I have been affected by a kind of unknown autoimmune disease for the past 10 years.All the antibody tests were normal except for ANA which was weekly positive.The symptoms were vague in the beginning years which were mostly gastrointestinal.I have consulted many doctors and lots of tests done but still clueless.But symptoms started to manifest with pain in liver area,pale stools,loss of appetite,easy bruising,loss of skeletal muscles,red blotches in hands.A fibroscan was done last month and the score was high median 12.6 kpa and lowereing PT INR.Then percutaneous liver biopsy was done and the resuts were normal.So my consultant wants to wait and not ready for treating me with medications.I am worried if i will lose my liver without medications.what shall i do next.This is a horrible silent disease...
is liver biopsy gold standard? - British Liver Trust
is liver biopsy gold standard?
Hi Mahe, its terrible the not knowing but as far as a biopsy is concerned, when I had mine I was told that it was to confirm hepatitis C but would show liver cancer. I don't know if it is any good for autoimmune diseases other than to show what condition the liver is in, e.g. is it fatty, cirhosed, etc. If it shows none of those then any liver disease has not progressed to far which would explain your consultants unwillingness to treat when there isn't a definite condition. It may not even be liver but could be one of the associated organs like pancreas or gall bladder. Doubtless your consultant will start to look at these areas. Try to hold it together and not cross bridges you haven't met yet. Easier said than done I know. Good luck and let us know how you get on
Phil
Hi Mahe,
I have autoimmune liver disease and aside from the Liver Function Tests that reveal levels of inflammation and activity ( ALT, AST,Bilirubin as well as levels of globulin and immunoglobulin etc etc) I have always been led to understand that a Liver Biopsy is generally regarded as the Gold standard for determining autoimmune diseases of the liver as well as the degree of fibrosis ,if any
See the AASLD as well as the BSG Guidlines on autoimmune liver diseases as well as the numerous comments on this subject over on the AIH Support Group web site.
Hope you can obtain a definite diagnosis regarding the underlying cause for your various symptoms very soon.
Best wishes.
.
Yes, liver biopsy is the standard but it is not infallible - the accuracy of the result depends on the radiologist and the sample taken. There have been cases where the biopsy sample was taken from an area where no disease was present, so it had to be repeated.
But have you seen a rheumatologist? I have been diagnosed with lupus in autumn last year after almost 2 years of tests initially geared to understand why my liver function tests were high. I also had positive ANA and my hepatologist did look into primary biliary cirrhosis and AIH but the biopsy didn't show those. I was then referred to a rheumatologist who took everything into account, including random symptoms and I got diagnosed with lupus. It has taken me a year of lupus treatment before the liver function tests were back to normal. I'm not saying that this is your case but it won't hurt asking the question.