Hello
I was told I had PBC early November by GP after complaining of aches and pains for years,
I have first appintment with the specialist on Friday ,
Can anyone tell me the best questions to be asking on this visit , GP advises that the gall bladder will need to be removed , I have had underative thyroid for over 15 years and it seems from the blogs I have been reading on this site a lot of other people have asossiated autoimune problems
I woud be grateful for any tips etc you can give me
Hi haventaclue (great name!) welcome to the site. I am not sure I can aadvise you on what to ask I suppose the most important question is what treatment you need to be on if any. You would be best to maybe look through a few of our blogs and questions we have posed to each other and write down any questions you think you would like answers too also and bring them with you to your appointment.. It also may be a good idea to bring someone with you that will listen also as sometimes it can be hard to take in all the info you are given. Best of luck at your appointment, just remember you are not alone.
Thanks for your advice littlemo, I will be taking someone along as my concenration levels are out the window,
I must admit it was a relief to find out that there was a problem as the GPs have been trying to push me into taking antidepresants for so long I just knew there was something wrong with my body .
Just reading these blogs helps enormously, thanks you again for your reply.
Kind regards
Haventaclue
I have it too, but have not been referred to a specialist. Shall look forward to hearing how you get on, so do keep us posted. All the best.
Hello haventaclue.
Please take someone with you to the appointment. My husband came along with me to the first one in Oct 2010. I was somehow expecting that day to know if I had had the AMA test done at the GP surgery prior as I failed to find out the final blood test he had taken before referring me to hospital outpatients.
I got asked allsorts of questions and then was informed the next step was the AMA blood test along with further bloods for recheck.
Although I have always wanted to know what is going on, I found on my first visit to the hospital, despite it being a case of seemingly playing musical chairs (sit down on arrival, then get taken by a nurse to a room where you have the weigh-in, height and blood pressure taken) and then back to the Waiting Area before being called to see the doctor and then sat about again until called for bloods, it wasn't unpleasant.
I did however find the doctor rather arrogant and would probably have said something to him if I'd have had to have gone on my own.
If you are in the UK like I am then I expect from my 2nd hospital visit, you'll have a brief chat with the doctor who will explain a bit more what PBC is (may sound awful but I had stumbled on PBC long before I was diagnosed, never said anything but by my husband listening to the doctor on that particular visit and telling him how PBC could progress, that there is no cure for it and only urso really one can take, made it all the more real to him and he understood it better). You'll also have the routine weigh and blood pressure and then more bloods at that visit and if you are already on urso, it may be known by the time you go how you are starting to respond to it.
Obviously as I only have PBC and at present nothing of anymore significane as they are checking out ok currently then I can't respond to your mention of gallbladder but I expect the consultant will have a chat about that whilst you are there.
Good Luck.
If you go onto Liver North website, you can order a DVD which explains PBC, answers questions, ans shows what the consultation with the consultant should be like. I found it invaluable and very reassuring, I watched it with my husband and it gave him understanding of PBC. I was also diagnosed in early November by my GP. On my first consultant visit I was weighed and measured, then I saw consultant, I wrote myself a list of questions I wanted to ask, I was given a prescription for URSO which I collected from the hospital pharmacy. I then had bloods taken, and was given a further appointment for 3 months time. I have gall bladder polyps and am being rescanned in 5 months time, if they are still there I will be having my gallbladder removed. My first appointment was a really positive experience and I came away feeling more settled in my mind, and reassured. All of the staff in the department were really nice, they all did their utmost to make their patients comfortable and put them at ease. Hope all goes well for you on Friday.
Thank you for your responses
I had second lot of bloods done this request came via the hospital but have not been given any medication yet . Can I ask what the AMA test means , A lot of what I read seems like a foreign language , I expect I will soon get to grips , sorry If i sound a bit dumb
ama is the anti mitrochondrial antibody. It is the antibody which is present in about 90-95 % of people who have PBC. It is thought to interfere with the cells in the lining of the bile ducts (I think).
Not everyone who has PBC has this antibody but it is 'normal' for us. You can still be diagnosed with pBC without it, but it is unusual.
The gall bladder thing seems to be quite common. My gp suggested that mine might be removed too - but once the PBC was diagnosed, that idea seemed to disappear
If you look at the PBC foundation literature, on their website, there are some leaflets there which can give you an idea of what might be useful questions
Good luck with your appointment
Just to update I had consultation yesterday, specialist told me that although my bloods showing positive for PBC LFTs are normal .He said in my case he could not comfirm definate diagnosis as he said bits of the jigsaw are missing . More bloods taken at the hospital and firbro scan, cat scan and camera down the throat to be done ,,he will see me again in May
So none the wiser which is a little confusing for me .. my GP had told me I would need my gall bladder removed , when I mentioned this to specialist he just shrugged it off and said 20% of population have gall bladder problems ,I didnt find him very reassuring as when I mention I had looked into PBC foundation website and that the symptoms I had fit with PBC he laughed and said I shouldnt go reading to much on these sites .
Thank you for all your good wishes I will continue reading the blogs
haventaclue -
Curious - is this specialist an "older man"? Some "olders" have no faith in the web and think that it just makes us all paranoid. - For me, the web is what backed up what my Dr. told me, but is language that I could understand. -
Question - why does your GP want you to have your Gall Bladder removed?? That is not a "matter of course" for a PBCer. I have had PBC (diagnosed) since 2007 but didn't have gall bladder surgery until this past June when it was only operating at 2%!. As far as I know most PBCers still have their GB. Somewhere on here I have a post about what I went thru before having the surgery - kinds of tests and such. It may or may not help you. - (I think it under a "Gall Bladder" post.)
Just remember - it is your body and make them prove their reasons before cutting.
Be Blessed.
Hello Tumbleweed
Ah very astute the specialist was an older man.
It was my GP who found out from blood tests that I was showing positive AMA test. he sent me for a scan which was then sent back to GP as at that time I had not yet had appointment with hospital , GP said my gall bladder was full of stones and it would need to be removed . Of course I asked the specialist about this and he looked at me as if I was from another planet and came out with the odd comment.
I will have a look for your gall bladder blog .Thanks for the info
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