I was told I didnt have pbc by my GP when she discovered the positive AMA and normal LFT in August this year. Despite this I was referred to a consultant for further tests and since then I have waited around on nhs lists hoping to see a liver specialist, but with the prospect of a 5 month wait i decided to go private.
Even if I say it myself i was well prepared for the appointment and I am glad I was because if I hadnt have been I think i would have left feeling disappointed.
I now know my AMA titre of 1.1290 is high, I didnt understand the meaning of these results prior to asking the question. I now know I do have pbc but need a biopsy to confirm what stage it is at, given my LFTs are normal I am told it should be very low level. I have stressed the need to bring a forthcoming op to remove gall bladder forward so biopsy can be done same time. I am also going to be given URSO, I had to push this a bit to be honest so I stressed the pbc foundation's desire to see URSO prescribed straight away and got it.
I am also going to have a range of other tests too to rule out coeliac disease and check whether I am absorbing vitamins etc. I am likely to have another LFT,AMA, ANA and Alk Phos test too just to see where things are.
I know the private app brought about some debate as some of you said dont waste your money and some of you said I should run with it. How do I feel now?
Well my questions got answered, all 22 of them. I got the desired outcomes I wanted.
So start URSO asap which wouldnt have happened had I not gone, my biopsy will be done with gall bladder op, in a few months probably and further testing for other things are being arranged.
All feels a bit strange as this has hung over me like a cloud for two months just not knowing what the situation was. I think it will sink in a bit more when I start the URSO and go into hospital for the ops and biopsy.
What I would say is that this site has been a god send, I hadn't even heard of PBC 3 months ago yet alone what an AMA was. I have done so much research that I feel more empowered to deal with this and to challenge health professionals on their own decision making and opinions. I advise you all to do the same,
Well thats my update, I hope that for those of you with positive AMA and normal LFT it will give you some insight into what to expect. Get in touch if there is something you want to ask.