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PBC Diagnosis: Liver Condition Signs
PBC Diagnosis: Liver Condition Signs

Don't Ignore This Important Women's Health Issue

You’ve probably never heard about this condition, but here’s what you should know about it.

Your Body

Taking care of your overall health is an important—and difficult—job. From your head to toes, there are many things to keep track of: vision, dental, heart, skin, and pelvic to name a few. When you think of your overall wellness, it's important to not ignore something that's often over-looked: your liver health.

Your liver is always there for you, performing essential functions like turning your food into energy and removing bad stuff from your blood. It doesn't beg for attention like some of our other organs (skin, we're looking at you!). But things can go awry, and it's important to know about them.

We sat down for some real talk with two women, a physician who is an expert about a liver condition you've probably never heard of – primary biliary cholangitis, or PBC – and her patient Laurie. In PBC, the immune system attacks the small bile ducts in the liver, causing scarring over time. That means the liver can't do its job.

Ninety percent of people affected by PBC are women, which makes it an important women's health issue.

Meet Laurie, who was diagnosed with PBC at age 34. Her doctor is Marlyn Mayo, MD, a liver specialist at University of Texas Southwestern Medical Center.

Laurie:             Hi, Dr. Mayo. Thank you for talking with me today. Let's start with an easy question: Why should women consider their liver health alongside other health factors like breast care or heart health?

Dr. Mayo:        Well, the liver is one of the most essential organs in your body for life. You know the expression, "You are what you eat"? It's the liver that makes that true and that takes everything you eat and turns it into you. Without your liver, you wouldn't be able to keep your body going. It's important to take care of it.

Also, the liver doesn't complain very loudly if it's sick. You can have a very severe liver disease without feeling any pain, or the symptoms might be vague or non-specific. You have to be proactive.

Laurie:             So, what should younger women, maybe in their 20s and 30s, look for when considering their liver health? And how is this different for middle-aged women?

Dr. Mayo:        There are liver conditions that tend to affect younger women, like autoimmune hepatitis. Young women who are first- or second-generation immigrants from Asia or Africa are at higher risk for hepatitis B and should be tested in their late teens or early 20s.

Middle-aged women are at risk for hepatitis C and should be screened for hepatitis C antibodies.

PBC usually becomes apparent in a woman's 40s or 50s. A middle-age woman with fatigue, itching or abdominal pain should be screened for PBC, particularly if she or a family member has a history of autoimmune diseases.

Some liver diseases affect women of all ages. For example, all women are at risk for fatty liver disease, especially if they're overweight or have diabetes or a family history of fatty liver disease.

The most important thing is to have a discussion with your physician about your background: your current medical conditions, your family history, where you're from and your age. Ask your doctor if there is anything in particular you should be screened for. There are a lot of possibilities depending on your age.

Laurie:             How frequently should women have their liver function tested? What does that involve?

Dr. Mayo:        I recommend everyone get an annual liver test to see what's going on. If you don't, then you might not catch liver disease until it's too late.

It's a very simple blood test, just the same as if you were to get your cholesterol tested, once a year as part of an annual exam. A healthy person only needs a once-a-year exam with blood work and a physical exam to see if there's any screening for cancer that needs to be done, whether that be a mammogram, colonoscopy or a Pap smear. A liver test can be easily done during that office visit.

Laurie:             If you're not a medical person, and you've never had to do this before, it can be overwhelming when you get your liver test results. What should someone who's new to this be looking for?

Dr. Mayo:        A basic liver panel has four or five tests that measure different liver enzymes in your blood. Really there are only two potential results. They're either in the normal range or they're high. Liver enzymes are never elevated for no reason and should always be followed up.

Basically, if any of your liver enzymes are out of your normal range, then they should be followed up with a repeat test at a later time at the very least to see if it goes away. If it's a persistent problem, then it needs to be evaluated further with additional laboratory tests and a liver biopsy when advisable.

In this day and age, when patients are more empowered to interpret their own test results online, it's important for patients to empower themselves and understand what's significant, what's not and what should be done.

Laurie:             As you know, I am living with PBC, an autoimmune liver disease that predominantly affects women. How do you describe PBC to patients who are newly diagnosed?

Dr. Mayo:        It's a disease of the bile ducts. First, I usually explain what bile is and what bile ducts are because people don't necessarily know that. Bile is the digestive juice made by the liver that's supposed to digest fatty foods, and the ducts are the little passageways that carry the bile from the liver. In PBC the problem is that these ducts get inflamed and destroyed by the white blood cells of the immune system. The liver continues to make bile, but the bile can't get out of the liver and will cause liver damage. Over time, it will lead to scarring of the liver, cirrhosis and liver failure. Early diagnosis and timely initiation of treatment in PBC is the key to prevent progression to cirrhosis.

Laurie:             OK, Dr. Mayo, is there anything else you think women should know?

Dr. Mayo:        Get your liver checked once a year, and don't ignore the results. If they're elevated, then something is going on.

Laurie was diagnosed with primary biliary cholangitis (PBC), a rare autoimmune liver disease, at age 34. She hopes that by sharing her story and experience, she will make a difference in the lives of other women living with PBC.

Marlyn Mayo, MD, is program director, Gastroenterology Fellowship Program at University of Texas Southwestern Medical Center, where she specializes in the diagnosis and management of liver diseases.

This resource was created with support from Intercept Pharmaceuticals, Inc.

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