Pbc?

[lauralocks123]

Hi all, so the consultant I met with a few weeks ago thought I had Pbc due to elevated liver functioning AST ALT and ALP. I had a screening done for various antibodies AMA included and all came back negative. I then had a fibroscan done and score was v low at 4.8. I also had an ultrasound done with no gallstones or fat showing on liver. Yet the consultant called me yesterday to say she is going to put me on ursofalk to see if it makes a difference to liver functioning. Says she cannot make any diagnosis as all over avenues of enquiry are clear. I just don't get it. Do I have early Pbc or not?

[Hidden]

Hello lauralocks123.

I do find it odd that consultants make certain assumptions and then don't seem to explain themselves right, to me this is how I see it. When I started itching early 2010 I took myself off to the GP 2 weeks later as it was still with me and of an intense state. The GP did blood tests and then said my liver function test (LFTs) were higher than normal and then from then on he started performing allsorts of blood checks over the months following. I had an ultrasound (found out that it showed everything to appear pretty much normal - the consultant stated when I finally saw him (nearly 9 months from starting to itch) he could make out clear bile ducts on the scan) and then when my outpatient appointment finally arrived, the consultant just said that day after going through my records that he was taking a special blood test that day and then we'd 'go from there'. He never said what for, I asked him as I'd stumbled across PBC myself months prior in a library reference book. He said one was, the AMAs (antibodies) but he was also taking another (I found out later it was ANAs).

I was diagnosed with PBC about 6 weeks later and started on urso. I was found to have a high titre of the AMAs that gave diagnosis due to at t he time 2 symptons, itching and fatigue plus elevated bloods in the liver function test as well as another the GGT.

I've never had a fibroscan only ultrasound.

I only thought the urso as it is known for short was given for PBC treatment but also it was originally designed to treat cholesterol formed gallstones. I know it adds additional bile to our system, the urso being a component which makes up bile acids.

You can have PBC without any AMAs present at the time of checking. They can apparently fluctuate. I did think that usually for a diagnosis of PBC without a liver biopsy that can diagnose PBC due to liver cell changes throughout a patient had to have the 3 factors of symptoms, abnormal bloods and antibodies present.

I cannot say for certain in your case only what I was originally informed when I was diagnosed. My GP did reckon I'd have a liver biopsy but I said I wouldn't. I found out at diagnosis that PBC was new to him and I think I knew more than he did at the time.

I expect your consultant will monitor your bloods to see if the urso makes any difference. It might bring yours back to normal range.

Meanwhile, I'd say take as good care of yourself as possible (seems myself and everyone on this site thought they did pre-PBC diagnosis) but in my opinion, you have an heads up at present as you yourself aren't aware of any symptons (ie itching).

[GrittyReads]

Hi Lauraloks123,

It is possible to have PBC, without having AMAs, but this only happens in about 5% (?) of cases of PBC. However, I would expect your consultant to have absolutely exhausted all avenues of investigation, first: to check for and rule out all possible liver conditions, other possible problems, and also all autoimmune conditions. Has this been done?

Also, do you have any symptoms of PBC: itching, fatigue, muscle and joint pain, digestive problems, etc? Check all these with the advisors at the 'PBC Foundation' who host this site: link at the top of the page. Further, has your consultant checked through your entire medical history properly, as well as checking that of your family? All this needs to be done. And ... is she specifically a Liver Consultant - that would be better than a general Gastro, but a PBC Specialist would be even better. If you are in the UK, under the NHS, you can ask your GP to send you to a different consultant, no charge (except for you maybe covering travel and possible overnight stay) - maybe ask to see a PBC specialist.

Finally, a liver biopsy is the 3rd diagnostic criterion for PBC, after testing for AMAs and Liver blood tests. You could always ask for a biopsy.

Hope this helps, but do talk to the PBC Foundation people, they are great.

[Zelda5 in reply to GrittyReads]

I believe it's what we would call a Specialist!

[Belliver]

Hi, I'm in the US & I am not sure what exactly 'consultant' means, i.e. what kind of doctor is that? From your description of events it does sound like you feel the diagnosis of PBC is unsupported by your test results, hence your confusion. Nothing wrong with a second opinion from a Hepatologist. I have PBC--- I went to a Hepatologist who interpreted the results of tests from the past & ones he ordered; he explained it very clearly to me so that I understood why it was PBC. I encourage you to get that second opinion & while you wait for the appointment, keep a food diary including any & all OTC (over the counter) supplements you are taking, & a very honest alcohol intake record.

Also, did this 'consultant' rule out any of the various Hepatitis diseases,(hep A,B,C,etc), drug induced hepatitis ( reaction to antibiotics, OTC supplements, not street drugs)? I think if you are going to take a drug for the rest of your life, you should feel confident that it is indicated. Best of luck!

PS: don't be shy about asking for the referral

[mollymom]

I am so fortunate to go to a PBC specialist in NYC who is a leading expert on this disease. My Mom was British,I believe consultant means Dr. But our British friends on here would know whether I am correct Good luck

[auntym]

Firstly I was given a liver biopsy but this only showed minor change of uncertain significance back in 2009. It was originally suggested that I might have autoimmune negative cholangiopathy and then this was changed to likely AMA negative PBC. I take Urso and my recent bloods appear to be normal now. My Fibroscan and ultrasound were both fine. I was going for check-ups every six months but they have now put them back to a year.

[lauralocks123]

Thanks for your replies. auntym do you have any symptoms? May I ask what age you are? Thanks,

Laura

[auntym]

Lauralocks123 sorry for the late reply. I only just saw your message! I do not have any symptoms and I am 64.