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Liver4Life
1,133 members159 posts

Try Another Hepatologist or just wait?

No one knows what's the cause, but I do have inflammation in the liver and it's been ongoing. I've been to both a gastro and a Hepatologist and they said crytogenic hepatitis. However, its treated like a disease (kinda, no medication though)

I was offered to try again and get a third opinion. Should I try, or should I just wait?

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I think I’ve had a situation similar to yours. I’ve had very high ALP (>600) and ALT but I’m negative on AMA. There is a certain percentage of PBC patients (<10%) who have PBC with negative AMA and that’s what my doctor concluded about my cryptogenic inflammation. I’m on Urso and the inflammation has been reduced. The other thing to note is that I have dry eyes and mouth, osteoporosis and high cholesterol, all of which are side issues with PBC. Do you have any of these issues?

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For me, it's the fatigue, pain, and I do get dry mouth (but to be fair, I also have a jpouch so it's a hella lot easier to get dehydrated) My doctors can feel that its inflamed, the biopsy said it was inflamed, but they dont know why. My levels of AST and ALT, and to an extent GGT are elevated, ALP is "high" end of normal (and IGG elevated), things that point kinda to Autoimmune Hepatitis, and being that I do fit the demographic, it would make sense, but I dont have the any autoantibodies for it. Same thing with PSC, cause I did have UC, but certain things don't click. Hence Cryptogenic.

I know technically cryptogenic is an answer, but being that my hep wont give me medication or really do anything about my pain or tiredness, it's frustrating, particularly because I'm a student and I can't be passing out during a class (which has unfortunately happened. )

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Gosh, that really does sound rough. I do think another opinion ASAP would be a very good idea. Good luck!

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