I recently had a blood test that showed raised AMA levels and my consultant gastroenterologist feels that this shows I have PBC. However, as my liver function tests are normal, he wants to do nothing atm except keep a regular eye on my liver function. I do, however, have other symptoms like fatigue, dry mouth and eyes and pins and needles in my feet. My eyesight has deteriorated a lot over the last year. I have other medical problems and take multiple medications, so its hard to know what's causing what. Should I follow up the other symptoms? If so, how? Should I ask for a referral to a different speciality of consultant?
How should I follow up raised AMA levels? - PBC Foundation
How should I follow up raised AMA levels?
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Purple_Lady
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I'm not a doctor but my understanding is the earlier you start taking urso for pbc the more chance you stand of changing the course of the disease. I'd may be mention this to you consultant next time you see him. I also have dry mouth and eyes and was diagnosed with sicca syndrome (often closely associated with pbc) I'd suggest you ask to see a specialist.
Thanks - what sort of specialist? My current consultant is a gastroenterologist. Do I need to see a hepatologist or someone specialising in autoimmune diseases? And would they be able to perform a test for sicca syndrome?
Hi I saw a immunologist (I think that's right!). They do a test where they put tiny tear collection things in your eyes to test the moisture level in your eyes and whether you have a disorder. Apparently the test to actually confirm sicca is pretty invasive and is not really worth it as there is no cure anyway + if you have pbc then it's pretty much a given it is sicca/sjorgrens as they are closely linked. In terms of treatment I use hydromelose eye drops and salivex chews (available OTC) although the doc did prescribe some other meds (sorry can't remember the name) I never took them because the side effects were pretty unpleasant, although if you are really suffering it may be worth it. My eyes get so dry and irritated sometimes I need steroid drops to reduce inflammation and having a dry mouth is just horrible...
Hello Purple_Lady.
Our of interest, how did you find out you had AMAs? I am in the UK and I presented to my GP with itching and at the time fatigue in 2010 and on checking my LFTs (liver function test) they were found to be abnormal. I had other blood tests to rule out this and that and then a scan (showed everything to be normal).
I finally had the AMA blood test in late 2010 due to the LFTs still slowly rising and I was still itching. (Fatigue for me left sometime 2011.) I didn't have any other symptons associated with PBC (still do not 3yrs on)which I was diagnosed with Dec 2010.
Now normally patients who are diagnosed with PBC and have AMAs but are asyptomatic (no symptons and normal LFTs) often tend to just have the bloods monitored as once you are symptomatic urso is started. This is what I have read and opinions do vary. Personally I can see the logic there myself as being asymptomatic at the time there wouldn't be a major problem and why add a bile component to the system if it is coping fine at the time and the PBC might just never continue to progress?
I think PBC is quite a bizarre thing to have. I'm still trying to figure out how some nights I am notso bad with the itch (that is when I do tend to itch) and others I am not good. I've thought about what I've eaten during the day but it just does not add up. The only thing I can think of is that perhaps I got the balance of fats and bile right as more bile tends to be released after we eat something containing fat.
Did you explain your current symptons to your consultant at all? You are entitled to a second opinion but I'd more than likely ask knowing there is something like PBC and urso why I am not being prescribed urso. Your first line of your question didn't for me clarify whether you have been told you have PBC definitely or whether it could be. Regardless I think you need certain points making clearer and if you are to be monitored for any changes then you need to know what is going to be happening from here on.
Please keep posting.
GrittyReads in reply to
Hi Purple Lady,
Even though the presence of AMAs is one of the main criteria for a diagnosis of PBC, it is possible to test positive for AMAs and not to have PBC. If everyone in the population were tested for AMAs the % of people who would be found to be +ve is far higher than the % who would eventually go on to develop PBC. This is despite the fact that such a large % of people who are found to have PBC also test +ve for AMAs. I have tested +ve for AMAs for 22 years, but - as yet - I do not have PBC. I know I may still develop it, and every time my liver function tests are looming I get scared, depressed and hypochondriacal, but so far I'm still clear and have no symptoms.
Strictly speaking (and I have this - unofficially - from a leading PBC consultant) for an official, recognised, medical diagnosis of PBC you need to have 2 out of 3 of the main diagnostic criteria: that is: test +ve for AMAs, and/or have abnormal liver function tests, and/or have a biopsy that shows clear bile duct damage. For years I had not been told anything about PBC, and just had annual blood tests, so I never (for example) had to tell travel Insurance companies about PBC. 6 years ago, a new consultant (diagnosed) labelled me as 'pre-symptomatic for PBC' and although my condition and situation has not changed one jot, I now have to declare PBC, even though I do not actually, yet, have it. I am soon to start the process of challenging this diagnosis, as it makes life so difficult. Of course I am scared PBC will develop - more so right now as it seems that my potential challenge is 'tempting fate'; but this difference in what consultants say makes me really angry.
Obviously your situation is very different from mine, as you have other conditions that may make it hard to distinguish quite what symptoms are caused by which condition. However, many of the symptoms may be unrelated to PBC, and - speaking for myself - I know that in the last 6 years I do seem to manage to develop a few PBC-like symptoms just before my liver function tests.
Did your gastro consultant take into consideration your other conditions? Has s/he talked to your other consultants? Have you talked over the whole picture with your GP? I know that there are other things that need to be taken into consideration by a consultant, when deciding how to proceed with a patient who tests +ve for AMAs. For example, is there a family history of PBC, or other conditions?; can symptoms from your other conditions be ruled out, and is the gastro person the one to do that, or not? Also, I'm not sure if the titre level of AMAs is relevant, were you told? There is a new (?) type of scan ... an MCPR, or something like that (sorry, I intended to ask for more info from someone on this site, but my phone and internet have been down - I'm in a rural location, cable cut by accident during Council work). Maybe someone else can explain if this scan is a suitable alternative to a biopsy, as they seem reluctant to do a biopsy here in the UK.
I hope some of this helps. Try not to worry, but find out more, chase it up, talk to people - but for facts, not opinions - and if you feel happier, try another consultant, or see the ones for your other conditions. However, if I was you, I wouldn't rush to be diagnosed with something you may not have ... but that's just my opinion.
in reply to GrittyReads
And on another note, as I understand it, even though I have been diagnosed with PBC via symptons and also AMAs it is possible at another point to be rechecked for AMAs and then to have a negative with that at the time.
GrittyReads in reply to
That's really interesting to hear Peridot. Thank you. I didn't know that. As far as I know they don't repeat my AMA test, just do my lfts - but then I have been a bit of an ostrich in the past, and have not bothered asking for my individual lft results, etc. I'm always just happy to be told it's all okay. I must admit that being on this site has radicalised me a lot: both for myself, and for all the others who seem to be getting a raw deal from some (hopefully, only a few) GPs and consultants. I really admire your feisty approach to your condition and especially GPs and Consultants. Thanks again.
in reply to GrittyReads
Hello GrittyReads.
I have not had a recheck for AMAs since my original one later 2010 but I have read that this can and does happen. They can fluctuate. I suppose this must mean that at the time the production of antibodies has gone a bit scant perhaps.
I have it in my mind that if this is to happen the PBC wouldn't be so bad for awhile. I know with PBC it is possible for a patient to have the LFTs return to normal whilst taking urso and then after time lapse and still with normal LFTs you are deemed in some sort of suspended state where the PBC has halted. There are no guarantee it will remain that way or restart but I think just knowing this is a positive as you never know.
JennerLayne in reply to
I also wanted to comment and share that my first (and only) AMA test was positive and my LFTS high, and after my docter strongly insisted I lose weight and go Gluten Free, I lost 44 lbs or approx 3 stone. After 6 months and 3 consecutive blood tests, my LFTs returned to normal. I have not yet been put on URSO, though I am starting to have more digestive issues, liver pain and fatigue. My next visit is in 3 weeks and I am hopeful he will again run my AMA and LFTS to see where they are. I'll keep you posted.
in reply to JennerLayne
Found your reply rather surprising due to stating that you had abnormally high LFTs with a positive AMA and wasn't prescribed urso.
I am interested to find out more after you see a doctor in the very near future.
JennerLayne in reply to
My liver biopsy showed more indications of AIH, though bloodwork pointed entirely to PBC. He was confused as to the best treatment and asked me first to alter my diet due to possible gluten sensitivities to see where my LFTS would land. I am eagerly waiting my appoitment in 3 weeks.
in reply to JennerLayne
Hello againJennerLayne.
I had a blood test for coeliac back in 2010 prior to diagnosis as apparently this can cause abnormal LFTs also. Mine was negative so no gluten-intolerances there.
Did you have this blood test at all?
There are some on this site who have both PBC and AIH but I only have PBC so couldn't comment there on how a consultant comes to that diagnosis. I did however think that having a liver biopsy would have shown PBC present. But saying this the biopsy tends to be only taken from one site but I thought that PBC could be seen in any part of the liver.
Purple_Lady in reply to
Its a bit complicated. I found out I had raised AMAs because my vitamin B12 levels were low (they're now back up to normal) and they ran all sorts of tests to see if they could find out why. My B12 levels were tested because I had an 'acute neurological event' this summer. This turned out to be viral encephalitis, but they did various tests to rule out other causes. I probably got the viral encephalitis because my immune system is stressed by chronic infections and the meds I take. This is because I have internal scarring and bowel adhesions in my abdomen and pelvic area, following a large internal bleed (which became an infected pelvic abscess) after a botched appendectomy. This has left me with severe chronic abdominal pain and recurrent diarrhoea...
...all of which is why its difficult to tell what's causing what. This is especially the case with the dry mouth and fatigue, as they could also be a side-effect to several of the meds I take. I have discussed my symptoms with the gastroenterologist, but he seems to feel that the primary concern is sorting out my abdominal symptoms (no argument there) and that the other things don't need following up on at the moment (which I'm not so sure about). I have also tried talking to my GP, but it's really hard to cover everything in a 10min appointment and we tend to get side-tracked by immediate needs.
The consultant did say that I definitely have PBC - but this was on the basis of the fact that he feels AMA is a sufficiently good predictive test. He did add that this didn't mean I'd necessarily have ever have any problems though. He didn't suggest any other tests - should I ask for these? I did ask the him about starting urso - he said that he didn't think this was necessary, because "the way you tell if urso is working is if your LFTs improve, but yours are normal anyway". I said that I'd read that starting urso while you were still asymptomatic gave the best chance of slowing disease progression. The consultant said that there was a distinction between being asymptomatic (ie not having actual symptoms of the disease such as itchiness) but having abnormal LFTs, in which case you would start urso, and having normal LFTs, in which case you watch and wait.
Sorry for the length of this reply - its just that this is all a bit complicated and confusing (and worrying, of course).
in reply to Purple_Lady
I know that anyone with deficiency in B12 tends to feel tired but that can be with iron deficient anaemia too.
It can be a complex with regards to vitamins and minerals. I have learnt more since developing PBC. Too much calcium can block absorption of iron for eg. I expect when you were informed of the B12 deficiency your HB was a bit lower than normal too as mine was and has been for a few years (but this can be normal in women in particular, the system adjusts). I had mine rechecked Dec last year, the B12 along with folate (folic acid) and ferritin. Mine was due to an on-the-line ferritin reading and I've had a short course of iron tablets.
I am of the thinking that if you have something and in this case PBC then if you are asymptomatic (without symptons of it) and the LFTs are normal then what would be the point in starting urso. I say this as why take a form of bile supplement as I see urso when your system is obviously currently coping adequately AND you may never progress beyond this.
I sincerely hope your PBC remains in this state now you have had a diagnose of it as it is possible to never change. I also thought that if you were with normal LFTs and no symptons it appears that the PBC is seems quite dormant at present. I expect you shall have repeat bloods at intervals in case there are any changes that do develop where PBC will be reassessed.
Hi Purple Lady, my answer will be short and sweet. If you test positive for AMA's, then this is the marker for PBC. If I were in your shoes, I would request going on Ursodeoxycholic Acid as this is the treatment and can slow down progression of PBC. I would rather take it than not, at the end of the day. Ring Collette at The PBC Foundation as I did, she will give you all the advice you need 
Thanks for your suggestion, I will ring Collette.
However, I did ask the consultant about starting on urso - he said that he didn't think this was necessary, because "the way you tell if urso is working is if your LFTs improve, but yours are normal anyway". I said that I'd read that starting urso while you were still asymptomatic gave the best chance of slowing disease progression. The consultant said that there was a distinction between being asymptomatic (ie not having actual symptoms of the disease such as itchiness) but having abnormal LFTs, in which case you would start urso, and having normal LFTs, in which case you watch and wait. I don't want to borrow trouble, its just that I tend to worry...
in reply to Purple_Lady
Have to say that I agree there, if your LFTs are normal,why take urso?
LouWooda in reply to
Hi Peridot. I agree and also disagree. Some Consultants believe that Urso should be started as a matter of course upon diagnosis of PBC as this is the only treatment to slow or even halt progression. I sometimes think "why wait and see if LFT's rise". This could be a case of shutting the stable door after the horse has bolted.
in reply to LouWooda
Interesting theory there but to me that would be a 'just in case' and something that might never happen.
Opinions from the medical profession can vary here. I cannot say regarding the consultant I saw his view as I had itching and also elevated LFTs along with an abnormal GGT.
Which also makes me wonder, if one also had normal GGT reading that would also be another factor.
Given urso is no guarantee that it will work or not and only thought to slow progression due to aiding the digestive system by adding a bile component I also cannot wonder if the system would somehow get used to an addition of bile and somehow alter the production of our own that is naturally produced. This is my way of thinking.
If I had been informed that there was nothing to be given in PBC I'd have still got on with life (I was itching for 9mths prior to being diagnosed with PBC and prescribed urso). Given PBC in my case had been suspected several months before I also have read that in suspected cases starting a patient on urso until diagnosis can be of some significance in rising LFTs but I was never offered any.
My LFT's are reading as normal at the moment, but I am on 1000mg Urso daily. The best thing to do is speak to Collette, that is what I did when I was diagnosed in 2004. Keep a close watch on your LFT's and request Urso at the first sign of elevation.
in reply to LouWooda
I reckon now we are on urso for PBC regardless of our LFTs, even if they reach a normal state again in my case unlike yourself LouWooda we will remain on urso due to the past history we have had from starting urso.
Good to know that your LFTs have returned to normal and that gives me some hope that I could get there eventually (my LFTs did come down but last 18mths they go up slightly from last blood check and then go down further than the last-but-one check, I create a sort of wonky line at the moment if one was to plot on a chart). I was diagnosed in 2010 so only 3 yrs with knowing I had this. Out of interest prior to early 2010 I had no inkling I had something going wrong. Was always so well and energetic and then early 2010 I started itching and it was taken from there.
LouWooda in reply to
It surely is a mystifying disease, Peridot. I was diagnosed by a fluke! I had severe swelling in my joints and extreme fatigue, so was tested for RA as this runs in the family. Negative. I was then extensively tested for Lupus, also negative. I even had one Consultant more or less say it was all in my head! Bloomin' cheek! Then by a complete fluke, or fate, call it what you will, a recently graduated Doctor who had studied PBC for an exam noticed my pos. AMA and suggested further tests, which confirmed PBC. It is such a little known illness that I feel I would still be being tested for this and that ten years on if it hadn't been for that chance meeting with the Grad Doc. How lucky is that?!!!
Hi LouWooda,
I've read your other later replies (below?) and I'm not clear from them if you have ever had raised lfts. Have your lfts varied over time?
I accept that +ve AMA is a significant marker for the likelihood of PBC, but - on the basis of what I was told a few months back by one of the leading PBC consultants it is not 'the' lone marker. The presence of AMAs should result in other tests being done, such as lfts, and other bloods, plus scans and a biopsy if necessary, but the presence of AMAs does not automatically mean that you have PBC and 2 or more criteria have to be met for a full medical diagnosis of PBC. As I said above to Purple Lady, I have tested +ve for AMAs for over 22 years and despite having gone through the full battery of tests a couple of times in that period, and having lfts done every year, I have never had any other indications of PBC: lfts have alaways always clear and no symptoms of PBC.
I feel that in last 6 years my re- (mis-)diagnosis of 'pre-symptomatic for PBC' (which is not a even medically recognised diagnosis), and the problems that this causes has caused tremendous worry and problems. For me this is mainly concerned with travel insurance: increased costs and difficult discussions with TI telephone people, and I don't yet know if I would be covered at all for travel to the US which I will need to do soon. Fortunately I am not a position to need life insurance, but presumably a diagnosis of PBC (when it may not be necessary) could have a seriously adverse effect on some people.
I will check the figures (I don't have them with me) but if everyone in the population were tested for AMAs there would be a far larger % testing +ve, than the % that ever goes on to develop PBC. My GP also says that there are many such blood factors, and if everyone were tested for some of these - eg the rheumatoid factor, it would cause havoc, and yet the majority of people would never develop anything.
Hi GrittyReads, in answer to your question I have indeed had raised LFT's over the past ten years, but at the moment they are at normal levels having reduced over said past ten years. I was told by the Consultants at Bham QE Liver Unit that Urso should be started at the first sign of PBC as this is when it works and does not work as the disease progresses and indeed in advanced stage disease. This is why I think Urso would be better started on diagnosis as it apparently helps a great deal and does no harm whatsoever if it is "not needed". I just puzzle sometimes at the vastly differing opinions on this site, as we all seem to given different information. I'm more confused about PBC now than before I joined this forum, LOL! When I spoke with Collette at the Foundation I was told that pos. AMA's are THE marker for PBC, I am only repeating what I have been informed by experts
Hi Lou Wooda,
Thanks for sharing the info about your lfts. I was curious (and worried) at the idea that you might be categorically diagnosed with PBC just from +ve AMAs, but you obviously have 2 of the diagnostic criteria. Although I have not developed PBC, ever since the new-to-me consultant came up with the [bogus?] diagnosis of 'pre-symptomatic for PBC' 6 years ago, I get very jittery every time my lfts are due, even though my GP points out they have always been 'perfect'.
I agree completely with you about being more confused than ever since coming on here. I do think some people may misremember some facts, but it does also seem that many of us are being given different 'facts' by experts. Maybe Collette meant that AMAs are a marker that must followed up, given that most folk with PBC also test +ve for AMAs? But I'm sure the handbook that the PBC Foundation produced says AMAs alone don't mean you've got it. I'll check that - the file's buried in a filing cabinet somewhere ... I was trying to tidy up over the hols, then gave up and now it's worse than ever in here!
It sounds like you are doing well, though. So good your lfts have responded to Urso.
Thanks again and stay well!
I've recently found out I have +ve AMA and have done loads of reading about the chances of it resulting in PBC. I've found this study (ncbi.nlm.nih.gov/pubmed/150... that found the prevalence of PBC in AMA positive people to be 0.74% ie less than 1 in 100.
I don't know whether this covers all of the subtypes of the antibody though, if it does then I assume the rate will be low as some subtypes aren't linked to PBC (or as closely linked). It's the M2 subtype that is most closely associated with PBC. Other studies looking at prevalence vary from between 1% and 30%. A wide range but not a certainty you develop the disease even if you have the antibody. Of course this comes with the caveat that LFTs can change and therefore the disease may develop later on.
Despite the above, and finding out I have normal LFTs I'm still doing a lot of worrying about it myself!!
Hi Aussie05.
Thanks so much for this info, I will check out the link asap. I didn't even know that there were subtypes to the antibody - although I guess it's obvious! It sounds like you have really been doing your homework - any more suggestions of things to read gratefully received.
I have tried to check out more about PBC, and AMAs in particular, but - as I've said elsewhere on this site - I have a bit of an ostrich mentality. I tend to get feisty in Dec-Jan when my lfts are due, then forget all about it in relief once the tests are okay. I've become much more active since joining this site. It's partly motivated by others with a similar diagnosis(?) who have been glad to hear someone else questioning their 'labelling', but also I'm generally annoyed at some the things people have been told by GPs or consultants. I also research for a (non-)living (EnglishLit/Biography) so I already spend too much of my life searching online.
But ... I always mean to do more PBC/AMA searching. I'm guessing you are in Oz, yes? It may be that you have more access to publications than we do in the UK. Much academic research in journals - including medical studies - are not generally available online. It used to be that people could read periodicals on the shelves in 'open access' university libraries, but now everything is online and only staff and current students can access most academic research. I can still get online access at my old Uni, maybe I should go there and spend a few days searching. At home I quickly get tired of wading through dross.
Thanks again, much appreciated. Lets hope we both keep holding out.
Hello again Aussie05.
Apologies, but can you check the details of the link you sent, or maybe send me the title of the article? Trying the link just tells me that the page does not exist, so I've played around on the site searching with variations on the theme of PBC and AMA positive people etc, but no suitable study titles so far.
Thanks.
Sorry about the link. If you google this you will find it:
'Prevalence of antimitochondrial antibody in Japanese corporate workers in Kanagawa prefecture'.
The incidence of PBC varies from country to country, it's more common here in the UK than Japan (I'm not in australia!), so maybe the numbers will be different but not too different I would imagine. There are other studies like this but this is the first that comes up when you google 'Prevlaence of AMA'. Most other studies seem to be looking at AMA prevalence in people that are already suffering from health issues / autoimmune diseases / have raised LFTs.
You might be interested in looking at articles on the possibility of PBC being a viral disease. Viral particles have been found in the liver (specifically bile ducts from memory...) and a clinical trial was carried out using antivirals to bring LFTs back to normal. I think it had some success but there were issues with the drugs used and the endpoints for success were considered too harsh in retrospect. There is a trial currently running using different antiviral drugs so something to watch out for.
This link (if it works) has the subtypes of the antibody:
chronolab.com/rheumatic/12.htm
I would imagine that they test for the PBC specific version (I do not know this for sure though) when you have your blood screened though as my results came back 'suggestive of PBC'.
All now found! Many thanks!!
Aussie: From clicking the link and reading the abstract, 0.73% is the rate of *symptomatic* PBC among the AMA-positive population. Remember that most PBC is asymptomatic initially.
However, your point is well-taken. From published prevalence statistics, this number couldn't be more than about 6.7%.
Skywalker's point below only strengthens yours. AMA-negative PBC can, of course, be eliminated as a diagnosis in those who are AMA-positive, but these cases are counted in PBC prevalence statistics. This would lower the percentage you cite even more.
I also want to say again that enyzme level tests are not the same as LFTs, as they dont' measure liver function. But this is a quibble and doesn't change your overall point, which I agree with: PBC is relatively uncommon, even among the AMA-positive population.
Ok, what about the people who have PBC and no AMA?
Another thing that bugs me is fatigue?
What induces that?
I suffer crippling tiredness sometimes and yet my liver is fine, and so are my lfts!
I'm not convinced that I have PBC!
Other than aches and soreness in my bones which could be anything! Mottled palms which could just be normal for me!
I do however get unbelievably tired, like my body is heavy and simple tasks seam too much!
But my lfts are fine and so is my liver!!
I don't know whether I should have a biopsy or just forget about the whole thing! Because at the moment I'm fine!
Wishing you all well xxx
Hi, If I am AMA M2 pozitive is PBC for sure? The liver is fine, I had fibromax test. For so many years my body hurts and I have a daily diarrhea and, sometimes, a pain under the right coast. I tried to find out what kind of desease could be and started to have some tests and I was found pozitive for AMA M2? Could it be other desease? Like Addison or smth else? I will have an IRM within 2 months.
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