My name is Preslie and I was diagnosed with Autoimmune Hepatitis twelve years ago when I was six. My AST/ALT were in the 1,000's. My parents took me to Children's Hospital in Ohio(where I live) and I was referred to a great G.I Specialist, Dr. Jane Balint. I was started on PredniSone and 6-Mercaptopurine. Over time my levels normalized and I was perfectly fine. I felt good and I looked well. Over years I had mini flare-ups, but nothing compared to my levels when I was first diagnosed. Then, this passed January 2011(of my senior year) I noticed my right side was hurting bad, but it felt different. So, I called my doctor and she decided to get labs, but they came back normal. About a month later I woke and was dry heathing and just felt very unwell and my side had still been hurting. The pain had never gone away since January. I looked in the mirror and I was as yellow as can be. I went to the hospital and my AST was 3200 and my ALT was 3120 and my Bilirubin was 8.0. So I was admitted. My levels continued to jump up and down. Dr. Balint decided it was time for another liver biopsy so after the biopsy was done they results showed a weird foreign invader that they couldn't identify. My levels started to going down but my bilirubin went up, went down, went up, went up.... etc. When my bilirubin went down to 2.0 I was released with tons of meds. A few weeks later I was back in there because I collapsed at school because I was in so much pain. I had ended up losing 10 pounds in 2 weeks, I was all the way dwn to 109lbs. I was severly Anemic and now had Hypothyroidism. About a week later I was released again. I got lab work done every week and at first they seemed to go down but then they started increasing rapidly, like jumping 200 counts in one day. I saw My GI specialist because she insisted and basically told me that if my levels go up again then I was going to get another liver biopsy. A few hours later my doctor calls me while I was in class and told me that my levels were about 980 and 800 and my bilirubin was 3.0 so she had me addmitted again and scheduled me for abother biopsy. The results showed that the foreign thing was gone and that my liver has started to scar. Fibrosis. I was released when my levels stablilized and felt better. The pain in my side still exsist today and gets really bad at night. Dr. Balint thinks it's damaged nerves and prescribed me two diff meds for that nurotin and lyrica, neither one hase helped. I have also been expierencing severe skin pain, like all over my body. It feels like a bruise. My eyes ring 24/7 and the tips of both my big toes are numb. Once in a while my pinky fingers tingle. When I was in the hospital ever night a nurse would wake me up becasue my hands shake, but I never knew that, nor anything was done abut it. The Chronic pain in my side never goes away and I can honeslty say I don't know how much longer I can deal with this, especially when no one knows what wrong. To this day my levels are still not normal and are jumping up and down. I still get lab work every week.


Input would be nice

Thanks,
Preslie

I hate it when someone so young comes in with such a basket case of problems. You sound so brave and mature. It sounds like you have a good team of doctors that are treating you. They sound like they are actively engaged in your case. The only suggestion that I can make is asking your parents to request that a pain specialist join the team. My guess is that a pain doc. can pull the pain levels down to where you are more comfortable and functional. Best wishes, Sweetie.

I posted to your other post, but ....Have you ever/recently been tested for celiac disease?
http://www.ncbi.nlm.nih.gov/pubmed/15645466
http://www.csaceliacs.org/library/hypothyroid.php