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@jtg8771, I want to welcome you to Connect.
I was once believed to have AIH. Since it was nearly 20 years ago, my memory of the details is sketchy. I also had multiple tests when my liver enzymes inducated that something was wrong with my liver. After different liver diseases were ruled out by lab tests, and since I have another autoimmune condition, it was a logical decision by my gastroenterologist to consider the possibility of an AIH diagnosis. I was prescribed prednisone, and then Imuran was added. But the Imuran caused my to bruise and bleed easily. I think my liver biopsy indicated that I did not have AIH, so he sent me to a Hepatologist (liver specialist) to get my diagnosis.
It is not unusual to have trouble determining the AIH.
I would like to share the information about Autoimmune Hepatitis from the Mayo Clinic Patient Care & Health Information>Diseases & Conditions. I like this site because it is easy to read and understand while being very complete and provides accurate information.
https://www.mayoclinic.org/diseases-conditions/autoimmune-hepatitis/symptoms-causes/syc-20352153
As for your daughter, How long ago was her biopsy, and has the doctor provided you with any information about the results? Your daughter should be being monitored with labs regularly. I think you have a right and a responsibility to request to see the doctor (GI) who has specialtu training to address your concerns and questions. Your questions are appropriate and if you are not getting satisfactory care, you ought to look for a different specialist (GI with experience/training in liver disease or a liver specialist.
What insights did you learn from the AIH information? What questions do you have? I look forward to hearing from you.
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Yes she is going every Six weeks for lab testing and the biopsy was a year ago. He did say that it did show a very slight AIH but also showed something else that we then went in and had an endoscopy done to rule that out. So that's when he went with just the AIH. I have voiced my concerns through this whole year and we just don't get anywhere. I fell like I don't know enough about this to fully feel comfortable. The practitioner we see just gives us the same answers over and over about getting the liver enzymes normal then we will go from there but after a year they still are not normal after increasing meds and everything he can't seem to answer these questions.