I've just been refered to a specialist after 2 years of repeatedly high levels of ggt and alp as my GP has said it needs to be investigated. I am 35 years old and not suffering with any other symptoms.
Fast forward to today and ive just checked my patient access and I have a new blood test result for AMA quantitation and the level is 100iu/ml. I was wondering if there was anyone on this site who knows whether this means I am positive for AMA antibodies or if it's a normal reading.
Thanks 🙂
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kirstm85
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Hi there, I was AMA positive October 2019 at a score of 3.6 ...I never knew what that meant except probably pbc ....fast forward to now and I'm still trying to sort out my meds , a good consultant and learning about that AMA result ...My liver enzymes were raised but scans all normal .....take care xx
Thanks for your reply. I hope you get to the point where your meds are finally sorted ans they work for you. I suppose its all a learning process isn't it?
I've got no idea myself. The doctor phoned me before that final blood test came through to say my abnormal liver functions need to be investigates further by a specialist. The doctors called me again the next day about my blood tests and said i need to book an appointment but I thought it was a case of crossed wires and told them I had already spoke to him. Now I'm wondering if they called me because of the AMA test coming back.
I'm really hoping someone on here will he able yo shed some light for me.
I think if your AMA is positive the score doesn’t really make a difference. When mine came back many years ago it read 3.5 positive. Sorry can’t be of more help. There is a webinar on YouTube with Professor hertchfield and dr David Jones which explains a lot about the AMA test.
Always a good idea to call the foundation if you can they are great. I was given the opinion that if you had AMA showing in bloods it was a PBC indicator good luck in this confusing condition
It is a good idea to have this all thoroughly checked out, as it will enable you to understand what's going on: and understanding our various conditions is always a means to being able to act - and yet stay calm and in control.
First: AMAs (antimitochondrial antibodies) can be an indicator of PBC: however, just having AMAs does not mean there is anything wrong! About 8% of the UK population 'just' naturally have AMAs - according to blood donor statistics - but only a tiny minority of these people ever go on to develop PBC. It's been known I have AMAs for over 30 years, but I don't have PBC - or any other liver (or other!) complaints: I'm just a pretty fit and healthy 65-year old! However, I do have to have liver function (blood) tests - every year - just to keep an eye on things. So … you might want to think about asking to be seen by a liver specialist, as the medics dealing with you should know about AMAs.
The fact that the liver enzymes are raised is more significant, although it does depend on which ones and how much. The way forward is definitely to find a really good liver consultant - and preferably one who is a PBC consultant.
NB: Scans of the liver are not much use at an early stage, as they can only spot large-scale liver damage/scarring - which is not likely to be there. PBC is usually diagnosed by liver function tests (lfts) - which are high for the various chemicals that are typical of PBC - 'as well' as the presence of AMAs! But this should have been properly explained to you at the time, as some levels are more important than others. NB: If there is any doubt over a diagnosis, then you would need a liver biopsy - although the vast majority of people with PBC are diagnosed just by abnormal lfts, and the presence of AMAs.
I would talk to the people at the 'PBC Foundation' who host this site, they can help you and put your mind to rest, and explain exactly what the different levels of the different chemicals may mean - see the links to the right of the screen. Plus they may be able to suggest the top PBC specialists in your area.
Sorry to go on, and do take care: I'm sure there is not much to worry about, and even if it is PBC, loads of people with it live perfectly normal, happy, healthy lives once diagnosed and given medication. But please do talk to the PBC Foundation people - see links at right!
I've just spoken to my GP who has said my AMA has come back positive and I'm already being refered to a specialist so I'm thinking I will probably be diagnosed with PBC especially with me having elevated ALP and GGT levels for the last 2 years. Quite a shock for a Monday morning!
Hi there, I’m the same age as you and I’ve been under investigation for maybe 5 years now with positive AMA. Last time I had AMA in a titre of 160 but I’m still not diagnosed by my specialist, it’s been a long road. I’m glad not to have the itch, I developed cholestasis when I was pregnant and was put on medication then but levels went better post natally xx
Thank you for your reply. It's nice to hear from someone who is my age although its not good hearing you still don't have a diagnosis.
What are your LFT's like?
I started with abnormal lft's 2 years ago after a bad ear infection that spread down my face and neck and landed me in hospital. I went to the doctor months later cos I felt constantly tired and weak and my alp and ggt was high. They did an AMA back then which was negative along with scans.
Fast forward to now, I had a baby 5 months ago (Dont know if thats constrinuted to me having a positive ama) and went to the doctors for constant fungal infections. They tested my liver function again which was the same, higher ggt and alp and then the AMA came back positive this time.
I bet its so frustrating being in the dark and noy getting a diagnosis. Have they explained why they havent diagnosed pbc?
I hope I get answers when i finally get to see a specialist.
Hiya, sorry for the late reply (I’ve got a 6 year old and a 2 year old lol). When I started the process I wanted a diagnosis but my feelings have changed over time. My specialist reviewed my very regularly and I knew if I felt symptoms were getting worse I could contact him. I had to take urso when I developed cholestasis in pregnancy, which is the medication they would prescribe for PBC and I don’t feel it’s a coincidence that I gained and struggled to lose a lot of weight, so I’m happy to not take it for as long as possible. I’ve also reached a point mentally where I think ‘I might get it, I might not’. It’s not nice when you think oh no I’ve got it and it’s a life sentence.
My GGT’s are always raised and I have ANA positive and some IG’s and there are other things which are off but some important LFT’s are good. My blood tests have been very up and down over the years. I have arthritis too all over really, and this is another thing I just try to work with now. I’m a full time primary school teacher and single parent so if I’m exhausted, it could just be my lifestyle.
My dr says I have an autoimmune liver condition but he doesn’t formally say PBC and I quite like it to be honest. I’ve got a telephone consultation with him on the 12th and need bloods doing before then and every time I get the feeling of is this going to be when he says it. He says just live your life and if you’re going to get it there’s nothing you can do. That’s really my approach now.
I know it’s frustrating though isn’t it and you think just tell me! Xx
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