Gillian has been overweight for most of her adult life and was diagnosed with type 2 diabetes in 2019. Four years later she began to feel very unwell and it took a further two years before she was diagnosed with advanced cirrhosis, via a letter. Gillian has yet to see a consultant in person. Thank you for sharing your story, Gillian
Since I was diagnosed with fatty liver disease, everything I’ve read suggests lots of people have it, but I’d never heard of it and nobody ever mentioned it to me or that I should get my weight under control so that I didn’t get it.
I’ll admit I didn’t always eat very healthily and have been overweight for most of my adult life. I’d started piling on the weight at senior school and when I first left home, I ate a lot of cheap, processed food, ready meals and pies. I was diagnosed as pre-diabetic in 2017, then type 2 diabetic in 2019. My GP sent me on a one-day course which explained what diabetes is (some of it made sense, some of it was a bit beyond me) how much sugar there is in different foods and eating complex carbohydrates. I did make some changes to my lifestyle, but I do like my food and found it hard to cut back. 
I was at my heaviest during Covid, just under 23 stone and probably eating a lot of stuff I shouldn’t have been, because it was awful being bored and sat at home. I was already prescribed metformin and following lockdown ending I had tried to watch what I was eating and had lost some weight myself, but my sugars carried on climbing. I was prescribed Trulicity to help control my appetite which helped me more weight but my sugars didn’t improve.
By 2023 I was 19 stone and I went to my GP because I was having stomach problems and generally feeling unwell. They didn’t find anything startling in my blood tests, but I was referred to the gastro department at the hospital. I heard nothing for weeks until eventually I got a phone call, not a face-to-face appointment. The gastro guy ordered a battery of tests, including a colonoscopy which was a three-month wait. I got a letter a few months later saying they’d found a couple of polyps and I had an irritable bowel, but otherwise everything was fine.
FibroScan results
However, they also asked for an ultrasound and another battery of blood tests, including hepatitis and AIDs tests. I queried that but was told there was nothing to worry about. I had a scan in May 2024 where they injected me with dye and took pictures, but I didn’t understand what for, then in March 2025 I had a FibroScan. A few days later the FibroScan results were added to my NHS app. It said 23.9 and F4 which meant nothing to me, so I Googled them and basically sat and cried – I had advanced cirrhosis. Then I stupidly Googled the prognosis, which scared me even more.
I didn’t understand why this result had just dropped into my app and I’d not had a letter. I kept ringing the gastro unit but was only getting an answer machine. I left messages asking them to please call me as I was really worried. While I waited, I found the British Liver Trust online and learned more about fatty liver disease and that it’s not just alcohol that causes cirrhosis. My diagnosis now made sense.
After a week of waiting for the gastro unit to contact me I finally drove up there. The receptionist said the best she could do was promise someone would call me and they did – eventually. They said a letter had been typed but wasn’t ready to send out and they would try to get it issued as soon as they could. It came a week later and confirmed what I’d already Googled. I had cirrhosis caused by MASLD and should manage my diet and do what exercise I could. Because there was a higher risk of liver cancer, they would scan me again in six months and the liver team would contact me then.
To give someone that bombshell of a diagnosis and say ‘See you in six months’ is disgusting and I complained to the hospital PALS team. The whole process had taken nearly two years, and I hadn’t seen a gastroenterologist face-to-face once to ask about the diagnosis and what it means for me. How can that be right?
I contacted the British Liver Trust’s Nurse-led Helpline. The nurses were really lovely and helpful and encouraged me to pursue my complaint, saying someone should have sat down with me and gone through the specifics of my case. They also directed me to the Trust’s literature so I could read more about MASLD and how keeping healthy, losing weight and keeping my sugars under control would help my liver.
I’m still trying to come to terms with how I’ve ended up where I am. I was in hospital with pneumonia in 2021 and remember one of the doctors saying my liver results were deranged – it stuck in my mind because it’s such a weird thing to say. He said it was probably because I was very poorly and not to worry. Now, looking back, I may already have had a fatty liver and was possibly developing cirrhosis, but there was no follow-up. It just doesn’t seem to be on anyone’s radar.
The pain that liver disease can cause could also explain the pain I was experiencing on my right side which I first noticed in 2023. I’ve also had lymphedema in my lower legs for about ten years – I was told it was idiopathic – was it really or was it because my liver wasn’t functioning very well?
‘Keep going’
In June 2024 my diabetic nurse swapped the Trulicity for Mounjaro. My HbA1c was 96 then and just four months later it was 56 – the last 
time it had been that low was 2017! I just wish that had been done a few years earlier, so my liver wasn’t as badly affected. I’m now 14 stone 7 pounds (as of July 2025) but still classed as obese – I need to lose 3.5 stone to have a normal BMI. The last time I was 11 stone was when I was aged 12.
The nurse on the Trust’s helpline said: ‘that’s fantastic, keep going, you’re doing so well’, and my latest tests have shown a slight improvement in my liver, but it’s still not functioning as it should. I’m now trying to exercise more and recently went swimming for the first time in about 10 years because I no longer feel so self-conscious about my size.
If I could go back in time I would have been more forceful with my doctors. I probably sat back and thought ‘oh well, if it’s bad, they’ll do something’. The NHS is so under-resourced that you can very easily slip through the net so I would encourage people to be more proactive, ask questions and query stuff if they’re worried.
I can only wholeheartedly recommend speaking to the British Liver Trust’s nurses and looking at their literature because there’s a lot on there. You’re not on your own, there are people out there who can guide you.
