Doctor visit

[Lisa15]

Well, I went to see my GP Thursday. My Vit D is really low. So, I am on supplement for at least six months. As for the muscle pain, said to wait and come back in a month to see if the Vit D helps. I am hoping for some relief. Didn't seem too concerned about it. I will have to wait and see what gastro says about raised ALP.

[dianekjs]

If your D is very low, once your serum level is optimal you will most likely need to remain on a maintenance dose indefinitely. You should feel much better once it's up to where it needs to be, and it can often greatly reduce or even eliminate musculoskeletal pain. Make sure your doctor knows that people with autoimmune disease need to aim to keep their serum D in the upper part of the normal range. I have to take 7,000 IU/day to maintain mine at 70 or above. Best of luck, I hope you are feeling better very soon.

[Hidden]

I agree with dianekjs I was on a high dose of 20000iu every 3 days for 3 months, then I was able to take the maintenance dose of 1000iu a day ever since and even at that dose my levels are still only a steady 50. I couldn't beleive how much better the whole body pain was after just a couple of weeks I still get some issues but nothing that stops me living. The dizzyness improved too, although the doctor won't agree to that being due to low vitD but IT went within a couple of weeks.

[butterflyEi]

I have struggled asking my doctor for anything more that my current prescription. On advice from someone close to me I had my Vit D tested privately by Birmingham Hospitals after having been in contact with Better You. My Vit D was adequate (I had only just returned from a sunshine holiday) however I have been taking supplements to get levels up and will continue to take the supplement.

On a recent visit to the GP to follow up on Prof. Neuburger's article in the recent Bear Facts magazine about statins I mentioned some difficulties and so was tested for vitamin B deficiency, 24 hours later the surgery rang to make 6 appointments over the next 2 weeks to bring my levels up and hopefully reverse the tingling in the feet and the crawling sensation up the legs and the difficulties in getting going.

As to the results on the rest of the blood tests the GP tells me to stay on the statins but as I have not been able to speak to her I do not know (and am not sure I will be given even on asking) what my numbers were.

I was signed off by the specialist some 6 or 7 years ago back to the care of my surgery. I am probably one of the luckier ones that my PBC was caught early and the Urso keeps it in check even if I do feel that a specialist with an understanding of PBC might be prepared to give me my results which my GP seems reluctant to do.

I will post after the two weeks of Vit B injections and let you know how I am doing.

best wishes

[GrittyReads in reply to butterflyEi]

My understanding is that you have a 'right' to see your results, I believe they have no grounds for refusing. Habitually, I just ask at my GP's reception for copies of the results of all blood (etc) tests the surgery does - and get them, no charge - although you might have to wait for them to check with GP, and pay a search and copying charge, if you ask for older results.

I cannot imagine them withholding any serious info, as if they did, I assume they would be liable if they had not told you things that you might need to tell to others, such as Travel Insurance. If they don't hand over results after a simple request, I would ask in writing, pointing out this need to know. If you are really concerned that they are withholding, then get someone else to witness your actions.

[Hidden]

Hello Lisa15.

If you in the UK it is expected of even healthy people to have lower Vitamin D readings in the winter months due to lack of sun.

I had an on the line reading back in 2011 when mine was checked and the consultant said he wasn't recommending supplements as I did state later 2010 when I first saw him pre-diagnosis that I had never been a sunlover and whilst working full-time I was in work before the sun got going for the day and then finishing when it was going back down.

I did utilise the sun that summer of 2011 after diagnosis and mine was then normal levels. I have since done the same and even though not had a recheck since I feel I am OK.

[teddybear7]

My muscle pain improved since I started vit D. But it seems to be coming back again. They're checking my levels in march again.

[Poppygayle]

Hello Lisa 15

I too suffer from muscle pain and muscle fatigue and have been taking vit d ever since I was diagnosed with pbc 6yrs ago didn't make any difference for me eventually I was diagnosed with a condition called fibromyalgia ,diet and exercise has helped with this and I have learned to listen to my body and act accordingly to my symptoms although i do not find it easy I do hope taking the vit d improves your symptoms !