WRONG PBC DIAGNOSIS

Admitted to hospital in September - chills sweats back pain fever did all tests from gallbladder to liver found nothing. Dr. did AMA test. Said had PBC. Gave urso. Went for further testing a few months later at another doctor specialist in March. And found I did not have PBC! Tests should be re confirmed as Quest labs on line recommends. Am upset first doc just up and branded me initially. I do have NASH - no cirrhosis. Perhaps diet exercise may normalize inflamed liver

[NotorDJP]

Wow. Did they do a biopsy and got it wrong?

[oreo2016 in reply to NotorDJP]

i never had a biopsy

[Hidden]

They did biopsy no cirrhosis. AMA now negative. Apparently when I was hospitalized levels were raised over the normal level. Be sure AMA tests are repeated several months later to confirm. I checked on line - half crazed - because the sites all say that positive AMA is 95 percent correct for PBC prognosis They should all say. REPEAT. Enzymes or other things affect.

[Hidden in reply to Hidden]

Sorry I have just seen that you did have a biopsy, missed that when I was reading everything else.

Interestingly the AMAs can fluctuate. Some with PBC can be rechecked for the AMAs at a later date and be negative. My theory then is that if this is so, PBC must have slowed right down.

I cannot understand though how results of your biopsy were relayed to you. I'd certainly ask about that. If PBC is present then that would normally show it up. The other thing too is that other things can be debatable as the liver is a large organ and the biopsy spot might be perfectly normal or not so it isn't a reflection of the whole liver. I know myself this is the main reason that I wouldn't accept a biopsy after PBC diagnosis myself if I had been offered due to the fact of this and of course given it wouldn't have changed the fact that I would still be taking urso.

Some with PBC can have positive AMAs and yet have no symptoms of PBC and also normal LFTs. They are known as asymptomatic and may or may not go on to develop symptons. Others like me have abnormal LFTs and symptons. Mine is just itching currently.

[NotorDJP]

interesting. I am having my tests rerun before my biopsy, but not sure they are doing the AMA again.

[Hidden in reply to NotorDJP]

Why not. Did they just do one AMA BLOOD TEST

[NotorDJP]

Yes

[Hidden]

Hello Shores.

Sorry to read of your experience with regards to being informed you had PBC due to having the AMA test but the path mine followed to diagnosis started when I presented to my GP with itching and at the time fatigue. Blood tests were taken and if was found I had abnormal LFTs. Further bloods to rule other things out and then a scan on the liver and surrounding organs (that turned up to look like I had normal organs) and finally the AMA which was taken 7 months from my seeing the GP about itching, I was informed I had PBC due to positive AMAs.

Mine was actually pretty straight-forward but I know a lot of others on this site have been informed via other routes, ie liver biopsy.

Liver biopsy can diagnose PBC and considered to be the norm to have one taken in the US unlike in the UK. (Exception is if the AMA is debatable and also other reasons are known.) I presume from your hospital tests when you were in you never had a liver biopsy as that would have definitely given you a result.

Not really any knowledge of NASH, didn't read a bit about this until 2010 when I was going through tests myself and checking up on liver conditions. Don't know what medications you may have for that but given it ends in the word hepatitis then maybe steroids possibly temporarily.

I think with all liver conditions all you can do is try to eat and drink things that will be of benefit to your health with as little as possible of the things that are considered not so good. I won't mention alcohol due to the fact that we all know PBC in particular also NASH and other conditions have nothing to do with alcohol at all but alcohol would have to be used in caution as it does put strain on the liver. Some drink a little on the odd occasion, others like myself who was never a drinker prior to my first abnormal LFT choose to abstain permanently. I don't bother as it was never something I did frequently prior to PBC diagnosis anyway.

The advice that seems to be given for anyone with a liver problem is to eat little and often. I'd also check the fat intake too. There doesn't appear to be anything that we cannot eat with a liver problem.

[GrittyReads]

I think that nearly all of the sites, papers and books that talk about PBC in relation to AMAs need to go back to where they got their original information and CHECK carefully what they are saying.

My understanding is that ...

About 95% of people who are found to have PBC, will also be found to already have +ve AMAs.

This does not mean that 95% of people who have +ve AMAs will get PBC.

Yet this is how it seems to be translated in a lot of shoddy online (and other ) descriptions of PBC.

The presence of AMAs is a strong indicator for PBC, but other tests should be done to confirm that PBC is the diagnosis, rather than assuming that AMAs mean someone has got PBC. A far higher % of the population test +ve for AMAs than the % that will ever develop PBC.

Testing +ve for AMAs is only one of the three criteria that are used for the diagnosis of PBC. Generally 2 out of 3 of the criteria should be present for a diagnosis of PBC (and preferably all 3 for a cast-iron diagnosis).

That is:

1) abnormal liver function tests, and/or:

2) testing +ve for AMAs, and/or

3) a liver biopsy that confirms PBC by showing clear damage to the bile ducts

This is not just me saying this, it's what it says in the PBC Foundation handbook, it is what was quoted to me by a leading PBC consultant, and presumably it is what is set down officially in diagnosis guidelines.

My understanding is that these diagnosis guideleines are supposed to be strict (can anyone advise on this?), as presumably they may be used to govern whether someone gets welfare, or treatment. [I guess the equivalent in the States would be that your health insurance would not cover you if the strict terms of the diagnosis had not been followed, and you've been told you've got something, when strictly you have not got it.]

I'm also concerned that GPs in particular should be testing for other conditions - as well as PBC - whenever they have a patient who tests +ve for AMAs, as there are various subtypes of the antibody and other types have a part to play in other conditions, such as lupus or Sjorgens, and others.

I think a campaign is necessary to bring the whole issue of PBC, AMAs, and all other autoimmune conditions, such as lupus, Hashimotos, etc. into the limelight. It seems to me no coincidence that most of these conditions primarily attack women, and mainly women in their 40s-50s, and that it therefore seems okay to ignore them or give them 3rd rate treatment. No one seems to be looking at: why Women? why at menopause age? and 'what can we do about it?'. A consideration of the role of stress into the development of autoimmune conditions might help too.

Sorry about that ... when I see what's happening on here, but also the thyroid site and endometriosis site I get so mad!!

[SC49 in reply to GrittyReads]

i totally agree with you Gritty Reads. It's like going down a mine with no lamp. There seems to be no consistent means of diagnosis, no agreement on symptoms or monitoring, no agreement on using other medication (like pain relief), no comprehensive consistent advice - apart from whats provided by the charitable organisations like PBC foundation. I know that the same applies to people who have other autoimmune conditions. It is almost as if they don't know and they've no intention of finding out because autoimmune disease is not sexy and women don't matter. I think that men who have PBC must have an even worse time because they don't fit any of the boxes.

[oreo2016 in reply to GrittyReads]

i have normal ranges in my blood work both on and of urdisol

[GrittyReads in reply to oreo2016]

So have they decided that you don't have PBC, after all? Even though you were (presumably ?) put on Urso for a while?

Also, when you say 'blood work' do you mean the blood test for AMA-M2; ... and/or the levels of your liver function tests (lfts)? It is the latter that can fluctuate, (hopefully) dropping if Urso is given, but also reaching very high levels if PBC is there and not being treated.

Please check out the 'PBC Foundation' website. On there they have a summary of the recent EASL (UK AND Eu agreed) guidelines for the diagnosis of PBC which clearly states the exact diagnostic criteria that Medics should follow, in order to arrive at a correct diagnosis of PBC.

There are still cases of people being diagnosed with PBC when they just have AMA-M2, but this alone is not enough for a diagnosis of PBC. The second main criterion for PBC diagnosis is raised levels of the lfts. If these latter levels have always been normal for you, and if you feel well, don't have symptoms of PBC, and don't have a family history of PBC/or other autoimmune conditions, then it seems unlikely you have PBC, and Urso should not have been prescribed. Have they ever offered a biopsy or a fibroscan to check the health of you liver, further?

It does depend on exactly what you mean by 'blood work' and what other tests and checks were done. I would talk to the lovely, learned advisors at the 'PBC Foundation' (as well as checking out all of the website). There is a link to the 'PBC F' at the top of this page.

Hope this helps.

[Hidden]

Hello GrittyReads.

I only read about AMAs during 2010 when I was still undergoing repeat blood checks on the 9 month long road to diagnosis of PBC.

I was said by the hospital consultant in his letter to have 'a positively high titre of the anti-mitochondrial antibodies' and this stated PBC diagnosis.

Now I presented to my GP with itching and at the time fatigue (latter I no longer seem to be plagued with, tiredness different thing as due to itching at night). I had blood check and the LFTs were abnormal and over the months up to diagnose they continued to slowly rise. Yes apparently there are usually a few factors for diagnosis, symptons, bloods and usually the AMA as I had. I am in the UK and here as I think you are in US (forgive me if you are not, lose track sometimes) a biopsy isn't used unless there is doubts. (I've no interest in a biopsy whatsoever now. I originally thought that I didn't have such a thing wrong with me and that it would just go away but as time has passed (3yrs now from diagnosis), itching remains so and my LFTs though have come down over time I know myself that I do have PBC. A biopsy to me now would only give what some say are stages of PBC but again, I really think I do not want to know.)

One thing to point out too, when I have in the past looked at criteria for participating in any of the clinical trials I have noticed that there are certain specifics. The ones regarding PBC have normally stated that a patient has to have 2 of them. So I get it right I have quoted here what one of the trials on patient.co.uk states:- ' Proven primary biliary cirrhosis (PBC), as demonstrated by the presence of at least 2 of the following 3 diagnostic factor (History of increased alkaline phosphatase levels for at least 6 months; positive serum AMA titer; Liver biopsy consistent with PBC)'

This trial is for NI-0801, an Anti-CXCL10 Monoclonal Antibody.

I personally do not think anyone is looking into how these so-called auto-immune conditions like lupus, MS, PBC, etc start up (even insulin-dependent diabetes is auto-immune as my daughter informed me as my 4 yr old granddaughter developed diabetes aged 3) but I think it could be one of the tricky ones. I have my views on how something like this develops but it might not be the eventual explanation.

I think the way forward for a lot of auto-immune conditions where certain parts of the body are slowly being attacked is to develop something to eradicate the antibodies that are being produced. Finding the PBC switch might not necessarily be the answer to stopping a person developing PBC in this case.

[GrittyReads]

Hi Peridot,

I'm not in the US, although I acknowledge that they seem to do biopsies in order to formally diagnose PBC far more often than they do in the UK. With us on the NHS, it's probably just to do with expense - I seem to recall that someone on here was given a biopsy without any quibbles, when being investigated for PBC, but that was in the Private sector.

I'm concerned that it seems to have become a nasty shorthand for labs, some GPs, and even some Consultants, to say that just having +ve AMAs - alone - is enough for a diagnosis of PBC ... when it is not!

There are other conditions that are more specifically caused by certain of the subtypes of the antimitochondrial antibody, and they should be checked for (my GP did test me for everything). Also, there are other conditions which should possibly be checked for, according to what is going awry with the liver function tests when they are abnormal (mine have been normal for 22 years).

I guess one reason for a biopsy is that it is the closest that we have got to an absolute diagnosis of PBC, and can rule out the grey areas that seem to exist for diagnosis based on lfts, and AMAs alone.

Also, doesn't the staging become important when deciding if someone needs a transplant?

I am angry because I feel I have been diagnosed with something I have not got - or at least it's possible that other tests could have been done to rule out this diagnosis - or even to confirm it!! I don't want to have PBC but there have been people on here who it seems do have it, even though lfts were normal. My nightmare is that I will have a biopsy (or one of these new scans) and they will find that I have had galloping PBC all this time, and I could have been having treatment. I'm also concerned that GPs, Consultants etc are not paying sufficient attention to diet and exercise as means of controlling the symptoms and stabilising lfts.

[Hidden in reply to GrittyReads]

I am still looking for that website that shows the lab test protocol for PBC - it listed all the requirements and the 2 out of the other writer and discussed - can't find it but I'm still looking for when I find it I'll send it

[GrittyReads in reply to Hidden]

Hi thanks for looking - '2 out of the other writer' ?? Cheers.

[Hidden in reply to GrittyReads]

I sent it. Did you read it. It is under a new post WEBSITE FOR PBC

[GrittyReads in reply to Hidden]

Thanks, will look for it. Sorry, I don't always seem to find everything I'm sure has been posted.

[Nboyd8]

I am wondering if I am going to end up with something similar. I have all my test come back fine except my ama and that number dropped. My dr said nope you have pbc deal with it. I got into a dr at the university and he said I can't say you do or don't. I was so relieved. I go back in 6 months to redo blood work and I hope to know for sure then. I am not taking urso in the mean time we will see what the numbers say in September. Good luck to you.

[Hidden]

Had liver biopsy. Liver inflamed. Bile ducts fine. No cirrhosis. . AMA NEGATIVE. when in hospital in Sept. They took tests and AMA was 29. First time ever tested. They told me then was PBC Even second opinion dr said it was odd something happened to raise the AMA when i was rushed to hospital with fever sweating chills. Tests went awry.

[GrittyReads in reply to Hidden]

All good luck Shores. But, until I'm proved wrong, I still stick by what I said in my post above, that you need 2 out of the 3 diagnostic criteria for a diagnosis of PBC. Also, given what you say about your rush to hospital, I do wonder that the PBC bods (and others) are not investigating the effect of stress on the action and activity of these autoimmune antibodies. I know deleterious effects on the adrenals are supposed to be behind a lot of thyroid problems. Peridot has the right approach - for all I know I'm making myself ill by getting so angry about it all: not that there isn't enough else to get angry about right now!! Take care.

[Hidden]

Thyroid hyper and hypo is another topic I won't even get into here. My anger at an arrogant endo is over the top. Thyroid affects everything. All I am saying in regard to PBC is six months and a liver biopsy later my AMA states NEGATIVE! Liver inflamed diagnosis NASH - What affected it initially will we ever know. I have the QUEST LAB PROTOCOL determining what is and what isn't PBC I am in US and do not have socialized medicine YET-

[Hidden]

FIBROSURE TESTING IS USED INSTEAD OF LIVER BIOPSIES TO CHECK FOR LIVER DAMAGE