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Newly diagnosed PBC-

Autoimmune Diseases | Last Active: Dec 9 6:45am | Replies (29)

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@sb4ca

I’m sorry you’re feeling so poorly but I think you’re right this is unlikely to be ascites. Can you further explain what is happening with your liver enzymes? Did you have a positive AMA antibody test as that is a key marker when PBC is on the table. Is your ALP highly elevated along with ALT, AST and GGT? Elevations in all these tests plus a positive AMA can be indicative of PBC but a hepatologist will run more tests for confirmation. Most people will routinely get a common blood test called a metabolic comprehensive panel that tests organ function and that includes your liver function tests. Any number of doctors order this test all the time and it’s probably the most common blood test ordered. Maybe you can look at MyChart under results or even at the lab you routinely go to look at your results and trends. That will give you a history of how long your liver enzymes have been abnormal. It’s very concerning that you would have ascites after just learning you have a liver disorder whatever the type. Ascites is a key indication of advanced liver disease with cirrhosis and that is something that typically takes years of serious untreated disease to advance to. Advanced cirrhosis which is the later part of liver disease may indicate the need to go on a transplant list- it’s that serious. Almost surely you would have known well in the past if your liver disease had gotten this severe. I have had PBC for years and have limited fibrosis which is the lead up to cirrhosis. If someone had 50 lbs of abdominal fluid that would be an emergency and causing shortness of breath. If you had cirrhosis, that also causes some serious blood abnormalities outside of liver enzymes and your doctors would have flagged long ago and you’d likely be jaundice well before now. There are tests used to measure how stiff the liver is from scarring called fibrosis. A fibroscan is probably the most common. Once you pass the 4 levels of fibrosis it’s considered cirrhosis. Let’s hope this is not ascites. There are various GI disorders that can cause abdominal bloating. Good luck.

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Replies to "I’m sorry you’re feeling so poorly but I think you’re right this is unlikely to be..."

Thank you. I have had all of the above elevated for over 2 years, almost 3. My GGT is about 500 or so, maybe not too high but high. Antibodies triple (something there with cytoplasmic staining), and also my M2 was positive. My ESR has been triple, quadruple what it is supposed to be for almost 3 years. The Dr. did nothing. I am pretty sure with those positive outcomes and the numbers, that it is PBC. I have never gotten blood work regularly a all. But I do recall a couple times when I was sick or whatever, some being high and having it brushed off. I had several bouts of pancreatitis over 10 years ago that the Dr. attributed to meds, so I changed and never had again. Gallbladder was removed. That's all why I am a bit nervous. I can't even get a gastro to call me back in this darn city (Syracuse, NY). I've been waiting 2 months on the referral once my Rheum finally decided to do something. So who knows when an appt is going to be. So I took it into my own hands and scheduled with Mayo hepatology.