First, I want to thank you for the helpful information, I really needed to hear it from someone who has been there facing this decision. So happy it helped you. I wish you continued good health.
Second answer, I hear you. I too have been bounced for over a year now.
My first liver doctor I felt was not effective or competent. So I searched for a better one. I found him. Always make sure your doctor has had a fellowship was advice I got from this board. I now do.
It has taken a few appointments, much blood work (not sure what all they do) but my new liver doctor felt my liver problem was more autoimmune . The first one felt it was NASH and I should diet. He also found my ammonia levels were at 147 and put me on Xifaxxan. Next appointment without a blood test he told me I could go off of it. I knew he was clueless. I was still sleeping about 18 hours a day. But he felt I looked good. Unbelievable.
Recently, I went to my 3rd Immunologist who did his own test, didn't agree at first with the second liver specialist but had a conference call with my liver doctor and they now agree that my cirrhosis is from autoimmune hepatitis and linked to sjogrens. The treatment now would be imuran.
Last year when they found I had sjogrens my first immunologist noticed that my liver enzyme's were high, he sent me to the first liver doctor who did a liver biopsy and came back with full cirrhosis. I was shocked because I don't drink or have any type of life style that you associate with cirrhosis. I know they tested me for every hepatitis as far as the A, B, C etc. I had none.
Autoimmune is tested with different tests, I think. If you google autoimmune hepatitis a few good articles come up first.
Now for over 10 years I went every six months to an endocrinologist for blood work for hormone therapy because of an early hysterectomy.
My liver enzymes were up from what the first immunologist told me from all the past blood work they could get from her but the doctor never said a word to me. This could have been found sooner.
It took my getting very ill and not being able to get out of bed and demanding my doctor to find what was wrong with me before anyone found anything.
By demanding I mean bursting into tears in his office when he said they could find nothing and was just going to send me home. Then they did the extra blood work for sjogrens. I had never heard of it. I wasn't prepared for the next year, all the tests, the doctors and still feeling bad and wanting my life back. Until, I searched and found the second liver doctor. Then fighting for the right sjogrens doctor. Its overwhelming, frustrating and demoralizing.
But you must fight for yourself. Go on line and read. Write it down when it seems to be important. Search your local hospitals, search the doctors, look up their education and then find out how long they have been practicing. Change doctors if you feel they aren't doing right by you. Hope this is a little helpful.
Gcb
