Antibodies

Hi guys. What test determines for definite if you have Pbc?

I have tested positive for M2 Mitochondria EIA,

Mitochondrial Antibodies and smooth muscle Antibidies. I’ve had an ultrasound which showed an Enlarged liver and slightly corse texture. I’m booked for a fibroscan in April.

I saw a doctor this morning (not liver specialist) who said “it’s a good job they found Pbc early and I shouldn’t worry. The fact my liver is enlarged is a good sign as my liver will shrink if it was cirrhosis” but of corse I am worried and I’m sure my liver should not be enlarged. Will the fibro scan show if I have Pbc?

I also have Hashimoto’s

17 Replies

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  • April seems a long time away for fibroscan do you live in england can you get one sooner

  • Hi. I thought that was too long too. I’ve spoke to my Gp and he said that’s normal to wait that long :-(

  • Yes I’m in England

  • I dont agree with your gp i had to wait 2 weeks here in ireland i think april is a long time i was so stressed for those 2 weeks dont think i could have waited until april the fibroscan showed i have mild fibrosis was somewhat relieved on ursofalk

  • Wow 2 weeks is amazing. I had to wait 4 months. I thought that was normal.

  • I paid for it privately 200 euro and got a refund from my health insurance

  • Hi LMor.

    I would recommend that you join the pbc foundation. It’s free to join and the compendium is fantastic for explaining everything in layman’s terms. A lot of the info on google is outdated.

    Usually a diagnosis is made when AMA-m2 is detected and/or raised liver enzymes and/or biopsy. You usually have to fit 2 of these and then hopefully put on urso. A fibroscan is good for measuring the stiffness of the liver but won’t give a diagnosis.

    Try not to worry. Pbc is a slow progressing disease and they say we’re more likely to die with it than from it.

    Best wishes

  • Thank you for your comments :-). Google is definitely very scary lol. If a fibroscan doesn’t diagnose Pbc then how will I know? I’m sorry if I sound naive. I don’t have any other tests to come and seeing the specialist two weeks after my scan. My liver is functioning normal at the moment which is very good news

  • Was there a reason they did the scan? Usually, it’s picked up with raised alk phos and then an ultrasound. Not everyone with positive AMA go on to have pbc.

  • I saw a gastroenterologist who did a whole panel of bloods. The antibodies showed on them. I have autoimmune thyroid disease as well and I know once you have one autoimmune disease you are likely to have more :-(.

  • It may be worthwhile to contact your gp just to get some confirmation on whether you have pbc or not. Try not to worry too much as you probably already know how stress effects autoimmune conditions. I would think that if they are confident that you have pbc then they would prescribe urso. It’s probably good to start on it as early as possible.

  • In the US, a definitive diagnosis is a biopsy. I had elevated LFT's, and the smooth muscle & mitochondrial antibodies, but that only suggests a liver issue. Hepatologist did a whole bunch of blood tests to rule stuff out before he told me I needed a biopsy for diagnosis.

  • Talk to the PBC Foundation - link at the top of the page. Their advisors are wonderful. Also they recently published the summary of the detailed and finely worked out 'official/formal': Guide to diagnosing PBC, that was produced by all the leading UK PBC Specialists, and is aimed at all other medics, from GPs to less specialised general-hepatologists, liver consultants and Gastros, who often find themselves out of their depth with PBC.

    Angel b is right - both according to this new official diagnostic guide, and my own experience having been wrongly diagnosed with - not everyone with AMAs has PBC: in fact, you cannot be diagnosed with PBC just on the presence of AMAs - some people 'just have' AMAs, I am an example.

    However, it may be that your GI did do the other blood tests that would form the 2nd positive test of PBC, but has not mentioned them to you.

    Normally you need 2 out of 3 diagnostic criteria for an official diagnosis of PBC:

    1) presence of AMAs ... and/or:

    2) abnormal blood/liver function tests (lfts) typical of PBC .... and/or:

    3) a liver biopsy.

    If you only have 1 or 2, then a biopsy may be done (although it seems a fibroscan is often, now, done instead - I'm not sure about the accuracy of this). However, AMAs alone are not enough for a diagnosis of PBC, and about 10% of the population 'just have' AMAs and never go on to develop PBC, although annual bloods have to be taken ever after. If you have only 2, then bloods would be closely monitored and lots of other tests and checks done for other autoimmune and liver conditions. But the combination of 1 and 2, are enough for a diagnosis .

    I would ask for a copy of all you test results, just to see if the liver/blood tests did give evidence of PBC.

    However, it is good that there is to be follow up, although if your Specialist definitely thinks you have PBC, then you should be on Urso while you wait for the fibroscan - I also am surprised at how long you have to wait.

    Do please look at the 'PBC F' website: loads and loads of up-to-the-minute and understandable info, and their advisors are lovely.

    Take care,

    Gritty

  • My liver specialist who I saw in November didn’t arrange my ultrasound. This was done by my Gp on a completely different basis (so he doesn’t know about my enlarged liver) When I saw him in November (before the ultrasound) he ran more bloods and arranged for a fibroscan (liver function is normal and I do have a copy of the results) He said that he doesn’t want to document me as having anything as my liver function is normal at present. I received my appointment a couple of weeks later for my fibroscan in April. I think this is way too long to wait but my Gp says it’s normal timing. I saw a combined consultant yesterday who’s words were that it’s a good job they found Pbc early and I shouldn’t worry and to wait until I see the liver specialist again. I haven’t formally been diagnosed as yet so hence why I was asking the question about how it’s confirmed.

    I haven’t felt well for around five years with a list of so many symptoms. Lack of energy and exhaustion is one, along with aching joints, headaches, memory loss and brain fog, sickness, diarrhoea, nausea, light coloured stools, yellowing of the skin which comes and goes, constant uti’s (I had a stone removed last year) Scanty periods along with heavy periods, migraines with aura......the list goes on!!

    I paid for private tests for my thyroid which confirmed Hashimoto’s and I’m now on medication. (Since August).

    I know my body (as we all do) and I know something isn’t right. I really don’t want to be ill anymore and I’d rather know and deal with whatever the situation brings. Thank you for your responses. They are all very helpful and much appreciated x

  • My fibroscan will be once a year. May I ask why you think from November to April is too long?

  • Because it will be the first one I would of had and I’d like to know what’s happening to my liver sooner rather than later :-)

  • I misunderstood. I thought you had already had one is why I asked. 👍

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