I am a 51 year old male and for the second time my Mitochondrial AB, M2 score has been elevated - both times around 30.
The test report says:
"Positive >24.9 and Mitochondrial (M2) Antibodies are found in 90-96% of patients with primary biliary cirrhosis."
I have no symptoms and every other test - LFTs, Bilirubin, sonogram, etc. are all normal.
After the first test, my doctor said "I really doubt you have PBC" and I just saw the second test. I will call him tomorrow, but meantime can anyone shed any light on this for me? I have tried to look it up online, but I am confused.
Does my score indicate I have PBC conclusively? What should my next steps be?
Thanks,
Evan
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EvanB
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Back in early 2010 I started itching intensely. I am a female and at the time I was 46. Had had no other health issues during my adult life except the usual minor complaint.
Took myself off to my GP 2 weeks later and then started having various blood checks over the subsequent months. It was decided that I had a liver issue as opposed to bone, both of which can apparently show above normal range liver function test (LFTs).
I had a normal ultrasound with my liver and surrounding organs plus clear bile ducts as the hospital consultant pointed out when I saw him at the start of November 2010.
The day I saw the consultant he said he was going to take a special blood test that would check for antibodies. These were the ANAs and the AMAs (the anti-mitochondrial antibodies). Being in the UK I just got the diagnosis December 2010 that I tested for a 'high titre' (measure) of the AMAs and had a negative ANA. Due to symptons and the bloods plus a higher than normal GGT which is a blood check in liver disorders (is for liver inflammation) I was informed I had PBC.
From what I can gather you hve to have over a certain measure of the AMAs for diagnosis. But these can fluctuate. I've never asked for an actual figure of my AMAs as it won't make any difference. I am still itching, I do have PBC and still above normal range LFTS and GGT.
Usually if a doctor is in any doubt as to a diagnosis in a liver condition a biopsy tends to be performed. I am in the UK and diagnosis if it can be made without there is no need to have one. I know from this iste it seems that one is performed in the US even if diagnosis is made. I am not convinced of the staging via biopsy but it is a definite for PBC due to cell changes.
Could be that your bloods are monitored as time goes by just to see if your bloods continue to remain normal as they can do regardless.
It took years for my Lft's to elevate -about 18 years whilst having super high levels of AMA. The doctors discharged me from hospital outpatients and my GP just did the odd liver test. When i started having problems, i could tell as i started to feel very ill (i also have other serious autoimmune conditions, so i knew this was different.). AMA can be present in many people who never get the condition, and many people like me take years to develop any issues, it is a very slow progressing condition.
So in answer to your question, it is not a conclusive test, just get your GP to check your LFT'S every 6 months.
Do you mind me asking what other autoimmune issues you have as I'm one of these people who has high AMA levels (320 titre level) for approaching 7 years but no signs of any issues LFT wise. I do however have nerve pain and swelling and bruising (also hair loss) but to date specialists whom I have seen are at a loss as to what is going on . Very recently, following nerve testing, it has been postulated that I have Small Fibre Neuropathy; which can be caused by an underlying autoimmune issue. As such, I'd be interested to hear about your particular experiences and the 'other autoimmune' issues that you have.
I have a titre 1,620, and they have said that they don't test after that, so it could be higher. I have Scleroderma (anti centromere antibody), underactive thyroid (antimicrosomal antibody) and also secondary sjogren's syndrome.
To diagnose my PBC, as my LFT's were elevating, i demanded an appointment with a Hepatologist, as opposed to a gastroenterologist. I am glad that they did, as they had the equipment needed. I had a fibroscan, which showed that i had significant fibrosis of the liver, although they said that it was still in the early stages. I am also IGm antibody pos, which is also another blood test that helps to give a definitive diagnosis of PBC.
There are many different autoimmune conditions, some of which are well known such as Rheumatoid Arthritis, and others which are much rarer such as the Scleroderma that i have. Scleroderma and PBC, are causing me the most problems, alongside my arthritis.
The first thing that sprung to my mind with your symptoms is:
Eosinophilic granulomatosis with polyangiitis, also called Churg-Strauss syndrome, is a type of vasculitis that mainly affects adults aged 30 to 45.
It can cause:
asthma
allergic rhinitis(cold-like symptoms caused by allergies)
a high temperature (fever)
muscle and joint pain
tiredness
loss of appetite and weight loss
It can also affect the nerves, causing weakness, pins and needles or numbness, and it sometimes damages the kidneys or heart muscle. It's usually treated with steroid medication.
The Vasculitis UK website has more information about eosinophilic granulomatosis with polyangiitis.
Thanks for taking the time to respond. Interestingly when I have 'flares' of these nasty symptoms, they seem to be responsive to medication indicating some sort of inflammatory disorder; quite what, we don't yet know.
Hi, I have no other autoimmune diseases that I am aware of. There are some other interesting posts below yours which suggest I might want to see a hematologist for further testing that might show other conditions, but thus far, I am aware of no other issues.
Since I posted I went to see Dr. Odin here in New York City (he is a specialist in PBC). He feels confident I do not have PBC since my Alkaline Phosphatase (ALP) is in normal range and high ALP is necessary for a diagnosis of PBC. I am quite happy with this news, but I am irritated that the note on my blood test was alarming saying:
"Positive >24.9 Mitochondrial (M2) Antibodies are found in 90-96% of patients with primary biliary cirrhosis."
Dr. Odin mentioned two interesting statistics:
1) They did a test in Japan and found that, among those tested, 1/200 people had high AMA
levels.
2) He also said that 40 in 100,000 have PBC. That is 1 in 2,500.
So, with a bit of rough math (VERY ROUGH), I think about 1 in 12 people with high levels of AMA have PBC. For men (since 1 in 10 PBC patients are male) only 1 in 120 men with high AMA levels have PBC.
I wish you, and everyone in this forum, my best wishes.
Evan
Hi Evan
I've had positive AMAs at 320 titre level for over 6 years now with no other problems showing in my blood . I am therefore on a yearly re-call with the gastroenterologist and so far the problems that I am experiencing with my health have not been assigned by any specialist that I have seen to date to liver issues. I believe it is possible to be AMA positive and this not to be PBC related although the stats say that AMA is 95% marker for the disease - so the window for this being a possibility is narrow. Perhaps you and I are either in the pre clinical stage or we have some other autoimmune issue going on, yet to be discovered. Hoping this is helpful. My recommendation would be to ask your GP what they feel the next step, if any should be. One final thing to say, the level of AMA is not thought to be particularly correlated with the stage of liver disease or indeed the severity.
Very interesting. I wish there some indication of exactly what diseases might be associated with elevated MITOCHONDRIAL AB, M2 (other than PBC) and what other tests and/or specialists I should see. I think a next step for me might be to contact the PBC foundation to see if anyone there might know what further testing I should have.
Sorry this is so long, but it is a complex explanation, with facts, not assumptions.
I have had AMAs for over 24 years, with perfect liver function tests (lfts) for all of that time, and no signs or symptoms of PBC whatsoever. There are quite a few other people on here who are also only AMA +ve, and while we need to have annual lfts every year, and to keep a watch on our health for any changes that could mean PBC ... just having AMAs does not mean you have PBC.
Sadly, some of the laboratories that GPs' surgeries use to do blood tests, do not appear to be up to speed on the latest thinking on PBC. My own blood tests came back to my 'new-to-me' GP (this was over 8 years ago) saying that the levels of AMAs meant that I had PBC. Unfortunately this GP had not treated PBC before (it is rare, and lots of GPs never come across it): if I had been seen by another GP in the Surgery - who I now see - I would not have been labelled as PBC. 8 years ago, the first GP sent me to see a general Liver Consultant, who felt I did not have PBC, and said that all my tests, examns, ultrasounds, and liver function tests were perfect. However, he suggested I would develop it, (even though AMAs had first been noted in 1992, with no changes since then) and when his letter eventually arrived it said, in 'diagnosis' that I had: 'pre-symptomatic PBC'. This then panicked me, and caused havoc with insurance companies who took the mere mention of PBC to mean I had it, and insisted on treating me as if I did have PBC, which really annoyed me.
For a while the other GPs just kept telling me to not worry, as I didn't have PBC, and my lfts stayed perfect. However, when I found this website, and discovered others on here who were like me but not diagnosed as PBC - and who had Liver consultants who were PBC experts - they quickly reassured me that I did not have PBC, and that they were diagnosed as just AMA+ve.
I contacted one of their Consultants, and his reply spurred me to ask my GP for a referral to see this person. He has since confirmed I don't have PBC, and says that given my age I will probably never develop it, and if I did, it would be very mild and slow-progressing. He also explained that although AMAs are found in 95% of people with PBC, this just means that 5% of people have PBC without AMAs. AMAs are a strong indicator for PBC, but if they are found, then ... for a formal official diagnosis of PBC - according to UK/US/Eu diagnostic guidelines - there must also be abnormal readings of the lfts, typical of PBC, for over 6 months ... or a liver biopsy that shows the destruction of the tiny biliary tubules in the liver. He
An ultrasound cannot detect and diagnose PBC, it can only rule out some other possible issues, or show large-scale scarring of the liver (which might then lead to a biopsy, especially if the patient has symptoms of PBC). Also, you cannot be diagnosed with PBC because of symptoms, there has to be at least 2 of:
AMAs, and/or: abnormal lfts: and/or a biopsy showing PBC.
Symptoms are a guideline, but even then 2 of the above 3 diagnostic criteria have to be present; the symptoms can often be related to other conditions.
If you have AMAs, you may eventually develop PBC, but AMAs alone do not mean you have it, and the level of the AMAs is also not significant - there has to be abnormal lfts as well, or a biopsy showing PBC.
The PBC Consultant also told me that blood donor statistics indicate that about 10% of the population do test +ve for AMAs, but only about 1.5 - 2.0% of them will go on to develop PBC ... Some people just have AMAs, and even then the specific sub-types of AMA are linked to other conditions. AMA - M2 is the sub-type associated with PBC. He also told me that the original 'pre-symptomatic diagnosis that I had been given, does not 'formally' exist.
I hope this helps: as you can tell: I have strong feelings about just AMAs being used to say we have PBC. Try not to worry.
Great to read - thanks so much for writing. I actually sent the text to my family members who were concerned and it gave us a good picture of where things stand. I do wonder what other diseases might be associated with elevated MITOCHONDRIAL AB, M2 scores?
Glad it helped. I tried to check on a link I have, to a paper about the other AMA sub-types, but it doesn't work now.
From memory, there are 9 different sub-types of AMA, so: AMA - M1; AMA - M2 etc.
AMA- M2 is the one primarily associated with PBC, although a couple of the others also have links to PBC.
However, some of the others (AMA - M8 etc.) are more linked to other specific conditions, such as: AIH (autoimmune hepatitis); or to Lupus; or to syphilis; or to serious type of scleroderma.
I tried hopping around a few other links for AMAs on Google, but few are 'cutting edge' (eg the first one I started reading was from 1986!); plus many mention the existence of the other subtypes, AMAs M1 - M9, but then only talk about AMA - M2 and PBC.
Are you in the UK, and are you seeing a consultant at all? Even when my Gp was convinced I didn't have anything, she sent me to a Liver consultant to be sure, and since then I've seen one of the UK's leading PBC specialists, for reassurance, and to get my PBC-ish diagnosis reversed.
Take care, the best thing is to live healthily: diet, exercise and drink-wise, and to make sure you are having fun, doing things you love, and doing all you can to de-stress.
Thanks also for this reply. I am in New York City. I was not sure of my next steps, but your post sparked a good idea - find a PBC specialist in New York City and get their thoughts. I am seeing an excellent Gastro enterologist but he seems sort of stumped by me and my test results.
I wonder if it would make sense to be tested for the other AMA subtypes? I wonder if they are somehow related and if my M2 score might presage elevations in the other subtypes?
I went to see Dr. Odin here in New York City (he is a specialist in PBC). He feels confident I do not have PBC since my Alkaline Phosphatase (ALP) is in normal range and high ALP is necessary for a diagnosis of PBC.
I guess I'm writing this for anyone going through these posts trying to understand this issue.
From what I understand (and this is secondhand from a laymen) - take a look at the Alkaline Phosphatase (ALP) number on your liver function tests.
I must admit, I've been wondering that, myself. AMA-M2 is the only type that's been mentioned, but I had to ask about that, myself, once I discovered from this site (only a few years ago) that there were different sub-types of AMA.
It seems that UK Labs report back to GP Practices and more or less say: 'High level of AMAs equals PBC'. I did begin to wonder, as I've been talking to someone who is PBC free, also with AMA-M2, but who might have something else.
I hope you find a good PBC person - and it is not exorbitant to see them!
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