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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.

I have not formally been diagnosed but I’m sure it’s PBC. My GI is sending me to hepatologist. Did anyone have trouble getting a diagnosis?

A myPBCteam Member asked a question 💭
Springfield, OH

My antibody is positive, alk phos elevated for a year & fibroscan is grade 4

February 15
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Reactions
A myPBCteam Member

My labs have been drawn 4 times since last May and alkaline phos always elevated. Plus positive AMA.

February 16
A myPBCteam Member

Is your liver numbers high. Like alkaline phosphate

February 15
A myPBCteam Member

Yes. I am still waiting for upcoming appointments for a formal diagnosis. I had abnormal labs for months and my gastro said nothing and had no referral. He said last month was less abnormal than the previous so do nothing. After the way his company handled my gallbladder surgery after months of hell and issues, I am taking my labs somewhere else. Its a vital organ. Ive decided to be proactive with research and this place has been invaluable.

February 15
A myPBCteam Member

My Alkaline phos was high for quite some time , until my PCP did a liver biopsy

February 15
myPBCteam

Are you experiencing difficulty getting a PBC diagnosis?

Yes, many people have trouble getting diagnosed with PBC. It's actually quite common for the journey to diagnosis to be lengthy and frustrating.

One myPBCteam member saw three different doctors over nearly two years before finally receiving the correct diagnosis. She Show Full Answer

Are you experiencing difficulty getting a PBC diagnosis?

Yes, many people have trouble getting diagnosed with PBC. It's actually quite common for the journey to diagnosis to be lengthy and frustrating.

One myPBCteam member saw three different doctors over nearly two years before finally receiving the correct diagnosis. She was repeatedly told she had fatty liver disease despite persistent symptoms and worsening lab results. It took partnering with a third gastroenterologist who ran the right tests to finally confirm PBC.

Another member was bounced around from specialist to specialist and felt like she wasn't being heard. After a disappointing encounter with her first hepatologist, she had to research and schedule appointments across the country to find the right specialist who would listen to her concerns.

Why diagnosis can be challenging:

- PBC symptoms like fatigue and itching are common in other liver conditions
- Some people don't have noticeable symptoms early on
- About 5 percent of people with PBC don't have the typical antibodies
- Healthcare providers may not be familiar with this rare disease

Your test results are significant:

With a positive antibody test and elevated alkaline phosphatase for a year, you have two of the three criteria typically used to diagnose PBC. The hepatologist will be able to interpret these results along with your FibroScan findings.

Seeing a hepatologist is an important step since they specialize in liver diseases and are more familiar with PBC than general practitioners.

February 15

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