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Tom’s story

Tom’s story

Whenever you suspect you have any type of illness it’s always a daunting time. Like most young men in their early twenties, I like a drink. I definitely drink more than the recommended weekly limit. I go out most weekends and enjoy myself. Being so young, I never think about the consequences of the things I do. I’ve never thought I had a drinking problem at all.

When I first started feeling like I didn’t have much energy, I just put it down to normal things. Working too much, staying up late too often, going out and getting drunk when I had the next day off and spending that day doing nothing but moping around.

I Googled my symptoms after a few weeks and I read all sorts of generic things. Things you couldn’t really check with yourself unless you could do your own blood test and analyse the samples. When I read about checking my skin and eyes for jaundice, that’s what I could do. And when I realised that the whites of my eyes were slightly yellow, I Googled further. I was horrified by what I was reading. It basically said, on most of the publications I read, that this was a sign of liver damage, liver failure or other horrendous illnesses. I think this was on a Thursday or a Friday, when I booked in to see my GP I think I had to wait around 5 days to see her. But when you read and convince yourself that you have a liver condition, it’s all you think about. I had my cousin’s wedding on the Saturday and I chose not to drink as I thought my liver was failing and any more drinks would see me off. It didn’t go unnoticed by my family or friends as I was always the first one to stand up and go to the bar. I would’ve happily started drinking at breakfast at a family wedding.

The whole weekend I felt terrible, it was on my mind about what could be wrong with me. When I eventually saw my GP a few days later, I knew that I’d have to wait further. She checked my eyes and agreed that there was a level of jaundice. She was so calm and relaxed it both reassured and irritated me. How could she be so relaxed when my liver was failing? Was it a good sign or bad sign? She checked my medical records and found a liver function test I’d had years before when I was hospitalised with appendicitis. I didn’t understand the acronyms or the words, but I understand that a big, bold red mark wasn’t good. It was next to something called bilirubin. I’d never heard of it before. It’s then she mentioned a condition called Gilbert’s Syndrome, where the liver produces too much bilirubin and in excess is the reason people get jaundice. She went on to tell me that the body producing excess amounts of bilirubin could be Gilbert’s Syndrome, but she wanted an up to date liver function test and full blood count.

I went up to the local hospital to have my blood taken for tests, half-reassured, half-worrying. I went home and researched Gilbert’s Syndrome, it didn’t sound bad at all – but I still didn’t know if that’s what I had. I went back in to see my doctor about a week later and she said that my liver results had come back and everything was normal apart from my bilirubin levels again. She said this had come down since my previous readings which she said was a sign that it was Gilbert’s. I was told that during times of illness or stress, the levels of bilirubin can raise and it’s during those periods that people with GS may suffer from bouts of jaundice.

This was all about 4 years ago now. I’m pretty much symptom-free. I do get periods of tiredness which last a few days and I find it takes me longer to shift a cold or a period of ill-health faster than I would like, but apart from that I feel absolutely fine. Every now and again I’ll pull my eyelid down and see the slight yellowing of my eyes and not panic. I know that living with GS is something that I’ll have to get used to for the rest of my life. Only in the last few weeks have I noticed some symptoms which have arisen and that’s itchy skin. I went to see the doctor who performed another LFT and the bilirubin is still raised, but the rest of the liver is fine. In fact my bilirubin levels have gone down since the initial test. I even had an LFT whilst in hospital in November due to a horrendous migraine attack which left me feeling numb down one side. Strangely enough my bilirubin levels were perfectly normal and within range!

You may feel tired. You may feel itchy. It may take you longer to get over a minor illness, but apart from that my Gilbert’s Syndrome hasn’t had any detrimental effect on my life. I’m writing this story in the hope that someone who has recently discovered yellow eyeballs or yellow skin or has had a high reading of bilirubin that it’s not doom and gloom and your liver just has a benign, hereditary condition which most of the time people don’t even realise they have.


PS – I still love a good beer and enjoy an active social life!

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