Rebecca’s story: “If you don’t feel 100% seek medical advice and get answers, don’t just brush it under the carpet”

Rebecca was diagnosed with autoimmune hepatitis at the age of 31 after experiencing fatigue and pain. She immediately felt better when her consultant prescribed prednisone but after the birth of her daughter Rebecca's 'world came crashing down' when blood tests revealed her liver enzymes were in the thousands. However, with the support of her consultant, liver nurse and the British Liver Trust, Rebecca now feels well, has lots of energy and is the best mum she can be. Thank you for sharing your story, Rebecca

My journey with autoimmune hepatitis began in 2019. I suddenly started to feel unwell and my energy levels had declined dramatically. Despite sleeping 10-12 hours each night I was still feeling incredibly tired. My full-time job as a beauty therapist was becoming challenging, I was feeling exhausted on each shift and even climbing the stairs at work was becoming a real effort. I felt weak, often getting pains and stiffness in the bottoms of my feet and lower legs.

Over time, this impacted my mental health, I felt so tired and exhausted that during my spare time I just wanted to shut myself off, rest and sleep. I knew something wasn’t right so I reached out to my GP who ran some blood tests. I was told my that my liver test had come back abnormal and they wanted to run further tests to rule out a number of things. Crohn’s disease was mentioned, along with rheumatoid arthritis and lupus, all of which I knew very little about. I was referred to a rheumatoid arthritis specialist to begin with but quickly discharged when they decided that was a red herring. Getting a diagnosis wasn’t easy, it was long road of worry and uncertainty.

Feeling better after prednisone

Then in 2020, at the age of 31, I was finally diagnosed with autoimmune hepatitis and referred to a liver specialist who quickly prescribed me prednisone. Starting the steroids, I instantly felt better, I finally felt like my old self again, I had more energy and the fatigue had improved. I remained on prednisone for several months and eventually the disease went into remission. What a relief, after a long journey and a rollercoaster of emotions, some good news at last!

I began enjoying life again, going to the gym, walking, going on holiday and in 2021, I started planning my wedding. In April 2022 I got married and my husband and I were looking forward to our future together. In October 2022 we found out we were expecting our first baby and were over the moon!

I was monitored closely during my pregnancy because of my autoimmune hepatitis but was lucky enough to have a brilliant pregnancy, with no complications. I felt fantastic, the best I’d felt in a long time! In June 2023 we welcomed our baby daughter into the family and all was well.

Routine blood tests showed my liver enzymes were in the thousands, the highest they had ever been

Then, in September 2023, my world came crashing down when my routine blood tests showed my liver enzymes were in the thousands, the highest they had ever been, even before my diagnosis. I was in shock – despite having a young baby I felt well and had little fatigue.

A new liver specialist took me under his wing along with a wonderful liver nurse who was really supportive and pointed me in the direction of the British Liver Trust for further support. Being a new mum and having all this support around me, along with the amazing help and support of my husband and my family was a breath of fresh air. Before I started medication again my specialist wanted to do a liver biopsy and I had that in November 2023. The procedure itself was uncomfortable, but didn’t take long and after a couple of hours resting I was allowed home.

The biopsy confirmed a lot of inflammation on my liver but minimal scarring and my specialist started me back on prednisolone immediately and then introduced azathioprine which despite reading about the side affects, I reacted well too. I was then back and forth to the hospital for fortnightly blood tests and regular check-ups with the specialist and steadily my liver enzymes came back down to normal range. I was told by my liver specialist that the birth of my daughter had triggered a flare and that’s very common.

British Liver Trust's support

My appointments are now every three months and I’m off the steroids and just on azathioprine which I will have to continue for the rest of my life, but I feel well, with lots of energy and I’m able to enjoy my baby daughter and be the best mum I can be.

This rollercoaster journey has taught me how important it is to listen to your body and if you don’t feel 100% to seek medical advice and get answers, don’t just brush it under the carpet. It’s been a long and draining progress but I’m so glad I reached out when I did, otherwise my journey could have been very different.

I’m so grateful for the care and support I’ve received from my family, the NHS and the British Liver Trust.


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