What should I ask?

[cclcnal7]

Hi, I need some advice. I've got my first appointment at hospital on 5th May since being diagnosed with PBC (by letter) in February. Does anyone have any advice about what I should ask? It's a little bit daunting and I don't want to sit there not saying much as my mind will go blank. It often does these days. Any help would be much appreciated.

[Jaxter]

Hi Cclcnal7,

I would write down anything that pops into your head from now till then, in my first appointment I had an A4 sheet of questions about plan of action, progression, treatment, stage and other random things that I had seen on here. I also asked them to explain my results.

You will pick up questions by reading posts on the forum and the more you read the more you find everyone's journey is different.

I did ask about my vitamin levels at my last appointment, they were then checked and I was found to be Vit D deficient, I now take a prescribed supplement. 

I also make a note of the answers as I very rarely remember what has been said and ask to get a copy of the letter they send to my surgery too so I can keep a record of the appointment and my blood tests. 

I hope your appointment goes well 

Jxx

[Twinkle26]

Hi I had my first appointment in Feb this year, I waited ages the waiting room was  overflowing and I had a list of things I wanted to ask, when I got in the room I was expecting to be told I definitely had Pbc etc, well by the time I was called in my mind was racing, he said sorry to keep you waiting etc and looked at his computer screen, then said lots about Pbc and the liver, my abnormal bloods and how they were 6 months old ( I waited 6 moths for an appointment). He said about his kids having a cold and how he had caught it he thought, then said I'd like to see you in 3 months and I want to repeat your bloods and I think a scan.

10 minutes later I was back in the waiting room.

It was like I was in a daze and after waiting so long then I as out again with no answers, I was so disappointed and felt let down and back in limbo, I had positive AMA and abnormal bloods, a rash along my arms and legs, itching, fatigue was the reason I went to the GPs not knowing what was wrong?  I was convinced after reading the info that I had Pbc or something like it.

Since then I've had a second appointment and saw a better informed liver specialist and  this time I was determined to ask questions and be heard!

He had the results of my new bloods and scan only showed fatty liver.

He was happy to answer questions and BEST OF ALL I TOOK A LIST OF ALL THE THINGS I HAD GOING WRONG WITH MY BODY.

SO THATS MY ANSWER: TAKE A LIST OF ALL THE THINGS YOU ARE EXPERIENCING SUCH AS ANY RASH OR TIEDNESS, ITCH ETC, NO MATTER HOW IRRELEVANT YOU MAY THINK THEY ARE.

RELAX TAKE A BREATH AND YOUR LIST.

GOOD LUCK X

[GrittyReads]

Have you got copies of all details of any tests, bloods, scans etc that have been done so far, to arrive at your diagnosis?   If not, get copies.  You have a 'right' to have copies of test results and consultant letters from your GP.   There may be a small charge for copying, or a greater charge if they are old.

Also, have you joined the 'PBC Foundation'?  there is a link to their site at the top of this page, and on there you will find more info (the info on many of the general online sites that claim to explain PBC is often old, out-of-date and overly scary, so it's best to start here, or at the PBC F site).   There's also access to a lot more info if you do join, but more importantly,  if you just go to the site you will find email and phone links to talk to their advisors.  You could run your results and/or what you've been told so far by GPs etc, past them.  If you join (it's free) you will get a handbook about PBC that is useful, but just reading what's online may make you feel more aware and give you ammo for questions. 

Out of interest, what has happened so far: what symptoms, tests, results, comments by GP etc?  I don't mean to be prurient, just that PBC can present in different ways, and different GPs/practices seem to have very different takes on this and routes to saying whether you have or have not got PBC.  So it's a bit hard for us to comment accurately as you might be in a completely different place/situation to us.  All of our stories are often very different, so it may not help if we just tell our tale.

Hope this helps.  But come straight back on here, for more info if you want - of me or anyone else who answers you: but I would phone the PBC F and talk to their trained advisors.  Also, just browse this site, eg at the top right, here:  there is a list of similar question to yours, so looking at those and the answers may help ... but I'd still talk to the PBC F.

Take care, hope it goes well on Thursday.

[kingerm]

One I never asked was what stage I'm at but I agree it's best to write it all down and bring it with you. I think we all have so many unanswered questions though and you know doctors are under time pressure so you don't always get satisfaction 

[SmileSun69]

Good morning,  you received a letter saying you were dx with PBC?  Are you in UK or  USA? Also, did you have a liver biopsy done to confirm dx of PBC?  I had very itchy all over skin, elevated liver labs, very low Vitamin D.  At my Liver Specialist appt,  the dr told me, go see your  OBGYN,  get a Dexa Bone Scan, Dentist, Eye dr. With PBC you get dry eyes, dry mouth, dry everywhere.  You need a multi-vitamin to take while on medications such as Imuran and Ursodiol.    What tests have you already have completed besides labs?

Chat soon,

Theresa / Houston Texas (USA)

[cclcnal7]

Thank you everyone. I'm in the UK. I had four heart attacks within 3 days last year. Two weeks later I was rushed in with a raging temperature. My LFT's were deranged (what they said) and was query bialiary sepsis. I was readmitted to the hospital a further twice with the same symptons. Had scans, all clear said I then had fatty liver but needed biopsy. Had that and fibro scan (is that the right word?). Received letter saying no cirrhosis but inflamation around bile ducts an indication of PBC. To discuss at hospital appointment. I have no actual print outs of test results. Just shown a graph of my LFT's going up and down. One confusing thing I have found on a discharge letter from last year says positive EMA, negative EMAM2 therefore unlikely primary biliary Cholangitis. Only found it when checking paperwork. What are EMA's? I thought it was AMA's they looked for. I have joined the PBC foundation and found it very helpful and thankfully through that found this forum. Everyone is so friendly, thank you.

[Becca75]

good question

I didn't ask anything when I was given the diagnosis. I only asked if there was anything I could do (lifestyle wise) that would make a difference - and it was a simple answer "no". (I already don't drink or smoke or anything). She said to lose weight (but not because it would make any difference to my PBC progression - but to avoid health issues due to weight).

[badpiglet]

Hi,

The unexpected thing I found with my first hospital appointment was they get you to fill out a form while you're waiting; past illnesses, operations, symptoms etc and then the consultant didn't even look at it!  That completely threw me off balance and yes, I blanked.  With hindsight the form was not really important (a general one for the whole liver/kidney dept) and not terribly specific, the consultant had most relevant info on his computer and his priority seemed to be more looking at me.

He was closely looking, I assume, to see how healthy I appeared.  Looked at eyes, skin, hands (palms & nails), felt my liver.  Asked about any symptoms.  It went very, very quickly and then out to have bloods taken before going home in a daze.

I'd recommend, if you manage to get a list together of say, 15 questions, that you really prioritise and work out maybe 3 or 4 of your most important concerns because you simply may not have time to ask more or actually be able to take it all in.

Also, because the doctor will be referring to any past blood test results months ago and info given to him by your GP, bear in mind that he may be unaware of any symptoms or problems you have developed recently.  Is there anything you forgot to tell or ask your GP, because it won't be on your records. 

Don't hold back if there's something you feel you would like to be tested when they do the blood tests eg cholesterol, gluten sensitivity, vitamin or mineral levels, thyroid function.  You need to ask the doctor while you're in with him, before you see the nurse to have blood taken.  He'll soon tell you if it's not necessary.

My consultant was friendly and kind but 5-10 minutes does go in a flash!

[badpiglet]

Oh forgot to say, your discharge letter does sound conflicting with other info you've been given based on all the tests and procedures you've had.  That does need clarifying.

Maybe, even if everything else goes out of your mind, ask why you've had one letter saying you have PBC and another saying it is unlikely.

EMA maybe a typo error - not sure, best to check.

As others have said, if you have time now before your appointment, see if you can get a copy of your past blood test results.  If you ask your GP's receptionist at a quiet time of day (or ring up about it first), you may not even have to wait, they might print them out on the spot.

Sounds like you've had a rough time but with luck you may get some answers about your liver issues this week.

[cclcnal7 in reply to badpiglet]

Thanks for replying. My discharge letter was from October last year. It wasn't until I was sorting through paperwork looking for any test results I might have, that I noticed the bit about PBC and it being unlikely. To then have a biopsy and told I do have it is a bit odd. to be honest I didn't think they would find anything so when they did it was a shock. Oh well, I hope we all get answers one day.

[Twinkle26 in reply to cclcnal7]

Hi cclcnal7

 How did your appointment go?

[cclcnal7 in reply to Twinkle26]

It went ok, i got to see my consultant and not just one of her team. I made a list of questions and she answered them for me. She asked me how I was. I said itchy as I was hot. She wanted to know if I understood why I was itchy and if I had googled it. I said I had but that I had found the PBC foundation and through that this forum. She said I should know quite a bit then. Downside, she couldn't explain my blood tests to me as the Internet was playing up. We agreed that I may have already had this for fourteen years. I had a very bad kidney infection then and was hospitalised for eight days. They kept asking me how much I drank as my liver tests kept coming back wrong. I've also had the creeping itch for along time too. My liver is not too bad and I'm at stage one. She prescribed me Urso and said I'll see you in a year. Is that usual? Some people on here are seen more often than that. She was very good and patient but I still felt none the wiser. Basically she didn't tell me anything I hadn't already learnt on here.

[Twinkle26 in reply to cclcnal7]

Yes I felt the same with my first appointment hopping they would tell you something you hadn't read or googled.

I don't know what's usual for this as I've see. It's different for each person.

I'm going to have a liver biopsy soon and will see my specialist in 3 months again, I have urso but they want me to have the biopsy before I stRt them, they said if I can't wait it's ok but the urso will change the results of the biopsy. There's a Pbc meeting in kings cross in June  if your in London.

Take care

Carol

[cclcnal7 in reply to Twinkle26]

I had a biopsy at the beginning of the year. It's not too bad. I found the worst part was having to keep still for quite a while afterwards. Mine was to diagnose the PBC, but I have since discovered on a discharge letter from October 2015 that I am AMA positive but they thought PBC unlikely. They got that wrong then as the biopsy said I do. Unfortunately I don't live anywhere near London I'm in the middle of the country. 

Take care of yourself too and good luck with your biopsy. 

[Twinkle26 in reply to cclcnal7]

Thank you, check with the Pbc foundation as they try to have them all around the country.