Biopsy yes or no?

Hi I keep reading on here lots of comments that here in the uk they tend not to do biopsys for diagnosis. Not true. It all depends where you are. I have high AMA's & ana's and they are still insisting that I have one for diagnosis. Even though I've been on urso since March. I've refused two thus far & they are getting angry with me. I can also ( & have when they listen) ticked the box to lots of the other symptoms on the list. So on my illnesses summary letter. It is still marked as possible PBC. I don't want the horrible thing. I've had 8 ops (for another condition) in the last 6 years the last one of which went wrong and caused a 6 month recovery instead of 6 weeks. So I am very reluctant to have anything else for what ever reason done. Has anyone any advice on how I can get over this hurdle either practically or mentally? X TB.

26 Replies

  • Teddy Bear,

    Please call us.


  • Sorry Robert if I've offended I'll remove the post honey. X

  • No offence at all, TB.

    It was an offer to help with your own circumstance, to talk through your issues re biopsy, why your doc is insistent and how we can empower you to deal with that in the best way for you. :)

    Generally speaking, liver units in the UK will not biopsy as a diagnostic tool unless there are clear uncertainties. Some hospitals still push for biopsy but we are engaging with them to change this practice.

  • Oh sorry Robert wrong end of stick. Lol. GP is quite supportive and can understand that perhaps it's not required. It's the gastroenterologist that's insisting. GP has written to him I believe with no avail. My real problem is that I won't be getting a follow up appointment until I have one. So I'm in a catch 22 situation. My 2 refusals to be fair have been for genuine reasons. I run a business and have to employ someone to cover me & they haven't been giving me enough time to arrange things. So I'm in total limbo. I've been to one of your sessions in Leeds and with your help have self educated changed my lifestyle and seem to be doing OK. So I suppose until I change colour and start taking on fluid I'll be OK for now. It's just frustrating.

  • The biopsy really isn't that bad, honestly. But I can understand if you don't want to go through it.

    I was only out of commission half a day for my job, and I'm the supervisor, so imperative I'm there.

  • Thanks for your kind words, wish it was as simple as that. Here I have an hour's travel, not allowed to drive, can't be alone for 48 hours & have to convaless for two days. Plus an hour's drive day before for blood work first. So that's cover for 4 days.!!!! Seems like we're still in the dark ages here.

  • Wow, thats a good reason to avoid it. I wanted to know my stage, and my AMA wasn't as positive as some peoples, so I really needed one. My ANA is high too, so it could have been other things. I'm sorry you don't have access to a quicker procedure.

  • I had a biopsy and it only took the afternoon. I was takin in and picked up but I was driving the next day. I guess I was lucky that I had no problems with it. I live in the south East, England. So did it need to converless for two days either.

  • Goodness spelling bad on my reply I meant taken in and did not need to converless.

  • I've kind of realised in my head that it's got to be done but because they haven't rescheduled I'm in limbo at present. Don't know what's going to happen now. Thanks for your reply x

  • I had a biopsy also. I was quite worried about having it done but in the end It was no problem. A few hours in hospital, told to take it easy for a couple of days. Everything at the hospital was explained to me and the surgeon/nurses were extremely kind. Think my consultant wanted it to absolutely confirm I had PBC and what condition my liver was in. I think because it is an invasive procedure we all worry. I would have no concerns if I ever had to have the procedure again - although obviously hope I don't. I had mine done St.Marys Hospital - Isle of Wight.

  • Thank you xxxxx

  • Hello teddybear7.

    It does seem standard in UK for a patient with symptons of PBC (ie itching and at the time fatigue that I had during 2010) plus abnormal LFTs that are continuing to rise and then a positive high titre of AMAs as I had not to have a biopsy following. I asked the gastro at the hospital when I went back to see him within 8wks of being informed I had PBC (he relayed it to the GP to inform me Dec 2010 and prescribe urso). He said that biopsies weren't necessary if a patient had symptons and an AMA.

    Now the only thing that stood out for me teddybear7 with regards to your posting ws that you stated you also have ANA which as I understand can be something else so maybe the biopsy would be to check whether it is one or the other? Really the only reason a doctor would offer a biopsy is to give a definite diagnosis if there is any doubt as to whether you have something or not.

    I know in your shoes I'd more than likely be the same. I know I'd no inclinations to have a biopsy but I can't say if I'd have agreed if the AMA test hadn't proved of a 'high titre' for me. I have negative ANAs.

    At the end of the day it is your decision but the only thing is that it may affect your doctor's decision in which way to go with regards to how to treat you with the symptons you have.

    At the end of the day it is all ok for someone to try to put themselves in your position as it isn't that person who is in that situation.

  • Hello teddybear7 - the biopsy will let you know what stage you are. i was told to have mine done right away. The reason being that if you are at a later stage they will start you on ultrasounds every 3 months and MRI's twice/year. It's more of a surveillance tool to make sure it hasn't progressed to liver cancer.

    I did not want to do the biopsy but I did. It turned out to be stage 4 after being diagnosed 1 month before. It's a way for you and your doctor to monitor the disease. Medication helps but it doesn't tell you if the disease has progressed into another stage.

    Some people don't want to know and knowing is kind of scary but when the test comes back clean i do feel better. If they don't then you get in line for a transplant. It all sounds scary and sometimes I just want to hide under the covers and forget about this disease but being proactive has made me less afraid and able to move forward.

    Everyone is different. For myself I would rather know where it's at than wonder. When you're ready you'll know.

    Good luck!


  • Hello All, sorry I've had a key board problem and it kept throwing me out and after a long reply it became really tiresome.

    So I shall sum up in one last post I think.

    Firstly thank you all and everyone of you for your posts of help and support with this.

    I have come to the following conclusion.

    As I can't see a gastro again until I've had one I have no choice but to have what I (and this is a purely personal thing) think is a pure waste of time, invasion and cost to the NHS.

    I don't believe I need it for diagnosis, I have too many other things that confirm it already.

    I don't believe I need it for staging. When my symptoms worsen and I start going jaundiced then I think that will say enough for me. (remember this is a purely personal decision).

    I am already on 900g of urso and the prescription gets renewed every time.

    I have lost 3 stone 2lbs (intentionally) and adopted a very healthy low fat diet. This has got rid of one of my symptoms.

    I have realised that I am better off without any alcohol at all. I have no urge to drink and the smallest amount makes me really poorly. So I am now on the wagon.

    I also suffer with fibromyalgia and have undertaken therapy to help with fatigue as this is a crossover.

    I am not happy with my gastro as he has not explained anything about PBC what to expect what to look for and not interested in my list of symptoms. In fact dismissed one of them as being caused by something else when it is actually on the PBC Foundation list.

    He would not listen when I said I had lost my weight intentionally and sent me for a endoscopy of which I deemed unnecessary of which I was proved right.

    I have no confidence and have little faith. Perhaps this is adding to my reluctance. I am getting a little peeved when instead of telling you what you really want to know you are presumed to be as thick as two short planks and not capable of understanding. I feel like a mushroom.

    Sorry rant over. I will be contacting via my gp As thankfully he understands and we'll see what happens next.

    Wishing you all well as can be. x

  • I don't know about ANA so don't know if having a biopsy helps when you are ANA positive. That aside, biopsy does not help with staging PBC. My specialist explained that a biopsy only takes a bit of liver tissue from a small area of the liver. That area of the liver may show no damage but another area may show some/more damage. Think of it like an apple going bad. You can see the rotten bit, the rest isn't so bad. So if you took biopsies from a few different sites in the liver you could end up with a few different stages. It isn't used for diagnosis of PBC here in the UK so I would question that.

    Kind regards


  • P.s. And it would seem you are being denied treatment unless you agree. That's shocking!

  • I have just had a letter yesterday. They have booked me an appointment!!!!! Wait for it December 11th........ I am now in the process of writing to them. As you can imagine I'm not happy.

  • It's possible they're concerned about Autoimmune Hepatitis, which positive ANA could indicate. And it is standard procedure to biopsy for AIH to confirm. It's important to rule AIH out, as it's much nastier than PBC, and you'd need steroid treatment to knock it on the head.

  • Oh dear, if that's the case, why then don't they tell you what they're looking for instead of only telling me half a tale? AHI has certainly not been mentioned. And I think it's highly unlikely, if it's so nasty why leave me 9 months between appointments. & I'm not taking steroids. I'm not risking putting all this weight back on after just working so hard to loose it. Well all that above is what my head is telling me . let's see if they tell me something different cause I've written to them so if they want to check for that then they should tell me. I hope. Not quite sure if I should be even more worried now.

  • It does seem as if they're treating you like a child, when I suspect what you really need is a decision that you're actually party to. How are your LFTs? Has your ALT been raised at all?

  • No idea honey. They take bloods but don't tell me anything. Found out that there was ama's by learning about them on here & asking gp if they were present. X

  • OK. Well, if your ALT is ok but you have positive ANA, it could be lots of things. So I could be worrying you over nothing.

    I'm just suspicious about why they're pushing for a biopsy - that's unusual in the UK, as there's widespread agreement that two out of three of the diagnostic criteria is good enough to say 'probable PBC' and prescribe Urso (1. abnormal liver results for more than six months, 2. positive AMA, 3. evidence via biopsy).

    I think you need more information to understand why they're only willing to say 'possible PBC'. I too have suspected PBC, but that's because I only have positive AMA with normal liver results (although I also have symptoms, which is keeping me on my liver unit's radar). I could have a biopsy if I wanted to, but I don't want to for now - not until my liver starts throwing out hairy results. I'm not on urso yet either.

  • I have written and had a smashing reply. I don't have to have the biopsy. It was a great response confirmed my thoughts and answered all my questions. Keep taking the urso & we'll monitor by bloods 6 to 12 months. Suits me fine happy bunny. Xxxx

  • My gastroenterologist would like me to have a biopsy. I said no I really don't want one. He would like to see how much of my liver is dead.. I'd rather like to believe it's just a wee bit so then I won't worry too much. I live in Canada, have no one here to compare. Anyhow not knowing is helping me at the moment, not ready for the results yet.

  • Thanks for your reply optimistic 8. It's been a while since I put this on. I ended up sending a rather long letter to my gastro and he hasn't done the biopsy. I have met with him for my annual check up last December and he's fine with not doing one although he hasn't ruled it out totally in the future. Should I get a bit more poorly. That suits me fine at present. X

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