Exhausting Possibilities

Odd symptoms kept piling up for Alyson Robertson, starting in the 1980s. The first clue as to their cause came in 1993, when she needed routine lab tests in preparation for arthroscopic knee surgery. The anesthesiologist told her that her liver enzymes were high. “You should really investigate this further,” she remembers him saying.

When she conveyed the information to her gynecologist and internist, neither was concerned. “They chalked it up to high cholesterol, which runs in my family,” she says.

Her doctors decided simply to keep an eye on her cholesterol. It didn’t occur to anyone that the abnormal test results might be related to another problem that had been vexing her since college. “I was always sore a couple of hours after I ate, and I had an uncomfortable full feeling,” she says. “I ate Tums like it was candy.”

She’d thought the reason for the abdominal discomfort was lactose intolerance, which she was diagnosed with at age 23. She took prescription heartburn medications and made lifestyle changes, such as eating smaller meals, staying away from certain foods such as dairy products and not eating before going to bed. But the problem persisted.

Then in 1995, the itching started. Her forearms, palms, and the soles of her feet would itch constantly, especially in the summertime. “I would scratch and scratch and get no relief,” she says. Her doctors attributed the itching to dry skin, but no amount of lotions or cream helped.

The itching was a nuisance, coming and going over the next four years, but she could live with it. The exhaustion was a different story. It began in 1999, after she had a hysterectomy. She was 37, a single mom holding down a full-time job, working toward a master’s degree and fitting in the occasional date.

“People would say to me, ‘Of course you’re tired!’” But no matter how much she tried to slow down or rest, the exhaustion remained.

Every doctor she talked to said she was feeling the normal after-effects of a major operation. She disagreed. She felt as if she were carrying around lead weights, and the feeling lasted for nearly a year and a half.

By the time she met her second husband, Brad Robertson, in February 2002, she had some of her energy back but was still dealing with the abdominal pressure and the itchy skin.

Shortly after she married Brad in February 2003, she switched to a new internist, Timothy Bohn, MD, at Cleveland Clinic’s Westlake Family Health Center. “He always wants to do a baseline liver panel on any patient at 40,” Ms. Robertson says. “My liver enzymes were off the chart. His first question to me was, ‘How much do you drink?’ I don’t. So he said it was probably a lab fluke.”

He repeated the test, and the results were about the same. He sent her to a gastroenterologist, who told her that she probably had fatty liver disease. After more blood work, an ultrasound and finally a liver biopsy, the final diagnosis shocked Ms. Robertson. She had primary biliary cirrhosis, also known as PBC, an inflammation of the small bile ducts that blocks the flow of bile, leading to scarring and subsequent hardening of the liver. The cause is unknown.

It was the summer of 2003; she and Brad had been married all of four months. “I really felt that my world was crashing in around me,” she says.

The diagnosis explained every one of Ms. Robertson’s symptoms. Her itchiness was the result of bile salts coming out through the pores of her skin. The chronic indigestion was caused by her swollen liver. Her exhaustion was part of her body dealing with the disease.

PBC usually affects middle-aged women. “I was crushed. Then the more I found out about it, I felt very fortunate I was diagnosed younger.” She credits Dr. Bohn with putting her on the right path at last. “Had he not caught it, I would have been diagnosed at a much later stage.”

Ms. Robertson was stage 2 at diagnosis and remains so today. At stage 4, patients require a liver transplant. She’s diligent about taking her medication, which thins out bile so that it doesn’t pool and form scars. And she follows a lifestyle that doesn’t tax her liver. “I exercise. I eat very lean meat and avoid fried, fatty or oily foods,” she says. “I’m taking care of myself.”

She also joined an online support group that has helped her manage the disease. “Through pbcers.org, I kept hearing about this fabulous doctor at Cleveland Clinic,” she says, referring to David Barnes, MD, liver specialist and Vice Chairman of the Department of Gastroenterology and Hepatology within the Digestive Disease Institute.

Under Dr. Barnes’ care for the past six years, Ms. Robertson’s liver enzyme levels returned to normal. There’s a good chance, she says, that the disease will not progress beyond stage 2.

She still has the occasional bad day. “When I don’t take care of myself during the busy season at work, I’ll get hit with one of those days,” says Ms. Robertson, a special education teacher in Brecksville, Ohio.

But she remains optimistic. “We’ve got four kids — three in college. I have a lot to look forward to,” she says.

Her advice to others dealing with a chronic condition? “Dig in and decide you’re above the disease, and don’t let the disease stop you.”