Hello.
My doc thinks I suffer from PBC. Bloodtests showed I had high levels of ggt (185). All other tests are negative. I have been postponing biopsy so my doc can't be sure about my problem. I feel tired all the time and have some mitral valve prolapse symptoms.
Doc prescribed me Ursofalk which I have been taking since the beginning of March. I tested my ggt levels this week and results are back. 75!!! These are the lowest I've ever had. Do you think I suffer from PBC?
Have you tested positive for AMA.
everything else came negative, except for ggt. My doc says that AMA would take some time to come positive, and in some cases pbc pacients are negative for AMA. Does this make sense?
I think you need to be referred to a consultant, PBC can be diagnosed with confidence in people who are AMA or in some cases ANA positive, also ALK Phos levels will be raised. It is possible that you need further evaluation to enable a definitive diagnosis, if it was me I would push for referral to a hepatologist.
donkey, I am being followed by a hepatologist, but all my other tests come back negative, AMA included, bilirubin, alk phos levels too.
You can be asymptomatic with PBC, that is no symptons (ie itching, fatigue the two common ones). And yes, AMA can be negative in PBC though it is said it can become negative after diagnose with taking urso and then become positive again apparently. Mine tested positive in 2010. I presented at the doctor with itching and fatigue at the time, the latter has vanished quite some time ago, just got the night-time itch.
You might also be one of the lucky ones if you do have PBC and it never really surfaces as it can be with some.
I've always been one of these who say, 'If it's not broken, don't fix it' so for me, reading what you put, in that situation, I would be inclined to just continue if you are getting results with urso with regards to the GGT.
I think probably if you have had the AMA test as you state, the other way to go would be via liver biopsy but I have to say that I'd also be one to postpone. My reason being that if one has PBC there is no current cure and urso is the only thing that is taken for it. But if suspected something else then I'd probably be inclined within reason to want to find out more.
I have fatigue and the itching comes and goes. When I started ursofalk the itching increased, but now I don't feel much itching any longer.
I suspect this was med induced, it was caused by paroxetine or diazepam. This is my strong belief.
Do people go on disability with this condition?
I thought the itching I had was worse for the first few months on urso. (I got Urdox as my tablets are 2 per day at 300mgs each.)
It was only the blood results that were showing good results after 2 months on urso back early 2011 that I continued taking urso and of course still do.
do you have pbc peridot?
Any implications taking Ursofalk without food
Acupuncture and Herbs from a chinese Dr Medicine/ naturopath together with Ursofalk
How is pbc diagnosed 
