Lucy’s story: “Without my GP making sure my Autoimmune Hepatitis diagnosis was found at the age of 19 I may not have made it this far”

Lucy feels very strongly about early diagnosis of liver disease and being persistent even when she was told “you can’t possibly have this, you’re too young”.  She is sharing her story so that others in a similar situation don't feel so alone. Thank you so much, Lucy

I am one of the very lucky ones whose GP was thorough enough to make sure my liver disease was caught early, which means I am currently far healthier than I would otherwise have been.

Way back in 2008 I was feeling a tiny bit more tired than normal so I went to go see my GP who ran a full blood panel just to make sure, as I’d had glandular fever in 2005 at age 15. My ALT on my liver panel was slightly up so she decided to just repeat it in a few weeks and see. A few weeks later it had crept up even more so she referred me to the local hepatology team just to double check.

It took a full year of bloods, ultrasounds, fibro scans and two liver biopsies (the first one was unusable as the sample wasn’t good enough) before my consultant sat me down and said: “I’m very sorry but you have Autoimmune Hepatitis. We don’t normally see it in people your age, but luckily it’s very early on so not much damage has been done and we can get medication started to help control it.” I was 19 years old and didn’t fully comprehend how huge this diagnosis would be.

Unfortunately, my path since then has been far from smooth. It took from my diagnosis in 2009 until 2012 to find a medication that both worked and my body could tolerate. During this time I got incredibly unwell, felt very lost in myself, angry at my body for doing this to me and taking the life I envisioned from me. I will admit at certain points I was a nightmare patient for my team, I was ignoring their advice, didn’t take my medication, drank too much and generally didn’t look after myself. I learnt the hard way that this was not a good idea as it made me really sick, but I just didn’t know how to deal with everything emotionally.

There absolutely is a stigma attached with a liver disease diagnosis and I was given judgemental stares when attending clinic when I was pregnant

The only downside to being diagnosed early on was that I was always the youngest person in the liver clinic which led to lots of stares and whispers and made me feel very self conscious. There absolutely is a stigma attached with a liver disease diagnosis. I heard a lot of “Oh, fond of a drink, are you?” or they jump to drug use whenever I mentioned to people that I had liver disease.  I was given even more judgemental stares when attending clinic when I was pregnant and my son was a newborn as I looked much younger in the face. Quite often people just assume if you have liver disease that it is your own fault. It can definitely make you feel ashamed of your diagnosis and can be very isolating. Liver disease can affect anyone and everyone and it is something I wish was highlighted more, especially in younger people, quite often when I was younger some of the doctors I saw didn’t know how to speak to me or give me the support I needed

I had a further hiccup when I was diagnosed with Primary Biliary Cirrhosis, also in 2012. However, my life changed for the better when I got pregnant, and through the care and support of my liver team at my local hospital, the liver team at King’s College and GP, I had a healthy pregnancy and had my son in April 2013. He gives me motivation even on my worst days to keep going and to be there for him.

Life carried on for a few years, quite a lot of the time one of my liver blood tests was abnormal, the one relating more to the Primary Biliary Cirrhosis but that was just normal for myself, my liver teams and my GP to not panic unless it was really abnormal!

But in 2017 the medication that had previously worked to control my immune system then started to cause my kidneys to shut down so I had to stop it, a biopsy sample showed I had cirrhosis of the liver from the damage done, my Primary Biliary Cirrhosis diagnosis was swapped to Primary Sclerosing Cholangitis and two additional diagnoses of ulcerative colitis and endometriosis were also added in 2017. I was also warned that due to the crossover of the liver diseases, how aggressive they are in me and the damage already done to my liver that I will probably need at least one transplant in my lifetime. Safe to say it was a rough year!

The Autoimmune Hepatitis literally vanished

Then in 2019 I had a minor miracle. I had a liver biopsy and the samples taken didn’t show any evidence of active auto immune hepatitis. It had literally vanished and both myself and my consultant were amazed. Given that at the time I was only on corticosteroids as my bloods had been stable(ish) for a while, it was something totally unexpected.

When the world shut-down due to Covid-19 in 2020 my body decided that it would be a fantastic time to reignite the auto immune hepatitis with a bang and a big flare. I know many people had issues accessing healthcare during this time but all my medical teams and GP surgery were fantastic and I felt safe and cared for even when I had to come into hospital for ultrasounds, fibro scans and another liver biopsy.

Based on this biopsy result showing that both the auto immune hepatitis and primary sclerosing cholangitis were both active again, one of the newer consultants on my hospital liver team decided to re-try a medication I’d had before but had issues with it causing blood pressure issues and migraines. This time it not only worked on my immune system, the fact that I am also on beta blockers for another auto immune condition in my thyroid means the side effects I’d had before weren’t present. At the start of January 2021 I had a full panel of liver blood tests that were within the normal range for the first time since 2015.

I am due another liver biopsy, which will be my eighth one, by the end of 2023 as it’s been decided that my blood tests don’t always reflect what is going on internally so it’s always better to get a sample. It’s a running joke that I am requesting a certificate and crown when I hit 10 biopsies, both for bravery.

Currently my bloods are still stable and I’m healthy-ish. I do have other auto immune and medical conditions that I have to deal with on a day-to-day basis, but my liver diseases are being well managed and are behaving themselves for now.

I will be forever grateful for the early diagnosis

I know that I’ve been through a lot since I was first diagnosed in 2009 but am very aware that without my GP at the time being so thorough and pushing for the liver team at my local hospital to see me, I could be in a very different position. I will forever be grateful to her for enabling me to be diagnosed early and also for all the care she gave me as a patient, especially in those early days when I was struggling emotionally and dealing with so many different medications and their side effects.

I am also very lucky that the consultant who first saw me and diagnosed me back in 2009 is still a major part of my liver care team at my local hospital. He and his colleagues have kept me as healthy as possible and have put up with a lot of late teenage/early 20s emotions from me!

Early diagnosis is definitely key and it’s something I do feel strongly about. Recognising symptoms early on is key and being persistent even when you get told “you can’t possibly have this, you’re too young”. Throughout my journey I have had so much support from not just my medical teams but also my family, friends (the other mums at my son’s school are so lovely) and especially my partner Lewis who is very good at telling me to rest even when I’m not very good at listening to him!

It’s been a long road so far, with further to go but without my GP making sure my diagnosis being caught early I may not have even made it this far.

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