Were you difficult to diagnose?

Posted by luckylill13 @luckylill13, Mar 9 8:39pm

Four years ago I recieved a phone call from my doctor's office saying my Liver Enzymes were extremely high and I needed to see a Gastroenterologist. At this point I did not feel sick. I went through several ultasounds, several colonoscopies, several liver function tests and an endoscopy. The doctor could find nothing wrong with my liver. Three years later, I still have elevated AST, ALT, and ALP. This is correct, my liver enzymes never returned to normal. I have developed more symptoms and my doctor did more bloodwork. In December 2025 my CEA was 9.5 and alpha fetoprotein was 10.9. I was sent to a Pancrease-Bile Duct specalist because my bile duct is enlarged and cysts were seen in my pancrease. This doctor did not think my liver isssues were due to the cysts and sent me to a Liver Specialist. I have undergone more MRIs, MRCP, EUS, and MRE. I truly think I need a liver biopsy but this specialist has not done one. My primary doctor decided to have my bloodwork tested again to see my cancer marker levels. So, two months later just 2 weeks ago, my CEA level has gone up and is now 11.7 and my Alpha Fetoprotein level went down a little and is not 7.4 - which is still a bit high. What should I be demanding of my doctor's? I am so afraid that they are not going to figure out what is causing my elevated liver enzymes and tumor markers. I do have IBS, but according to my research, it would not cause my CEA level to be this 11.7. I need advice. I am scared that nothing will be done and then get told I am in liver failure or have cancer that they did not notice.

I am jaundice, I have itchy skin, I have stomach aches, sometimes I vomit. I am extremely exhausted - ALL THE TIME. I have pain in my right side under my rib and in my right back side.

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@luckylill13 could you insist on a liver biopsy? The symptoms you have described seem to point to liver trouble - but then … I’m not a doctor!

What is CEA?

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Maybe get another opinion…wishing you success at last !

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Profile picture for nycmusic @nycmusic

Maybe get another opinion…wishing you success at last !

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@nycmusic I too would seek an opinion from a reputable cancer hospital and push for a liver biopsy. (I understand it’s not a difficult procedure and is done with a needle). The jaundice coupled with rising CEA seems to be a clear sign to push hard for answers. Something is wrong.

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I agree that you need another opinion. The liver is often not the cause of elevated liver functions. In my case, it was due to medication, vitamins even caused elevated lfts. I also had pruitis (that awful itching). I hope you get some answers. Being sick without a diagnosis is awful.

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