Possible Autoimmune hepatitis. Smooth Muscle Antibody detected waiting for appt with specialist. Please help.

[Scared3]

Hi All.

I recently went to my doctor for some pain I sustained during a work out in my upper right quadrant. He sent me for an ultrasound and it was found I have an enlarged liver at 17.2cm (also fatty liver). He did some autoantibodies/autoimmune bloods and I tested positive for Amooth Muscle Antibodies which he tells me may be Autoimmune Hepititis. My liver function tests have all been within normal range for the last 4 years + and still are normal so I am very confused! He is sending me to a liver specialist but I haven't even received confirmation from the hospital so it could be a bit of a wait before I get in. My GP said they will do tests and probably medicate. I am petrified of steroids as they make me insane! I am 36 fit, healthy and my naturopath has put me on an autoimmune paleo diet while I wait. Can anyone tell me what the steroids do in terms of AIH? Will I need them if my LFT is all normal? My itching has gone since the diet started but my anxiety is through the roof not knowing what is going on. If my LFT is all normal does that mean it is currently in remission? Any info would help please. I have driven myself crazy with horror stories on Google

A scared Mum!

[bleeny]

Some people have Smooth Muscle antibodies and actually have nothing wrong with their liver. I think if you had Autoimmune Hepatitis your ALT would be raised. I wouldn't worry too much. There are other blood tests they can do to rule it out.

[Scared3 in reply to bleeny]

Thanks Bleeny. My pathology report said may be Autoimmune Hepititis type 1 and because my liver was enlarged on ultrasound my GP has sent a referral for hepatology and said they will do more tests and give me meds so I got very worried. Thanks for the reassurance!

[bleeny in reply to Scared3]

Sorry, meant to add I was terrified of Prednisolone as it makes me insane too. The hepatologist was extremely understanding and put me on Budesonide instead which has been fantastic apart from making me hairy! I feel really well and have since had Bud reduced and immunosuppressants increased. No side effects. I'm not aware of having a chronic illness at all and life is good. Best of luck.

[Readlots]

I have autoimmune hepatitis and like you I was wary of steroids. My consultant agreed to treat me with just Azathioprine which has been very successful for about 5 years. I had a flare up this year and agreed to steroids at that point which made me feel much better and now I’m back to just Azathioprine. Talk to the liver specialist, I’m sure they’ll find a treatment that works for you. I have also found that yoga and meditation really help with the anxiety.

[Scared3 in reply to Readlots]

Thanks so much. I can't get my mind off it and I know it won't be helping! My naturopath put me on an autoimmune paleo diet while I wait to see the specialist so fingers crossed that helps! Thanks for letting me know there are other options than steroids. Hope you are well.

[Hidden]

Hi

If your bloods are normal then I am assuming your liver is not inflamed. Steroids are used to reduce inflammation and is why it’s used in AIH. Immune suppressants such as azathioprine are used to reduce the attack on your liver. Some people with AIH don’t have either medication if it is under control.

Take care, don’t stress too much it will only make things worse,I know it’s easier said than done x

[Scared3 in reply to Hidden]

Thanks Angel46. My liver was enlarged on ultrasound which is what made the GP test my SMA which were positive the pathology report said may be autoimmune hepatitis type 1 and my GP just said he will send me to hepatologist and they will do more tests and probably medications. I asked how it could he if my liver function test has been normal 4 years in a row and still are and he just said he didn't know much about the liver. I am trying so hard to not stress but it really does keep creeping in to my mind and all I think of is my kids growing up with a sick Mum! Fingers crossed meds won't be needed. Thanks for your reply x

[AyrshireK]

There is no one test for auto immune hepatitis and the fact your ALT isn't raised points to no ongoing inflammation so in all likeliehood no need for steroids. Glad you are being referred to a liver specialist for further assessment.

[Readlots]

I know it’s easier said than done, but try not to worry. I was diagnosed in 2012, my kids were 16 and 14. I also have PBC and a Alpha1. Yes, I get tired, but I work full time, I’ve been to a very concert, play, parents evening the kids had. I’ve taken them to and from University every term and they have grown up confident and self sufficient. Autoimmune hepatitis is not the worst illnesss to deal with. You just learn to pace yourself to deal with the fatigue. You’re coming to terms with a diagnosis for a long term illnes. That’s hard. But be kind to yourself and give yourself time to adjust. Your kids are resilient, honestly they’ll be fine and you’ll teach them how to overcome challenges as you learn to come to terms with AIH.