Should I get liver biopsy? Advise and guidance needed.

[Blueandyellow]

Hi! Sorry if post is too long.

I am new to the group and grateful to have found it.

I received a call from my GI doc yesterday saying I might have PBC and wanting to do liver biopsy to confirm it. Needless to say I am super distraught at the moment and have been crying since that phone call as I started researching the disease on the internet.

I have two questions - do you think I need a liver biopsy or is there any other way of confirming PBC? (I'm in the US)

If you think biopsy is a good idea do you think I can wait may be 2 months or so? ( I have an infant and am exclusively breastfeeding and have no help with him, I'd like to wait till he is at least 6 months old and starts eating solids and I can leave him with someone)

Here is my history. I have been having symptoms for nearly a decade - severe fatigue, nausea, RUQ pressure (not quite pain). Liver tests were always normal. During pregnancy I was diagnosed with cholestasis (high bile acids, normal LFT) and put on urso. After pregnancy I had slightly elevated alt (41) and tested positive for AMA. Not on urso anymore.

I guess the positive AMA and symptoms is what makes the doctor suggest a biopsy.

I am scared and any guidance will be appreciated!

Thank you!

[ninjagirlwebb]

Latest PBC recommendations from the American Association for the Study of Liver Disease:

For PBC diagnosis, two of these three criteria need to be met: 1) cholestatic pattern of liver enzyme elevation (mainly alkaline phosphatase); 2) presence of antimitochondrial antibody (AMA) or other PBC-specific autoantibodies, including sp100 or gp210, and; 3) histologic findings consistent with PBC.

AMA-negative PBC can be diagnosed without a liver biopsy if other criteria are met, including cholestatic liver tests and PBC-specific autoantibodies such as sp100 or gp210.

Perform liver biopsy for suspected concomitant autoimmune hepatitis (AIH) when alanine aminotransferase activity is more than five times the upper limit of normal.

Source: jwatch.org/na47382/2018/08/...

[ninjagirlwebb]

Some people are diagnosed without a biopsy based on the recommendations. In your case, I don’t think it is clear cut to your doctor based on your medical tests/history to diagnose without biopsy. However in the US, biopsies are still considered the gold standard for diagnosis by most hepatologists.

I did a biopsy to confirm diagnosis. Best person to answer your question about waiting to do the biopsy is your doctor. A biopsy only takes 1/2 day at the most. Surely your husband or a family member can babysit? As for breast feeding, you can pump & refrigerate the milk & have the baby sitter feed baby with a bottle?

Don’t cry. You will be okay. Trust in your doctors. You might want to consult with a hepatologist to give you a 2nd opinion about pbc & a biopsy. Though it might be a while before you can get an appointment depending on where you live.

When my GI/Primary care doctor asked me to do a biopsy, I refused. So he sent me to a hepatologist who convinced me about doing the biopsy.

[Blueandyellow in reply to ninjagirlwebb]

Thank you so much for replying. My son does not take the bottle so it's hard to leave him at this point. I guess I was worried what I'ddo if there was a complication, like a bleed, and I had to stay in hospital longer (you can see my mind always goes to worst case scenario haha). Or if the pain is too much and I can't take pain meds or take care of my child etc. Most importantly I was hoping to hear that I don't really need a biopsy, I guess ... but I understand that this may be the only way to really know what's going on. thanks for your input 🙏

[ninjagirlwebb in reply to Blueandyellow]

You will be fine, but I understand your concerns & dilemma. They test your blood like the day before the biopsy to make sure it will clot properly. & after the biopsy you are in the recovery room hooked up to a monitoring machine to check your vitals. You have to lie on your side for a few hours. They won’t discharge you until everything looks fine.

Don’t worry too much. & if you are doing the biopsy in a hospital, my experience is that they had a surgeon, a resident, a anesthesiologist, a nurse & a sonogram technician in an operating room just to do this biopsy. The anticipation is worse than the actual procedure.

Stay positive. You are going to be fine. Also the sooner you take care of this, you can halt pbc in its tracks so that you can look forward to all the wonderful adventures with your son! 😊

BTW, it was only uncomfortable for the rest of the day but not painful. Schedule it first thing in the morning. Mine was like at 8 am or something like that. I had a nice juicy burger with fries & dessert by 2 pm in a restaurant before I headed home! 😋

[Blueandyellow in reply to ninjagirlwebb]

Thanks for the details on the procedure. I hope I'm one of those that does not experience pain either. You are right, the sooner I get it done the better.

[Ottley3]

Hi - congratulations on the baby and I’m so sorry about the possible pbc. This does sound like you need answers quickly. I would ask your doctor if a fibroscan is available? It tests the “sponginess” of the liver and is non invasive like an ultrasound. If that test were ok then maybe you could put off the biopsy a bit? I had a fibroscan and a biopsy. I’m glad I had both - I’m in NY _ - but I was down for the count for a few stays after the biopsy and was not suooosed to lift anything so if you do get the biopsy could you find someone to help you for a few days? You and your doctor will decide what is the right thing to do, but hopefully my answer gives you some talking points for your doctor. Hang in there and hug that beautiful baby! Ps how are you feeling?

[mrspeffer]

Good morning.... This is a hard spot to be in. I can fully understand the concern you have over breast feeding, pain meds, and general anesthesia. I wouldn't want to risk it either.

With that said, postponing the procedure a few months would probably not be a problem. In my particular situation, I waited 4 years having lots of other tests and monitoring done before I as given a biopsy. I don't know about these other dear souls here, but I had 3 weeks of not feeling so wonderful afterwards. Mostly rolling over in bed was a problem for me. Maybe things have changed and they have found a better way to perform the biopsy. Mine was 20 years ago. Oh course, discuss this with your doctor. I am positive that the 2 of you will come up with a plan. The only thing that would happen in delaying the biopsy would be the delaying of URSO if the diagnosis is PBC. With that said, I do not take it and have a clear liver as of now. So, things may not be as urgent as you think right now. Take some breathes and let things fall into place. Talk to us....that's what we are here for....M

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[SSMPCW123]

I have heard of this occurring

during pregnancy. I would check

with a doctor about all special blood tests first

and I would wait on the biopsy

if it were me. But I am not a doctor.

[Ellyne]

I had a trans jugular biopsy and I was an out patient. Start to finish was a few hours. I had no pain and no discomfort.

[JohnMalaney]

Hi I’m in the U.K. and have moved hospitals several times as I’ve moved around for work. We were expecting my wife to be given a biopsy but our first consultant actively advised against it. His view was that a biopsy only confirms scaring in the area biopsied whilst the then brand new fibriscan gave him better data across the whole liver. There is also a very small risk that the biopsy could cut a blood vessel in the liver resulting in a serious bleed. Even though this risk is very low he felt it outweighed the diagnostic benefits.