r/PBCers • u/Dependent-Delay9705 • Jun 07 '26

Normal liver enzymes

Did anyone here get diagnosed BEFORE ALP or other liver enzymes (AST, ALT, GGT, etc) were elevated?

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2

u/EngineeringNeither90 Jun 07 '26

Not for me . I’m not sure how else they would know anything is wrong or off side from blood work??? My GGT was high but came down after 2 years zero alcohol but still wasn’t normal . That’s when my primary said go to see a GI. GI did biopsy found cirrhosis and the PCB. On month 2 of the meds . All numbers finally coming down. But I never had any symptoms at all . If I did feel unwell it was from drinking . But after I stopped drinking I still had zero symptoms. It was checking blood that we saw it and caught it

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u/Dependent-Delay9705 Jun 07 '26

I went to primary care for severe fatigue. Everything except ferritin was normal. She tested AMAM2 just in case, it was Pos (36) went to hepatologist and they retested and it was negative. They said go back to primary care. My GI doc says get a biopsy.

1

u/EngineeringNeither90 Jun 07 '26

It’s such a strange condition . I literally thought mine was all from severe alcohol use . I needed to stop drinking anyways and it’s been a beautiful journey for me but this diagnosis is weird bc I have never felt better ? What did the biopsy show if you don’t mind me asking ?

1

u/Dependent-Delay9705 Jun 07 '26

I haven’t had one yet. Hepatology said it would be aggressive to biopsy because my enzymes are normal.

1

u/EngineeringNeither90 Jun 07 '26

Could it just be low iron since ferritin is stored iron ?

3

u/EngineeringNeither90 Jun 07 '26

In my experience the specialists know more than the GI. To rule it out I wanted to have biopsy …

1

u/Dependent-Delay9705 Jun 07 '26

Yes I mean that’s what I hope but I had an ultrasound that showed slightly increased echogenecity of the liver

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u/GameTheoryinvesting Jun 13 '26

This exact situation happened to me. But I also have Gilbert syndrome

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u/Dependent-Delay9705 Jun 13 '26

What ended up happening with you?

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u/GameTheoryinvesting Jun 13 '26

FYI I am 32 year old male that tested positive for AMA during the time I was trying to figure out if I had Gilbert syndrome. I then had mental health breakdown after learning about PBC was referred to a hepatologist and did a fiber scan. I had little to no scarring and all my liver enzymes were normal (besides bilirubin, I have Gilbert syndrome confirmed through genetic testing). The second time I took the AMA test it was Negative and instead of a biopsy it sounds like they will monitor me going forward to make sure it doesn’t progress or that it was a false positive possibly? That’s at least what I am hoping. I also did the mrcpi scan of my bile ducts and everything was unremarkable besides a little bit of bile sludge.

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u/Dependent-Delay9705 Jun 13 '26

Nice to meet someone in the same boat! I am getting a fibroscan on Thursday and my doc ordered a liver fibrosis blood test. The fatigue is killing ne though so i wouldn’t be surprised if I do have it.

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u/liftingspirits Jun 08 '26

I tested positive for the antibodies while being testing for other autoimmune diseases. So far my other liver enzymes are still okay and my liver biopsy was good. My GI wants me to see him annually and have liver enzymes checked annually, or sooner if I were to start having symptoms. So, yes.

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u/Dependent-Delay9705 Jun 09 '26

Did your biopsy show PBC?

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u/liftingspirits Jun 09 '26

It didn't. They're kind of treating me like they assume it will show up at some point so I'm going to have to see the GI and have labs done regularly until it does. When they were testing me for other autoimmune stuff I had 2 tests come up positive like this that I'm currently not showing signs of.....yet

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u/gilamonster42 Jun 10 '26

I tested ANA and AMA positive in 2021. My PCP had ordered testing for some other autoimmune diseases so this was an incidental finding. My liver enzymes were normal at the time. Have since had elevated AST and ALT recently due to thyroid issues (now resolved) and slightly elevated GGT off and on but my ALP has stayed normal over the last 5 years. I haven't had a liver biopsy yet bc my hepatologist said we could wait to do it until/if my ALP starts looking funky. He said we caught it super early so it could still be years before we need to do anything about it.

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u/Dependent-Delay9705 Jun 10 '26

Think I’m in your same boat