My first post, but I have been lurking since Dec 2012 and at that time was told my lab results from Sept AST 157 and ALT 438 (the call I got in September was that labs were fine -see you in Dec). I was on a statin (ironically, probably never needed it). So I have been on the journey ever since. I'm a 55 y/o female and originally trained as an RN (but been on the business side for many years). Never knew much about liver disorders other than the basics from nursing school. Even though I have been off the statin, enzymes remain elevated. Highest ALT was 499 and AST 225. They come down a little but never to normal. I had an ultrasound which was normal and having a liver biopsy in early April. The worrisome labs now are my ANA and SMA. ANA is borderline positive at 1:40 and SMA very positive 1:160 so suggestive of autoimmune hepatitis although I have seen a published article about drug induced AIH by statins which resolves after the drug is withdrawn. I can hope. I am on my second GI doc and have asked to get to a hepatologist (don't mean to insult the GI guys, but they just don't see enough of these cases. Long term steroids are a big deal). Luckily I just changed my primary doc who is very sympathetic and admits she doesn't know much about the disease and will refer me to anyone/anyplace (I am thinking about an eval at Mayo in MN as seems they have a great deal of expertise). Finally and thankfully, no other symptoms whatsoever. I feel great and want to keep it that way, but feel this impending doom. Obviously, no alcohol, NSAIDS, and off all meds.
Anyone out there living with this? The not knowing what's to come is lonely.
Thanks for being here. I have learned a lot on these boards.
I think the Mayo clinic in MN is great. I have been there as well as family members. In about 1 week, they have it all figured out. They are teaching and preventive oriented too, so you will get lots of info to help keep this under control. Mitochondrial antibodies are positive in both autoimmune hepatitis and primary biliary cirrhosis. I think a liver specialist is needed. Anti-histone antibodies are positive in many cases of drug-induced lupus. I wonder if that would be helpful in your case to see if the statins are implicated, and perhaps recovery will take place in time? A biopsy is probably the definitive answer. I hope you get answers and some encouragement soon! Mayo Clinic is a positive experience compared to much of the health care elsewhere. They are organized, thorough, and get it done in short period of time with a treatment plan to take home for follow-up with your regular Drs.
Thanks! That is so helpful. My mitochondria antibody was negative, but I have not had an anti-histone. You confirmed what I thought the benefit of going to Mayo would be. Thought I'd try the local hepatology program first. It claims to be multidisciplinary and has an academic affiliation. Go from there. I am getting to know "the look" from docs when I say "could this be AIH?" Then they go out of the room for a while and come back with what seems to be a random list of tests and don't give me much opportunity to ask questions. If this is my diagnosis, I know it may be chronic and relapsing and I need a doc who is willing to be my partner.