Paulein Newton, 72, needed to scratch so much that her body was covered in weeping wounds
For three years, Paulein Newton put up with unbearable itching that made her life a ‘living hell’. Her need to scratch was so intense that she was unable to sleep and her body was covered in weeping wounds.
‘I was awake all the time, scratching,’ says Paulein, 72, from Epping, Essex who runs a craft business with her 65-year-old husband Robert. She was also chronically tired and lacking in energy. Yet the numerous doctors — including a private dermatologist — she saw during this time failed to find what was causing it.
All manner of diagnoses were considered, from scabies and allergies to lymph cancer. It was only in February this year that she finally got a diagnosis, with a simple NHS blood test. This proved that her itching was due to a vitamin deficiency, a lack of vitamin B12, a relatively common cause of itching, albeit one that some experts say isn’t always considered by doctors.
Within hours of her first B12 injection Paulein’s itch improved. While relieved she also felt angry that she’d had to put up with the problem for so long.
In fact the British Association of Dermatologists has recently drawn up new guidelines to prevent others whose lives are blighted by a chronic itch having to wait for a diagnosis as long as Paulein.
While we all have the occasional urge to itch, for one in six people pruritus, the medical term for itching, is a chronic problem lasting for more than six weeks. It can continue for months even years and can be very intense, says Dr Emma Wedgeworth, a consultant dermatologist and spokesperson for the British Skin Foundation.
Living with a chronic itch can be as bad as living with chronic pain, according to a study in the Archives of Dermatology in 2011.
‘It impacts sleep and quality of life,’ adds Dr Wedgeworth.
The itch sensation occurs along the same sensory nerves in the skin as pain, travelling to the spinal cord, explains Dr George Millington of the British Association of Dermatologists. There, the pain and itch pathways separate and travel to different parts of the brain where the sensation of itch is perceived.
After a simple NHS blood test she eventually realised that her unbearable need to itch was because of vitamin deficiency
‘The most common causes of a chronic itch are skin conditions such as eczema or urticaria [hives],’ he says.
Some people are more prone to chronic itching — for instance, it’s more common with age, as the skin becomes drier says Dr Millington.
The problem is that itching without a rash can be a result of many conditions, not just skin complaints, so GPs are often not sure at first what the cause might be.
One of the more common non-skin related causes of itching is iron deficiency anaemia, says Dr Wedgeworth.
Why this form of anaemia should cause itching is unclear, but when people with anaemia itch it can cause redness and bumps that look like rashes, which confuses the diagnosis. Blood tests can confirm iron-deficiency anaemia and it can be treated with iron pills.
Paulein’s itch was due to a different form of anaemia, pernicious anaemia, which led to her B12 deficiency and the itching. Most common in the over 60s, pernicious anaemia is an autoimmune condition caused by antibodies destroying a protein needed for the absorption of vitamin B12.
This can give rise to itching because B12 is needed to form the fatty sheaths that cover nerves. If these don’t form correctly it can affect the way nerve impulses are transmitted and this can lead to the sensation of itch, says Dr Moez Dungarwalla a consultant haematologist at Milton Keynes University Hospital. Confusingly for doctors, patients with pernicious anaemia are prone to the skin condition psoriasis, which can also cause itching, he says.
An underactive thyroid gland can cause an itch too says Dr Wedgeworth as the condition leads to dry skin. As can liver problems, because they lead to a build-up of bile under the skin. When kidneys fail, a build-up of wastes in the blood can sometimes cause itching.
‘Rarely it may also be a sign of certain types of cancer such as lymphoma (cancer of the lymph system),’ says Dr Wedgeworth. This can cause a rash and itching as the cancer encourages the production of chemicals called cytokines which irritate the nerves in the skin.
When Paulein’s itch began in 2015, it started on her back and forearms and spread to her trunk. The itching became so bad that she couldn’t sleep at night and she went to the doctor who told her she had scabies, a contagious skin disease caused by an infestation of the ‘itch mite’ sarcoptes scabiei.
It’s directly transferred from skin to skin and a relentless unbearable itch is the main symptom as the mites burrow under the skin and lay eggs. As well as itching it can cause a rash.
Her doctor sent her to the pharmacy for cream. This made no difference and four days later she went back to the GP. This time she was told she had an allergy and was given antihistamines.
‘But again, they didn’t work,’ Paulein recalls. ‘I was in agony with indescribable itching. I couldn’t sleep, I couldn’t think. I used to belong to groups and loved painting cat portraits and playing the piano. I could do none of this any more because of the itching and inability to sleep. I was slumped on the sofa all day.’ Three weeks later, during another consultation with her GP this time by telephone, he suggested she see a private dermatologist — who just looked at Paulein’s skin and told her she probably had lymphoma.
‘I was absolutely stunned,’ Paulein says. ‘I was so upset that I actually fell silent and wasn’t able to communicate. No other tests had been run and yet she was giving me this diagnosis of a type of cancer. I was devastated.’
Several doctors and all manner of diagnoses were considered, from scabies and allergies to lymph cancer
She was referred for a CT scan and blood tests. It was not lymphoma. These private tests and scans cost Paulein £1,200.
‘I was relieved, of course, not to have cancer,’ she says. ‘But I was also angry. I’d gone private but still no one had an answer. By now the itching was so bad I wasn’t sleeping at all.’
She had no choice but to put up with her symptoms, trying to manage with E45 cream.
Then this February, three years after her symptoms began, she went to her GP surgery for a routine blood pressure check-up. She saw a different doctor and mentioned her itching.
‘The doctor said: “Let’s run a blood test.” I felt so disillusioned with the medical profession that I remember thinking there was no point after 23 previous blood tests coming back negative. But I went anyway,’ says Paulein.
When she went back for her results, the doctor finally had a diagnosis: pernicious anaemia.
‘After three years of hell and so many invasive tests and misdiagnoses, at last I had an answer.’
The condition is the most common cause of vitamin B12 deficiency. Other causes include diet — vegans and vegetarians can sometimes become deficient as they do not eat foods such as meat, eggs, milk, and cheese which are rich in B12 — parasitic infections, and drugs such as metformin used for diabetes. It is also more common in elderly patients.
Other symptoms include tingling, itching, tongue soreness, fatigue and general weakness, low mood, jaundice and brittle nails.
The new British Association of Dermatologists guidelines say that all patients with chronic pruritus should have a full blood test to check things such as their iron and B12 levels.
‘We are becoming more aware that chronic itching is a problem, which is why we produced the guidelines,’ says Dr Nick Levell, president of the British Association of Dermatologists. ‘It has highlighted how many unanswered questions there are about the causes of itching, and the shortage of treatments available.’
Three days after her blood test result Paulein had her first vitamin B12 injection.
‘Within hours of getting home I felt less fatigued and was able to get off the sofa,’ she says.
‘But most of all, I was itching a lot less. It was still itchy, but more bearable. It was an incredible transformation.’
Paulein needs a vitamin B12 injection every month initially, though she may need more frequent doses.
‘I hope telling my experience will help others who might be in a similar situation with similar symptoms to ensure they push for a diagnosis.’
Lunch cruncher: How to make your calories go further
Just two small Scotch eggs add up to more than 500 calories, which aren’t calories well spent when you consider you could have scrambled eggs on toast, yoghurt, fruit and popcorn instead.
The second lunch is also healthier — it has around a third less cholesterol-raising saturated fat (6.4g versus 9.8g) and is lower in blood pressure-raising salt (1.5g versus 1.8g). You’ll also get one of your five-a-day from the second lunch and nearly a half of your daily fibre.