I was so itchy at night it felt like something was in my veins and I scratched until I bled: Terrifying signs that ‘crawling’ sensation is actually first stage of ORGAN failure

The sudden need to itch her palms and soles of her feet that hit Jayne Pilkington one night was so maddening she scratched them until they bled.
‘It felt like something was crawling deep in my veins beneath my skin,’ recalls Jayne, 46.
It became an awful nightly pattern.
‘Weirdly, it started like clockwork every night at 8pm and didn’t stop until 4 or 5am, keeping me awake all night and leaving me exhausted the next day,’ says Jayne, who runs a painting and decorating firm with partner Mark, 53, and lives near Penrith, Cumbria.
‘At one point I got so desperate for relief I’d stand on the concrete driveway outside in the middle of the night just to cool my feet down,’ she says. In the absence of an obvious cause, Jayne says she even checked the carpets at work for fleas in case there was an infestation.
After two months, she went to see her GP, who ran blood tests for iron deficiency (this can cause itching) and thyroid function (because of her fatigue).
Jayne Pilkington, from Penrith in Cumbria, developed intensely itchy skin and it took more than a year and five GP appointments to find out why
‘When the tests were negative, he said it was just itchy skin and probably all in my head,’ recalls Jayne.
But over the next three months the itching occurred during the day, too, and spread around her body – making everyday life problematic.
‘I’d be shattered every morning from itching all night and really struggled to keep going all day at work,’ she says.
‘Also, the soles of my feet were so badly damaged by scratching that I found it difficult to walk.’
She went back and forth to her GP four more times over nine months but was dismissed each time. It wasn’t until Jayne began her own investigations that the true cause was uncovered.
Jayne has a form of liver disease called primary biliary cholangitis (PBC), an autoimmune condition where the small bile ducts within liver tissue are attacked by the immune system and become inflamed and scarred. As a result, bile – the fluid produced by the liver that helps digest fats and carry waste out of the body – builds up and leaks into in the bloodstream and skin, irritating nerve endings.
The itching typically affects the hands and feet, why is unclear, and ‘is often more noticeable at night when trying to get to sleep, probably as there are fewer things to take your mind off it’, explains says Professor Douglas Thorburn, a consultant hepatologist at Royal Free London NHS Foundation Trust.
Other symptoms, such as fatigue and sleeping more, occur because toxins not excreted as usual in bile may affect the brain.
Professor Douglas Thorburn, a consultant hepatologist at Royal Free London NHS Foundation Trust
Yellow cholesterol deposits may also form around the eyes and on the backs of the hands as excess cholesterol is not excreted in bile as normal.
An estimated 25,000 people in the UK have PBC (90 per cent of them women).
It’s an autoimmune condition, and possibly those ‘who are genetically predisposed may be triggered by something in the environment’, says Professor Thorburn, who is also medical adviser to the British Liver Trust.
(Some studies have found that women with PBC reported using hair dyes and nail varnish slightly more often than women who did not.)
Symptoms typically begin around the age of 60, but experts believe half remain undiagnosed. This is a concern as if PBC is detected early enough drugs can be used to slow down progression of the disease.
However, if left untreated, the build-up of bile can lead to inflammation and scarring in the liver, which may eventually lead to the need for a transplant – one in ten liver transplants are due to PBC.
Professor Thorburn calls PBC ‘an iceberg phenomenon’, as ‘there are probably just as many people living with it undiagnosed as those diagnosed’.
Delays in diagnosis occur, he says, because often even doctors don’t consider a liver complaint as a cause of the tell-tale itching – or take it seriously enough – and so people aren’t given the blood test that can detect the anti-mitochondrial antibodies, a sign of PBC.
Desperate for an answer, Jayne searched online and found that itching can be caused by liver disease. She asked her GP for a liver function test and was told she could have one ‘if it would “shut me up”,’ she recalls.
A week later the test results showed Jayne’s liver readings were abnormal, and she was given the antibody test which led to her diagnosis.
‘I felt really angry that something major had been missed and I’d been dismissed,’ she says.
Jane endured the itching for nine years until she underwent a successful liver transplant in December 2023
Pamela Healy, chief executive of the British Liver Trust, says PBC is too often missed because it can begin with something as ‘simple’ as itchy skin, although she adds: ‘For many people, this itching is debilitating and life altering.’
Failure to take itching seriously is part of a bigger problem in which skin symptoms generally are often dismissed, suggests Dr Jonathan Kentley a consultant dermatologist at Chelsea and Westminster Hospital in London.
‘People don’t necessarily think of skin conditions as life-threatening, although they can be in many ways as there are a number of serious underlying conditions which can present with skin symptoms,’ explains Dr Kentley, a spokesperson for the British Skin Foundation.
‘Liver and kidney conditions can present with itching, as well as thyroid and other autoimmune problems and sometimes blood cancers such as lymphoma.
‘There is also the huge psychological impact of skin diseases such as acne, eczema and psoriasis. Many studies have shown they can lead to anxiety and depression, relationship and sexual problems and time off work.
‘These skin complaints might not be life-threatening, but they can be life-ruining,’ he says.
Up to 60 per cent of referrals to NHS dermatology are now for suspected skin cancer cases, which means people with other serious skin conditions can face long waits of up to a year to be seen, warns Dr Justine Hextall, a consultant dermatologist at Tarrant Street Clinic in Arundel, Sussex.
‘My concern is that we are not recognising the importance and seriousness of skin diseases.
‘We need more dermatologists and more education and training for GPs in dermatology.’
Jayne joined the NHS liver transplant list in January 2022, and a match was found in December 2023
Professor Thorburn says a liver function blood test should always be done for patients when itchy skin persists for more than two weeks, if there’s no obvious cause and the if patient isn’t improving.
After Jayne’s PBC diagnosis, she was referred for specialist treatment at the Freeman Hospital in Newcastle.
She was started on ursodeoxycholic acid, which promotes bile flow and reduces liver inflammation – but as is the case with 40 per cent of PBC patients, she didn’t respond to it.
She was then given obeticholic acid, which improves bile flow and reduces inflammation, but it did nothing for her severe itching.
‘The itching had a big impact on my life. I had to give up my job [as an account director] in publishing – a career I absolutely loved,’ says Jayne. ‘I felt like it was the end of the world.’
Jayne joined a trial of phototherapy, a UV light treatment which is thought to reduce the concentration of bile acids in the skin, but this had limited effect.
In 2024 the National Institute of Health and Care Excellence (NICE) approved the use of newer drugs for patients who don’t respond to ursodeoxycholic acid.
Among these drugs are elafibranor, which reduces bile acid production and inflammation and scarring in the liver as well as reducing itching. Seladelpar, a drug which works in a similar way, is currently under review by NICE.
But these weren’t available when, in 2021, Jayne was given the devastating news that due to the extensive scarring to her liver, a liver transplant was her only option. By now, the itching was so bad it was making Jayne’s life a misery and she felt a transplant ‘was a risk worth taking’.
‘That’s how desperate I was,’ she says.
Jayne joined the NHS liver transplant list in January 2022, and a match was found in December 2023.
‘The minute I woke up from the transplant on that Christmas Eve, the itching had stopped for the first time in nine years. It was incredible,’ says Jayne.
‘It’s been more than two years now and I haven’t itched once, the transplant has given me back my life again.’
Jayne says she doesn’t think people realise that itchy skin can sometimes be a sign of serious underlying health problems.
‘I only got diagnosed because I pushed for a test,’ she says.
‘Skin problems are too often dismissed as trivial – liver function blood tests should be done as standard for persistent itching.’



