Have you had a liver biopsy just after PBC diagnose?

I got diagnosed with PBC Dec 2010 following 8mths of various blood tests, an ultrasound scan and then the antibodies blood test (AMA high titre, ANA none present).

I now wonder why some of you on here then go on to say you have a liver biopsy booked.

I've not considered having one if asked in future with the diagnose of PBC due to the fact that apparently the area that is biopsied could assertain a different state than other areas of the liver.

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  • I havent had a biopsy. My gastro never mentioned it and by the time my liver specialist spoke about it I had decided not to bother with one unless they could tell me why I would benefit with it.

    Its my understanding that the main thing about biopsy is to stage the PBC. But as you rightly say all it would do is stage the bit of the liver that was actually biopsied and might not be the overall stage of the liver. And the other thing is no matter what the stage all you would get is urso. So until they can come up with a good reason for me to have one I am not going to request one. :-)

  • I agree with you and zipitydoo. My Gastro doctor said it may or may not reveal anything. It's mostly done to stage or diagnose liver disease. Guess every PBC patient has to figure out if it's beneficial to their individual case. Take care.

  • Just a thought - It may vary according to how bad it looks on the ultra sound. I think there are a few reasons why they might do a biopsy. Talking purely from my own experience, the ultrasound looked really bad and they told me it looked like it was cirrhosis. I then had a biopsy, taken in 3 places, which came back with the news that it was badly inflamed but it was not cirrhosis but the cell changes were PBC. A year on URSO and all the inflamation was gone, so in my case it was very useful.

    As a footnote my liver biopsy was not that bad, the worse thing was the local (as is often the case) and afterwards I did feel like I'd been used as a football for a couple of days. But really no big deal.

  • Just to make some feel a bit happier about having one as I was terrified, I wash taken down to X-ray was chatting to the nurse and hey presto the radiologist had done it, I was lifted into a bed and left to relax for 4 hours and then told I could lie on my back, apart from the bood pressure checks i wasn't disturbed, so nothing to be afraid of and it didn't hurt :o)

    XXX Linda

  • Hello Linda.

    Didn't know you had had a biopsy at some point.

    Your experience of it sounds what I think we would all wish in event of but I think it varies from Health Authority to Health Authority (UK, the NHS if anyone else is reading from US/Australia or elsewhere).

    I definitely do not think that would happen in the Health Auth. region that I am in somehow.

    I found the ultrasound scan enough in 2010 so if that is anything to go by.....!?

  • Hello all.

    I know I'd def NOT request a liver biopsy. I'm not squeamish or anything like that but I'd hate the fact of having to go into hospital even for a very short time.

    I think the reason I became more curious about liver biopsies was the yr I was having itching (2010) before diagnose of PBC I found online a sort of pathway that doctors use to rule this and that out in the case of abnormal LFTs. The antibodies came before the question of a biopsy if it could be determined from this test that a patient had PBC (if that suspected).

    I know around the same time I had the antibodies test and awaiting the results (only took 2mths), saw a programme on tv with 2 people on some chat show. One was a man who was quite overweight and the other an early 50's man who drank very heavily. There was an ultrasound in the studio and according to the liver specialist who went thru both scans with each man on air, it apparently clearly showed to him that one had a fatty liver (the overweight man) and the 50+ man had visible signs of cirrhosis so in my view back then it was possible to tell.

    I know what annoyed me more after diagnose was the fact the 50+ man could have halted his cirrhosis by ceasing drinking and it may not have progressed further though his health may have been compromised thru it whereas I think with PBC once you hit a stage like that there's nothing really we can do about it regardless as like the unknown, just don't know how it is progressing as believe you can live with cirrhosis for a long time.

  • My health authority, thats a laugh, you take your life in your hands here, they know nothing whatsoever, hence the biopsy as they hadn't a clue what it was, I think it was almost 2 years ago I had it ( could be longer) and I have only just been told that the result was sever PBC and I was just brushed off with OH you have PBC I wouldn't worry about it too much, before that they diagnosed cancer and after a big op they said a miracle had happened and it had gone, they also said they had removed an ovary, thing is I didn't have any ovaries, it's like the goon show here. :o)

  • Linda - I do hope that you changed "health authorities". I had a Dr. tell me one time, after spending a week in hospital for pneumonia, that the xrays showed that it was cleared up > I hadn't had any xrays!! Signed myself out of the hospital and didn't go back to him.

    As for the biopsy - I had 2! The first one was when I was originally diagnosed with PBC but I didn't understand what it was all about and the Dr. was joking around about taking the Urso - "You know, like the star constellation - the bear." Then he said something about the meds being like bear poop and needless to say I didn't fill the script. lol. The biopsy itself was not a big deal.

    The second one was about 2 years later when my new Gastroenterologist/Hepatologist put me thru the paces. Blood work where they almost left me some - lol -, ultra-sound, biopsy, and later Endoscopy/Colonoscopy. When the Dr. told me I had AIH with PBC overlap syndrome stage 3, I asked him how bad was that, and he said "It's bad." (??) Then something about 85%. Never did totally "nail him down.". The bad part was I really liked this Dr. -:) The biopsy I had that time was an absolute piece of cake. They did the diversion tactic as they did with you, Linda.

    Ya'll take care -:)

    Geri Ann

  • Hello again LInda.

    Sorry to read you got misdiagnosed originally.

    So this means that the Health Authority I'm under actually did something right with regards to an antibodies blood test before the doctor deciding to say he'd like to undertake a biopsy.

    The ovary scenario (for want of a better word) that sounds like my sister being called up for cervical smear when she's no cervix.

  • Well at least they knew what was wrong with you and that gives them good marks for a start. it took my goons two years and then they needed a biopsy.

  • Hi Peridot,

    I did have a liver biopsy, but actually I'm not entirely sure why. I had already been diagnosed with PBC, was symptomatic, and AMA antibody positive. They just took one sample, reconfirmed PBC, and that was it. They gave me the biopsy report, and reading between the lines, it looks like the sample was at stage 2, but given the choice again, I'm not sure I would have it. As you say, that was only one part of the liver, I don't know what the rest was like. The biopsy was no problem in itself though, except i had to spend the night in hospital!

  • Hello Beanie.

    I have read on here about a lot who have had biopsies and then mentioning a stage.

    After I had started various blood tests during 2010 and stumbled myself across PBC (internet and library medical ref books on liver) and thought I might have this but obviously hoped I hadn't after reading 'no cure' and various other things, I came across an American site that had a patient called Emily who at the time had the itching that I had and fatigue (I shrugged the latter off due to work). This Dr Palmer in the actual short video talking to the patient mentions biopsy and then it comes into the results (the video is just chatting) and apparently a doctor stages PBC one over so to me is it really a true reading?

    I'm still unconvinced biopsies are the right way if it is known a patient has PBC and I thought fibroscans were now being used to avoid biopsies.

    liverdisease.com/pbc._hepat...

  • I did have a biopsy 11 months after blood test showed +AMA. Only did it to stage PBC and only because it was done laparoscopic the same time I had lap band removed. They took 3 samples (2 wedge and 1 punch from right, left middle of liver). 2 samples showed stage 2 and 1 showed stage 3.

    For me I would not have had a biopsy done if not already going through surgery anyway.

  • When I had my biopsy done, I felt like I did not have any choice. I am a wee bit different because they originally thought it was AIH due to +SMA and not PBC due to -AMA, however, my biopsy showed PBC. The consultant was shocked as my antibodies and bloods were saying AIH and the biopsy was saying PBC. Over the last few months I have been treated with drugs for PBC & AIH and I am doing well. My LFT's are all normal and I am looking forward to coming off the steroids.

    The biopsy was not as bad as I thought so if needed to do it again I would but I don't think there is much point unless my bloods start to deteriorate again.

    Take care. x

  • I think regarding this subject now, as zipitydoo put it, if known we have PBC then what exactly would a biopsy achieve if we get the urso anyway regardless (doubt consultants in the medical profession would agree here) and quite rightly so at present there is no way to flick the switch off and totally halt the progression (as I know if that was to happen we'd still have what damage was started in the bile ducts).

  • Tumbleweed, There isn't a choice to change health authority that I know of, from my GP everyone is sent to Gwynedd hospital and from their back to Llandudno hospital for the clinics and that is also gwynedd health authority. the next one is clwyed and you need to be registered to a gp in that area. Neither of them has a Liver specialist anyway only gastro ones. I believe there are only two people been diagnosed in this area , why the hell am I one of them, why me, why any of us, what did we do to get blessed with this and it makes me so mad that no one is bringing it to the fore front as though we are at the back of the que, sorry felt like a moan :o)

    XXX Linda

  • Hello Linda and yes you are right (I suspect tumbleweed isn't living in England?), not a chance to change the actual Health Authority unless we re-locate to another area to live.

    I know when I originally got the Choose & Book letter for what I was led to believe was for Hepatology Dept (but turns out it is Gastro-enterology with a kidney dialysis unit) I only had the choice of 4 hospitals to go to. I checked online with the NHS site re where you could go and this being my very first experience and a total novice with hospitals I asked why I couldn't attend a different hospital I had spotted online which I would have gone to. I had to go thru the GP Practice Manager then and she informed me that their practice didn't have that on the list as they sent me the Choose & Book details.

    At the end of the day I think regardless of which hospital you go to, you'll find the consultants visit different hospital out-patient clinics on different days so basically you'll see the same one anyway! Reason I was prob better choosing nearer home rather than travelling out elsewhere.

    As far as I am aware for Lancashire people the nearest hepatologist and liver unit would be St. James in Leeds. Don't know where yours would be but know there is one in Birmingham. There seems more further up North (Newcastle for one).

    We should all be like the film/pop stars and others I can mention who are 'famous' who can afford private treatment but I won't go there!

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