Well got the referral, third time lucky!

I saw my GP today, explained the hepatologist has retired. he was as upset as me and now is penning a referral to Addenbrookes and asking for fast track>

massive thanks to Robert at the PBC for giving me the right phrases to use. I had my GP laughing as I said there is no way a gastro man who does not know what PBC is doing a biopsy, it's like asking a tiler to do the electrics!

He agreed that I need a liver unit, I am just hoping its not too long a wait.

Anybody know how long if they have been referred to a liver unit (UK)?

My ALP is now 642 down again in two weeks from the 1,084 originally

Bilirubin down to 8 two weeks ago it was 22.

That is all I know, so whatever I have (still seems to be PBC) Urso seems to be doing its thang!!

I know that I am weeks/months away from getting a diagnosis and the itch is very bothersome as is the fatigue, feel a bit aggrieved that I lost the specialist to a surprise retirement, I will have to get respite for Granny for a lot longer as it's an hour away but at least there will be lots of liver specialists there.

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  • Good Luck Jo_Br I hope you do not have long to wait.

    Good to see your numbers on their way down.

    Looking forward to an update with good news for you.

    best wishes

  • I go to addenbrook they are very good you get a blood test and a ultra sound after years of this every 6 months I now have a fibre scan instead once a year as they don't think I need a 6 month check so stop worrying not every one has the same systems hope this helps

  • I see a 'gastro man' in Kings Lynn and he certainly does know about PBC fortunately! I hope you get your appointment at Addenbrookes soon and get some answers.

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