Just been diagnosed

I'm 34 and have tested positive for AMA with a result of M2 +++. Not sure why I had this test done? I went in about my thyroid problem. I've had an underactice thyroid for about 5 years. Do they test everyone for the problem when they go in about fertility problems. The doctor was testing me for PCOS, which came back positive too. Two for one!

My question is why would they test for AMA?

Also has anyone had experience of pregnancy with PBC I just got married at Christmas and we have been trying for a baby since April. Will this affect me getting pregnant or my pregnancy?

Also if you have AMA does that mean your bile ducts are already inflamed? I haven't been given any medication. I've been referred to the hospital. I'm not displaying any symptoms, I have been feeling really tired but I put that down to my thyroid being underactive again. How do they decide if you need to take the medication, like I said I haven't had any symptoms.

Any advice would be greatly appreciated.

11 Replies

  • quite similiar with my wife's story. She had also since years underactive thyroid and was taking pills to regulate. I don't think PBC would affect the pregnancy but the underactive thyroid certainly does. So far I remember it's important to keep the thyroid hormone in normal levels. It plays some role in getting pregnant and to keep the baby during the first months. During the last few weeks of pregnancy my wife developed so called Colestasis of pregnancy. She was suffering itching, especially nights. So, doctors gave her Urso. But the real therapy was the delivery. After that Itching was gone.

    It's very complex, and every individual has different pattern but some people has common patterns to some extent. So yours and my Wife: Under active thyroid & PBC.

    We don't know now if my wife was already AMA positive before or during the pregnancy. Few months after the Delivery she was complaining about the pain at upper right side. Her internist couldn't get the diagnosis but the next doctor did a blood test and looked at AMA. She was positive (also some livery enyzmes were higher than normal) and since then takes URSO daily.

    I'm not sure that AMA positive means that your bile ducts already inflamed. But I think they check the inflammation with other blood parameters(ALT, AST....)

    Before I forget: In case you get pregnant, make sure to discuss with several experts if you can use Urso or not during the pregnancy

    I wish you all the Best

  • The liver biopsy will tell the stage of the PBC it looks at the inflammation, not everyone gets one but I was advised to I am stage 2 diagnosed in May taking URSO.

  • Just having AMAs - alone - is not enough (formally, officially) for a diagnosis of PBC under current UK/Eu/US medical guidelines. About 10%, plus, of the population have AMAs (blood donor statistics) and yet only 1 - 2% of these will go on to develop PBC.

    However, the presence of AMAs - once noted - is important , and tests must be done to check for PBC and other autoimmune conditions (which are indicated by the different sub-types of AMA - nb the sub-type: AMA-M2, is the one most associated with PBC).

    For a full, formal/medically correct diagnosis of PBC, 2 out of 3 diagnostic criteria must be met:

    1 - abnormal liver function tests (lfts), typical of PBC, over a 6 month period ... and/or:

    2 - the presence of AMAs (M2) ..... and/or:

    3 - a liver biopsy which shows damage, typical of PBC, to the biliary minute tubules [ie: not the large bile duct].

    Both 1 and 2 are normally enough for an official diagnosis of PBC, while 1 or 2 alone would be closely monitored, especially if lfts were high, or if symptoms are present, eg fatigue, itching, muscle and joint pains. If only 1 or 2 are present but with symptoms, a biopsy is usually given.

    NB Ultrasound scans are not enough to diagnose PBC, although large scale scarring can be seen: they are usually used more to rule out other issues: gall bladder, pancreas etc.

    During and following pregnancy the lfts do fluctuate, so testing should continue. As far as I am aware, the crucial thing to be monitored in relation to health are the lft levels, which should be checked every few months in a newly diagnosed PBC sufferer, and then every 6 months. I would make sure your consultant is a hepatologist, rather than a general gastro, and preferably one who has dealt with PBC - always best to see a PBC specialist if you can.

    I was wrongly diagnosed with PBC, but only had/have AMAs. Had them for 24 years and I'm still completely healthy and no PBC at all. I have to have lfts checked every year, as PBC can still develop, but some people just have AMAs. I went to see one of the country's leading PBC consultants to have my PBC diagnosis reversed, as my GPs insisted my bloods were perfect, and AMA alone not enough for diagnosis - NB it is one of the 'stigma' conditions to insurers - many of whom do not understand it.

    There are lots of conditions where millions of people carry the 'factor' for a condition, eg 'Rheumatoid arthritis' but do not yet have it, and may never get it.

    Hope this helps.

  • Thank you so much for replying! You have made more sense of what is going on than my GP and I have had two conversation with him about it. It wasn't clear to me that there had to be the presence of at least two factors to be diagnosed with the condition. I asked him about LFT's and he said that they are normal. So surely that means I only have the markers for the disease and therefore I don't have PBC.

    Thank you for explaining this to me, I feel so much better for having a clearer understanding of how the diagnosis process works.

  • Glad to help! Loads of GPs know very little about PBC, as it is relatively rare, and is a complex condition. If you read around on this site, you will see that people present with all sorts of symptoms, routes to diagnosis, treatment patterns and so on.

    I would before your hospital trip, check on the consultant you are to see - google the hospital website and check the name. As I said, a good Liver specialist is best, even better if they are familiar with PBC, as even hepatologists don't always come across PBC that often. I would also talk to the 'PBC Foundation' as their site contains loads of useful info on PBC (good for getting loved ones up to speed), and their advisors are lovely. Nb They also used to take the attitude that AMA means PBC, but I think they have changed their stance: several of us on here are in the same position, and we all pointed out that we had been told by leading PBC specialists that we don't have PBC.

    However, you do need to be monitored closely, especially if feeling tired, so make sure you are on top of the subject when you see the consultant, and take someone with you for support (get them clued up, too and give them a list of the questions case you forget). Also, write down all questions and worries, and make sure they understand your medical history and any family medical history that you think may be relevant. I was not asked any of this before my bogus diagnosis. If you read around on here you will realise that people are hugely different, but the majority of those diagnosed with PBC are leading full happy lives, and new medications and breakthroughs are in the pipeline.

    Hope this helps. Let us know how you get on.

  • I have sent you a message with some information Jhenderson.

    Hope. It is of help.

    Best wishes

    The PBC Foundation

  • Please could you send me the same information please

  • Hello Daisy1991,

    Of course, i shall send just now for you.

    Best wishes

    The PBC Foundation

  • Thank you

  • You are most welcome Daisy.

    Best wishes

    The PBC Foundation

  • Totally agree with all Gritty has said.

    If someone has one autoimmune condition, the chances of them having other autoimmune conditions is increased. As thyroid conditions are most likely due to autoimmune disease, this along with other health issues you might be experiencing, might have led your doctor to ask the lab to run a group of tests called an autoimmune profile. If this picked up a positive level of mitochondrial antibodies, then the lab would go on automatically to check for the more specific AMA M2 antibodies. At the same time your doctor almost certainly asked for LFT's (liver function tests) to be done. (Note in the UK you can ask for a copy of all your test results if you want them from your doctors receptionist)

    As you haven't got any symptoms of PBC, unless your LFT's indicate a possible problem (which would only be confirmed with repeat blood tests over months), having positive AMA M2 on it's own cannot give you a firm diagnosis of PBC.

    Having positive AMA with no symptoms and normal LFT's does not mean your bile ducts are inflamed. There are quite a few of us in this position and some of us have had positive AMA's for years and years without it ever progressing. If however your LFT's were not quite normal, don't worry unduly as the hospital will repeat the tests your doctor had done and will almost certainly carry on repeating them. The hospital will decide if you have PBC (or not) and then if you need any medication (or not). Although there are a few 'on the ball' doctors, may have a serious lack of knowledge regarding PBC so best to wait for the opinion of your consultant at the hospital.

    Where you are in the world also will affect which tests you have done so the replies on this site may not apply to you. For instance, in the UK, biopsies are not carried out unless the doctors really think it necessary and that the benefits will outweigh the risks of an invasive procedure.

    Do everything you can to relax, eat & live as healthily as you can. Try, try not to worry or dwell on it . Easily said but try. Recommend you don't google or research PBC on the internet as that can worry you senseless. Lots of old, out of date, inaccurate info is out there. PBC Foundation (link at the top of the page) is good. Might be an idea to ask your doctor or hospital to run a check on your vitamin and mineral levels, then if you are out of balance with anything it will show up.

    Pregnancy & PBC? Can't help you but I'd wait for the hospital to confirm PBC before stressing.

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