What to do next

I am new and my diagnosis has been lengthy and complicated. I thought it was due to an earlier diagnosis of sarcoidosis. However, the doctors kept telling me my ALT and AST numbers were never elevated outside of an ERCP and my initial bout of pancreatitis. My alkaline phosphate numbers were always randomly elevated. Last night I was looking over my labs on a picture I took during a doctor’s visit and twice it shows my AST numbers elevated without being flagged as such. So no one has seen my numbers elevated. I quit going in during an episode of pain/fever because they kept telling me nothing was wrong. In addition my doctor at IU (yes I live in Utah) left the practice. Anyone have tips on how I should handle this?

  1. I am in the process of setting up a consultation at University if Utah liver clinic for another opinion.
  2. I want my labs fixed before anyone else looks at it.
  3. Isn’t this malpractice?

I don’t want to make or say things in anger and complete frustration…so I would appreciate some guidance.

I’m sorry you’ved had to go through so much all these years. I can relate because when I was diagnosed with PSC in 1999 the only elevation I had was Alka Phos 278. At that time I was Asymptomatic. But in 2002 I began itching and continued until my TX in 2010. Because my liver enzymes were never too high and the alkaline stayed around 165 I could not find a Dr to help me with the horrific itching
I finally found a liver Dr in 2007 to help me until my TX. So I do understand and I think you are on the right track in seeing a liver Dr. This is probably not much help but I wish you much success in resolving some of your issues.Also during my search for help one liver Dr could not confirm my diagnosos after doing ERCP#2 which really thru me into a tailspin . After that I was really desperate in getting some help as they all shrugged me off. So when I saw liver Dr in SF he did another ERCP and confirmed that all of the bile ducts were sclerosed and scarred so it really made a huge difference
Sorry I went on for so long. Take care and hope you find some help

The liver specialist in the gastroenterology group my partner goes to has uses a MRCP to help with diagnosis in addition to the ERCP and related blood work. The MRCP (Magnetic resonance cholangiopancreatography) is an imaging technique used to visualize the biliary and pancreatic ducts in a non-invasive manner.... kind of like a MRI but specific to the bile ducts/gastro system. He also uses it to track the progression of the disease.

I hope you find a physician more familiar with PSC. One of your questions for finding a good doctor can be, "Approximately how many cases of PSC have you seen and treated?"

I know it must be very frustrating... and it does sound like somebody fell down on the job. It is odd though because it seems that most labs flag stuff on a blood report when they are out of range with a H (high) or L(low). Another thing you can do is ALWAYS have your labs sent to you so you can read them yourself and become more familiar with what you are looking at. It also helps you to develop a better understanding of your disease and ability to ask questions and make decisions about your health. Vitamins and nutrition are a big key to how you feel. There is a good thread in this forum about that.

Hang in there!

You people are so far ahead of me in knowledge of your PSC. All I was ever told was my liver enzymes were elevated. I have PSC and nothing can be done. Any other blood work done was never discussed. My gallbladder can’t be removed. I and my primary physician have asked the opinion of a liver specialist only to be told my liver enzymes dropped so the gastro Dr. opted to hold off sending me to Halifax. I am picking info up in these discussions and I am most thankful for that. I am itching terribly to the point of bleeding on my back but have never received any relieve for this. Thanks for all your comments they are most helpful.

Definite diagnosis by my gastroenterologist and surgeon. I’ve seen pictures of the bile ducts and exhibited related symptoms. The surgeon could not do a laparoscopic surgery to remove my gallbladder because of scar tissue. I have a mass on the liver and have blood work done every three months and an MRI every six month . I guess I was not aware until now there were other blood work beside liver enzymes until I read some reports on here. My next blood work will include tests for my kidney function. As I said I am ignorant to what I should know about PSC but hopefully will gain knowledge through this group. My primary physician admitted to me on my last visit I am her first patient with PSC she has encountered in her 30 years of practice.