I Was Diagnosed With a Rare Autoimmune Liver Disease Before I Had Any Symptoms

By Tina Dooley

How I learned to self-advocate and discovered my “own normal."

About two decades ago, I had a routine blood test for a life insurance policy. I didn't think much of the test. I was healthy, after all.

You can imagine my surprise when the life insurance agency said it wouldn't cover me. Turns out my blood test came back with elevated liver enzymes. First, I had to find a life insurance agency that would cover me since I wasn't diagnosed with anything. Once I checked that off my list, I visited my doctor to see what was going on.

Initially, my doctor couldn't determine why my liver enzymes were elevated, but because they weren't dangerously high, she decided that we would test again in three months. We continued testing and watched as my levels crept up slowly every three months. Eventually, she referred me to a hepatologist, who diagnosed me with primary biliary cholangitis (PBC). Since I had never heard of PBC, I became emotional and scared of not knowing what lay ahead. While I didn't have any symptoms, I had a feeling that I would eventually experience them, and that made me uneasy. I quickly came to one conclusion –that to tackle this diagnosis, I needed to be my own best advocate, and that began with some serious research and ensuring I had the strongest possible health care team around me.

After studying up, I learned that PBC is a rare autoimmune disease that affects the bile ducts in the liver. It can sometimes take years to present symptoms, as in my case, and since symptoms can be vague (such as fatigue and itching), misdiagnosis or even no diagnosis is common.

Once I received my diagnosis, I started taking a prescription medication along with a cocktail of vitamins. I also made the vital decision to revamp my team of health care professionals and started seeing a different hepatologist who I felt more comfortable with. If you have PBC, or any chronic condition, make sure you do your homework when finding the right health care professionals for you. I can't stress it enough –turn to credible organizations when you search for a hepatologist. I find the American Liver Foundation to be a wonderful place to start your search, as the organization can connect you with many other helpful resources.

And while my hepatologist is an important part of my health care team, I also see an internist and—after years of urging from my hepatologist—a psychiatrist, who exclusively treats liver disease patients. At first, I didn't understand why I needed a psychiatrist, but once the symptoms of PBC kicked in, I found my visits with her invaluable as she helped me navigate my fatigue and anxiety.

But it's not enough to just have the right health care team helping you. You need to help your health care team help you. For example, when I first saw my internist, I told him that I am not his normal patient because I have an autoimmune disease. I let him know that I have different needs than some of his other patients. I make sure that even my dermatologist knows I have PBC because it influences how she treats my eczema flare-ups.

I also take an active role in my health care by tracking my lab results and symptoms, and not just relying on my doctors to have this information. This way, I know what's normal for me. For example, my hepatologist sees hundreds of patients per week. If he looks at my liver enzyme numbers and thinks they are high, I can hand him my spreadsheet, showing him that while a certain number may be high for the lab, it's actually a lower number for me. Understanding your body and symptoms is so valuable. If you have PBC, you need to be an expert on your symptoms, your labs and your normal.

The symptoms of PBC that affect me the most are difficulty sleeping and fatigue. It's not a constant state of fatigue, but I have what I call my "PBC days," where I need to lay low. On those days, I sit at home, read, watch movies and just take it easy.

Other symptoms of PBC, which don't affect me are itching of the skin (pruritis), abdominal pain, darkening of the skin, small yellow or white bumps under the skin or around the eye, dry mouth and eyes, and bone, muscle and joint pain.

While my "PBC days" do interfere with my life, I remind myself of what my hepatologist told me at the beginning of my PBC journey, which is that while PBC is a chronic disease, I will be able to live a long life with it, and because of that, I'm grateful for the life I get to live. I am far more concerned with my mortality while merging onto a Houston freeway than I am with PBC.

These days, I am busy being a grandma and traveling. My health care team, my family and health/advocacy organizations have helped me manage PBC and will continue to do so.

If you receive a PBC diagnosis, just remember that you are your own best advocate, and to trust your instincts. Start by building your own team of trusted health care professionals and educate yourself on the condition through valuable resources like healthywomen.org.

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