Hepatitis Autoimmune Community
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Avatar universal

Does anyone know how AIH is diagnosed? Should I still be concerned?

Hey everyone,
Mid 20's and a bit concerned about my health here. In late very March I was hospitalized because I was having right upper abdominal pains for 3-4 days that kept getting worse unde my rib cage. At first I thought it was gas pains. It got to the point where I started having chills, sweating, passing dark urine and my right ribs hurting that I decided I should seek medical help as its now more than gas. At the hospital I was given an ultrasound and chest X Ray  (everything came back normal). However, my blood work came back and it showed I had elevated liver enzymes and told me I have mild jaundice and Non viral hepatitis, as well as a possible UTI. Yet I didn't have yellow skin or eyes. I kept asking the doctors about my liver enzymes and they wouldn't Tell me how high it was. The only thing they told me is they suspect an autoimmune cause and wanted to do what I felt was an invasive liver biopsy. So I decided to be discharged since the doctors were hiding information, trying to give me bad drugs I was not informed about, and zero bedside manner.  Plus the pain had subsided when I was given pain meds and nexium at first.  When I got my discharge summary My Alkaline Phos: 274, AST: 89, ALT: 174, and ESR: 74. They tested me for AIH using the smooth muscle antibody test and it came back positive as well as lupus and some other mitochondria test which came back negative. . I decided to follow up with my regular doctor and she retested me. My liver AST went up to 285 the next day and my GGT was 385. However, my Anti smooth antibody still came back positive, but at a 1:40 titer. She still suspected a "virus" and referred me to a GI specialist because she felt anyone could test positive for these autoimmune test and the liver enzymes were not correlating to the titer. It should have been higher.

I decided to get a 2nd opinion altogether with a new team of doctors at a very reputable facility in my city and when They retested my liver function about 3-4 weeks later it started coming back normal. As of April 17th My New levels were Alk Phos:108, AST: 22, ALT: 32, bilirubin:0.5, Sed rate: 32. Also, my test for the smooth muscle antibody was now coming up negative. I asked my doctor about this and he said it's possible the whole time I had a "false positive" and I caught a virus or have gallstones. What virus?! I'm Hep A-C negative, HIV negative and STD negative. No stones were found in the ultrasound or CT scan. My blood was checked again Earlier in May and it's still showing signs of improvement.

Another thing my doctor discovered is that I really did have had a UTI as my urine test was showing signs of it and he also discovered that my pancreas enzymes were elevated. I'm upset because looking back at my discharge summary from the hospital it was elevated then too and could possibly explain why I was still having abdominal pains in the first place. The doctors at the hospital never mentioned it to me.

Sorry I know his is long it's just I'm very frustrated about my health and the more info I provide maybe someone would notice something me or my doctor didn't catch. Anyway, it's now May and I'm still having abdominal pains. My doctor sent me for an abdominal CT scan and the results came back that everything was normal. However, my lipase is mildly elevated (lipase 74) and assumed it could be a cause for the pain.

Basically what I'm trying to say is do I still have to worry about AIH being an issue since it's now coming up as negative and my liver function returned to normal in the space of a few weeks? I never did the liver biopsy. Everything is looking normal and the pain is in that are, but under my ribs.
1 Responses
Avatar universal
Certainly follow-up with the blood work. But a liver biopsy is very likely needed. I have had many, just shy of two dozen biopsies (very usual). But I haven't had any problems with the many procedures. Just make sure you have a good team .... and it is "your" team, so you choose!
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