Initial appointment; advice needed!

[Sallyofthevalley]

After being told on November 4th that my GP that my bloods showed I have a"strong PBC marker" I have my first appointment with hepatology consultant on 19th December. Is there anything particularly which any of you think I should be asking them? Thank you 😃

[Hidden]

Hello Sallyofthevalley.

Early 2010 I started itching intensely. GP started doing blood check after blood check to rule this and that out and July 2010 I went for a scan (appeared to be normal liver and surrounding organs, consultant said he could see clear bile ducts). I was referred to hospital following the scan results and I had 13 weeks before the appt came round.

My GP didn't say he thought I had this or that, just the bloods were showing 'liver-related'.

My first appt at the hospital when it finally came round, consultant asked me questions and then examined my tummy area.

He said he would perform a blood check for antibodies (had AMA and ANA that day) and take from there. My GP had to relay the results to me a month later after the consultant wrote to him telling him to prescribe urso(deoxycholic acid) as I'd PBC.

The only thing I can think of that I asked the consultant that day was dietary. He said to just continue as I was doing, hadn't any concerns re diet.

I did read about PBC in a library ref book several months before hospital visit but didn't mention to my GP. I did hope that I didn't have anything like PBC and in my case I was under the illusion that whatever I was itching for would just go away and it was something and nothing due to my hectic lifestyle at the time.

Anything you might think of that is worrying you or you are puzzled about write down and ask at your appt.

[Sallyofthevalley in reply to Hidden]

Thankyou. So far I have no symptoms, though am tired. But am 52! The PBC marker was discovered during full immune tests/screenings my gp ran after never getting to bottom of health issues over past two years when they'd told me I had ME. Live tests all fine. So all a bit srange....

[Hidden in reply to Sallyofthevalley]

Hello again Sallyofthevalley.

I hope you never develop any itching in the event you have PBC. I've been stuck with it nearly 7yrs. I was 45 when I started itching, 46 at diagnosis and now I am 52, not far off being 53.

Prior to 2010 I hadn't frequented a doctor and I'd not had any prescription meds since 1999 when I was prescribed urso December 2010. 6 years on I still hate taking the 4 tablets daily.

The only consolation I have is that over time the itching altered. I tend to be plagued with it later at night and it is usually known around 11p.m. It vanishes around 6a.m. and then ready to start the cycle again the next day. I call evenings my 'morphing time'! So far I've not had any medications for trying to resolve the itch for a couple of reasons but for me the itch has changed some of my way of life.

Still I live day to day and my motto is that I resolved with myself after diagnosis that I'd crack on with life and deal with things as and when as with this PBC it seems it can be variable between everyone. I'm not doing too bad but I do feel badly let down by the medical profession. I find the GPs I've seen since diagnosis just don't seem to bother that much. But this is another tale.

If your LFTs (liver function test) are normal range then it is all looking good. Mine were higher than normal when I started to itch. Hope you continue to remain that way. I find it interesting reading other PBC patients on here who are having positive results after diagnosis.

[lizagood1]

Hi I first saw my consultant on 4th Nov after being referred by gp with 'an auto immune liver disease' . I was examined thoroughly and asked questions about my parents and siblings, also my symptoms as far as itching (which I've had from my feet for 3 yrs) my AMA was showing negative which she then retested (as well as 6 other bloods taken) she gave me questran for my itching which has relieved it. To be honest I was a little overwhelmed and having no knowledge previously of PBC I didn't really ask any questions. I had liver scan last Friday and the blood results confirmed the PBC. The first consultant was very thorough, the 2nd one wasn't so thorough and admitted being confused about PBC too. I now have to have a dexa scan (bone scan) and to be honest I didn't know what questions to ask except asking her to explain what the tests were for which she did. I've also had another 7 bloods taken which I believe are for other auto immune diseases as now I have PBC it is possible I have other auto immune disease. I think the advice I can give is write down questions you have beforehand and then you are pre armed! This site is most informative I've found, the hardest bit I found is explaining PBC to relatives. Good luck and good health.

[Oidra]

Can you have someone with you? I always had my husband. Firstly I wanted him to understand PBC and secondly you can only take in so much and another pair of ears is a great help when talking things through afterwards.

[Sallyofthevalley in reply to Oidra]

Good idea. Thankyou!

[58goose]

As well as taking a list of questions with you, make sure you have paper and pen for taking things down to look up later. Make sure if you don't understand something that you get them to explain it again - sometimes doctors forget and use medical terms that we don't know. When I was diagnosed my consultant gave me a printout about PBC and details of the PBC Foundation so I was able to find out for myself about things I didn't think to ask at the first appointment and take it all in before I saw him again.