Why a liver biopsy?

[kaywire]

My "consultant" said last time I saw him he'd like to do a liver biopsy. What benefit is that to me`? I can understand his wanting to do one for his records but I don't really want to know if I'm stage 2 or 3. Also I read here that someone had to lie on their side afterwards for several hours. As I have fibromyalgia and suffer from a lot of other mysterious pains it would be virtually impossible. Would it be daft of me to say I didn't want one?

[Hidden]

No, not at all, i have turned down CT scans in the past as i felt it to be of no benefit. Its your body, you must do what is right for you. And yes you will have o lie down still for several hours after. Perhaps you should write down a list of pros and cons to help

[Magnolia]

I've had two, and turned down an offer to do another. I do wonder what stage I am now and would like to know. My last one was in 2003. The time laying on my side didn't seem long at all for me. It's just that I had pain up in my chest afterwards, for some reason. And my BP drops low, which makes me feel weak. I also have fibromyalgia. Maybe he would like to know if he needs to change your medication, by staging your PBC.

Magnolia

[SuziS]

I had a blood test, which is apparently new to the UK, about 3 months ago and it also tells what sort of damage your liver has sustained. I was offered it instead of a biopsy.

[hannah1973 in reply to SuziS]

Hi

Do you mind me asking what the test was exactly ?

Thanks Hannah

[Hidden in reply to hannah1973]

Normally the GGT aong with the LFTs are calculated to assess liver inflammation. I am in the UK and I presume this is the blood test that SuziS could be referring to?

The GGT is one that is apparently missed according to the gastro I saw. I have the GGT one each time I have repeat bloods and i always mention the GGT when I go thru them with the practice nurse just in case.....even tho' I have had a few debates about them previously as the GP didn't make the notes clear!

The AMA blood test is the antibodies for mitochondria that if positive along and if symptomatic at the time (ie itching and fatigue to mention the commonest two) would give a diagnosis of PBC without a biopsy needed.

[Juamcc in reply to SuziS]

What did the blood test indicate?

[SuziS]

I am trying to remember

[JennerLayne]

I too wonder about the benefit, Kaywire. I am recently diagnosed (last month) based on the AMA and other blood work, and my doctor wants to schedule my first biopsy in a few weeks. Although I somewhat want to learn what stage I am, I'm relatively frightened of hearing a specific number. I fear becoming more depressed about the implications of this disease, getting physically weaker and know that for me, attaching a 'stage' may cause more emotional stress. I don't feel too bad physically right now, but if it is further advanced than I feel, I think it could negatively impact my outlook on the future. Does anyone else go through the 'stage # mind game" of getting a biopsy?

[Hidden in reply to JennerLayne]

I've not had a biopsy and was diagnosed with PBC Dec 2010. I had itching and fatigue when I first went to the GP early in 2010. The AMA blood test confirmed PBC later on in the year when I finally got to see the hospital consultant.

No biopsy has been mentioned from the hospital and in event of I have no intentions of going through one, not through being scared of the process, it is the after-effects I do not want as a puncture to the liver still has to heal over and with a compromised liver already, I'd rather not add anything else for it to cope with.

Quite frankly I just do not think about 'stages' as at the end of the day regardless there's no other treatment. In my mind I'll deal with things as and if they come along as for me I'd rather not know and plod on like currently, just wondering but at the same time going with how I feel which at this moment in time I have to say I'm feeling pretty great.

[skippydownunder]

I had a liver biopsy 2 weeks ago to stage the disease and it came back late stage 2 to early stage 3. I was upset with the staging but at least now I have more information. The gastro I had showed no 'bedside manner' whatsoever and could have been delivering the weather report as he gave me the results over the phone. Since then I have changed gastros and am now with the same one who treated my mum when she had liver cancer 14 years ago. He is far more optimistic and has an interest in his job (older than the other guy). I think it is more important to have someone you can talk to about your stage than to worry about the stage itself.

As far as the process is concerned it is very quick. They put local anaesthetic in and then put in the needle and take the biopsy......think it was around 4 clips I felt......and yes it is a bit painful but nowhere near as painful as gallbladder pain. After you have to keep lying on your side, and it does feel a bit like you have gone a couple of rounds with Mohammed Ali, but I sat up after about an hour and had a cup of tea. I then slowly caught the train home as you are not allowed to drive. You will have pain in your right hand side and the first/second night sleeping are a bit uncomfortable but nothing you can't survive.

There is a relatively new ultrasound technology that many doctors think can stage your disease but the doctor that did the biopsy didn't believe in it's accuracy. My new gastro though seems to think it is good technology and said next time we would use that as he has someone that does believe in it.

Anyway, it is only a number.... I am jaundiced so I basically wanted to check on the level of cirrhosis. Luckily, it is only fibrosis which apparently is a good sign. Good luck with whatever you decide to do.

[Hidden in reply to skippydownunder]

Hello skippydownunder.

I have no interest in knowing or finding out what 'stage' with PBC I am. Hence I have no desire to have a biopsy even if was requested now. (I was diagnosed without the need. I am in the UK so it isn't necessary unless diagnosis is to be questionable.) It won't change the treatment of PBC and from what I have gathered over the last 5yrs since my diagnosis the biopsy site and the piece obtained might not be a true picture as the liver is a large organ and can be healthy in one area and not in another with liver disorders. I agree there regarding what you stated regarding the accuracy of the biopsy. But a biopsy is said to be pretty accurate where diagnosing PBC as that is due to cell changes within the liver and not actual damage that is used in these stages.

I am confident that ultrasound can show a pretty good picture of liver health. Saw a tv programme on notso long before I was diagnosed and the 2 men who were having scans in a studio that was broadcast live on tv showed one to have a fatty liver (he was quite overweight) and the other man was in the cirrhosis stage (heavy alcohol drinker).

[Hidden]

Definitely not daft in saying no if you don't want a biopsy and you can't understand fully why kaywire.

I had decided prior to being diagnosed with PBC (Dec 2010) that I'd not have a biopsy if the AMA blood test showed me to have PBC. It was my old GP who reckoned I would have one but I only got annoyed at him. The hospital consultant has never even mentioned the word and from my point of view, I can't see why one would have one after diagnose as it won't change anything nor the treatment.

I don't go in for this staging at all as I am positive that with the blood checks and the scans nowadays it's wholly not necessary in the biopsy. The only plus for the medical profession is they'll still see that you have PBC from one but also the minuses weigh greater in my view, you not only have a biopsy on just a tiny part of the liver that wouldn't be the full picture of the full liver and also you have to recover from the process which might not be major but at the same time, the area that is punctured during the biopsy has to re-heal and to me that's additional strain. I'm speaking here from someone who doesn't actually bother about needles, etc., my problem is someone else taking over my body and me losing control which has been a big issue for me since I was diagnosed with PBC.

You are perfectly within your rights to opt out of the biopsy and even if it's not liked by your doctor, tough. I've managed to upset a few doctors along the way myself and it's from past experience. At the end of the day it has to be remembered that doctors are curious about things and do occasionally like to dig a bit deeper but at the same time some of us dont' wish to go along with it as some do.

[Oidra]

In the 12 years of knowing I have PBC I have never been asked to have a biopsy. I have scans and the consultent said that the last one was normal for someone with PBC ( what ever that is),.

So I would want to know why he wanted to do one, as it is an invasive proceedure which I personally would do my best to avoid unless the reason was to my advantage.

Good luck with this.

[Hidden in reply to Oidra]

As I discovered last year and was only informed on myself asking, there is a different chart, graph or whatever you want to call it for PBC patients. Their bloods are not expected to return to normal by taking urso even tho' some are lucky enough to have LFTs that do return to normal. Apparently as long as the bloods are showing within a certain PBC range then it's considered perfectly fine.

Mine are panning out so far so good.

I know here in the UK it's actually not the norm for a biopsy, it seems to be an American way and as you have said it is something that is invasive and tho' I suspect pretty rare, there can be odd complications. I know for me the one thing that would really bother me the most with this is having to remain pretty still for several hours following, slouching about isn't my strong point anymore as if I put my feet up to relax for even a short period of time I start to feel the prickles of the itch and start to fidget! One reason I remain pretty active throughout the day, bad enough some nights having to put up with the itch (tho' last night I hardly itched).

[witchiegirl]

In the UK, if you are AMA negative, they prefer to do a biopsy, to get a better idea of what is wrong.If you are AMA positive with other features, then a PBC diagnosis is more clear cut. But, as others say, it's your ultimate choice. And it's not a risk-free procedure, though mostly very safe. It may not be for staging that your cons wants it done,as staging in PBC isn't that clear - the features of PBC tend to vary throughout the liver , so you only get a 'stage' for the bit that's done. You should probably ask the consultant why exactly he wants it done/what he wants to find out.

[Debbweb01]

Hi I'm Debbweb 01 on APS/ ANTIPHOSPHOLIPID Antibody Syndrome/Hughes Syndrome, Also have PV/Polycythemia Vera! Two rare thick blood , autoimmune diseases! I WAS DX'd 13 years ago with PV and DX'd recently in October for APS! I was DX'd with PV due to itchy feet! A big symptom of PV especially itching with hot baths! I've been with a Hemotologist and Phlebotomized for past 13 years! After loosing my left leg he tested me for APS & came up positive! I have been telling him for 13 years that my whole body itches uncontrollably & nothing subsidies it! He said not PV! I've been in remission wit PV and told him I've been itching again and mat need Phlebotomy! He tested me in office and TGOD I didn't need it! I said I'm still itching all over my body! I asked him if it was from APS? He said no and if it was it wud be rare! At time I asked him I knew that u itch from APS all over, but didn't have the guts to say it to him in person! Later that day he called me with my INR results and somehow I just told him. He was quie a moment and then asked me if I cud tell him anything else he may not know! I couldn't think so I said no! We go back a long time and in 2006 My Beloved son Jesse Passed Away! Three weeks later on December 27, 2006, I had emergency stomach surgery! DOC said with passing of my son my body just quit and they saved me! I had colostomy bag for 3 months & my DX was Diverticulitis! I'm sorry, I should have put a new post, but new at this! I just realized I'm on ur post! I'm so very sorry and it won't happen again! I'm so sorry for your dilemma, but listen to these wonderful people on this site! They tell the truth, not like the doctors! I've been treated DASTARDLY by medical profession my whole life of 62 years! I was born sick! I'm just wondering what PBC is and since I constantly itch and my Dad had colon cancer, then later on it spread to Liver, shud I ask my docs about this or am I being too silly and reading too much? Thx and GODSPEED TO YOU ALL! BTW IM FROM USA AND ENGLAND seems to be way ahead of USA WITH APS AND PV! I pray u do the right thing and get your answer from these awesome people! Again I'm sorry about this post! Thx in advance!

[Juamcc in reply to Debbweb01]

I'm from the USA to and I've read these foundation in anything about PBC from Australia Ireland England make sure not much from USA. I put it on my Facebook that I was looking for others with PBC and got no reply. I'm slightly concerned about the price of your urso in the US. I'll be in that infamous donut hole by May.