Worried about wait time Primary Biliary Cholangitis GI Referral

@justme74, Welcome to Connet. I think that you are absolutely justified in your feelings of anxiety as you await your appointment with the GI (Gastroenterologist) I'm always that way then I see any new provider, especialy a specialist! However, I have always learned so much about my condition from a specialist. There are many possible reasons/causes for elevated liver numbers, and I hope you apppintment with new GI will provide you with some answers.

At around age 50, I had elevated liver function levels in my routine blood labs, and that is when my PCP referred me to a GI. The GI began s series of tests to investigate what might be causing the elevated numbers. It seemed to take forever to arrive at a diagnosis. I remember being prescribed URSO early in my treatment for anothe disease of the bile ducts. I don't recall any side effects from the URSO, but I did feel gradually increasing fatigue along with other symptoms because of the progressive liver disease that I had.

When is your appointment? Are you making a list of questions to take with you?

Good morning from Canada. I can empathize and sympathize with everything that you are going through. I was diagnosed with PBC in May 2012. Mine was found purely by accident. I had turned 50 and my doctor was doing the typical everything that they do when you turn 50. My blood, liver enzymes and white bloods and red bloods and plasma and everything else was way off the charts like my liver enzymes. If I remember correctly, were something like 1200 when the normal is what? 45 something like that?. Anyway, it started a long journey. I was first referred to a rheumatologist and the rheumatologist took one. Look at my reports and said this isn't for me. You need to see a hepatologist. And he knew one in the Vancouver general hospital and was able to get me in quite quickly to see him. I was fast tracked because I went from stage 0 to stage 4 immediately. I was at least 5 and 1/2 years before I was listed and I was a year and a half before I got a liver. I had numerous esophageal bleeds. I had ascities. Numerous infections. I don't know what to say really except hang in there. The way I looked at it through my whole journey was if I was that sick I would be put somewhere other than where I was if that makes any sense. Wasn't that sick at that time? Somebody else was sicker than me or needed it more than I did. PBC is not a death sentence, so don't let anybody tell you it is depends what stage you are diagnosed at. There is medication called ursodial that if taken early in your journey, slow the progression of the disease down to the point where you may not need transplant. Like I say it just depends what stage you're at when you're diagnosed as to what your journey is going to look like in everybody's journey is different and everybody Outlook is different. Stay strong. We'll keep you in our prayers. Good luck! 🍀

It takes a while to get all the numbers and information together. I had level 4-5 cholangitis when I was first diagnosed so I had it going on for a while before it was correctly labeled. I had been to doctors before this discovery who were more intent on values of blood tests than on any other investigation. One even accused me of drinking, then told me he was going to perform a surgery. Mayo is too far for me to visit so I finally found a great John’s Hopkins doctor who did a biopsy and that is when everything was really discovered. Knowing if your liver disease is compensated or decompensated a very important. I had to wait at least two months for my first accurate doctor to diagnose me and monitor my liver. I really don’t think that affected my diagnosis result at all. Once you are diagnosed the doctors work together with pharmaceutical companies to get the medications most likely to help. It is a scary diagnosis and after it happened to me, and the disease had progressed so much before being discovered, I was sleepless and reading too much on line. Don’t diagnose yourself on line. I have been walking, swimming, and enjoying grandchildren for the past 10 years and every day is a gift. I have found it is different for everyone. Stay positive.