I have PBC and some blood disorder called MGUS, I have an enlarged lymph node on my liver, which I have been told is too difficult to access, I see a haematologist for this. I am taking ur so, vit d & calcium and antihistamine for the itch. I have been diagnosed for over a year and have never seen a hepatologist. A recent article said that the patients with the poorest outcomes are seen by gastro clinics!! That's a bit of a worry, I am keen to find out what the difference is.
Thanks
Is it the MGUS which has caused the lymphoma in your liver?
I think a haematologist is probably in the best position to monitor and or treat the lymphoma and MGUS as I think diseases of the lymphatic and or blood are their speciality.
It's the PBC/AIH crossover which needs the input of a hepatologist.
And obviously communication between the the two!
Hello Bevmc
Can you recall where you saw the article?
It was on the PBC foundation Facebook page
Thank you, I would be interested in reading it. I had never heard that those with the poorest outcome see a gastro and think there must be more to the article. However I can't seem to find any reference to it.
I'll have a look for it and give you more details if I can. It was a recent study and made me wonder how many people are seen by a hepatologist as I've never seen one and been diagnosed for just over a year.
Hi again
On the PBC Facebook page there is a link to a study called the abc of PBC. That's the article that references the outcomes.
Thank you found it now, yes I only see a Gastro too but they specialise in liver disease so I am happy with that and think that's normal to see gastro.
Technically a Hepatologist is also a gastro as hepatology is a specialism within gastroenterology, but they do focus on liver diseases rather than the whole digestive tract.
It depends how far you are prepared to travel to see one. Most local hospitals will have a gastro, though not necessarily one who knows much about PBC. For a hepatologist you may, but not always, have to travel to a specialist liver centre probably in a larger town or city.
If you have multiple conditions across different specialisms it can work best to see both specialists in the same hospital or NHS trust as communication between the two would most likely be better than between different NHS trusts.
Yes I would have to travel but not too far, I just wondered what they would do differently. So far I've seen 3 different Gastros who clearly vary in their knowledge, one time I knew more than the doc!! They have cancelled my 6 month appt and have rescheduled for June which will be 10 months since my last gastro, my haematologist is not happy with my liver blood results so I was thinking of asking to see a hepatologist. Have you seen one Bolly?
I don't have the same liver conditions as you Bev, but I was initially referred to the local gastroenterologist. After a few appointments I realised he was out of his depth, so went back to my GP who re-referred me to a hepatologist in a different hospital in a different NHS trust but one who had other patients with the same type of liver disease as me. That went fine, until he left and the hospital were going to run his clinic with a gastro. So I said "no thanks", went back to my GP again. By now, 4 years later, I had been on various support forums and Facebook groups and found out who specialised in autoimmune hepatitis in my area so I asked to be referred to him, lol!
I would recommend going to (a) someone you trust and get on with and (b) ask them how many other PBC patients they treat.
You could get in touch with the PBC Foundation advisors (link to the PBC F site at the top of this page) and ask them where the best hepatologists for PBC are.
Or ... f you say on here roughly where you live (I would put it as a question in a new post, as many will not now look back at this post), then others who check in here will be able to make recommendations, and tell you if you are near to a good Liver/PBC centre. As Bolly so sensibly suggests, you can also look on other liver/support groups.
Nb I don't know what the PBC Foundation policy is about 'naming' hosptials/centres/ and consultants on here. You may need to ask people to pm (private message) you. Some groups on here (eg Endometriosis) are not supposed to put names on.
GrittyReads idea sounds good, why not get in touch with the PBC Foundation.
Questions to ask the Hepatologist
finally heard from gastroenterologist 
Hepatologist called my liver 'recompensated'
CT scan or ultrasound 
