Hello @jandgritz001, that’s great that you have few PBC symptoms and you’ve been diagnosed. With the right treatment and proper diet, a person can live with PBC for many years with limited impact on one’s liver. Hav you been started on ursodial?

I’d definitely discuss nutrition with your doctor and a nutritionist. It’s important that you become a label reader, watch salt intake, and do everything possible to protect your liver. Learn all you can about what to avoid, including ibuprofen and Tylenol, alcohol of course. How’s your iron levels? Iron and potassium are things to keep on top of.

If you’re not familiar with it, pbcers.org, is an informative website. The more you can read about PBC is a good start when it comes to both learning about it and also what to ask your new doctor. I’d recommend keeping a journal with your symptoms, questions to ask, notes, etc. Also, always review your labs and ask questions if you’re not sure what the significance of particular labs are.

Be sure to discuss your bilirubin levels with your doctor. It can mean liver damage, but it can be other things too. Don’t hesitate to ask you doctor questions. I used to type up my symptoms and my questions and send them in advance of each doctor visit. I’d bring a copy with me and we’d review it. Doctors are so busy and it was helpful to be prepared and ensured I didn’t forget anything!

When’s your appointment?

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