Doctors said my
0871 988 8300 Thousands of women in the UK face years of waiting before GPs recognise the signs of this life-threatening condition, writes PAT HAGAN
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AS A BUSY college lecturer and mother of two Mhari Brotherston was used to feeling tired at the end of the day. But alarm bells rang when she began to feel so relentlessly exhausted that she was asleep in bed by 7pm most nights.
Also constantly nauseous, she lost weight without even trying, shrinking from 8st 8lb to just 6st – tiny for her 5ft 6in frame.
“The symptoms came on quite slowly and initially I thought it was down to juggling my full-time job and caring for young children. They were six and nine at the time,” says Mhari.
“But after a few months I was really worried and wondered if I might have cancer.”
She went back and forth to GPs who ran tests but could find nothing wrong.
“They thought it might be the menopause approaching or a thyroid issue,” says Mhari, 45, who is married to Neill, 52, a car salesman and lives with her children Dylan, 15, and Naimh, 12, in East Lothian.
In 2010 a year after her symptoms began she suffered a burst appendix. Doctors concluded this had been the source of her ill health.
But Mhari got no better. “I couldn’t do things with the kids as I was so tired I would go to bed straight after tea,” she says.
“I also had incredibly itchy skin from time to time. It felt as if insects were crawling underneath it. But I presumed I just had sensitive skin.”
Still doctors could shed no light on her symptoms. A blood test showed she had slightly unusual liver function but as that can occur for a variety of reasons, even a minor infection, it was dismissed as nothing to worry about.
“I got to the point where I was thinking, ‘Is this all in my head?’, says Mhari. It was not until 2012, three years after she first became unwell, that she discovered it most certainly was not psychosomatic.
Mhari suddenly collapsed and, after a referral to a liver specialist who performed a blood test she had not had before, discovered she had a liver disease called primary biliary cholangitis (PBC).
Although few people have heard of it the UK has some of the highest rates of this disease in the world.
Its exact cause is unknown but the theory is it is triggered by the body’s own immune system attacking the bile ducts that carry bile (which the liver uses to digest fats) out of the liver and into the intestines.
As the ducts get damaged the bile cannot drain away from the liver, eventually causing scarring, or cirrhosis.
About 20,000 people in the UK have PBC and 90 per cent of these are women.
Typical symptoms include fatigue, nausea and itchy skin.
“It is mostly diagnosed among 40 to 60 year olds and in the early stages lethargy is the most common symptom so it often