Hi ive been to see my consultant today, and now feel a bit worried my ALT are raised to 74 and ALP are raised to 227 and also been told I have to go for another scan. The thing is he never exp;ained things how bad i am getting ect. He wasnt my usual consultant and the last time I saw my usual consultant which was six months ago said I would probably be on the donor list in the next 5 years so not feeling the best.
Can anybody put any light back
if you are in the UK go back to your GP and see if he/she has had any communications from the hospital which could shed some light on your condition, at the very least your GP can translate the blood results for you.
best wishes
Thank you very much for your reply I think I maybe just overthinking things
Hi Alison,
If you are in the UK you could go to your GP and they can access you hospital results, also the consultant should have written to your GP. Those blood results are not too high. Consultants sometimes say things that are not always true. When I first returned to the UK after living abroad for some years i saw a gastro. I had all my blood results plus scans with me, so I knew where I was with PBC and when i said to the consultant that I would probably die from something else she tutted and said "lets say 10 years". All my bloods in the normal range and no fibrosis on scan. 3 months down the line, she changed her mind and said my prognosis was very good, a reprieve! I now have no confidence in her as a doctor.
Go back to your GP and take someone with you and ask why the consultant had said about transplant list. Its your right. That is quite a shock to hear that.
Good luck and take care.
Caroline
How awful for you to be told that, don't stress over it as it will make you ill, half of them don't know what they are talking about anyway as they have never seen or heard of it before but are not going to let you know that. I think that is really awful for the gastro to say that to you XX
Thank you for your reply, I am just trying to get my head round things 2015 hasn't bee a good year for me health wise, I've just got to look on the bright side and stay positive.
It can depend on the consultant's speciality. A lot of people with liver issues are sent to see GIs, many of whom do not seem to be up-to-date with PBC. Even some liver specialists do not know the latest thinking - I was given an utterly bogus diagnosis by one! which was overturned by a PBC specialist.
Do you have antimitochondrial antibodies (AMAs) ? They are one of the diagnostic criteria for PBC, as well as elevated liver enzymes; but, AMAs are not enough, alone, for a diagnosis of PBC (lots of people have AMAs but never develop PBC); while elevated enzymes can sometimes have other causes ... but it all need checking out.
I would expect you to have an ultrasound scan, and for the monitoring of the enzymes to continue, especially if you don't have AMAs, or if you have other symptoms of liver conditions. Enzymes need to be elevated for 6 months for formal diagnosis, unles they are obviously runaway - which yours are not.
I would follow all the above advice, esp printout of results. Also, talk to the PBC Foundation people (link at the top of the page), and try not to worry: treat yourself, do things you love (except maybe alcohol or fatty foods!) as stress is the worst thing for autoimmune issues. Take care.
Seeing a private specialist. Possible PBC? Advice and questions to ask.
Seeing liver specialist tomorrow
Consultant appointments
Told by consultant that joint pain is nothing to do with pbc !!!!
