Hello everyone, I am Lilly a new member. I am 18 and have been living with Crohn’s disease for 9 years (dx @ 9yrs). In 2022 I started having abnormal stomach pain episodes, pain that would go on for hours and straight bile in the stool. I had 2 HIDA scans, one coming back inconclusive and the other showing my gallbladder wasn’t functioning. This led me to have my gallbladder taken out and the episodes stopped except I was still having large amounts of bile in my stool so I went on Colesevelam (still on it to this day). Shortly after my surgery my liver enzymes (ALT, ALP, AST) were elevated. My doctor said this was normal after surgery. However they never lowered and at the beginning of this year they were even more elevated (ALT=86, AST=138, and ALP=189). I had and ultrasound on my liver that came back normal and since then my liver enzymes have been fluctuating but still always high. Recently I switched doctors and he mentioned PSC, but he said my enzymes weren’t high enough for further testing and just said it was fatty liver. (ALT=34, AST=43, and ALP=117). I am just trying to find some guidance as what to do and questions to ask because I know this is a progressive disease so I’m wondering if its just not bad enough yet? If anyone has advice I would love to hear it, thank you and sorry for the long post.
Lilly.mae welcome to the forum. I’m very sorry to hear about your ongoing difficulties. The doctors you are seeing, are either of them Hepatologists? If there is a possibility of PSC I would really encourage you to find a hepatologist associated with a transplant hospital. They are specialists in the diagnosis and treatment of liver disease. Also, it may be good for a benchmark to do a MELD score. Go to this link and enter the information from your most recent labs. This will give us an idea of your liver health. It’s not a conclusive diagnosis at all but it gives the doctors a good idea of what may be going on. Here’s the link. https://optn.transplant.hrsa.gov/data/allocation-calculators/meld-calculator/
Please feel free to reach out with any questions. Abnormal liver numbers are nothing to mess around with an early detection is always good. Take care and do let us know how things go.
Mark
PSC 2011 / Liver Transplant 2015
Hi Lilly
My son has small duct psc. He’s 26 now. They diagnosed him with a liver biopsy, in 2017. His MRCP and ultrasounds always look normal. He also has UC. He just had his gall bladder removed last week he 2 had functioning issues and also chronic inflamation.His dirrhea is terrible rn, drs gave him similar medicine yesterday and he developed a rash over his liver rn. So he can’t take that. Thanks for your post, I wish you younger kids didn’t have to go through all this. His liver enzymes have been elevated up and down since diagnosis. They have been elevated all this year. Lower numbers like yours. Ask for a liver biopsy?
Hang in there your very brave.
Tina
Lilymae,
As Mark said, make sure your doc is a hematologist and not a GI. That is the difference between a liver specialist and a generalist.
There is a stage where the docs really can’t do much until a symptom arises. That is one of the curses of PSC.
Jeff
Oh my goodness I’m so sorry to hear that. That is scary that it can go undetected in both ultrasound and MRCP, I will definingly ask about a biopsy. Thank you and wishing you and your son the best!
Are there any other symptoms other than fatigue and jaundice? I am new to all of this and trying to learn the best I can. Thank you!
Hi Lilli Mae,
I’ll cut to the chase. I was diagnosed with Ulcerative colitis by a GI who told me I had elevated liver enzymes. 11 years later, I was diagnosed with PSC and end stage IV liver cirrhosis by a hepatologist at a teaching hospital. I don’t think my GI knew how to make that diagnosis, even after doing a liver biopsy. A biopsy was ordered before meeting the hepatologist. Continued elevated enzymes is a warning sign. Two things come to mind.
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Find a teaching hospital near you connected with a medical school. Hepatologists are commonly connected with such institutions. One with a transplant program is ideal.
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Ask for a referral to see a hepatologist. They will review you GI records and blood tests. Expect additional testing to accurately diagnose your condition.
Hepatologist specialize in diseases of the liver. What you have may or may not be PSC. My diagnosis came late in the game. I received a liver transplant almost 14 years ago and am in good health. I wish you the very best!
Paul