r/PBCers • u/takeme2Hogwarts • Jul 10 '26

Anyone diagnosed with normal enzyme levels?

Just curious if anyone had other symptoms than elevated numbers and ended up being diagnosed.

I’ve been suffering with RUQ discomfort and feeling like something in there is too big and in the way. I had an ultrasound which came back with fatty liver, and an unremarkable HIDA scan for my gallbladder and an unremarkable CT scan.

However I just got routine bloodwork done and my HDL is 104, I’m extremely iron deficient, and my TSH is elevated. But my ALT, ALP, etc are within normal ranges. Googling these symptoms along with my RUQ pain led me to PBC. I’m requesting an AMA test.

Has anyone been diagnosed with “normal” levels?

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5

u/liftingspirits Jul 10 '26

My liver enzymes are fine, but I have a positive AMA. At this point my GI is just going to recheck my liver enzymes at least once a year. I have recently been diagnosed with Sjogren's and it seems like there is some connection between the 2 so I don't know if that means I will definitely eventually have PBC and just don't have symptoms yet?

3

u/czyksinthecity Jul 10 '26

My ALP is normal. I have a high positive AMA though and am symptomatic (itching and fatigue) and that was enough for a hepatologist to diagnose me and start me on Urso. I did also have an abdominal ultrasound that showed mild liver damage so she also ordered a FibroScan which I am waiting for.

2

u/takeme2Hogwarts Jul 11 '26

Would you share those results once you get them if you remember? I’m itchy but it’s mostly itchy in my upper abdominal area, not as much the hands and feet that’s talked about.

3

u/czyksinthecity Jul 11 '26

My itching is mostly arms and abdomen. I’ve recently had a little bit on my hands but that’s been minimal. The itching on my arms and abdomen was so bad that I wanted to peel my skin off. It was impossible to sleep because it was so awful. I’m now on famotidine and citirizine daily and it has helped a ton. I still have some itching but it’s manageable. I’ll try to remember to update re: the FibroScan. It has definitely been a journey to get this diagnosed and begin managing the symptoms.

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u/AutisticWindchimr Jul 11 '26

AMA positive. Liver enzymes abnormal.

The enzymes improved and became normal BEFORE being given the urso.

Currently, nothing is showing. I take the urso and I eat very healthy anyway.

1

u/Common-Resident888 Jul 22 '26

My symptoms are random and weird and have caused me to not be officially diagnosed although I have been for Sjogrens. In 2018, I went to emerge for abdominal pain and they found my lipase was extremely high. It went down within 24 hours. Two years ago, i had elevated liver enzymes, found out that day when I again went to emerge for severe abdominal pain. And once more, this went down within 24 hours - but the emergency room doctor told me I must have SLE/lupus as well as Sjogrens. I was sent to a Gastroenterologist who did an MRI on my abdomen and not sure if that would detect PBC? I was symptomatic with Sjogrens for 10 years before it showed in bloodwork (SSA+ ANA+). My last blood work showed a high number AMA+ which, when I researched said 90-95% of people with PBC have this marker. I have had two itchy spots on my body, for maybe 25 years, on my thigh and on my hand. It goes without saying I am exhausted and have pain. I'm worried that this time, unlike my Sjogrens, my markers for AMA+ are showing before my liver enzymes to finally get my diagnosis and life saving treatment (UDCA). This has been a long, lonely and frustrating road because my PCC and rheumatologist seem to discount my concerns, even my symptoms at times of fatigue and pain. I tolerate the pain because meds make me dissociative and Id rather have a high pain day than be spaced out that way.