Disappointing news

I was really pleased to be able to report that I had been told that there was now no inflammation in my liver, it was the Research nurse that told me a message from the doctor as I was not eligible for the RESOLVE-IT trial. My bloods were all within normal range and I was feeling over the moon.

I had an appointment with the consultant and went along expecting to be discharged -I couldn't have got it more wrong. As I was discussing that I couldn't go on the trial, I mentioned how good it was that there was no inflammation in my liver and his face was a picture when he asked me why I thought that. Well the nurse had made a mistake and the message was meant to be that there was no fat in my liver.

So the results of the biopsy actually showed moderate degree of active chronic inflammation (7/8). No evidence of steatosis or steatohepatitis. ? feature of autoimmune hepatitis. Bridging fibrosis 5 - 6/6 and established nodules indicating cirrhosis.

I have had a full autoimmune profile and immunogloblulins to check for evidence of autoimmune problems, they showed weakly positive ANA and pANCA which has shown up in the past and all others were normal. They have asked for my biopsy to be looked at again.

I have had an ultrasound where they spent more time looking at my kidneys than y liver, and have a gastroscopy to check my varices on Monday. I feel really fed up as I was so happy that I thought the worse of my liver problems were over when in fact the biopsy results were worse than the year before and therefore loosing weight has been great for not having any fat in my liver but not anything else.

If I hadnt volunteered for the trial I would not have been offered a biopsy as all my bloods were pretty much within the normal range and actually my liver was getting worse and all I can think about is how I have been told for the last year how great the improvement was in my bloods and that everything was all ok now.


1 Reply

  • Dear Anne, could you please tell me what was your initial diagnosis? Were you diagnosed with fatty liver? if your blood results were normal, why did your doctor do a liver biopsy? My partner was diognised with NAFLD/NASH after a higher ALT and ultrasound showing mild fatty change in the liver. He suggested he lose the weight he carried around the abdomen,he wasn't even overweight. So in no time he lost weight and his ALT was back to normal. With no advice or warning from his private doctor he relaxed a bit and put a few kilos back. Almost a year past and after a routine blood test his ALT(78u/l) was way above the normal, he panicked..After only two weeks excercising and eating healthy he had another ultrasound scan and this time to his surprise there was no fat showing . His doctor performed a non invasive test called Fibroscan and it was 4.8 kPa.He recommended that he lose the excess abdominal weight he put on during those relaxed months. For almost 6-7 months his ALT , AST ,GGT were all normal. In one month he dropped from 75 kg to 65 kg losing 10 kg in no time. Last 2 months his ALT showed a gradual increase( on the borderline of the normal range), he couldn't understand why , in fact he even lost few more kilos weighing 61-62 kilos. He started reading about the importance of loosing weight gradually and he thinks this made a reverse effect on his liver. He blames his doctor not giving him a proper guidance on this. He decided to have another Fibroscan and he was upset about the result; 6.6kPa ( 2 points up just under a year ) Now he thinks he is having the beginning stages of fibrosis. Still normal ALT, but increased liver stiffness score.He is so confused and upset. He doesn't understand why suddenly things are changing although he hasn't put on any weight, excercising regularly and eating healthy.His doctor is saying if his score goes up to 8 kPa , he will consider a biopsy. How ironic, the same doctor assured him that he hasn't got NASH and carrying on with his lifestyle changes will be enough to prevent any progression. But the same doctor now is talking something less positive and more concerned .

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