My Initial Diagnosis with PBC

Primary biliary cirrhosis - I had never even heard of such a thing before, but there the words were in plain site when I accessed my blood tests online through an Internet patient portal. I hadn't even had a chance to discuss my initial blood tests with my rheumatologist before I saw the results.

Originally I was referred to a rheumatologist to explore the possibility of whether I have lupus or not. I had a blood test in 2002 indicating a high antinuclear antibody count of 1:1280 with a positive speckled pattern that hinted that I might have lupus. After seeing a bone and joint specialist shortly thereafter and being told I did not have the disease, I remained suspicious over the years that followed, and with good reason. I had chronic pain since 2000, and a string of illnesses since 2008. In fact, since 2008, I had cellulitis 8 times, four incidents of which landed me in the hospital, two incidents resulting in surgery, and one incident resulting in sepsis and nearly taking my life.

In April 2013, I was diagnosed with Type 2 Diabetes following an eye exam indicating that my vision had declined dramatically. Following the diagnosis, I made significant changes in my diet and lifestyle. I've lost 66 pounds to date and my AC1 went from 6.6 to 6.0 so I presently have my diabetes under control. Still, the chronic pain was ongoing, and I got cellulitis for the eighth time despite the management of my diabetes. The potential diagnosis of lupus remained in the back of my mind. Hence the referral to a rheumatologist, who sent me to a lab for blood tests.

Admittedly, I was nervous about the outcome of the tests. Then I find out that the labs somehow lost the tests and I would have to repeat them! Following the second blood tests, I checked the online patient portal for any results that might have been posted. The tests indicated that the normal range for antimitochondrial antibodies (M2 AMAs) is between 0.0 and 20.0. Mine blood test came back indicating 113.2 units. A note referred to the bottom of the page indicating that anything over 24.9 was positive and is indicative of the presence of antibodies that are found in 90 to 96% of patients with primary biliary cirrhosis. Of course, when I saw the note the first thing I thought was, what the heck is that?

Google can help you find out so much information, but sometimes the search engine can prove a monster. I searched the term primary biliary cirrhosis and was horrified at the information I found. I thought to myself, “this can't be true, it has to be a mistake.” I was emotionally numb. Immediately I called my husband and told him that I hope the blood tests are wrong because it suggests there is something wrong with my liver. My husband Mark did his best to keep me calm and told me not to rush to judgment until I could talk to my doctor. That's when I became upset with the fact that I wasn't called or asked to come into the office before the findings of the blood test were posted.

A follow up visit with the rheumatologist ensued. He wanted to run more tests to rule out any potential false positives. The second blood tests also indicated a high antimitochondrial antibody count: this time it was 121.8 units – five times higher than it should be. The second test resulted in a referral to a gastroenterologist. It took nearly two months to get in to see the specialist and it felt like the longest two months of my life. After discussing my symptoms with my doctor and his review of my blood work, the doctor said that there is only a 2% false positive with AMA tests which we have already ruled out by repeating the tests. He also said that despite my high AMA levels, at this time my liver functions were normal, and he recommended a biopsy to stage the disease and to confirm its presence. The doctor than informed me that the biopsy may not indicate anything initially and even if the results were normal, following the biopsy he would begin a course of treatment to slow the progression of the disease – he rather be safe than sorry.

I had the liver biopsy on Tuesday of last week and received the results yesterday. The biopsy confirms that I am in the early stages of primary biliary cirrhosis and I also have fatty liver disease. Next Tuesday I return to the doctor to begin my course of treatment. It was yesterday that I decided to write this blog – I was inspired by another author, editor, and friend of mine, Dinah Roseberry, who faces issues with breast cancer and shares her experiences online. I am also a firm believer in the fact that through research I can become empowered, and that writing is healing. The blog will also ultimately allow me to keep everyone current on my health condition, and I hope that my writings can prove helpful to others as well.