I became acutely ill 20 years ago and still do not have a good diagnosis or sufficient treatment due to lack of diagnosis. I was told that I either had some form of AI hep or hep C 20 years ago due to pos hcv antibodies. They did not have the test for virus backthen. I also was dxed with polyglandular dysfunction and pos. ANA. I was treated with interferon because they thought I'd die faster on prednisone if it was hep c. In the middle of therapy, they cam e out with the virus test and Iwas pcr neg though still acutely ill. You woulda thought they'd say, oh, you have ai hep. But they didn't. Years went by while I was told I had "fatty liver" that was so bad it caused polyglandular dysfunction, polycystic ovary, vitiligo, sjogrens, degen disk disease, RA, and other problems. In short, fatty liver doesnt cause these things. So my rheumatologist saw me really sick and fatigued after going off my immunosuppressants for sjogrens and ran an AMA, which came out highly positive. It comes out negative when Im on immunosuppressants, though my LKM1 comes out mildly positive even on immunosuppressants. Within a couple days of that visit I was in the hospital with red lines all over my abdomen and really sick and et get 100mg of pred IV and I get well within an hour with the red lines gone. So Im put on steroids for a week and told to go to the liver doc.
I have all conditions that go with PBC and all that go with AI Hep. I bring the AMA done by Qwest labs to Mayo, and they rerun it, after me having been on that huge amount of steroids and back on my immunosuppressants for sjogrens and it comes out negative again. The doc said that even if it came out positive, my alk phosphatase wasn't high enough for me to have AI hep or PBC. I asked for urso at least and got it because the doc said it helped fatty liver and gallstones.
So then, I find out that if a person has polyglandular dysfunction or hashimotos hypothyroid as part of their AI hep or PBC, then the alk phosphatase will not be elevated in these people and should not be considered a factor in diagnosis.
So here I am wondering, what in the heck? It is so hard for me to communicate to doctors what is wrong with me because I have no diagnosis. My family doc has been concerned because my enzymes just won't come down. I was put back on steroids for a bad respiratory problem, and I asked her to test my enzymes while I was on the steroids and see if they normalized, and she told me my last visit that they did and smiled. I told her what my rheumatologist thinks, my gi (not hepatologist) think, that I have autoimmune hepatitis and or pbc. She smiled.
My problem is that Mayo is the transplant center in my area. I wish I could bring this up with my hepatologist in some way that wouldn't offend him. He's a good guy, but I don't know why he is doing this. Everytime I have to get steroids, he freaks saying thats hurting my liver, but they are keeping me alive, especially the last few times. And my liver gets better and I feel so much better.
How can I talk to him about this? Do I print out what I found about alk. phosphatase? this is my life.
Thanks for listening and any advice you can give. Marji