I am seeing a doctor for the first time about my liver - my GP thinks I may have PBC after very high LFTs - what questions should I be askin

[Cornish]

I have no knowledge of PBC & admit to being very scared. Can you help, please?

[Alaskanbutterfly]

Dont be afraid! LFT alone does not tell if you have PBC you need to see if you have a positive AMA and i also followed up my pos AMA with a liver biopsy and then they sent to mayo for a second opinion lol. What are yopur LFT if you dont mind telling It isnt the end of the world. Keep us posted. Ill be glad to help what little I can ive only known of my PBC a year so I am still learning.

[Hidden]

Hello Cornish.

It is worrying when you see a doctor and then they start doing blood test after blood test to rule certain things out and then you end up having to see a hospital consultant. I remember back in 2010 after my GP exhausted the blood tests he said he could do and after a scan (showed pretty much normal) he sent me off to see the hospital doctor. That took some time - 13wks from referral - but when I finally went, the first consult was pretty standard. Started with a nurse weighing me, blood pressure and I'd to take urine sample in. Then I saw the doctor who asked me questions and then examined my stomach area, checked my legs and hands and looked in my eyes. He then mentioned he was going to do a specialised blood test to check for antibodies. Said AMA and ANA. I then asked if it was to check for PBC and he asked me if I'd heard of it.

Told him I'd stumbled across it months previously but wasn't sure as I'd only itching and fatigue plus the abnormal LFTs (and the odd full blood count too (FBC)).

A nurse took the bloods that morning and then I got a call about 6wks later from my GP requesting I go in and see him as he wanted to write a script for meds. Was informed I had PBC on 3rd Dec 2010.

For me it was pretty much a simple diagnosis. Due to my symptons, LFTs and the positive AMAs (my ANA was negative) I got informed I'd PBC. Sometimes you may be asked to have a biopsy if questionable. I live in England and it's not the norm to have one if you are informed you have PBC like it appears to be so in America.

It takes some time if you are informed you have PBC to accept it. For me I had that heads up in wondering if I had prior to diagnose. I resolved myself that regardless I'd try to get on with life as best as I could as there was nothing I could do about it if I had.

Been a long haul over the last 3yrs but I've got through pretty much ok. I lost the feeling of being fatigue quite some time ago but still have the itch. I only tend to itch at night. Last night I had a good night, went to bed, only woke one so sort of got over the itch last night so-to-speak. If I can continue as I have been doing I should be ok. My LFTs aren't back to normal but they are apparently within a normal range for someone with PBC.

You need to look after yourself even better than you thought you were prior to diagnose if you are diagnosed with PBC. I do think it stands for something.

I have requested my blood results in print-out since I got informed I had PBC. I then can see for myself as a receptionist or even doctor just saying a results has come in 'lower' can not mean much. I don't get paranoid about the results at all, just glance, take a note of a few and then file them away.

[GrittyReads]

Hi Cornish,

If you are in the UK then have a look at, and even get in touch with or join the PBC Foundation, and the British Liver Trust. I'd also have a good read through many of the questions and answers on here, as you will pick up a lot of info. As Alaskan Butterfly says, you may not have PBC, as unusual lfts can be caused by other reasons. The PBC F's booklet states that at least 2 out of 3 criteria need to be met for a positive diagnosis of PBC, that is: high lfts, testing positive for antimitochondrial antibodies (+amas), and a liver biopsy (although there is another test that I only heard of a few days ago, a sort of magnetic resonance scan, I think, which may be as good as a biopsy but less risky, yet better than an ultrasound scan).

What exactly is your GP proposing, do you mean he/she is sending you to see a consultant?

There are many other simple sites online that can give you straightforward accounts of the symptoms etc. associated with PBC (look for new sites, from reputable sources: both PBC F online and the NHS and BLT give brief outlines), so that you can think if you have any other symptoms. If you are going to see a consultant, take someone you trust with you, and go through it all with them first, so they can remind you of any questions you forget. Have them written down and also write down the answers - and be sure you understand, don't be overawed. They should also ask you about your previous medical history and family history (nobody asked me about this, and yet none ever had liver problems) so ask family about this.

Try not to worry. Most people who do have PBC, lead a normal, happy life, and reach a normal, happy old age. NB Are you actually in Cornwall? I'm in Devon.

[Cornish]

Thank you to all who replied to my question. I already have Behcets Disease & have had for twenty years. I was sixty last year & everything started to go wrong healthwise!!

The last two being awaiting hip replacement & now the liver. My GP thinks this is possible after numerous blood test & ultrascan. I am to see a liver specialist on 23rd Dec. All I know is my LFTs are 'very high'. Just wanted to know what to expect really.

Hope you all have a good Christmas. Thanks once again. Xx