For nearly two decades Aimee Wellington battled almost continuous exhaustion and often felt generally unwell and dizzy around her period \u2013 but doctors continually assured her there was nothing wrong.<\/p>\n
\u2018I was told it was probably hormones or that I was borderline anaemic,\u2019 says Aimee, 34, a marketing officer from Port Talbot, South Wales.<\/p>\n
\u2018But I always felt exhausted and run down when others didn\u2019t, which made it so difficult to find the energy to go out with friends, meaning I missed dinners and nights out.\u2019<\/p>\n
She would also regularly experience brain fog and found her stomach would become so bloated that, for a week or more, she looked eight months pregnant.<\/p>\n
Her doctor ran blood tests for vitamin deficiencies and gut conditions, such as coeliac disease, which might explain her symptoms \u2013 but they all came back clear.<\/p>\n
\u2018I\u2019d cope at a low level, then the symptoms would build again, so I\u2019d go back to the GP, only to be told nothing was wrong,\u2019 says Aimee.<\/p>\n
Three years ago, after spending \u2018weeks in bed with what felt like constant flu symptoms\u2019, Aimee returned to her GP.<\/p>\n
‘He suggested I was an emotional young woman and that it was all in my head,\u2019 she recalls.\u00a0\u2018I went home and cried. I genuinely questioned myself, asking \u201cWhat if he was right?\u201d.\u2019<\/p>\n
Aimee decided to switch GPs and finally the truth was revealed \u2013 she had Gilbert\u2019s syndrome, a little known yet surprisingly common liver condition that affects around 5 per cent of the population. It’s caused by a mutation in the UGT1A1 gene which interferes with how the body processes bilirubin \u2013 a yellow byproduct generated by the breakdown of old red blood cells.<\/p>\n
![\"Aimee](\"https:\/\/i.dailymail.co.uk\/1s\/2026\/04\/13\/11\/107854215-15728405-image-m-2_1776077193772.jpg\")
<\/div>\n<\/p><\/div>\nAimee Wellington battled almost continuous exhaustion and often felt generally unwell and dizzy around her period \u2013 but doctors continually assured her there was nothing wrong<\/p>\n<\/div>\n
\u2018This gene helps your liver make an enzyme that processes bilirubin,\u2019 says Dr Nadir Abbas, a consultant gastroenterologist and liver specialist with the House of Health private healthcare group in Birmingham. \u2018In people with Gilbert\u2019s, the enzyme doesn\u2019t work as efficiently so bilirubin can build up in the blood,\u2019 he says.<\/p>\n
Symptoms include jaundice (a yellowing of the skin and eyes), but this is usually mild and temporary. Gilbert\u2019s can also make those affected more sensitive to alcohol, because their reduced ability to process bilirubin puts extra strain on the liver and alcohol then adds to the burden. For some, it can also cause worse hangovers, says Dr Abbas.<\/p>\n
\u2018Many people with Gilbert\u2019s report feeling foggy-headed or generally unwell during flare-ups, too,\u2019 he adds. \u2018We don\u2019t fully understand why this happens, but unprocessed bilirubin can cross into the brain, and some research suggests that may help explain the sluggish thinking and low energy people experience during episodes.\u2019<\/p>\n
Many also develop bloating, says Dr Abbas, \u2018because the bilirubin can reach the large intestine and upset the balance of gut bacteria\u2019.<\/p>\n
Symptoms come and go but may \u2018get worse when you\u2019re ill, haven\u2019t eaten much, are stressed or after a heavy night of drinking\u2019, explains Dr Abbas. \u2018That\u2019s because during illness, or when you\u2019re not eating enough, your body breaks down more red blood cells.\u2019 <\/p>\n
Symptoms increase as bilirubin levels peak, and ease again once the liver catches up with breaking the byproduct down.\u00a0In women, flare-ups can especially occur around their period.<\/p>\n
The fact that symptoms come and go mean people with Gilbert\u2019s are often dismissed by doctors, says Dr Abbas.<\/p>\n
\u2018Gilbert\u2019s syndrome affects men and women equally \u2013 but women are misdiagnosed more often because their symptoms are dismissed as \u201chormonal\u201d,\u2019 he adds.<\/p>\n
\u2018Fatigue, nausea and generally feeling awful around your period can easily be written off as PMS or anxiety. I\u2019ve seen countless women who have been told it\u2019s all in their head. Often by the time they discover they have Gilbert\u2019s syndrome, their symptoms are frequent, intense and disruptive enough to have a real impact on their daily lives.\u2019<\/p>\n
The condition can be diagnosed with a blood test to identify high bilirubin levels.<\/p>\n
\u2018But if blood tests are done when someone with Gilbert\u2019s is not having a flare-up, bilirubin levels may appear normal,\u2019 says Dr Abbas.<\/p>\n
However, even during an episode, \u2018bilirubin is not always raised to significant levels for clinicians to be concerned. It also depends on the clinicians’ understanding and knowledge around the condition\u2019.<\/p>\n
While there is no damage done to the liver, Dr Abbas emphasises that Gilbert\u2019s symptoms can \u2018have a real impact on daily life\u2019.<\/p>\n
At the other extreme, around 30 per cent of people with Gilbert\u2019s are unaware they have the condition as their symptoms are so subtle they don\u2019t notice them.<\/p>\n
In most cases, symptomless or otherwise Gilbert\u2019s syndrome is often diagnosed by accident after a routine blood test for another reason.<\/p>\n
Dr Abbas says awareness of the condition needs to improve. \u2018If someone has isolated raised bilirubin with otherwise normal liver tests, clinicians should think of Gilbert\u2019s,\u2019 he says. \u2018If you don\u2019t look for it, you won\u2019t find it.\u2019<\/p>\n
Following her diagnosis in 2023, Aimee says: \u2018The more I looked into the condition, the more everything fell into place\u2019.<\/p>\n
It brought decades of uncertainty to an end. Aimee had been 12 when she first developed the overwhelming fatigue, nausea, brain fog and episodes of dizziness that would continue to dog her in cycles for nearly 20 years.<\/p>\n
\u2018I would feel a bit better for a while, and then everything would start again\u2019, says Aimee.<\/p>\n
Her symptoms \u2018interfered with [her] schooling and social life \u2013 simply by making things harder than they needed to be\u2019.<\/p>\n
![\"Three](\"https:\/\/i.dailymail.co.uk\/1s\/2026\/04\/13\/11\/107854253-15728405-image-m-4_1776077220529.jpg\")
<\/div>\n<\/p><\/div>\nThree years ago, Aimee’s symptoms started worsening.\u00a0Her vision would blur and she would often feel as though she was about to faint. She thinks this was due to stress<\/p>\n<\/div>\n
Things came to a head three years ago, when her symptoms started worsening. Her vision would blur and she would often feel as though she was about to faint. She thinks this was due to stress.<\/p>\n
\u2018Right before my diagnosis, people kept asking if I\u2019d been on holiday because I looked so tanned,\u2019 she says. \u2018I didn\u2019t realise I was actually jaundiced due to bilirubin build-up. My eyes were yellow, too.<\/p>\n
\u2018I was going to the doctors every few months. I\u2019d have a set of tests, those would come back clear, and then I\u2019d be sent for another set. I even paid to see a private GP at one point.\u2019<\/p>\n
Doctors told her that her vitamin D was low and she was prescribed a supplement \u2013 but it was during a phone appointment with her GP to request a repeat prescription that he suggested the symptoms were all in Aimee\u2019s head.<\/p>\n
\u2018I switched GP surgeries after that,\u2019 she says.<\/p>\n
Towards the end of 2023, the new GP reviewed her previous blood tests and spotted that she had consistently raised bilirubin levels.<\/p>\n
She was referred for detailed blood tests and liver function tests. In October 2023, Aimee was told her symptoms were caused by Gilbert\u2019s syndrome. \u2018For the first time in my life, I felt validated\u2019, she says. \u2018I wasn\u2019t imagining things, I wasn\u2019t weak \u2013 and I definitely wasn\u2019t emotional.\u2019<\/p>\n
There is no treatment for Gilbert\u2019s but managing \u2018lifestyle is key\u2019, says Dr Abbas.<\/p>\n
\u2018The best way to prevent visible jaundice is to avoid the things that trigger it,\u2019 he says.<\/p>\n
\u2018Eating regularly is important, as skipping meals can slow the liver\u2019s ability to process bilirubin. Staying hydrated matters, too \u2013 as dehydration makes bilirubin levels rise, while drinking enough fluids helps your body clear it more efficiently.\u2019<\/p>\n
He says prioritising sleep and keeping alcohol intake within healthy limits are also important.<\/p>\n
The main triggers for Aimee are lack of sleep, dehydration, skipping meals and alcohol \u2013 but living with the condition can be unpredictable.<\/p>\n
\u2018I can go from being extremely active to barely able to get off the sofa for days at a time,\u2019 she says.<\/p>\n
![\"The](\"https:\/\/i.dailymail.co.uk\/1s\/2026\/04\/13\/13\/107854223-15728405-The_main_triggers_for_Aimee_s_Gilbert_s_symptoms_are_lack_of_sle-m-38_1776084667420.jpg\")
<\/div>\n<\/p><\/div>\nThe main triggers for Aimee’s Gilbert’s symptoms are lack of sleep, dehydration, skipping meals and alcohol \u2013 but living with the condition can be unpredictable<\/p>\n<\/div>\n
\u2018I go to the gym six days a week and I love running \u2013 but during a flare-up, all of that goes out the window.\u2019<\/p>\n
Aimee also suffers with bloating, which is \u2018so painful and uncomfortable\u2019, she says. \u2018I look eight months pregnant. As well as this, my lips often crack and bleed and I feel achy like I have flu.\u2019<\/p>\n
But she can now recognise when she\u2019s going to feel worse.<\/p>\n
If her eyes start to yellow, she knows she’s ‘pushed [herself] too far’, she says.<\/p>\n
\u2018When I feel my symptoms creeping in, I sometimes book time off work to accommodate how well I know I\u2019m going to feel after a stressful or high-energy event,\u2019 she says.<\/p>\n
Aimee swears by routine. \u2018I start winding down at 7pm and aim to be in bed by 10pm, even at weekends. It sounds boring, but if I don\u2019t follow my routine, I know about it the next day.\u2019<\/p>\n
Alcohol is now a very rare treat, and Aimee focuses on eating well and takes vitamin D and probiotics after hearing about their benefits on a health podcast.<\/p>\n
\u2018What I find most frustrating is that there is no cure or quick fix. All I can do is rest and wait for it to pass.\u2019<\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"
For nearly two decades Aimee Wellington battled almost continuous exhaustion and often felt generally unwell and dizzy around her period \u2013 but doctors continually assured her there was nothing wrong. \u2018I was told it was probably hormones or that I was borderline anaemic,\u2019 says Aimee, 34, a marketing officer from Port Talbot, South Wales. \u2018But<\/p>\n","protected":false},"author":1,"featured_media":7833,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[520],"tags":[],"class_list":{"0":"post-7832","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-hot"},"_links":{"self":[{"href":"https:\/\/www.healthoptibody.com\/index.php?rest_route=\/wp\/v2\/posts\/7832","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.healthoptibody.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.healthoptibody.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.healthoptibody.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.healthoptibody.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=7832"}],"version-history":[{"count":0,"href":"https:\/\/www.healthoptibody.com\/index.php?rest_route=\/wp\/v2\/posts\/7832\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.healthoptibody.com\/index.php?rest_route=\/wp\/v2\/media\/7833"}],"wp:attachment":[{"href":"https:\/\/www.healthoptibody.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=7832"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.healthoptibody.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=7832"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.healthoptibody.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=7832"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}