Specialist recommendations in U.K. - PBC Foundation

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Specialist recommendations in U.K.

sylviaj profile image
13 Replies

Hi, I have recently had blood test showing my ALP at 570 and a positive AMA with a titre of 1:160 my go has referred me to a gastro/hepatologist locally but has not given any diagnosis, I am assuming PBC given results and wanted to find out which specialist in pbc you guys would recommend. I live in London but happy to travel any where in U.K. If someone is seeing an expert.

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sylviaj
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13 Replies
Shulsey profile image
Shulsey

I live in the States but a heptologist is more on the up & up of PBC vs a GI.

sylviaj profile image
sylviaj in reply to Shulsey

Thanks shulsey, my initial consult is with a gastro who also specialises in liver but if he doesn't seem that up on pbc id like to find someone who has a keen interest.

PBCRobert profile image
PBCRobertPartner

Centres of excellence in London would be Kings College and Royal Free. Both have great expertise on PBC.

Yours,

Robert.

sylviaj profile image
sylviaj in reply to PBCRobert

Cheers Robert, I have looked at kings colleges and tried to get my gp's to refer there but it all became so complicated for the secretary I told her not to worry. Is there a particular consultant there that you have seen or recommend? It's a bit easier if you have a name to get referred to.

PBCRobert profile image
PBCRobertPartner in reply to sylviaj

I have no idea what is complicated about it. Feel free to PM me.

GrittyReads profile image
GrittyReads

I live in Devon, but went to see a leading PBC Hepatologist at Queen Elizabeth's Hospital, Birmingham. My GP just wrote to the Consultant and I got a letter with an appointment. I'd actually emailed him myself, earlier (as my condition is a bit odd) and he had emailed back. I don't see why your GP practice should have a problem, but maybe get the name of one actual specialist to contact, so do send Robert a 'Private message'.

Hope all goes well.

cavi profile image
cavi in reply to GrittyReads

Hi GrittyReads what was the name of the Consultant you seen at the Q E i go on the 24 th August no idea who i will see x

GrittyReads profile image
GrittyReads in reply to cavi

Hi cavi,

I've sent you a Private Message, with name and various thoughts. hope you get sorted soon.

GrittyReads profile image
GrittyReads in reply to cavi

Sorry Cavi .. Some of the 'PM' I've sent isn't really relevant, as I've only just realised that it wasn't you who sent the original message, so I've answered you with some refs to the post from sylviaj. Doh! I knew I wasn't feeling okay, today.

Take care. Nb Another leading PBCer at QE is Prof Neuberger who is often in 'Bear Facts'

drewh profile image
drewh

Good luck silvaj. You should be okay in London. Cambridge and Newcastle are also main research centres with the latest in treatments possible.

sylviaj profile image
sylviaj in reply to drewh

Thanks drewh, I'll check out Cambridge as well

Biddyb profile image
Biddyb

Hi Sylviaj where do you live in the UK I am near Huddersfield West Yorkshire and have recently well 10 months ago been referred by my request from Halifax to seeing an Heptalogist in Manchester who is extremely helpful. You have every right to ask to be referred to another consultant as you probably know, I found mine via British Liver Foundation send them an email and they will give you advice. Good luck

sylviaj profile image
sylviaj in reply to Biddyb

Thanks biddyb, I'm in London, so going to try kings cross, they seem to have some good consultants there. Just want to get confirmed diagnosis from my local hospital, then I'll ask for referral there .

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