AMA blood work question

[Gbird]

My test given was Anti-Mitochondrial Antibody - results read 1.8 units . I am confused on if this is normal range or not . Mayo's website refers to AMA as Mitochondrial Antibodies(M2), serum  is this the same if so I am positive for PBC. 

[Gioielli5]

Hi Gbird, you are either AMA positive or negative. The level is not as important so you will need to check this. If you are +'ve and have elevated Alkaline Phosphatase levels then you are likely to have PBC. That's what I have been told. 

[Gbird in reply to Gioielli5]

Thank you so much , got these results on Friday afternoon and of course no one to talk until Monday. This helps tremendously. Gbird

[GrittyReads]

Hi Gbird, (sorry this is so long!)

The presence of antimitochondrial antibodies (AMAs) in the blood, is a strong indicator for the possibility of PBC,   and further testing should take place.   But, the presence of AMAs  'alone' - even the presence of the M2 subtype of AMA - is not enough for a formal diagnosis of PBC according to Eu/UK/US  diagnostic guidelines.  Gioielli is right that the level of AMAs is not that important, and that other tests, eg for Alkaline phosphatase (ALP) are also important (= one of the liver functions tests for PBC).

There are different 'sub-types' of the AMA antibody, and different subtypes are associated with different autoimmune conditions.  The sub-type, M2, of AMA is the form most associated with PBC,  but if you do test positive for AMAs (M2 or otherwise), a responsible GP/consultant will do blood tests (and other checks) for all sorts of other autoimmune conditions as well as for PBC.  Even if you were eventually found to have PBC, other autoimmune conditions should be tested for, as the presence of other conditions can be common with PBC - I was tested for everything, under the sun: Sjorgens, Hashimotos (thyroid), Lupus, RA ... even Lymes Disease, as I'd recently had a tick on me after walking on Skye!

However,  for a 'formal / official' diagnosis of PBC,  2 out of 3 of the following diagnostic criteria must be present:*

1 Presence of AMAs  -   and/or:

2 Abnormal 'liver function tests'  (lfts), which are typical of PBC  -  and/or:

3 A biopsy of the liver that reveals damage to the bile ducts, typical of PBC.

PBC is usually diagnosed by the presence of 1  and  2,  although a biopsy may be done to confirm, but this is usually only done if only 1 or 2 is positive, although it may not be done if the lfts are strongly indicative of PBC and the,  'symptoms' of PBC are strong - the most common are fatigue and itching  (some people have PBC without AMAs being present).   PBC should not be diagnosed on symptoms alone; they are a guideline, but the 'official diagnostic criteria' are as above*.  Other liver conditions should also be checked for, particularly as the symptoms are common for other liver issues, and you should be asked about your full medical history and that of your family.    Lfts, should also be monitored over a 6 month period.

If you have got AMAs, but no other diagnostic criteria (or symptoms) for PBC you should have liver function tests every year for the rest of your life, as PBC can develop.  However, I have had AMAs for over 24 years and still do not have PBC, and am otherwise fit and healthy, with no symptoms.  There was an unfortunate period of 7+ years where a 'new-to-me' consultant had diagnosed me with 'pre-symptomatic PBC' which caused havoc with insurance etc, as this 'diagnosis' does not officially exist, and insurance companies would only deal with me by treating me as if I had PBC, even though I then passed all their subsequent questions with flying colours.  I eventually sought a second opinion from one of the countries leading PBC specialists, and had the diagnosis reversed last year.  He told me all the above info, and also explained that tests from blood donors show that far more people have AMAs than the small % that go on to develop PBC.

It is possible you may have PBC, but AMAs alone is not yet enough for a diagnosis.  It depends what else they tested for, or what else is still to be done.  However, PBC is not necessarily terrible - you will see many people on here who have it, but who get on with happy fruitful lives.  The mantra for many is that most with PBC do not die of it, but merely with it, in happy old age. 

I would also talk to the 'PBC Foundation', there is link to their site at the top of this page, and their trained advisors can then be reached via the email links or phone numbers, they are great!

[dianekjs in reply to GrittyReads]

I was going to answer your question, but no need - Grittyreads's and gioielli's explanations were thorough and spot-on. I'll share that I was found to have AMA's in 2013 and still have no sign of PBC either. LFT's are perfect and a biopsy was normal. In my case they wanted the biopsy because of my particular medical history and autoimmune issues, but it is not a routine diagnostic test and generally isn't necessary. 

[GrittyReads in reply to dianekjs]

Hi Dianekjs,

I don't know if I'd registered that you, too, are another AMA only person - but in case I have not already said this:  'Hello, and nice to meet another one!!'  [NB  I often check in here first thing in the morning - reluctant early riser - and then don't remember later, when I've woken up, if  I've read things - or even posted!].  There are several of us on here, and probably 1000s more out there... but they may not know it, if their AMAs have never had to be tested!

Yes, the existence of other autoimmune conditions is one of the things they like to check out.  The consultant I saw last year was the first one, ever, to ask me about that: both for myself and for my parents, etc.

You keep on taking care, and having fun!

[dianekjs in reply to GrittyReads]

Hi Grittyreads, nice to meet you too! I've enjoyed your posts in the past, and hadn't realized you had AMAs without PBC either. And yes - when my liver specialist was running all the tests and kept saying that a positive AMA test was so highly specific for PBC that it was likely only a matter of time before symptoms appeared, I asked him well, what about all those who've never been tested? How do we know what percentage are positive for AMAs and don't go on to develop symptoms? Of course I haven't been in the clear for as long as you so I do worry it may develop at some point - hate to have that hanging over me. I also have a positive ANA, low-positive SCL-70 (scary), and CNS demyelination that looks like MS on MRI, but other things don't fit the picture so it's probably a mimic. ALL of these things showed up at the same time, so I have them scratching their heads. Supposedly, I fulfill the criteria for ASIA - autoimmune syndrome induced by adjuvant. That's wonderful you've remained asymptomatic for so long! Does your AMA level stay the same? 

[badpiglet in reply to dianekjs]

Hi dianekjs, Hi Gritty,

Just to say me too; AMA M2 +ve & no PBC.

I was and still am staggered by the lack of research into our lucky group.  I thought that at the very least, even if there was no funding for a specific study, highly detailed histories (while our minds are still functioning), would be recorded to aid future research.  But no, diddly squat.  Cause & prevention are very much bottom of the pile.

Shame we can't encourage some young ambitious doctor to take history recording on, maybe as a joint effort with the PBC?

[GrittyReads in reply to badpiglet]

Hi Bp,

Hope you are well,  I do keep meaning to email - still not really with it!   But, logging in here, often early, has become routine - even tho' I don't post much, now.  Half wish I could stop, but then I get irate about AMA only folk.

I am seeing the consultant again next month (hopefully ...  tho' it's been cancelled over the year, so I'm obviously not high priority).  It's for a detailed ultrasound and then consultation with him.  He suggested it because it was so long since I'd had a proper scan, and he wanted to put my mind fully at rest.  However, I'm thinking of asking about a special study of us lot, when I see him.

Any thoughts welcome.

Gritty xx

[badpiglet in reply to GrittyReads]

Hi Gritty,

I'm absolutely not with it - rings a loud bell with me.  Definitely muddling, staggering, lurching through life.

Yes, if you could ask him if the lack of study/history recording, is a financial issue or if there is no point medically - if the latter, why?

May think of more to ask but currently brain dead from lack of sleep!

Take care x

[Gbird in reply to GrittyReads]

Thank you So very Much!

[LindyRich in reply to GrittyReads]

Thank you Grittyreads. Your reply has answered questions for me that I didn't know to ask. Clear and understandable.

[Gbird in reply to GrittyReads]

You have been so helpful. The details helped me tremendously . I research my annual blood work in March and my ALk -phos are good (57.3 IU/L)  and my AST and ALT are normal also. I have been tested for Lymes, RA, Sjogrens and was recently diagnosised with Raynauds Syndrome through my neurologist  and Hypothyroidism(GP diagnosed) I have cervical Myleomalacia due to spondylosis . I have been to Mayo and have high copper levels as well. Wilson's Disease was ruled out . Now he is having my GP check for PBC. Thank you so much for your time to explain this to me as well as all the others who replied .  Enjoy your day ! Gbird

[Gbird in reply to GrittyReads]

Thank you so much for all your detail information . This has been tremendously helpful. It's been a long weekend of wondering and anxious to talk to someone. I hate when you receive results on a Friday and can't talk to anyone until Monday. Thanks also for the encouragement!!

Have a great day !

Gbird

[Lorelle09 in reply to GrittyReads]

Your post answered so many of my questions. I enjoyed reading it and thank you for the knowledge passed.

[GrittyReads in reply to Lorelle09]

You are very welcome! I'm so glad it's still helpful.It's been nearly five years since I posted that, and having seen the PBC specialist a 2nd time - shortly after the above posts - I have not given my AMAs and the risk of PBC much thought. I still have annual blood tests for PBC and multiple other (often associated) conditions, but all has been fine - throughout. I'm happy and healthy and enjoying life in rural Devon, although it would be good if this pesky virus were gone. Missing friends, Totnes (and shops), as well as wild walks further afield. Thank goodness for wonderful 'Libraries Unlimited' who run all Devon libraries and have kept us going: also our wonderful Library Reading Group, who now meet on 'Zoom'. Take care all of you PBCers, AMAers, and all at the PBC Foundation - do talk to them if you ever need any help,

cheers, Carole aka GrittyReads, xxx

[Hidden]

Hello Gbird.

You will have to ask our doctor.  I am in the UK and all I got when I was diagnosed on my letter was 'a high titre of antimitochondrial antibodies' that gave the diagnosis with symptons and above normal LFTs (liver function test).

It seems to vary with the readings as in the fact that some of our bloods are abbreviated differently but are the same.  The same goes for the actual numbers, my results over the last 5yrs have had readings in differential figures but they translate to the same.

I cannot say if you have PBC as I am no doctor and I think these t hings are best left to a doctor to give the readings on.

[Gbird]

Peridot, Thank you for your helpful reply. Everybody is so supportive ! 

[loriejw]

What a great read.  Thank you! I am AMA - negative but elevated LFT and  biopsy showed beginnings of liver disease. DX with PBC for over 5 years. Still in stage q thank goodness.   It is true that you can have a normal AMA .. about 15% of us fall into that category.   I have no idea how long or how the disease will progress.  I don't know anyone else near me who has this so this new feed is my only source of community.  I really hope each of you find answers that help you here and continue to support each other.  

[Betonarme]

I think everybody has some AMAs in blood and it's the Level that decides positive or negative....I might be wrong though.

[TeddyC]

Hi, Gbird, GrittyReads, dianekjs, badpiglet, I am also AMA positive but without PBC. I was particularly interested in your reply GeittyReads as I have also received a diagnosis of pre-symptomatic PBC and didn't realise the problems this would cause with regards to insurance etc.

At the time of this diagnosis I was really worried and felt I was sure to develop PBC, however I do have a very sensible GP and he put my mind at rest as he states he has another patient who had this diagnosis and who has remained PBC free for many years.

[Sarah4314]

Ditto, I am AMA m2 positive...it is hard to be at peace even with normal alp because seems like so little is known...but grateful that if we do develop it..we will know early on