I've been doing the rounds of consultants and blood tests since I hopped on the AMA bandwagon nearly two years ago, and somewhat frustratingly, my AMA has been been a weak positive for the three blood test done through my GP, and negative twice when done through Queen Elizabeth hospital. It's frustrating because QE have a more sensitive lab test than my GP's lab test, and they would be able to tell the type of AMA if the blinking thing was positive at the time. ARRRRGH! My IgM has been consistently raised which is why QE are keeping me on their books instead of discharging me, and this year my ANA has become weakly positive, though is negative for the nasty version of PBC (GP210 and SP100), for which I am grateful. Due to normal LFTs, I've not got an official PBC diagnosis and am not on Urso.
I'm just ignoring it for now, but was curious to know if anyone was in a similar boat. For those of you with postive AMA but normal LFTs, do you also have raised IgM? Has anyone progressed with a vacillating AMA?
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Keren
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Keren, since I am not a health specialist but only a fellow patient or rather a member of the online PBC foundation, I can answer you by telling you my own experience.
For the past three years, my LFTs were not ok, my AMA was positive and mildly raised. ANA was negative. Had three focal lesions but two biopsies as well as blood tests showed no malignancy and confirmed chronic non viral hepatitis.
This year, and only three months ago, my AMA was negative and ANA got positive. However, my lesions did not show in my latest sobography and my LFTs were back to normal. So, to wrap up, it is either the medication I have been on or just the change in life style and eating habits or both that play major roles in one's health.
My advice to you is as long as you are not suffering then you need not worry about tests. By suffering I mean, extreme body pain, debilitating fatigue, non stop itching, brain fog, unexplained gain weight, etc.
Sorry to hear that things are even more in limbo. But good to hear that QE are being so thorough and careful with you.
I'm afraid I can't help as (this shows what a 'head buried in the sand' I am) I have no idea about my IgM levels - I'm sure it's not tested for. I think I was told no ANA when I was 're-diagnosed' 7 years ago*, but I don't think it's been retested, since. I'm coming up to my annual lfts and am planning to deal with all this - any day now?!?!? - as there are other things I've not had checked, and because there have been folk on here who have had biopsies with AMAs only and normal lfts, but bile duct damage found.
However, I still don't have symptoms and feel fine. I've been meaning to demand re-referral and more tests for months, now, but family stuff and other illness - all fairly minor, but niggling, and time and energy (and money) consuming - keep interrupting. I did have costochondritis over Summer, which was very scary - not least because it took so long for tests and X-ray results to come back. I was afraid then, that in being so phobically PBC-obsessed, I'd been ignoring other things - but all was fine in the end. I think I'd overdone things at the gym, too soon after a bad cold: a friend - no PBC connection - got costo from overtaxing herself physically too soon after illness.
I do hope someone posts on here with better help and advice for you . Have you asked the PBC F people? Have QE told you all about what the IgM means?
Sorry to waffle on about me.
Take care and try not to worry: treat yourself.
*For the benefit of others who don't know my posts: I've had AMAs for about 23 years, no PBC symptoms and no abnormal lfts, and clear ultrasounds. Was not 'diagnosed' with anything for 12 years, then told I would never get anything and to stop lfts. Reassessed 7-8 years ago, after a new-to-me GP panicked over the AMAs news, and sent me to new consultant who labelled me 'pre-symptomatic PBC' (which does not formally exist as a diagnosis, and which plays havoc with insurance). Most people like Keren, with Amas but normal lfts are not diagnosed PBC; but it seems to be increasing, to lable PBC on AMAs alone. I do worry that a lot of consultants seem to vary so much on this.
PS Keren, I told you that, also 7 years ago, a rheumatologist said I had the start of osteo in my wrist, and I'd need regular injections and maybe an op, eventually: I've always thought I just had ligament damage, as it cleared up. One of the ailments this last year was a pulled tendon in my thumb - same hand. The consultant I saw looked at new X-rays, prior to ultrasound, and noted that 'for my age there was remarkably insignificant evidence of osteo'. (!!!)
IgM has a strong correlation with PBC - nearly all patients with PBC have a raised IgM. It's even been suggested that IgM be used to diagnose patients with cholestasis (blocked bile ducts) - see ncbi.nlm.nih.gov/pubmed/747....
Its normal role in the body is as the first antibody to arrive on the scene due to an immune response, so is often raised during an infection. However, mine has been raised consistently since my bloods started to be checked almost two years ago, and has gone up since then.
I'm frustrated because after my AMA negative result at QE, I was starting to wonder if I even had PBC. I was hoping the GP one at the beginning of this year would also come back negative, and I think my GP tested it purely out of curiousity! So it was a bit deflating. I'd managed to escape the Sword of Damocles feeling for the last few months, and now I'm back to worrying about just when my LFTs will start going awry. Hohum.
I've had costo, and it was MISERABLE. So you have my sympathies.
BTW, Dr Hirschfield was saying he's writing some diagnostic guidelines at the moment, so maybe that will help with the inconsistent approach amongst GIs and Heps.
When I asked about biopsy, he was very clear that he wouldn't do that as there's quite a high associated risk which my current situation doesn't justify.
And pleasing about the osteo - arthritis is no fun.
So, so sorry! It is so frustrating, but it does sound as if you are having wonderful treatment from QE, DrH and your GP.
I do think my GPs see me as 'worried well' , even though they are basically very good and concerned - and flew into action mode, and examined and tested like mad, with the costo, as I presented in panic 'first thing' thinking it was my heart!! While simultaneously thinking, 'I don't think a heart problem should be like this??/' Once I had a name and looked for costo, online, of course it says 'sufferers may think theyre having a heart attack'.
Wonderful, divine, to hear that the lovely Dr H is writing some diagnostic stuff. I am most alarmed at the variety among GPs and consultants.
As with Peridot (below) I also don't know about the nasty PBCs - not sure I want to know. However, the more I chase things up, the more I realise there are more things in 'Heaven and Earth...' as well as wondering how much my GPs do know. I there are no other PBCers in my practice, and although I have made contact with a few more in Devon, none are near me.
Take care my dear, and keep me posted - off-site, if you prefer - as to how you are getting on. I do hope you get some solid news, soon. NB would MRCP scan or even MRI show any more? Forgive me if I've asked that in the past.
I've replied to Peridot below if you're interested!
I'm having another fibroscan tomorrow - if that's gone up, I think I'm going to get really worried and maybe ask about MRCP/MRI. If not, I guess it's just a waiting game. x
I haven't checked back in here for a few days, so a belated 'hurrah' at the news that the Fibroscan result was good. Very interesting to catch up with the discussion further down - congratulations on your spirited stance.
Whatever the outcome of the 'diagnose or not' issue (with regard to only being AMA+ve), I do think it is unacceptable that several people who present with pretty much the same medical details - that is, only AMA+ve - should be so differently treated and labelled. I'm aware that there is probably much more about PBC and AMAs etc, that is still not known, but it is alarming that GPs and consultants do differ so much with regard to follow-up and diagnosis (or 'labelling').
On paper it would seem that you, me and badpiglet are pretty much the same, in only testing +ve for AMAs ... However: you do not have a PBC diagnosis, but are receiving good follow up: I have a spurious diagnosis, yet the only follow-up is annual lfts; while badpiglet does not have a PBC diagnosis and (I think) has the same follow-up to me. There are probably loads more people out there, with the same presentation, yet still more variable responses from medics.
I think I've reached a point where I want them to either prove that I've got PBC, or else remove the non-existent diagnosis ... yet with the addition of more careful follow-up.
So, even more reassuring to hear that Dr H is working on tighter diagnostic guidelines. By the way, to your knowledge (or Dr H's), has the issue of the much higher % of women sufferers, coupled with the fact that for many women the diagnosis of PBC comes in the perimenopause/menopause period been discussed or researched? I'm very curious, as I'm wondering if high oestrogen has anything to do with it. I'm sure I could/should chase up papers more for myself, but I have been very 'head-in-the-sand' (apart from my occasional rants on here, when I think people are being caused unnecessary worry) ... and I'd rather get on with my own research and writing!
This readable (!) article from the Science Daily might help answer your question: sciencedaily.com/releases/2.... And it seems man-flu isn't made up after all!
I've only had a quick read, but the paragraph near the end: "We have only just begun to appreciate the powerful and complex role estrogen plays in the immune system ... The overwhelming sex bias of autoimmune diseases demands that the estrogen connection be studied more deeply." made me punch the air and cheer.
Okay, there's loads more work to do, but at least people are looking into this area. I've been saying this for 7 years ... while getting pitying looks from consultants, random men, and even my (otherwise lovely) gynaecologist.
Well done, you have made my day, weekend ... year. How do you find all this stuff? I do have half-hearted searches every so often, but I feel that ... my worry about my (possibly non-existent) PBC already takes up too much time and energy that should be spent on creativity and having fun.
Must also email this to a friend with Lupus.
I wonder if it's worth shouting about this a bit more, even just on this PBC site. Maybe if all the 'autoimmune' suffering women could join in a chorus for more research???
But 'Great!' Again: thanks!! Even if it is only the tip of the iceberg, I no longer feel quite so barking mad for banging on about women/menopause/oestrogen etc for so long.
Just got around to reading the article and, very definitely yes, I'm joining the chorus for more research on the oestrogen link!
Hello Keren.
I don't understand what you say about 'nasty version' of PBC. I started itching early 2010 and then took myself to the GP a fortnight later when it wasn't letting up. (I just thought it was due to over-working, run-down, etc and would resolve.)
I had abnormal LFTs (though not as high as they appear they can reach by the odd posters on here when they m ay give a figure) and started on the road to PBC. Had various other blood tests to rule out other things, first of all whether it was bone or liver related as both can give abnormal LFTs (as well as other factors, ie medications). It was decided it was liver-related. Other blood checks (ie Wilson's Disease) were ruled out and then I was sent to the hospital hepatology locally.
I had the AMA blood check (with the ANA) that day and was diagnosed with this, the symptons I had at the time (fatigue also but I never thought of that and it's long since gone for now. Still itch though) along with also an abnormal GGT and the LFTs gave this. It is considered that one will have an abnormal GGT reading with PBC. My LFTs and also GGT are still abnormal after 4yrs on urso but they are not doing so badly at present.
I never received any figures for the AMAs from the hospital consultant. In his letter he just put, "A high titre of AMAs" that gave a positive indication of PBC. He said the ANA was negative.
I did think if a doctor was in doubt as to if a patient had PBC or not then there would be a liver biopsy. That is a definite of PBC diagnosis due to cell changes. Apparently regardless of where the sample is taken from it might not be an accurate picture of how the liver is as a whole though but it does show PBC.
I have read that with the AMAs they can fluctuate even in someone with a definite PBC diagnosis. My theory here is that the AMAs are being perhaps produced slower in the body or maybe at the time our system can override some and then the PBC seems better. I believe this can happen. Would maybe explain how some on urso with a PBC diagnosis can then have a return to normal LFTs and remain that way and the PBC has come to a halt for a time. This might explain how we can live a pretty normal life with urso and it never progressing much in the majority of PBC patients.
Did your doctor prescribe urso at all?
Another thing is that I was informed by the hospital doctor that the bloods for AMA in our case would be going off to a specialist laboratory as opposed to pathology at the local hospital where all the more common bloods go. I somehow think that this would apply if a GP was to do the AMA (or ANA or others) also. My GP for some reason didn't take the AMA and ANA.
>>I don't understand what you say about 'nasty version' of PBC.
There's a particular type of PBC (only in ANA positive patients, so you're in the clear if you're ANA negative) which is associated with a poorer prognosis and shorter time to liver failure.
50% of PBC patients are ANA positive, but of those 50%, just under half have two particular types of ANA called GP-210 and SP-100 which is associated with a poorer outcome. See ncbi.nlm.nih.gov/pubmed/156...
Actually, rereading the article, I'm not sure on the numbers of people who are GP-210 and SP-100 positive of the ANA positive patients. However, 50% of PBC patients being positive for ANA is definitely correct.
Basically, if you have PBC you're better off being ANA negative!
to quote your original posting - "and this year my ANA has become weakly positive, though is negative for the nasty version of PBC (GP210 and SP100), for which I am grateful."
I've not heard of anything other than PBC. I did think that having ANA positive (mine was negative) signalled something else as well as PBC. I was under the impression that patients with lupus had positive ANAs and that it had nothing to do with PBC but as you know I'm no medic and it would be a doctor who would give diagnosis of these conditions/health problems.
Quite frankly I don't take much notice. I think regardless once you are diagnosed with PBC it is anyone's guess as to how one will plod along with it. I think sometimes one can read too much between the lines and for me I will refuse to bother about unecessary things. I think in your situation I'd be asking a doctor to give me a detailed explanation of what I could have and what you haven't as for myself I'd rather know and then I can deal with it and crack on with life.
Hope you get your answers sooner rather than later.
I fall into the positive AMA M2, normal LFT bracket. Normal igM.
I only know about the igM as I insisted on getting a print out of my LFT's.
(If I understand it right, with some of the function tests it is good to be low but with at least one of them it is good to have a higher reading. So care needs to taken when looking at them and understanding what the results mean.)
Sorry to say I dont' understand your posting. If you have a positive reading of AMA then have you been diagnosed with PBC?
You can have positive AMAs (I apparently had a 'high titre' but I have no figure) but at the same time you can have normal LFTs and also normal GGT and not be symptomatic (I itch for eg) but even though you have PBC it might never progress beyond this.
I always get a print-out of my blood test results. I got all the ones from 2010 at diagnosis and that was due to the fact the hospital doctor wrote to me and said my Vit D level 'was low but not bad'. He wasn't recommending any supplements. I hadn't a clue what he actually meant so rang his secretary for a figure which she kindly printed off all the results and sent them to me. I saw myself I was 'on the line'. (I have since managed to regain a better normal level. No supplementation as yet.) My stress every time I have the bloods done is getting my GP surgery to give me a print-out, seems like I am about to crack into the Secret Service! My bloods last week were just the same, a bit problem for the surgery it seemed to print one out!
I don't scritinize my results at all anymore. I glance, see what is abnormal still and then look at the last one. I sometimes feel a bit deflated but another time elated. Then I put them away and get on until the next time they come around when I seem to spend a week of stress as I know I'll be a 'problem' for the GP surgery when I ask for a print-out.
Sorry, I did not see this sooner, but wanted to reply to badpiglet, as am in a somewhat similar situation. I am male, late 40's, with normal LFT's including IgM, with one exception: my AST is slightly out of range, usually between 40-50, and has been for years. I have no symptoms, but last summer my GP ordered more tests and i tested positive for AMA M2, with a 36 titre, where anything over 25 is positive. Long story short, a few months later, referred up thru the medical community, I tested negative for my overall AMA, and then negative for AMA M2 in a repeat test. Meanwhile my AST continues to float above normal range. We are now just monitoring my numbers, but my hepatologist does not think I have PBC due to lack of other symptoms or markers, particularly IgM and ALP, which are typically elevated for PBC patients. Nobody has an answer for how my AMA M2 could go from positive to negative. The only thing I changed in my own life was to cut out alcohol, but I was not a big drinker to begin with, just a beer with my dinner. My doctor does not feel there is adequate justification for a biopsy, even here in the US, where they are apparently more common than in Europe. Sure, it was good news to be told that I probably don't have PBC, but I still want to know how common it is to be tested positive for AMA M2, then negative a few months later? And how common is it to be AMA M2 positive and not have PBC, like badpiglet? What percentage of people like myself or badpiglet will go on to develop PBC? Are there many AMA and/or M2 positive people out there in the general population, just living their basically healthy lives who will never know they had a positive AMA level because it is such a specific test? And of course, what should those of us who know we are positive be doing about it?
I am ama +ve 47 (under 24 negative), my ALP is normal, one biopsy (section of course) normal. My GI doctor has left the decision to me to take urso. He said I present clinically but not diagnostically. He further agrees that it was only one section of the liver. He said I more likely than not have pbc but it was the earliest of early. I dont have any symptoms. There is so much uncertainty. My prescription is being filled right now. I heard the cost was high but it 68 dollars for a 30 day supply so 840 a year is definitely not cheap but something i can afford. did try to see a hepatologist but she screens her patients so i need to send my labs and biopsy to her before she will see me. Not sure yet what to do. The only family hx is my grandmother died from an esophageal bleed due to non alcoholic cirrohsis of the liver.
No, my consultant was quite clear; I do not have PBC but I am positive for AMA.
As Gritty Reads has previously said (sorry to repeat), there appear to be some consultants and GP's that stick to the PBC diagnosis requirement of requiring 2 out of 3 criteria to be fulfilled.
I only have 1 of the criteria - positive AMA and otherwise am symptom free with normal LFT's, in reasonable health (ha, ha) and my liver appears to be healthy and working fine.
My GP's practice implied that there are quite a few of us in the same boat and I should not read anything into having positive AMA. I would love to know just how many....
If you don't mind wading through medi-speak, there's an interesting editorial piece here that is trying to answer that same question: creativeinfusion.co.uk/edit...
Hi Karen, I've been reading this thread as the AMA, some symptoms, but clear LFTs applies to me. I've just tried the link above but it takes me to a web designer company. Please can you repost the link?
It seems the guidelines now re diagnosis of PBC with a few criteria (symptons, abnormal LFTs and AMAs) as opposed to years ago when a biopsy was taken. I know in the States (not sure about Australia) it seems the standard for a patient to be diagnosed with PBC using these other factors but then to have a biopsy to apparently stage PBC - I don't go in for staging at all. Not interested and I am pretty confident that an ultrasound can show the state of the liver - saw a programme live on air back in 2010, the specialist pointed out deterioration of the liver in 2 adult males who were in the studio.
All I can add is that if you are asymptomatic and your LFTs are normal even though you have been deemed to have a positive AMA then I expect you will still be moniutored at intervals for any changes in the LFTs?
At the same time given you are asymptomatic then perhaps you have some sort of heads up and can ta\ke good care of yourself and enjoy life. I hope it continues that way.
Thanks Keren for the link, though trying to read it at work did my head in a bit! Very impressed that you found an article that all my searching didn't dig up.
Yes, Peridot, you're right I do need to have annual monitoring of LFT's. I'll try to take care but that's a skill I'm still learning - taking care doesn't come naturally!
There is much uncertainty when it comes to what constitutes a diagnosis of PBC.
In the main, the concensus is that AMA positive is enought to diagnose PBC. Yes, there are about 5 % of people with PBC who are AMA negative.
Given that PBC manifests itself with a build up of bile which *tends* to affect liver function and cell change within the liver. Given that Urso is a bile salt which can slow down the progress of the condition, by flushing bile out of the liver. Are you going to wait until you have cell change or raised LFT's before you start the process of flushing bile from your liver?
Research projects will have much more robust or stringent criteria for inclusion and these tend to focus on 2 of the following: AMA+, raised LFTs (be that specific measures ot in general), presenting symptoms, and/or some kind of cell change.
As it stands at the moment, most hepatologists working in most liver units would not necessarily wait for at least 2 of those circumstances to occur before diagnosis. As a reminder, there are many people who have stage 4 cell change and yet remain fairly asymptomatic.
So, I personally would not go down the "Well, I have no symptoms so I don't want to be diagnosed and don't bother with the Urso either" approach. PBC is a multi-faceted condition and there are many aspects to its management. Each case must be taken on its own merit. As a Foundation, we just hope that each case is taken in as informed a manner as is possible.
As an aside, my understanding of ANA is that it points to a condition other than PBC, but that is a back of my mind memory and would need verification from elsewhere.
Since I'm in the enviable position of having a consultant who is a named party on 101 published studies on PubMed (most of them about PBC), is an acknowledged specialist in PBC in the world of hepatology, is a top consultant at QE hospital, and writes on occasion for the Bear Facts magazine published by the PBC Foundation, I'm going to run with his opinion over yours. In fact, I'm probably a great deal more informed on current thinking re: positive AMA than you seem to realise, should you care to go back and read my posts.
I would suggest you have a discussion on this topic with the consultants specialising in PBC at Queen Elizabeth. If I was uneducated on this topic I would have found your post alarming.
ANA can be found in many other autoimmune conditions, as well as a small portion of the healthy population. However I have already linked off to a study above detailing the fact that 50% of PBC patients also have a positive ANA.
Do you suggest that I insist on another appointment with my Consultant? Insist on another evaluation and possibly try to pressurise him into prescribing me Urso? Maybe deliberately seek out another consultant who is more ready to prescribe Urso?
I can see where you're coming from however I do really want to know what you suggest I do?
Whether my diagnosis was 'I do not have PBC but am AMA positive' or 'presymptomatic PBC' doesn't matter much in terms of treatment as I wouldn't be offered Urso either way by my current consultant.
If it is easier, give us a call and I can chat through your concerns.
The joy of the written word is that it is a challenge to be absolutely clear, sometimes.
To try and clarify-
There are many (and yes- too many) schools of thought re diagnosis. Once the guidelines we are working on (with Gideon) are published, that will help enormously.
Research studies tend to be very strict with their entrance criteria- be that diagnosis, medication, symptoms, LFT levels, etc. They are looking for a statistically significant response and so exclude as many variables as possible.
When it comes to diagnosis and Urso. There are studies which say that early prescription is good. Others, not so much.
There is still far too much room for perception within the care of PBC. I am lucky enough to have access to Gideon, George Mells, James Neuberger and David Jones as and when we need. There are still some issues where even they don't agree one hundred per cent.
The UK is internationally renowned for underprescribing Urso. There are some who still doubt it's efficacy. As an organisation, we believe in it as the first line of care in PBC and, in the UK, it is listed as "standard care" for PBC.
On these pages, there is need for fact and need for opinion. I usually offer fact but occasionally offer opinion.
As I said in the previous post, PBC is very individualistic and health issues in general all occur within a particular context. Each person must make the right decision for them with their particular context.
If anyone wishes to chat through their particular circumstances, then we can do that. We do not make suggestions or recommendations. We merely try to put you in touch with the facts relevant to you.
Posted 2 questions for you here as I think others might like to hear your answers.
Do you have any idea when the guidelines you are working on with Dr Gideon Hirschfield will be published?
You say 'As it stands at the moment, most hepatologists working in most liver units would not necessarily wait for at least 2 of those circumstances to occur before diagnosis.' Although you, as representing the PBC foundation, do not make suggestions or recommendations, do you have a list of these liver units and heptologists to which you refer? Is this something available if a member contacts the foundation?
1) we work closely with Gideon in many areas. I cannot give you a timeline, however I can say the next meeting is in March and we shall be there to try and hammer out the detail in a timely fashion.
2) there isn't a list per se but do feel free to give us a call and we can talk through your concerns specifically. We work quite closely with the transplant units and are building more and deeper synergies with non-transplant liver units.
I'm afraid I'm not one for 'talking through my concerns' but may well e mail you.
Deeper synergies sounds like an unwanted medical procedure - think we definitely need to appreciate & value all you go through on our behalf! Thank you.
My goodness have just read through all that and am just relieved am an "old timer" in relation to being diagnosed with pbc! If this were not the case I would be pulling my hair out at this stage!! Sometimes u can get an information overload, which inevitably leads to more stress. Personally my opinions on pbc and how it should be treated should be left to the professions in the field I.e. your hepatologist. Trust them as they take a vow called the hypocratic oath think it's called though my spelling may be wrong!,
Which states fundamentally that in caring for patients they will do the patient no harm. Incidentally nurses abide by the same as laid down in their Code of Conduct.
Meant professionals bit rusty on the typing skills while since been on net chatting fellow PBC suffers. Hope I can help, was diagnosed with Pbc in 2002 having suffered symptoms of fatigue, joint pains and severe itch for a yr. Worst of these the itch and though not as severe now does remain to be my most annoying symptom. But have not let Pbc rule my life. Have lived a relatively full life attained a Diploma, a Degree, had a second child and in0 May 14 got married since my diagnosis in 2002 to name but a few things. It has not all been good but haven taken the rough with the smooth and just got on with life determined woman that I am. So to those newly diagnose take heart there is life after Pbc just as there was before it,,!
I think people react in different ways, and it's tough for those of us living with uncertainty. I know that personally I find reading up about this stuff gives me a sense of control and is oddly reassuring - knowledge is power and all of that. But yes, you're absolutely right - not living your life because of worry about a diagnosis would be the greatest shame of all, and I think consultants take that part of their job seriously.
Hi I have pbc now for 3 years I am ama postive DX by biopsy I am also ana postive and gp210 postive. At my last visit to queen Elizabeth I asked what this meant and was told that's not for me to worry about. You are the first person on this site to ever mention these results. I've posted before about this but nobody seemed to know what I was talking about. Sometimes I think I'm going mad trying to get a straight answer from the consultants.
The trouble is that they don't really know what the outcome will be, so giving you information about the worst that could happen when big uncertainty is in play is not good doctoring. They could be taking away from your quality of life for no reason. The gp210 marker simply means that they'll keep a closer eye on you than they might otherwise. But I understand your frustration - I've always come away from my appointments feeling as though I'm being 'managed'. Which I suppose is why I then go away and read lots of papers about stuff!
Well this has been the most interesting thread that I have come across. I have tested + AMA-M2 twice now, and ALP was + and is now back to normal, but biopsy showed a fatty liver and no inflammation or damage. Could the fatty liver have caused the + AMA-M2 and how important is the GGT and IGM in diagnosing PBC? Is it then possible that PBC is so early that it hasn't done damage yet to the liver or is the fatty liver a pre cursor to PBC?
Fatty liver causing or being a pre-cursor to PBC is a good question for the doctors to answer in a future issue of Bear Facts maybe?
In your case, Jean43, you had a biopsy that established you had no inflammation or damage. For some of us, (too many of us?) the GP's and consultants are making at best educated guesses based on symptoms we tell them in the surgery and results from blood tests that they have to specifically request. It is disturbing the amount of variation there seems to be between the UK GP's and which blood tests they are ordering. Of course there will be natural variation as we are all different with possibly additional conditions that require different tests. But my concern is that from reading the posts on this site, it is apparent that some people are having far more comprehensive LFT's than others. This leads to the possibility that some GP's are making decisions with barely enough or insufficient information. Whether the GP's are ordering the individual tests based on guidelines or 'what they happen to remember to order at the time', I don't know. But it would be interesting to find out how much the labs, that are doing the tests, are influencing what the GP's test for/order? There must be a financial influence. Considerable financial influence.
It would be good, if when a positive AMA M2 happens to occur, that the GP's had a list of blood tests that they should then make sure they have covered. This isn't the case across the UK with GP's at the moment, to my knowledge, but it needs to be.
My AMA M2 positive blood test was determined by my GP not to mean anything bar possibly repeating some annual LFT's. She was not concerned to give a referral to a consultant (but I insisted). She did not feel my liver and no ultrasound was carried out. So her decision was purely based on how I looked, any symptoms and exactly which LFT's she had chosen to request. Come back in a year. My consultant said the same thing but did at least feel my liver. In other parts of the UK I think the tests would have been possibly more comprehensive.
It would be great and much needed if when the PBC foundation and the panel of expert consultants draw up some new PBC guidelines in the near future, they address this variation around the UK of examinations, physical tests, blood tests and procedures. They need to include the labs that do the tests, not just the doctors.
A doctor at my surgery (not my GP) said 'lots of people have AMA M2 antibodies - it doesn't necessarily mean PBC or anything at all'. This remark....well......something else our expert consultants need to perhaps clarify for all of us and all the GP's out there. Maybe true but it sure as hell needs clarifying. It also shouldn't be used as a reason not to refer anyone to a consultant.
Sorry if I have sounded like I was ranting, just a bit worried.
I can agree with what your saying and completely understand your worries. I wondered why I didn't have a GGTP and IGM test done. There needs to be more consistency in guidelines all around I guess! I could totally have let this go but after reading PBC Roberts remarks about not waiting for damage to occur and what I've also read and the contradictions in the information that is out there. Grittyread's story does give me some hope in the fact hers was 22 yrs ago and that my own positivity isn't necessarily a cause for alarm for future problems but I am very curious as to just how high her titer was and has she ever had a repeated AMA test done. also, what would you like to seek to be done in your case badpiglet? Would you like a biopsy done and/or more bloodwork? Good luck to you and hopefully we'll never develop PBC.
I was just checking back on this strand - looking for an online link to an article that Keren gives, much further up! - and carried on reading through all the new posts.
I want to second what badpiglet says about there being no cross-country consistency in the tests that are done by the labs used by GPs surgeries, as well as adding a few details about my AMA history.
She alerted me to the restrictions placed by our local lab, and I was armed with this when I saw my GP a few weeks ago. I was due my annual lft testing, but - having noticed so many tests and readings on here that others mention, but which are not on my result printouts (I always ask for a printout now, this site has taught me that) - this time I did ask for more things to be done, and asked about past readings.
Everything came back 'perfect', and with GGT and IGm done for (I think) the first time, also good.
My GP also told that when I was first found to be AMA +ve in 1992, it was sub-type M2 (that had never been mentioned before, and I only thought to ask now). He also told me that, yes M2, when the AMA test was repeated in 2007/8. [NB this happened because my new-to-me GP had me re-tested when I mentioned AMAs. At my old (Hull) practice I had been told to stop the annual lfts in about 2003/4 on the grounds that if nothing had developed after 12 years, nothing ever would: I think that was very much the approach taken then. I'd never mentioned the AMAs before in my current practice, and I think in 2007 my GP was a bit bothered that they had not noticed it in my records.]
Also, ultrasounds clear, but I have not had a fibroscan or anything else, yet ...
So, I've had the AMA+ve/M2 repeated at least twice, but your chat with badpiglet has made me realise that, when I saw my GP recently, I forgot to ask about titre levels, or if they'd repeated the AMA test this time. All I know is that he was being as positive as he could be, about me not having PBC, while also pointing out that he cannot say that I will never develop it.
According to some statistics I was given by a PBC specialist:
the prevalence of AMA reactivity in blood donors is 1 in 200;
while the prevalence of PBC in women over 40 is 1 in 1000.
That is: more people remain AMA +ve, than ever go on to develop clinical PBC.
For a UK population of 64 million, my (back of a fag packet) calculation makes that:
only 64,000 have PBC,
while 320,000 will test +ve for AMA.
Unless people have some symptoms relating to a liver condition, or other autoimmune conditions, they won't ever be tested for AMAs, so there may be thousands od AMAs out there happily living their lives.
NB Another of my GPs made the point that if everyone were tested for other antibodies, we would grind to a halt: with eg: loads of people carrying the rheumatoid factor, but who never go on to develop it.
Sorry, didn't mean to go on quite so much - I really must learn the art of short emails. I'll try to remember to ask GP about titre levels when I see him next.
Meanwhile, you take care, enjoy life and have fun.
No, don't be sorry that wasn't too long and I thought you raised some interesting points. I do remember the Hep. Dr. saying that this test wasn't as reliable as the older one was and that it (older one) was pretty accurate for PBC and I thought it was strange to switch to a test that was less reliable unless it was too costly to do, but I thought you might find this article interesting and you may have already seen it, but here goes ncbi.nlm.nih.gov/pubmed/245.... Anyway, when my 6 month retest comes up in May I think I'm gonna ask for the AMA test instead of AMA-M2 and the GGTP and the IGM to be done too. I'm not really too worried about it anymore. I'm going to put my energies into things that I can change like getting more healthy with diet and exercise etc. than feed into those fears anymore. Wishing you good health and much happiness! Thanks!
One more thing, I came across this again recently...I forgot I book marked it, but it states this: "AMA are detected in over 90% of patients with PBC, whereas their prevalence in the general population is extremely low, varying between 0.16% and 1%, and only reaching 8% in hepatitis C virus (HCV)-infected patients[13]. AMA seropositivity is a strong predictor for the development of PBC. Mitchison et al[14] found that only two of 29 AMA-positive healthy patients had a normal liver histology pattern. Ten years later, 76% of those patients had developed clinical signs and symptoms of PBC[14,15]" It is in this article from 2014, ncbi.nlm.nih.gov/pmc/articl.... I haven't been able to find anything similar to the information your specialist gave you. I've looked at several articles and most state low percentages for AMAs in people who don't go on to develop PBC. I know there are lots of studies out there that contradict the other, so my question is: Do you have any scientifically based study that supports what your specialist told you? Thanks!
It was an unofficial communication, but he's one of the best and I'd trust him, but he didn't quote specific studies beyond what I've said.
The incidence of PBC he quotes is for women over 40, and it pretty much matches the % quoted in the PBC foundation folder.
As I said, the incidence for AMAs comes from blood donor statistics. I have no idea if the blood donor process screens the blood of donors, and this information is then available to other health care professionals;, or if the figures come from donors self-identifying as AMA+ve. I find this unlikely, as I get the impression from my GPs that most people just do not know if they have antibodies until something goes wrong.
The prevalence of 1 in 200 that he quotes for AMAs is equal to 0.5%, so its' roughly in the ball park with the figures quoted in the above study. And while it's prevalence is very low in the population, the incidence of PBC is considerably lower.
I've read this report, and I had several quibbles. If it's the one I think it is it's quite old; also 29 is a very small sample; and finally, were the AMA people just ordinary people plucked off the street? Or had their AMA reactivity been found when they went along to their GP with symptoms typical of PBC, even if they had not yet got it?
My AMAs were detected 23 years ago because I went to my GP with headaches and joint pains. I was struggling with PhD research I couldn't understand, depressed because all my lovely European Uni MA mates had gone back to their home countries, and to compensate I had thrown myself back into rock climbing after over a year of not doing any - ... hence the aches??
Unfortunately for me (imho) the new GP was a go-getter, and included the AMA test, more because it was then being linked to 'rheumatoid conditions' which was all I was told at the time. I saw a rheumatologist and a heptologist - and they both said there seemed to be nothing wrong with me, but recommended annual lfts. PBC wasn't mentioned until my current GPs retested in 2007.
I appreciate your response, I'm still just trying to understand it all. Did you see the post before that last one in regards to AMA vs AMA-M2? I was under the impression that the M2 was more accurate but that article states otherwise. Any thoughts?
About to settle down to film with other half! will try to find article and read properly, and then get back to you. I'm not actually all that knowledgeable, and didn't know about the difference in these 2 tests until you mentioned it above. If it is in the article I read, I possibly 'skated over something I didn't understand.
Yes, I'm going to have a second opinion, partly to rule out any unforeseens, and maybe have my bogus diagnosis changed, if they cannot prove I have PBC.
I seem to remember that the AMA M2 titre does not reflect the stage of PBC. But then I also remember reading that if the titre is over 1:40 then PBC diagnosis is more certain? The main lab in our area (Derriford) does not give a titre reading but instead the result simply says positive or negative. This may be fine for us and doctors in the short term, to give an indication which I assume could be followed by a more detailed test if required but if research in the future would like to know precisely someone's past titre results, the information won't be there.
Would I like a biopsy? Lord no - unless I was advised to by specialists in PBC. However, I would say yes to a fibroscan. Robert did rattle my cage somewhat.
You hit the nail on the head with that phrase 'consistency in guidelines'.
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