I was wondering if you could give me some advice. I am a 27 year old female. I have hypothyroidism and am on 100mcg of thyroxine per day. I was still symptomatic and came on this forum and was adviced to take sublingual B12. I was taking 5000mcg per day and was feeling better although still very tired. I moved to Cambridge in October for a new job. I decided that I would stop taking B12 for 3 months to see if the symptoms returned and to try and get a formal diagnosis.
At first I was unsymptomatic but now is a different story. The symptoms started with tiredness, pain in every joint and muscle. It can be difficult to get up 2 flights of stairs. The new area is in my fingers and hands. This started about 1 month after stopping the B12. I went to the GP who actually listened and examined where the pain was. She did the usual tests and everything was normal. I did mention B12 but she said that I didn't have tingling in the hands, which I didn't at the time. She has now referred me to a rheumatologist and suspects fybromyalgia. She has also given me codeine for the pain but I hate taking it unless I feel I really have to. I have the consultant appointment on 2nd February.
More symptoms have appeared over time. Tingling/pins & needles in my hands. Brain fog, light headed, nausea. I thought I would order an active B12 test privately and got the results today.
Active B12 151 pmol/l (25.1-165.0)
5 months ago I did have the GP do B12 which was
B12 - 159 (130-800). It was 200 eight months ago.
I was wondering if you could give me any advice on what to do next. The sublingual B12 helped some what but not completely. Do I start taking B12 again or wait and see if by B12 goes down further. Do I go to the Dr and demand tests. She may be unlikely to help now she has referred me. As a 27 year old I feel rubbish and don't think I should be feeling this way. I'm afraid if I get a diagnosis on fybromyalgia they will just keep giving me pain meds which I don't really want to take.
Any advice would be greatly appreciated.