need to raise very low levels is huge and simply isn't available to buy over the counter.

I wonder why vit D deficiency is a common problem among FM sufferers?

I was diagnosed with ME 18 months before my FM diagnosis and I know it is considered a common deficency among ME sufferers, a lot of the info suggests it is due to many ME folks being too ill to go out and spend time in the sunshine. I'm not convinced about that, it wasn't the case for me and there are a lot of people with ME that are not bed bound or house bound.

Can anyone tell me (in layman's/numpty terms! :) why vit D deficiency is a common problem for ME/FM suffers please?


Butterfly54 in reply to Phoebee

I also have a very low count (13 and not coming up) I`m on Ad-Cal.From what I read low Vit D can mimick fibromyalgia.It doe`s seem to go hand in glove with fibro but the companies that sell sun tan lotion have told us never to go in the sun without it.

That is nonsence as you will never get enough from your diet alone.You need half an hour with out screen to benefit.I unfortunately blister in the sun so that what has caused my problems.

It is being found now that a lot of people are lowish in Vit D and prescriptions for supplements hae trebled since Jan this year as apposed to this time last year.

Hugs Butterfly54xxxxx

Thanks for your reply Butterfly,

My Rheumy told me that my Fibro symptoms might improve if my vit D levels were ok, so you are right about low levels maybe mimicking low vit D. My levels are now considered to be normal after the high dose treatment, unfortunately it hasn't made a bit of difference to my symptoms.

With the weather that we have in this country, I doubt there are many folk who don't have a vit D deficiency! :)

P. x

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