Hello there, apologies for what might be a long post but I'm desperately in need of advice.
I'm 47 yrs Old, in the U.K. and was diagnosed with PBC after biopsy and blood test. Consultant said I've almost certainly had it since 2009 but despite many tests and Drs appts it was never diagnosed. And I've been diagnosed 2 yrs now.
Anyway, on to my prob.
I saw my Consultant once diagnosed, he seemed v blasé about the whole thing and basically said it's only PBC at least it's not AIH and I'm therefore a lucky girl. He put me on Urso, 3 monthly blood tests and yearly appts with him.
Just seen Consultant yesterday, bullet points of meeting...
Said blood tests show I'm stable, v reassuring, but then said it could all change rapidly with liver disease
Said prognosis v good not expecting me to reach end stage liver disease while he's my consultant, but then said he's retiring in 10 yrs and then if I progress "it's some-one else's problem"
I told him I struggle v much with exhaustion and he replied if I look on PBC forum there seems to be a "theme" of people complaining of exhaustion but it's not medically proven that tiredness is part of PBC and people do "seem to think a lot of symptoms are part of PBC, let's just blame it on that...most people with PBC don't have any symptoms and are completely unaware" (really?!)
I told him I'm struggling to lose weight (only a stone, but it's not shifting) I go to gym, eat healthily but no weight loss. I asked him if it's the PBC...his reply " oh yet another symptom of PBC you think?!" Followed by a laugh and a retort of "it's not rocket science, eat less exercise more, it DOES work...for EVERYONE!!"
Told him I'm wanting to return to work (took time out to raise my Autistic son) but concerned about the exhaustion and maybe start back slowly. He replied "well yes, you might get tired but it won't hurt you and certainly has no impact on the PBC.
Only been diagnosed for 2 yrs but he's now doing blood tests every 6 months and seeing me once a year.
Should I be reassured by his offhand blasé attitude that he clearly isn't worried, so I shouldn't be? Or should I be changing consultants? I just don't know?
Sorry once again for v long post and thank you.