Millie’s story: “I thought autoimmune hepatitis would make my life different to what I wanted, so I’m proud of what I’ve accomplished”

Millie was just 18 and in her last year of A-levels when she was diagnosed with autoimmune hepatitis. Her medication caused joint weakness and pain and she could only get around with the aid of a crutch. However, with modifications to her prescription, working with her consultant and support from her college, Millie did well in her exams and is now enjoying a gap year in Germany. Thank you for sharing your story, Millie

I’d gone my whole life without any real health problems until 2022 when I was 18 and became quite unwell with a cold that never seemed to go away. I thought my immune system must be a bit tired after having had Covid, but in around April 2023 I woke up one morning and felt really different. I had a stomach ache and couldn’t keep any food down.

My doctor said it could be a number of things and ran some blood tests. He rang me later that day to tell me my liver enzymes were at 1,000, when they should be between 30 and 40. That was a real shock. I had more blood tests and a month later I saw him in person – by then my skin was itchy and he told me I was looking a bit yellow.

Everything now came crashing down. I was in my final year of college but couldn’t go in every day – I was sleeping so much because of the fatigue. Thankfully I had a lot of support from my college and mentors and still managed to get a good grade.

I was finally referred to a specialist and had a liver biopsy in July. I was completely alone and terrified, but it was all right. It’s not that invasive and there’s definitely worse things you can go through. I was looked after and supported amazingly by the NHS and after four hours of recovery I went home. Unfortunately, because of the state the NHS is in, I had to wait three months for the results. I had no medication and the upper right quadrant pain, fatigue and itching were getting worse. I was in quite a bad place and have blocked out a lot of that time because it was so difficult.

Steroid prescribed 

The biopsy showed there was no scarring, only inflammation. While the results were inconclusive, my consultant was 99% sure it was autoimmune hepatitis. All he told me was that it’s an autoimmune condition where cells attack the liver because they think it’s a foreign body and he prescribed a steroid called Budesonide. I needed to know more about the condition, so I Googled it and started spiralling.

My consultant had said it was unlikely I would get side effects from the Budesonide, but I developed joint weakness and pain and had to use a crutch. I also had extreme hunger and quickly gained two stone in weight – I’m only 5ft 5ins and my teeth felt very sensitive too. I told him the side effects were unbearable and he said: “Oh well. That, sadly, is just what happens.”

I had a lot of rude comments about my weight gain which made me feel alone and insecure and people who I thought were close friends said I must have drunk too much alcohol on my 18th birthday. Maybe it’s funny one time, but when it’s still continuing into the second year of the diagnosis, I just couldn’t be bothered. I didn’t engage – if you give people attention back they keep feeding into it. There are so many different liver diseases which aren’t related to alcohol and more people have them than you think.

The British Liver Trust’s website was really informative and seeing other people’s stories made me realise it wasn’t all doom and gloom. I had no idea about diet or exercise so the information about that was really useful too. I now feel I understand autoimmune hepatitis better.

I’m taking fewer steroids now because I had good results from my blood tests, but might have to take more again. The results are always up and down, but since starting the Azathioprine I’m feeling a lot better, have less muscle weakness and don’t need to use my crutch anymore which is great. I’m still tired but not as extreme as before and still have the teeth sensitivity, but I’ve managed to lose nearly a stone in weight. It’s hard to get the weight off once it’s on, but I’ve been working hard.

When I saw the British Liver Trust’s 30 for 30 Challenge last year I was staying at home, didn’t have much to do and was feeling quite depressed. I thought I should do something for the organisation that is trying to help people like me, so I created art for every day. Lots of friends and family donated which was really nice of them and I raised £160.

Diagnosis is not the end of the world

I’m now spending a gap year Germany, still have blood tests every month at my local doctor’s surgery, then forward the results to my UK doctor and we have a telephone call about it. The appointments aren’t as often as they should be, but that’s because of how the NHS is at the moment.

I thought this condition would make my life completely different to what I wanted it to be, so I’m proud of what I’ve accomplished. I made the long journey to Germany, live away from my family and go to school every day. That would still be a big thing without any physical health issues, but it shows that if you work with your doctors there’s no reason why you shouldn’t be able to do these things. I now want to live out here permanently and get an apartment and a job.

Being diagnosed can be traumatising, but it’s not the end of the world. There are still so many things you can do, you don’t have to feel limited, it’s just about finding your own way around it. Stress won’t help you physically, so go easy on yourself and speak to someone about it if you need to. It’s not something that can be brushed off.

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