Advice on what questions to ask consultant gastroenterologist?

[SheepJane]

I was diagnosed with PBC one week and one day ago (feels like a year ago!). This forum has really helped - so thank you. I have been referred to a gastroenterologist (by the consultant who made the diagnosis - a rheumatologist). Are there any specific questions I should ask? I have read about the importance of the different blood test levels - but am feeling confused (this whole diagnosis is so overwhelming!) as to which ones are the most important. Any advice would be most appreciated. The appointment is tomorrow.

[Hidden]

I was diagnosed by the hospital consultant who took the AMA blood test. On that visit I didn't say overly-much as I had no idea if there was anything up with me though I was aware there was something not right in the liver area due to abnormal LFTs and some blood calculation that informed him it was liver related and not bone (as abnormal LFTs can also relate to the bones).

After my first visit and the diagnose he made via my GP and I returned to see him, he was the one who talked about PBC to myself and my husband (though I had mentioned to him on the first visit was the AMA blood test they were going to do that day for PBC so he said it appeared I'd heard of it). He outlined it, there's no cure, it can lead to transplant and that it is monitored via bloods mainly and the only med available at present is urso.

I asked his opinion on diet as he had already said he was very familiar with PBC and that he gave talks to GPs about it as a lot of them didn't know anything (yet). He said eat what I want and added, 'the liver does like calories'.

If you can ask for a print-out of your blood results. I had mine sent to me at home along with a letter from him saying how I was doing in-between my next return to him. (If any problems after the visit, you should be able to ring his secretary as I did and she kindly sent me the print-out of the results as he only sent me the letter.)

Best thing to do is as I do, write any questions you might have that are bothering you or that you are wondering about and use that list. Or do what I did, take someone along with you, in my case my husband, you then have another set of ears if you find yourself at a temporary loss as can happen.

[SheepJane in reply to Hidden]

Thank you Peridot - that's very helpful. I did, this morning, manage to persuade my husband that I need him to be there and he has now cancelled his meeting. I will ask for a print out of the blood levels. There are so many things worrying me that I don't really know where to start with questions. I guess I will just listen and get my husband to listen too. Thank you for taking the time to respond to my question.

[Hidden]

Hi of the quessheepjane, I was diagnosed in November and saw my consultant in January. I obtained a dvd produced by Liver North, it answered so many andof the questions that I needed answers for, I watched it with my husband, and when I felt ready to tell my adult children I watched it with them, it gave us all comfort and hope, it really helped us at a bleak time. Make sure you adk to see the consultant on your visit and not one of the registrars (nos disrespect intended towards registrars) as your first visit is so important for you.

[WendyMarie in reply to Hidden]

I live in the U.S. & I also received the DVD b y Liver North. I thought it was most helpful. The hepatologist said one thing I have never heard before on this website from anyone, nor had I read it anywhere. He said that less than 5% of PBC patients will ever reach transplant stage. That was very reassuring to me. I was grateful for the info.

[Hidden]

Sorry about spelling errors, very tired as just back from holiday.