When you live with primary biliary cholangitis (PBC, previously called primary biliary cirrhosis), it’s important to have good doctors on your care team. That way, you can get the help you need no matter how your health changes over time.

To get the best care for PBC, you’ll likely need to meet regularly with several healthcare providers in different specialties. Which doctors you’ll need to see will depend on details about your overall health condition. Here are the doctors who most commonly work with people living with PBC.

1. Hepatologist

A hepatologist is a liver specialist. Some hepatologists might work on all sorts of liver diseases and problems, while others might choose to specialize. If you can, find one who focuses on PBC.

Since PBC is largely a liver disease, a good hepatology expert is key to thriving with the condition. A hepatologist will likely diagnose you with primary biliary cholangitis, then monitor the disease as it progresses and changes through the years. They’ll also recommend and prescribe any treatments for PBC.

If you need a liver transplant for PBC, you may need to see a transplant hepatologist. These are liver doctors who specialize in working with people before and after transplants. They understand your needs during late-stage liver disease, know when a transplant is the best option, and understand the kind of care you need after your transplant, too.

2. Gastroenterologist

A gastroenterologist is a doctor who specializes in diseases and conditions of the gastrointestinal tract. Since the liver and bile ducts are part of this body system, all hepatologists are gastroenterologists, too. Some people with PBC may have just a gastroenterologist or just a hepatologist, while others will see one of each of these kinds of doctors.

Some people may see a general gastroenterology doctor before they get referred to a liver specialist. These doctors can examine you and perform blood tests. If results indicate a liver issue like PBC, they’ll likely refer you to a hepatologist.

Gastroenterologists are especially helpful when you have digestive symptoms of PBC, like diarrhea or weight loss.

3. Primary Care Provider

Even if you have specialists to help you with PBC, you should also have a primary care provider. This may be your family doctor. This is often the doctor you take your general health concerns to. They might be the first person you see when you start having symptoms of primary biliary cholangitis. In that case, they would likely refer you to other specialists to get a diagnosis.

Your primary care doctor can keep tabs on your general health. For instance, if you get sick with a bacterial infection and need antibiotics, they can help with that. They can also help you keep track of your liver health and look at how it relates to any other health problems you might have.

4. Endocrinologist

Some people diagnosed with primary biliary cholangitis also end up being diagnosed with osteoporosis. In this condition, your bones become weak and are more likely to break if you fall or have other kinds of injuries.

An endocrinologist is a doctor who can diagnose, monitor, and treat osteoporosis. They can order and perform tests designed to measure the density of your bones. Then, they can look at those results and decide if you’ve developed low bone mineral density. If you have, they can help you figure out how to treat your bones to maintain bone density as long as possible.

5. Rheumatologist

Primary biliary cholangitis is an autoimmune disease. This means that your immune system is attacking your own cells and tissues as if they were invaders. Some people with PBC also have other autoimmune diseases at the same time, like rheumatoid arthritis.

If this describes you, you may benefit from working with a rheumatologist. These doctors specialize in diagnosing, monitoring, and managing autoimmune diseases. They can help you find treatment options that will work together to treat different autoimmune diseases and make sure you avoid medication that might make PBC symptoms worse or interact dangerously with another drug you’re taking. They can also track your health in case you develop other autoimmune diseases later on.

6. Dermatologist

PBC can start out with itchy skin and may cause other symptoms that can affect your skin. Dermatologists specialize in treating these kinds of problems. If you can’t stop itching or your skin is overly dry, a dermatologist can help you find the treatments you need. If you don’t have these symptoms of PBC, you may not need to see a dermatologist.

7. Dietitian

Most dietitians are not doctors. However, they’re people who specialize in helping you get the nutrition you need in ways that are individualized for your body and health condition. If you’re struggling to eat, struggling to eat enough, or having symptoms that seem to be tied to some foods, a dietitian can help you find the solutions you need. Dietitians also offer careful monitoring of important vitamin and mineral levels (A, D, E, K, and calcium), which are mostly affected by PBC, supplementing when necessary to prevent deficiencies and protect bone health.

Make sure you get a referral to a registered dietitian, as this means they have undergone training and passed exams.

8. Mental Health Professionals

Living with a chronic disease like PBC can take a toll on your mental health. You might feel isolated, anxious, depressed, or extremely stressed. Mental health experts like therapists, psychologists, and psychiatrists can help you cope with how your symptoms affect you and find ways to face concerns about the future. Your quality of life is important, and mental health is just as important as physical health. Some mental health professionals also lead support groups, where you could meet other people living with chronic conditions and get mutual support from others who understand.

Finding the Right Medical Providers for PBC

Finding the best medical providers for your life with PBC can be hard. You may worry that you haven’t found the best doctor for you or have trouble finding one near you who specializes in PBC. Here are some tips to find good doctors and feel confident about your choices:

• Ask your primary care doctor to refer you to people they trust.
• Ask other people with liver conditions who they see.
• Talk to your insurance company to find out which doctors in your area are covered.
• Read reviews of different doctors and medical centers online.

Once you’ve found doctors you’re interested in working with, make appointments with them and have a conversation. You should note not only whether they can answer your questions about PBC but also how you feel during the conversation. After all, you want to work with medical practitioners who make you feel comfortable, cared for, and heard.

Once you’ve met some healthcare providers, choose the doctor you feel most confident will listen and work to help you manage PBC. They should have a combination of good references, as well as being easy to talk to and knowledgeable about PBC. They should be willing to invest the time necessary to get to know your body and your individual case of PBC so they can give you the best medical advice possible.

Talk With Others Who Understand

On myPBCteam, the social network for people with primary biliary cholangitis and their loved ones, members come together to ask questions, give advice, and share their tips with others who understand life with primary biliary cholangitis.

What kinds of doctors do you have on your healthcare team? In your experience, which ones are the most helpful for PBC? Share your experiences in the comments below, or start a conversation by posting on your Activities page.