Wondering..

[Dawnmarieg]

I was diagnosed with PBC in 2010 only from having found ama in my blood. I have read a few things that state there should be more than only one indication to positively verify it it truly PBC. I have no other indications. All my LFTs have been great since then and I never had a biopsy because of my weight but drs did do a fibrosure blood test last year and there was no damage at that time. Is it possible I don't really have PBC? Why would I have ama in my blood?

[Hidden]

Hello Dawnmarieg.

I am no doctor but can only refer to my own experience here and of what I understand of PBC. Back in early 2010 I started to itch. 2 weeks later I had had enough of the seemingly 24hrs a day itching so went to see my GP. (I am in the UK.) He asked the usual questions and thought maybe allergy. He recommended antihistamines but said that I had to return for blood tests. Itching persisted. I had bloods done and it was found my liver function test (LFTs for short) were higher than normal. this started the ball rolling for him to check other blood tests to rule things out (ie Wilson's Disease for one, this is copper overload). Everything turned up negative but he did one that determined whether it was bone or liver related as we can have higher than normal (or elevated as the terminology can be) LFTs with both. He determined liver so I had a scan that showed up pretty much normal looking organs.

Itch continued and then I had an appointment at the local hospital Hepatology Clinic and that day the consultant said he was going to do some special blood tests that were antibodies. He did the ANAs and the AMAs as I got the results at a later date. Due to the itching (and at the time fatigue) plus the abnormal and still slowly climbing LFTs due to it being found I had the AMAs in a high titre (measure) he determined I had PBC and diagnosed as so so I started on urso December 2010. (My ANAs check were negative.)

Now apparently one can have AMAs and have PBC but they can be asymptomatic that is without symptons of this liver condition. In this case I expect bloods are monitored at intervals for any future changes.

Usually if there is a doubt as to diagnosis then biopsy is usually performed as that can determine PBC due to cell changes throughout the liver.

From what I understand the AMAs can fluctuate even in symptomatic PBC as can the LFTs which can actually return to normal once taking urso (mine haven't but they did start to come down faster at first than later on). I've never ha d a recheck of the AMAs but some on tnis site they have and it seems that they can vary greatly from their original or previous readings.

You owe it to yourself now to look after yourself as best as you can just in case your LFTs start to go over the normal range in future. But you could well be one of the fortunate ones who never go on to have a problem with PBC. If I didn't itch I'd not know I had PBC. Granted my skin has gone darker over the last 6yrs., considerably more when it is summer that seems a bonus as I look tanned but it is a factor down to having PBC and liver-related. (I've never had lily white skin anyway, it has always gone a good tan in the sun.)

[DPcpa]

I had positive AMA in 1999 but was only dx in early this year (2016) when my liver function tests went crazy after a blood transfusion. I asked the hepatologist if they should have dx in 1999 he said no as positive AMA is not conclusive enough. I am still asymptomatic (no itching etc) and my liver function tests have come down almost to normal after 5 weeks of urso. Another check is coming up the first of sept so I'll see but I was told I may be a lucky one that has a benign case (I am still stage 0/1 from a bx)

[GrittyReads]

Hi Dawnmarieg,

I have a high-ish level of AMA (M2) ... [M2 is one of the sub-types of AMA. The different sub-types of AMA are linked to different autoimmune conditions, and the M2 is the type typical of PBC] ... but my liver function tests have always been perfect, and I do not have any of the common symptoms for PBC. I was first told of the AMAs about 24 years ago, but nothing was mentioned of PBC, and I just had lfts every year, all perfect, until I was told to stop after 12 years, as I would never get anything. About 8+ years ago, a new-to-me GP had me tested for AMAs when I mentioned them, she then panicked and sent me to a liver specialist who told me I was 'fine' but just to carry on with the LFTS every year, in case anything developed. However, when his letter arrived he had diagnosed me as having: 'pre-symptomatic PBC'. This was a shock, especially when I found out that my usual travel insurance company would not cover me - even the mention of PBC was taboo for them. When I found out more about this sorry mess ... took over 7 years (I didn't know the 'PBC Foundation' existed for much of that time) I discovered that (formally, officially) this 'pre-symptomatic PBC' does not exist as a recognised diagnosis.

I eventually contacted one of the UK's leading PBC Specialists, and he was kind enough to answer my email, to tell me that to be fully diagnosed with PBC, then (formally, officially) to confirm with UK/Eu/US diagnostic guidelines, two out of three 'diagnostic criteria' (not symptoms! symptoms are different and you cannot, should not, be diagnosed with PBC purely on symptoms) ... have to be present.

They are:

1) presence of AMAs, and/or:

2) abnormalities typical of PBC when lfts are tested, and/or:

3) a liver biopsy that shows damage, typical of PBC, to some the many, many, microscopic biliary tubules in the liver (not to be confused with the large bile duct).

So: 1) and 2) together are enough for a diagnosis of PBC, especially if symptoms (Itching, fatigue, joint pains, brain fog) are present.

If 2) (the lfts) are abnormal, and symptoms are present, that will probably be enough for a diagnosis , as 5% of people don't have AMAs - but a biopsy might be offered to be sure.

If only AMAs are present, then that alone is not enough for a diagnosis of PBC, and lfts should be continued, for life if necessary: again a biopsy is an option for confirmation, especially if symptoms develop. However, some people - eg 'Me' and at lest 5 others on this site - just have AMAs in their blood. Blood donor records suggest that about 10% of the population have AMAs, with no illness, though conditons may develop.

I went to see the PBC Consultant, and after extensive tests and consultations he has reversed my diagnosis, so now I just have lfts every year. He also checked out my medical history in detail, and asked about family histories - these should be checked by your consultant. Also, as AMAs can be of different sub-types, you should be checked for all possible other autoimmune and liver conditions: eg lupus, sjogrens syndrome, and others.

I've been known to have AMAs for over 24 years now, and still have no signs or symptoms of PBC, tho' I still have annual lfts, and I may still get it - I'm 60.

Hope this helps, sorry it's so long.

Take care,

Gritty

[Becca75]

I don't know. Mine was diagnosed through a liver biopsy as "unequivocally" PBC. You should talk to you doctor if you're doubting your diagnosis. Are you having any symptoms?