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Autoimmune Hepatitis - accepting diagnosis
Hi, I'm really struggling to accept the diagnosis of AIH that was given to me in Dec 24. I have tried really hard but just don't believe I'm sick or that I have a 'disease'. I've never been a 'sick' person and on occasions when I've needed medical involvement it's always been for things that a bit of surgery could sort and then I just carried on as normal again. I didn't feel sick last year when I was told I needed to be admitted to hospital and I feel like the doctors used a lot of scaremongering and quite frankly applied a sledgehammer to break a nut in their approach. I had an awful experience when I was in hospital and don't trust the judgement of the doctor who made the diagnosis. I felt a lot worse when I left the hospital then when I went in because of everything that was done to me and how I was treated. I've had awful side effects from prednisolone and am now weaning myself off it completely - against medical advice but without any problems. I'm still angry & upset that despite asking, I was never told about likely side effects on the pred. I've tried really hard to accept that I am 'sick' but I just don't feel it - and I don't accept that I feel well because of medication I am on. Coming off the pred by myself, to me, shows I don't need it. In hospital my liver levels decreased 40% in a week without any medication but I was never told this at the time - I was just told I had to take steroids. There was no discussion about spontaneous remission and whether I wanted to see how far the figures could go on their own without using harmful drugs. I wasn't consulted about anything they did to me in the hospital and just felt like a lump of meat being kicked around. The outpatient consultant is a nice lady but I just don't feel like I want any involvement with any doctors any more as I just don't feel like I could ever trust them again. I also don't believe I would ever approach a doctor if I felt a bit under the weather again. I don't have the symptoms of AIH. I don't see the point in asking for a 2nd opinion as they'd just look at the notes from the first doctors 'diagnosis' and go on that. Anyone else felt like this? Would really help to know how you dealt with being told you were 'sick' and had an 'incurable disease' when you actually felt ok until a load of drugs started being pumped into you. I'm usually a very cheerful and optimistic person 🙁
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Good for you. The quality of life should prevail. All the best.
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1 ReactionI”m joining the discussion late, and wondering how you are feeling now, and if there has been any more movement on your issue.
I’m sure you have done enough reading by now to know that liver disease can be asymptomatic until the disease has progressed. My blood tests associated with annual physicals have been showing high liver enzymes since about 2019. I’m now 68 years old and in excellent health. All of my markers (BP, cholesterol, triglycerides, sugar, etc.) are perfect. I take no meds, only a few supplements (calcium, Omega-3, D and B12). The only issue for the past several years has been my liver enzymes. I moved and have a new doctor. She suggested an ultrasound of the liver, which was negative for everything, including fatty liver (which apparently is quite common by my age). Then I had an MRI of the liver, also negative. Finally, in order to put an end to the question, a liver biopsy was recommended (needle aspiration). The results of that are: “inflammation caused by your immune system, not by alcohol, fat, viruses, iron, copper or cancer. This pattern is strongly suggestive of AIH. The good news: there is no cirrhosis, no major damage, the scarring present is early and mild.”
You don’t say where you are located, but it sounds to me like you’ve got some lousy doctors there who can’t speak to you in terms that are understandable. If it was me, I’d look for a new doctor. When we moved to our new state, we had to find new docs, of course. We ended up finding, and then firing, two docs because we were not happy with them for one reason or another (uncaring, incompetent). Third time was the charm, and we love our current GP. I fired the first gastroenterologist I saw, too. He was young and cocky and when I said I had done a lot of reading on liver issues, he rolled his eyes and said, “Oh, you GOOGLED IT,” like I was a moron. I never went back to him. What do these doctors THINK you are going to do when you have to wait two months for an appointment?????
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1 Reaction@sarah217
Hello Sarah,
I have diagnosed with autoimmune hepatitise too. Im compeletly healthy, last month I had fever for 10 days. In hospital I was told need some tests and after that I diagnosed with this disease. Im still shoked, I feel healthy without any symptoms, but my blood tests have shown uncurable disease.
I think more people are being diagnosed with auto immune diseases.
Are they putting you on any medication?
If they are, find out about potential side effects so you can prepare yourself if they hit.
So far, apart from the initial 2 weeks of hell in the hospital I haven't allowed the diagnosis interfere with how I live my life. Except last year I had what felt like a never ending list of medical appointments.
It's a total shock when you're diagnosed, especially if you feel fine. Get a good doctor and don't be scared to change doctor if you're not comfortable with the one you've got.
And don't let this stupid disease rob you of any enjoyment in life.
I went to New Zealand at the end of last year, I still work full time, I'm doing s kitchen fitting course in March (as I fancy having a new kitchen) and a carpentry course in June. I travel around Europe and since 30th December I've been off the steroids.
The diagnosis shouldn't stop you carrying on being the person you were before. The only real difference to me is increased cost to travel insurance and 3 pills before bed. And quarterly blood tests because the pills I do still take are immunosuppressants.
The shock will go and then hopefully it just becomes something in the background heat you rarely think about.
Good luck.
@lulubelle57
Hi, only just read this.
I fired my consultant last July and am now with an amazing professor of hepatolgy who is completely down to earth and talks to me like I'm human. It's made a huge difference. The previous consultant had me on the wrong dose of azathioprine. I increased it myself, got thoroughly told off for doing this but it's agreed I need the higher dose and this has allowed me to come off the steroids.
I'm still struggling to see myself as 'sick' and living my life pretty much as normal. I'm based in Bulgaria and commute in London, England for work (I'm English). End of last year I visited friends in New Zealand and I'm doing various construction courses to help me in my DIY projects at my home in Bulgaria. I'm 61 in a few weeks.
All my liver results are normal and I've been in remission since last April. Only slight blimp is last blood test showed some of my blood counts gone out of range but that's getting redone next week.
I still can't accept it's an accurate diagnosis but I guess at some level I must accept something as I keep taking the azathioprine every night.
Thanks for taking the time to ask me how I was doing I really appreciate the kindness. And I'm glad you sound like you're doing well too.
I was diagnosed with the same but never never have the symptoms of it. My lab work was always good till I started taking prednisone and azathioprine. My enzymes were a little bit high in one occasion but after that they are ok. Let see what the Dr. will tell on this coming Feb appointment. I don't like the Doctor either. But like you say second opinions will be the same when the look at the records. So I really don't know what to say but stay positive. If you are in Orlando area and find a trustable hepatologist let me know. Looking for a better one.