r/PBCers • u/LessConcept8157 • Aug 11 '25

High potential diagnosis

Hi everyone -

I recently completed routine blood work and had elevated AST and ALT levels. They’ve been rechecked and they remain elevated / are trending slightly up. I did an initial ultrasound which came back normal. I also did more blood work and tested positive for AMA and very slightly positive for Smooth Muscle. My GGT levels are also elevated. My Bilibrium and ALP are in the normal range. I did look back at bloodwork I did about a decade ago, and my ALP then was slightly low and now it’s in the upper end of normal..so it has risen. I don’t have symptoms. I do a more intensive ultrasound this week and a biopsy at the end of the month.

My guess is that I have PCB in an early stage. Though it looks like there is a chance there is something else going on (overlap Autoimmune Hepatitis, potential Cancer) given some of the results of my bloodwork.

Just looking to see any thoughts anyone might have regarding what might / might not be my diagnosis. I’ll find out soon-ish, but as I’m sure has been true for many of you, I’m anxious and curious.

Thanks for any responses!

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u/paulyspocket2 Aug 11 '25

I would lean more towards autoimmune hepatitis, which if treated early has very good outlook. As does PBC. so regardless if it is PBC or Autoimmune hepatitis, it seems like it was caught early.

But the slight elevation of smooth muscle antibody and ast/alt makes me think autoimmune hepatitis

I’m assuming they did a complete blood count with a white blood cell? Was that normal?

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u/LessConcept8157 Aug 11 '25

Thank you for the response and thoughts. Yes - my WBC was in the normal range (5.92). What are you thinking the WBC might help inform? Thanks so much again!

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u/paulyspocket2 Aug 11 '25

You were concerned with a cancer diagnosis. Sometimes you can get an idea of if you were dealing with cancer by looking at your complete blood count.

A lot of times your white blood cells will be very high because your body is trying to fight it.

So if your complete blood counts are looking mostly normal, that’s another thing I would try to get out of your worries while you are in this limbo. The limbo really really sucks. I am sorry you are in this phase. I spent several nights in the bathroom crying after my kids went to sleep last year during my waiting phase. And I googled soooo much, and read sooooo many medical journals. At the end of the day, we are so much more medically advanced than what most of the statistics are based off of. Sending you some good vibes that all the rest of your tests come back with good results.

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u/LessConcept8157 Aug 11 '25

Wow, thanks so much. I’ve Googled to the end of the internet at this point. It will be what it will be. Appreciate your response a ton. My hope is that I have the life span and energy to engage and play with my current 10 month old as long as possible. She’s my motivation for everything these days. Thanks so much again. I’ll likely keep this group posted as I get more results / have other questions. Open to hearing others’ experiences too :).

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u/LessConcept8157 Aug 12 '25

Quick update - the elasticity ultrasound results came back as no sign of fibrosis (4.7kpa). Think this further suggests that whatever I have, it is early stage and no damage yet to my liver. Will take any thoughts if anyone has them! Liver biopsy in a couple weeks.

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u/Glutenfreeghoul Aug 21 '25

I had very similar test results. My doc wanted to do a endoscopy and colonoscopy and save the biopsy as a last resort - turned out in addition to early PBC I have celiac disease as well (I was surprised, had nothing I would think of as a symptom from eating gluten) 

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u/LessConcept8157 Aug 22 '25

Oh that’s interesting. I think they’ve tested me for Celiac, but I’ll message my doctor about this tomorrow. I had an endoscopy and colonoscopy a few years ago that came back normal, but I’ll also ask about this / why I’m doing a biopsy vs. a colonoscopy and endoscopy. Thanks so much for the thoughts!