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PBC Foundation
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Liver biopsy is it necessary?

So, I’m sitting in the hospital waiting for someone to come explain what’s happening today with my biopsy but I’m debating if it’s really necessary.

I’ve had an ultrasound and a fibroscan, both have shown no damage as yet but bloods are clearly indicating PBC. I’m scared and not sure I really want this, what the views of others out there? Necessary or not? Does it hurt? Is it dangerous?

Views greatly appreciated. I’m in the uk so an NHS proceedure, in not the greatest of hospitals.

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Think it would depend on whether your consultant needs a biopsy to confirm diagnosis or if they want to rule anything else out.

I was diagnosed just from bloods - AMA-m2 was over 3000 and had high alk phos. And the consultant said at the levels they were there was no doubt. But speak to a professional before making any decisions.

Good luck.

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Thanks

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My ama m2 was 30 range from 0 -20 or 25 above that is positive but still positive and my hepatologist says is not pbc since my a alk phosphate is normal bilirubin normal too but my liver enzymes ast liver enzyme is elevated 80’s the other one is normal he didn’t want to do biopsy but I’ve been having elebetaed liver enzymes since my 20’s probably earlier Than that but started to feel the symptoms and the trouble that pbc gives you but still actually looking for the doctor who wants to help me and find out why I’m sick, was in bed for 3 months and half with all kinds of symptoms fatigue, dizziness, muscle and joint pain, dryness in mouth and troath, weight loss etc. I guess doctors don’t want to confirm a disease if they don’t really see high numbers that’s what I’m seeing, like over 300 hundreds or over 500 hundreds or something or maybe my doctor is waiting for my alkaline phosphate go up or something it’s really hard for a doctor to understand us the situation that we are going through but it’s tough.

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I was diagnosed by AMA- M2 & ALP. My GI does not prefer biopsy unless he sees a need. He does fibroscan. Hope all goes well for you. Let us hear😊

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Both my GI & Hepatologist recommended a biopsy for diagnosis. In US, fibroscan is not prevalent & biopsies are the "gold standard" for diagnosis & assessing liver condition.

It was scary to me, but the anticipation was worse than the actual procedure. I was totally out under general anesthesia.

Did this in a hospital & there were enough personnel there to handle situations that may arise. There were 2 nurses, 3 doctors (anesthesiologist, surgeon & resident), technician as it was sonogram guided so surgeon can see where he was taking the samples in liver.

Take deep breaths. It will be over before you know it. One minute I was awake, the anesthesia took over by the time you countdown from 10.

Sending positive thoughts your way.

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I was awake for my biopsy. Once the biopsy started it was quick. They said they couldn't put me to sleep to do it because I had to take deep breaths before each piece was taken. Practiced breaths beforehand and had to do it exactly the same during the biopsy so they got the right spots.

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Wow that sounds scary. I didn't know that they do biopsies like that. I just thought that they put you totally under. Maybe in my case, they used the sonogram so they can see where they are taking specimens from.

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Yes the sonogram guides them

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I'm having mine done Jan 3rd in Hospital also my new doctors said even though I had a fibroscan done my enzymes are high and that's why he wants a liver biopsy they said they're going to give me some kind of a Twilight so I think that should be okay I'm really nervous about it so I'm glad I read your post how many hours did you have to stay that day before they let you go home they tell me I'm going to have to stay at least 4 hours

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It used to be eight hours, but now it's four. Maybe that's because now they run the blood tests to see if you're a bleeder or not. My doctor used something to numb the area and I was awake, so I could take a deep breath each time he took a sample. First one was for PBC and the other one for AIH. Both were positive but the biopsies were no problem for me. I am so sorry he retired. I wouldn't trust just anyone to do it.

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I'm with the new doctor he seems qualified he doesn't so biopsies anymore so he sent me to the hospital to get it done I'm really nervous about it and have been avoiding it but my enzymes are high my sedimentation rate is high also and CRP high I went for the blood tests yesterday to make sure it's okay to do the biopsy

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I did the biopsy very early in the morning like 7 or 8 am. I remember eating at a restaurant around 2 or 3 pm because I was starving.

It was fine. I didn't even take any meds after. I was up & about the next day as usual. But they put me totally under.

One minute I was awake & alert, & the anesthesia kick in almost immediately. Next thing you know I was in the recovery room where the nurse woke me & gave me crackers & ginger ale. The worse thing was having to lie on your side for a few hours. I couldn't stay still & the nurse reprimanded me to lie on the side as I was moving too much.

Don't worry; sounds like you are in good hands. We have excellent doctors & facilities in the NY metro area.

Buy yourself something nice afterwards. That always makes me feel much better.

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Lol I work for a clothing styling company maybe they will give a style box lol

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Go for it! 🤗

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Oh...my doctors don't do biopsies either. A surgeon did mine. I was very nervous. I never even met the surgeon but I told my PCP his name & they are colleagues. PCP told me surgeon did hundreds of biopsies annually & not to worry. He joked, tell him you are my patient & that I want him to take extra care of you. I actually told the surgeon that. Lol.

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I have never had one and would want a very good reason to do. But reading other people`s experiences it seems that in some cases it is deemed necessary for diagnosis but for me the liver function tests have been enough.

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Thanks everyone, I actually declined it in the end, too many mistakes before I even got to room. They had a gallstone removal consent form on my notes, signed by someone else and not my procedure, forgot to take very important blood clotting factor test, at one point I think they actually forgot I was there. The warning signs were too great. I’m going back to gp to get referral to a better hospital/specialist, then if they agree it’s necessary, I will go for it.

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Thats terrible that happened! I would definitely get the biopsy it rules out everything else and gives you the diagnosis and stage here in Michigan its the protocol to diagnose. Good luck with the next one and stay strong.

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Good judgment call! Go to the best facility you can. Ask the surgeon how many biopsies they have done in the past & what complications encountered & resolved. Get a sense of how competent they are so that you have confidence when they do this biopsy.

Keep us posted.

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Sylvia, where do you live? I too have refused their biopsies. 2 gastro's have fired me due to this. I am in a state where they now have the fibroscan and am having it done 12/21. There are only 4 hospitals here with this machine and my doc agreed that since I have all other tests positive for PBC, no need to put my liver under more stress with a biopsy :)

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I live in the uk and there is a fantastic centre in London that I’m going to try and get referred to. My local hospital just doesn’t give me any confidence. I’ve had a fibroscan which showed no damage, so at this point in time, I just think it’s a nice to have not need to have and I’d feel more confident if a dr who understands the disease tells me what I do and don’t need.

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Good thinking. A lot of times if u don't check into things it can be missed or something else. I know i had pbs in 2011, but was not dx till 2015. I remember my dr. Telling me mi mitrochondria Ama was abnormal. Chalked up everthing to depression.

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Mine was so easy. Took all of 3 minutes. Gave me a small dose of valium I fell asleep and within 5 min Back in room. No pain ever. Never even knew it was done. I wish you the same!!!

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If they put me out I’d have had it done but being awake and with all the other errors, I just thought it’d be better to go elsewhere.

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Hi sylvia, this is only my experience. I attend a great hospital and top doctors so I can't fault anyone. I had a biopsy done over 7 years ago, nothing significant found at the time but I did have an episode (for want of a better word) a few hours after the procedure. I was doing very well up to this point. I began to feel very unwell like I was going to pass out which I did and woke up to a team rushing me for a ct scan as I had facial symptoms that were similar to a stroke. Thankfully it was nothing serious. Long story short I've always suffered from fainting episodes so this may have been just a vasovagal episode but no one is prepared to do another biopsy on me unless it is completely necessary. I have had ultra sounds and fibroscan done so happy to go with the non evasive investigations unless I'm forced into another biopsy. I may not be able to avoid them forever.

Again, this is only my experience and many people have it done with no reaction. Best of luck.

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I was at the Royal Free and they were amazing. The biopsy did not take long. It was a quick procedure . I then rested for four hours I did not have to lie flat or on my side so I was not uncomfortable.

I hope all goes well with you

Miriam x

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Hi Sylvia,

I had to have a liver biopsy to confirm I had PBC. I am AMA, ANA, and just about everything else negative. My ultrasound was normal. My ALP was elevated. I was also very worried about having one also

My hepatologist sent me a message through their portal that they were scheduling me for a biopsy without an explanation. It took me over a week to get ahold of a real person via their phone tree so I could get my questions answered

Ask your doctor or the scheduling nurse exactly what is involved with a biopsy. You have to go without food or water before the biopsy. It is better in the morning. My doctor scheduled mine in the afternoon and then he was late by over an hour

I was awake. My instructions said theyWould give me a sedative. My doctor said he didn’t do that. There were 2 people in the room. They deadened the area. It was done shortly thereafter. I didn’t have any problems or soreness

Just make sure a very experienced person does it My hepatologist sent a resident in and she asked if it would be all right if she did the biopsy instead. I told her no because I read you had to have a very experienced person

The biopsy showed problems with the bile ducts so I was able to start Ursodiol

Ps I have changed hepatologists 😉

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Thanks for that info, I think the dr who was going to do the procedure was a consultant but I also got the feeling he didn’t want to do it, as they’d took me down over an hour late, I was concerned, along with other things, that he’d rush it as running late.

The more I read on here, the better I feel about not having it done. I do think I would like it done at some point but will take your advice and insist on someone who’s done hundreds and very experienced.

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Hi , I'm in the uk and was told I needed a biopsy at my first appointment with hep dr he said that I definitely had pbc but as some other bloods were off he wanted biopsy . I went for my pre assessment and was scared by the numbers on the risk factors, the nurse doing the pre op couldn't tell me why I was having biopsy so I cancelled it and asked for a second opinion with a different hep dr . He was very understanding and explained that the blood work may mean I also have autoimmune hepatitis ( which will cause death if not treated ) and the only way to tell for definite was a biopsy . I had biopsy last week . Only had a local I found it a very painful process the actual biopsy bit was ok it was 4 injections ( or cutting ? ) before that hurt ! I was not allowed to take a deep breath because my lung kept getting in the way ( very hard not to take a sharp intake of breath when they inject you 🙄) the lady in the next bed to me said her procedure wasn't bad she was thin and I'm very overweight so that may be a factor as more fat to push through. Scary after having 15 min obs for 2 hrs , then 1/2 hr obs for 2 hrs , have to lay still and not allowed out of bed at all for 4 hrs , only slight discomfort though . Had to do nothing for next 48hr , no housework , lifting or even going up and down stairs . My advice is make sure there is a blooming good reason for them to do it and as the nurse said to me it needs to be done by a consultant . Good luck x

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A liver biopsy is not needed for pbc. However, if there is a question about also having aih, then it is appropriate. There are way too many gastros in u.s. who think biopsy is gold standard. They are wrong.

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Wow. I am speechless. Glad that you switched Hepatologists. Mine does not do biopsies. A surgeon did my biopsy. Hopefully he didn't let the resident do it as I was totally out, under general anesthesia.

I had both my GI & Hepatologist explained the procedure to me as I was scared & nervous. & my hepatologist had his office arranged everything for me & accomodated my schedule. I did mine really early in the morning, like 7 or 8 am.

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I had clear PBC from bloodwork and no damage seen in ultrasound and fibroscan but I had biopsy to rule out AIH. I go to a famous hospital in NYC and feel I’m getting great care. I was very nervous about the biopsy - procedure itself was like nothing - spent 3 hours afterward in the hospital - all fine - but I was in a tremendous amount of pain that night. Took me a week to feel back to myself again. Glad I had it for a baseline but my post op experience was less pleasant then many I’ve seen here. Keep us posted on how you are doing! Ottley

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Ottley3

May I ask you which NYC hospital? My Hepatologist never mentioned fibroscan to me. Is it Mount Sinai or Columbia Presbyterian or NYU Langone or Northwell?

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Sure! I go to Weill Cornell.

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The one that I missed!!! My Hepatologist did his GI fellowship there. I will ask him about the fibroscan. He never mentioned it to me & I know they have it at his facility since I just googled it.

Thanks!

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