Strongly positive AMA but LFT's normal?????

[Clairetopaz]

Hi guys, here in the South of UK I had some routine bloods which came back with positive AMA.

It took months for me to see the Gastro team who have pointed towards PBC.

The only sign of this disease is the AMA result. I've had 2 ultra sound scans which were 6 months apart with fatty liver result and repeated blood work. I've been told LFTs are normal but AMAs are strongly positive.

I have no itch, fatigue or jaundice.

The only thing I have is pain, especially on my right side.

Any info would be great as I feel somewhat "in the dark"

Thanks

[spoul]

Hi there I do believe that many Pbc sufferers remain symptom free for years sometimes. I was diagnosed after suffering extreme fatigue and itching 15yrs ago and my lft's were grossly abnormal. I guess what your blood tests suggest is that you may develop symptoms in the future at some point but not necessarily. I suppose it's slightly unfortunate that you found out that you have the AMA antibody otherwise you'd have been none the wiser. Try to remain positive and ask your doctors any questions. Take care!

[Hidden in reply to spoul]

I am of that way of thinking, "What you don't know..." spoul but I think nice you know you have something you could perhaps take steps to make things that bit better.

[Oidra]

Have you read the information on the PBC site? It would help you to understand what is going on. PBC is very different in different people and you can have it without having many symptoms.

[Hidden]

Hello Clairetopaz.

Like Spoul stated, with PBC you tend to be asymptomatic for some time before any symptons may surface. I started with the itch back in 2010, that is how it went from there for me. (I was suffering at the time with fatigue but that has long since left me.) I had positive AMAs and abnormal LFTs and also one called the GGT that was too abnormal as expected in the bloods. Scan showed a relatively normal liver and surrounding organs. I was diagnosed Dec 2010 and started urso.

My first hospital appointment took 13 weeks from the GP referral. Further 5/6 to receive diagnosis.

Not sure if you have been given urso as seems it can be a bit scant here but appears that if you are asymptomatic (no symptons) and with normal LFTs then more than likely not.

Apparently the AMAs can fluctuate. If I was to have mine rechecked 3yrs on from diagnosis there may or may not be any present.

PBC is a strange condition in that the progress does vary greatly from one person to another. It can actually slow right down and come to a standstill and may or may not restart up in future but you would always have PBC. (I expect one could only believe PBC to be in a 'temporary' dormant state if the LFTs had got back to normal and remained that way.)

I expect for now you will continue to have repeat bloods at intervals to check that they are still within the normal range but a good thing to say would be to take good care of yourself, even better than you thought you did. Anything we know is of some dominance to the liver (ie painkillers, alcohol, etc) try to cut right back or cease and eat as healthily as possible now you know you have been informed you have PBC.

[GrittyReads]

Hi Clairetopaz,

Sorry about the worry over your diagnosis - it must be confusing. As Oidra says, it's worth looking at the PBC Foundation site, and you can talk to their advisors, as well getting a copy of their handbook - although I've noticed from very old posts on here that maybe some of their respondents consider AMAs alone, to be diagnostic.

My understanding - informally, from one of the leading PBC consultants - is that precise diagnosis would vary in individual cases, and would depend on family history and other variables. My understanding is that while the presence of AMAs is strongly indicative of PBC, it is not - on it's own - strictly diagnostic of PBC. Presence of AMAs should lead to detailed liver function tests, close careful ultrasound scans of the liver - particularly measuring blood flow in and out of key vessels and regions: a biopsy is the ultimate test, although they don't like to do those in the UK.

I am biased, as I have tested +ve for AMAs for over 22 years, yet I have never had symptoms of PBC or had abnormal liver functions tests. It's possible that - maybe - by now, I do have some bile duct damage - and I may find this out soon, as I am about to try to see a consultant to be reassessed. I keep procrastinating ... to gather more info; to decide whether to go back to old consultant, or see a new one; AND ... whether I insist on a biopsy if they want to stick with the existing diagnosis with only the AMAS to go on.

However, it does sound as if you may have more issues going on in your liver that need resolving eg the pain and fatty liver. I advise that you keep on demanding answers, but also find out as much as you can about diet, exercise, and the condition, and the tests etc, so that you can discuss. I'm also shocked at how long your referral took, as mine was only a few weeks based on AMAs being +ve - that was both the first time 22 years ago, and 6 years ago when my new GP re-noticed the AMAs (I'd been told to stop annual liver function blood tests after 12 years as they thought Id' never get anything).

Look through all past questions and discussions on here about AMAs and diagnosis - there were several well-discussed questions only yesterday. However, I would repeat that the presence of AMAs while strongly indicative of PBC is not, on its own, strictly diagnostic. There is a far higher % of people with +ve AMAs than ever develop PBC.

Although 95% of people who actually have full-blown PBC are also found to test +ve for AMAs ... this is not the same as saying that 95% of people with +ve AMAs will get PBC. - it is a fine disctinction, but important.

My GP suggests that if everyone were tested for AMAs (and other autoimmune antibodies) there would be chaos in the NHS - some people just have the antibodies!!

PS You say you are in the South, I'm in Devon, if that's any help.