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Real members of myPBCteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
3 days ago
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A myPBCteam Member

My bilirubin has been normal the whole time - but I defoes have PBC. Your sister needs a second opinion from someone better informed.

3 days ago
myPBCteam

That's a really important question, and it's worth knowing that elevated bilirubin is actually more associated with *advanced* PBC, not early-stage disease. A normal bilirubin doesn't rule PBC out at all.

To be diagnosed with PBC, a person needs to meet at least two of these three criteria:

- Elevated alkaline phosphatase Show Full Answer

That's a really important question, and it's worth knowing that elevated bilirubin is actually more associated with *advanced* PBC, not early-stage disease. A normal bilirubin doesn't rule PBC out at all.

To be diagnosed with PBC, a person needs to meet at least two of these three criteria:

- Elevated alkaline phosphatase (ALP) — at least 1.5 times the upper limit of normal, seen consistently over 24 weeks
- Positive antimitochondrial antibody (AMA) test with a titer of 1:40 or higher
- A liver biopsy showing bile duct damage consistent with PBC The most important first steps for your sister would be:

- ALP blood test — this is the most common early marker of PBC
- AMA blood test — nearly everyone with PBC tests positive for these antibodies
- A full liver function panel — including ALT, AST, GGT, albumin, and bilirubin

If ALP and AMA are both elevated, that's a strong indicator of PBC even with normal bilirubin.

It may be worth your sister asking for a referral to a liver specialist (hepatologist), as they are more familiar with early PBC and better equipped to interpret these results accurately.

3 days ago

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