Patient Comments: Primary Biliary Cirrhosis - Diagnosis

How was your primary biliary cirrhosis diagnosed?

Comment from: WandaH, 45-54 Female (Patient) Published: June 03

Went to my GP in mid-March 2011 for bronchitis. Told him I'd been losing weight and had a bad taste in my mouth for several months. Consequently, blood work was done. The nurse called me the next day saying that my liver panels were high. Scheduled me for an abdominal ultrasound the following day and then back to the doctor that afternoon for results. Scary, them moving me through so fast! Had my gallbladder out on March 31, 2011. A month and a half later (mid-May 2011), liver panels were still high, so I went to a gastro. Did more blood work. Doctor called me with results last week at night confirming primary biliary cirrhosis (PBS). You know it's serious when the doctor himself calls you AT NIGHT!?!? Started meds the very next day. Still unsure about all of this....and scared.... Never had any health issues prior to this.

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Comment from: Uli, 45-54 Female (Patient) Published: June 01

I have had chronic fatigue syndrome diagnosed in 2007. After 13 months seemed so much better. Contracted flu in 2011 and reactivated cfs and hit menopause. Had routine blood tests which indicated Ana and AMA serology etc was positive. A new really smart gp picked it up and did further testing. My sister also has PBS and has had for 10 years. She is on cortisone etc. I have also had blasto cystis hominis, helicabactor, clostridium difficlile and 2nd line treatment for all with millions of antibiotics - not good for the liver. I will now really watch everything that goes in my mouth and no alcohol.

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Published: June 01

I was diagnosed with PBC this past Thursday. I originally went to my primary doctor because I was having indigestion, heart burn and pain in my left jaw. I was thinking heart disease. Dr. ordered a blood workup but referred me to a cardiologist immediately. When he received my blood results, the liver enzymes were elevated so he sent me to a GI specialists. After more tests, ultrasound, PBC is the conclusion. I will be having a follow-up to determine if a biopsy is to be done to determine stage and treatment. I have no symptoms other than those above except that I now notice tenderness around my liver (in my head?). I must say that I'm in a bit of shock right now as I research this disease but am hopeful that we caught early and keep it in check. I have a physical and blood work done annually and everything has been perfect up to now. Wow...life changes quickly.

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Comment from: lendiwarden, 55-64 Female (Patient) Published: April 11

I had breast cancer in 1999 and a series of other health problems. In 2003, after routine exams, they found I had gall stones and when having the surgery for that looked around and the surgeon noticed that my liver didn't 'look' right. After the surgery and the doctors thought it was hepatitis. Further testing confirmed I had PBC.

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Comment from: dd, 55-64 Female (Patient) Published: April 11

My PBC was diagnosed after a blood test revealed very high levels for all my liver enzyme levels. This followed a 5-year period of being on Hormone replacement therapy from age 50-55.

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Comment from: bunno1, 55-64 Female (Patient) Published: March 16

I'm a 59 year old female. About 7 years ago my liver enzymes showed elevated during routine annual blood tests. I have been being screened for primary biliary cirrhosis (PBC) once per year since then. I was finally diagnosed this year after the annual AMA test came back positive and a liver biopsy indicatd markers consistent with PBC. My mom was diagnosed with PBC in the early 1970's when they knew little about the disease. She became a subject of research through the University of Chicago Hospitals until she passed away in 1982 from liver failure. I have no significant symptoms other than itching at the very top of my left rib cage in front. I've had the itching for about 3 years and it intensified about 6 months ago. However, I've been on Urso for 2 months now and the itching has all but stopped this week fo the first time. My doctor said he has about 6 other female patients with PBC. He believes with diet, excercise and Urso, it is entirely possible for one to live a full and normal lifespan.

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Primary Biliary Cirrhosis - Experience Question: Please share your experience with PBC.
Primary Biliary Cirrhosis - Symptoms Question: What symptoms did you experience with PBC?
Primary Biliary Cirrhosis - Diagnosis Question: Please share your experience with the diagnosis of PBC.
Primary Biliary Cirrhosis - Complications Question: What complications have you experienced with PBC?

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