How to rule out pbc...is an ama enough?

[Valerie3001]

Hi everyone, I'm new to the forum. I'm very confused about how to definitively diagnose or rule out PBC, and AIH. A recent yearly physical revealed my ALT liver enzymes were at 98. Doctor said it could be anything, including pbc. He ran an AMA antibody test hat came back negative today...and said you don't have autoimmune liver disease (by the way, I am female, middle-aged, and already have another autoimmune disease--Hashimoto's Thyroiditis). I told him that I read that roughly 10 % of individuals may still have pbc despite a negative AMA test. He then said yes but, your ALP is negative, it is just the ALT which was elevated, therefore no biopsy. Is this sufficient, and should other anti-body tests have been done to rule out auto-immune hepatitis.

In nutshell, I'm asking what needs to be done to rule out autoimmune liver disease...all types of it.

Thanks for your help!

Valerie

[Hidden]

Hello Valerie3001.

If you are symptomatic, that is are encountering any of the symptons that come with PBC like itching and/or fatigue, have abnormal and elevating LFTs and also a positively 'high titre' of AMAs then that is enough for diagnosis here in the UK. I presented to my GP early 2010 with itching and at the time fatigue. My LFTs were shown to be abnormal and I then had several more bloods over the following few months, one to deduce whether I had a liver or a bone problems as you can have abnormal LFTs with a bone problem as I was informed at the time. Mine was pointing to liver. I went for an ultrasound that showed my liver and surrounding organs and even bile ducts to be quite normal-looking.

My LFTs continued to climb and in the beginning of November I had the AMA check. I had a 'high titre' of AMAs for diagnosis. At the time some of the LFTs had dropped somewhat naturally but some others remained high. I did reach 600+ with one of them but cannot recall which now. (These days they are not overly-bad but was diagnosed with PBC Dec 2010 and started on urso. These days I am still with the itch but fatigue long since left me.)

I know in your shoes I would have walked away with the results that I was informed of if asymptomatic (that is no symptons you know of) and just cracked on with life. I'd definitely not want PBC. It's said that a lot of us walk around our daily lives not knowing that we have PBC and mroe often than not it is picked up when one becomes symptomatic, usually itching but fatigue is also the other. Some who are inofrmed they have PBC tend to have their LFTs done on the spur for some reason by a doctor and they are informed they are abnormal and it goes from there.

AMAs can be negative in PBC but a doctor tends to follow the LFTs as there are other reasons that some can be abnormal. Medications for other conditions can affect LFTs for instance too.

Might be worth your while asking the doctor if you are worried to do other antibodies checks (my ANA came back normal when I had the AMA) and also maybe request at intervals that you have a recheck of the LFTs. Anyone informed they have PBC who is asymptomatic with normal LFTs are generally rechecked at intervals just to keep an eye on them for any signs of them starting to rise.

I cannot say how AIH is found as I only have PBC that I know of and nothing else and only take urso. I am 50 now, was 46 at diagnosis.

The usual way if a doctor is in any doubt as to a diagnosis is a liver biopsy as that is a definite for PBC due to cell changes but it seems there is a criteria you have to fit for it to be considered.

[Valerie3001 in reply to Hidden]

Thanks Peridot for taking the time to write such a detailed and thoughtful reply. It sounds like you are doing well, and I'm glad the fatigue is gone for you. I'm getting more blood-work and imaging done this Monday, and seeing my doctor this Thursday...I also have many questions for him - thanks to this forum. I live in Canada, so I'm not sure if the diagnostic criteria varies much here, or if the decision to be sent to a liver specialist rests, in some cases, with the particular way a GP interprets results - who may, unfortunately, overlook something. Either way, I'm trying to keep my self informed (with breast cancer and autoimmune diseases present in my immediate family - the onus lies with me to advocate for myself...)

I truly wish you the absolute best,

Valerie

[Hidden in reply to Valerie3001]

Hello again Valerie.

Here in the UK we have the NHS as you have probably heard of. The National Health Service (NHS) was set up before my time and it is taxpayers who fund it and taxpayers who also if in England now pay a small fee for an NHS prescription written by a doctor. We also contribute for NHS fees towards dentists and a few other things too. (Wales and Scotland at present receive NHS prescriptions free for all classes, hence I only mentioned Engaldn where I reside.)

Now back in 2010 my GP started taking blood tests at intervals and I found there is a path that they follow under NHS guidelines. It looks like a sort of maze with yes and no answers and comes to other avenue to explore (ie will a patient go for a certain exploratory hospital test just yet or is there another blood check to be made). I actually managed to find one that led to liver conditions but I doubt I could find it online now. I know for myself after an ultrsound that showed nothing much up at all, after several more blood checks (ie one was for Wilson's Disease which is to do with copper in the system) I was sent to see a doctor within Hepatology at the local hospital. If the AMA check for PBC (I also had ANA at same time and might have been others for auto-immune that I never found out about) had come out negative then I would hve been referred for biopsy. Seems the standard guidelines for a doctor here in the UK under the NHS.

I know in the US it seems that a biopsy is still undertaken even if a patient has the factors giving PBC diagnosis as over in the States a stage seems to be needed whereas in the UK it doesn't seem to occur that way these days (before it was discovred about the AMAs I expect a biopsy would have been the only way). Not sure about Canada or any other country but there might just be someone on here from your way who could contribute.

However silly any questions might seem, I'd certainly throw them a doctor's way as without asking I find that a doctor very rarely fills you in much. Good Luck.

[AIHAnn]

Hi Valerie

I have AIH and last year my hep wondered if I had PBC as well because I had raised ALP. He decided I didn't when I tested negative for AMA and a couple of less common antibodies. So it was the raised ALP that made him think it could be PBC in my case.

For AIH the main antibodies they check for are SMA and ANA. A positive test doesn't mean you have AIH but makes it more likely and they will then do more tests to try and pin it down.

To make it more complicated temporarily raised ALTs are very common in people without any liver disease (or any other disease) at all. So it isn't easy for doctors!

Hope everything goes OK.

Ann