Well got the referral, third time lucky! - PBC Foundation

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Well got the referral, third time lucky!

Jo_Br profile image
3 Replies

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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Jo_Br
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3 Replies
butterflyEi profile image
butterflyEi

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

susanburgess profile image
susanburgess

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

58goose profile image
58goose

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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