Questions to ask new Dr about my PBC

@jandgritz001, I commend you for your appointment with a new doctor after your move to a new location. As you know Primary biliary cholangitis, previously called primary biliary cirrhosis, is a chronic disease in which the bile ducts in your liver. Progress overtime is something that can provide your doctor with a pattern of your disease. Since you mentioned that your previous doctor did not keep up with records, do you have access to what he did keep? Now would be a good time to begin to collect medical records to share with the new doctor.

When I was treated by a gastroenterologist (GI), I was fortunate to have a doctor who was well trained in liver diseases. And he was in a close professional relationship with his mentor who is a liver specialist at a transplant department of a regional university hospital. I was diagnosed with a different bile duct disorder after referral to the liver specialist. He knew the particular signs and the necessary test for accurate diagnosis for my situation. I had primary sclerosing cholangitis (PSC). After that, it was my local GI who monitored me through routine follow-ups and labs for almost 9 years. Every 3 months he checked my labs and it was the pattern of the labs over time, plus my diagnosis and symptoms that guided my treatment.
I know that is probably too much information for a Monday morning, however, I want you to be know that I had a bile duct disease, too.
Each one of us with liver disease has common and different side effects. My side effects ranged from mild to life changing over time, and do not mirror some that other members have experienced. There is no one-size-fits-all, so I hope your new doctor has experience with liver disease diagnosis and treatment.

You asked about what questions to ask, and I thought it might be helpful to begin with a review of PBC before you go to your appointment. In addition to diagnosis, tests, side effects of PBC as well as possible questions for you to ask, -and also questions to expect from your new doctor.
https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis/symptoms-causes/syc-20376874

Here is a discussion -
Your Tips on How to Get Off to the Best Start with a New Specialist
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

@jandgritz001, What is your expectation for your first visit? Will someone be accompanying you?

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?

Thanks for all this info, see my doctor tomorrow. I feel better prepared

Thanks, appreciate your insight. Yes I am on Urso for a few years now. Since this is a new Dr just wondered about questions.

Let’s us know how your appointment went. I hope it was helpful and beneficial!

Hi Jan, how are you doing? I look forward to hearing what you learned at your appointment last week.