Illnesses that can take up to 30 YEARS before they’re diagnosed

WHEN you’re ill, all you want is to feel better — but that often depends on getting a diagnosis. And with serious diseases, how quickly you get it can make all the difference.

Last month, NHS England announced a £15 million plan to speed up the diagnosis time for cancer.

The time it takes to spot any illness — not just cancer — can be affected by myriad issues, explains Emma Greenwood, head of policy at Cancer Research UK. ‘People need to be aware of symptoms, but also must act when they notice them,’ she says.

Even when you go to a GP, they only have a ten-minute appointment in which to distinguish a minor ailment from something more serious — and they may be assessing conditions they’ve rarely seen. For instance, most GPs only see seven or eight new cases of cancer a year.

Here, we look at the surprising length of time it can take to get a diagnosis for a range of conditions after a first visit to the doctor.

HEPATITIS 20 TO 30 YEARS

MISDIAGNOSED AS: Fatigue. SYMPTOMS: Chronic tiredness, joint pain, brain fog. In the later stages, skin becomes yellow, with itching, abdominal pain and nausea.

The hepatitis C virus is passed on via infected blood — for example, from blood transfusions given before 1991 (before screening of blood began) or from dirty needles or medical equipment. The virus uses liver cells to replicate, but in the early stages, the liver can repair the damage.

‘However, each repair will lead to scarring that ultimately stops the liver functioning. This is cirrhosis,’ says Dr Stephen Ryder, a consultant liver specialist at the Queen’s Medical Centre, Nottingham.

Only one in three infected people has early symptoms. ‘ It is reasonably common to have been infected for 30 years without knowing it,’ says Dr Ryder.

Untreated it can reduce life expectancy by ten years. ‘ There will be people who had a blood transfusion in the Eighties who have no idea they have hep C.’

COULD I HAVE IT? ‘If you believe you’re in a high-risk group and don’t feel right, you should have a blood test,’ says Dr Ryder.

‘At risk groups include people who have had medical treatment abroad, and not just in at risk countries such as Egypt and Pakistan — even Spain had an increased risk until recently.’

COELIAC DISEASE 13 YEARS

MISDIAGNOSED AS: Heavy periods causing anaemia, IBS, poor diet.

SYMPTOMS: Anaemia, recurrent mouth ulcers, fatigue, stomach pain, diarrhoea, weight loss.

Coeliac disease is relatively common — the NHS estimates it affects one in every 100 people — yet it can take an average of 13 years to diagnose.

It is an immune reaction to gluten, the protein in wheat, barley, rye and oats, causing inflammation and damage to the intestine.

This can hamper the absorption of nutrients and untreated it can lead to anaemia or weakened bones (from lack of iron or calcium).

‘There is a generation of family doctors who think if someone has coeliac disease they will have gut symptoms — but the most common symptom is anaemia,’ says Sarah Sleet, CEO of Coeliac UK.

COULD I HAVE IT? A blood test can detect antibodies to gluten.

OSTEOPOROSIS 10 TO 20 YEARS

MISDIAGNOSED AS: Osteomalacia — weakening of bones due to vitamin D deficiency.

SYMPTOMS: Bone fractures from very minor injuries. Bone is constantly being broken down and replaced. With osteoporosis, old bone is lost at a faster rate than it is replaced, leading to weak bones that may fracture with minimal force.

‘The problem is that often the first symptom is a fracture,’ says Dr Stephen Gallacher, an osteoporosis specialist at Queen Elizabeth University Hospital in Glasgow.

‘ When someone — especially those with a risk factor, such as post- menopausal women or someone who has taken steroids long-term — has a fracture, they should have their bones scanned to check for osteoporosis, but too often this doesn’t happen.

‘Around one in five women have experienced at least three fractures before osteoporosis is raised.’

Preventing a fracture matters — hip fractures are linked to a raised risk of dying within three years.

COULD I HAVE IT? If you have a fracture following minimal impact, ask for a bone density scan.

ENDOMETRIOSIS 71/2 YEARS

MISDIAGNOSED AS: Problem periods in young women; IBS in older women.

SYMPTOMS: Painful periods, bowel and bladder disturbance usually during periods, pain during sex, infertility.

This painful condition is caused when tissue that grows in the womb, and is shed each month, is found elsewhere in the body, such as around the bowel. This causes pain in cycles with your period.

The delay in diagnosis may be partly due to many doctors’ reluctance to over-treat what might be simple period pains, says Ertan Saridogan, a consultant gynaecologist at University College London Hospital.

‘The gold standard for diagnosis is a laparoscopy (looking inside the abdomen with a camera under anaesthetic) — and you don’t want to do that unless you are sure you need to.’

But there’s also ‘a lack of awareness among women and health professionals’, he says.

COULD I HAVE IT? If your symptoms tie in with your period and are making everyday life difficult, seek medical advice.

HYPOTHYROIDISM 5 YEARS

MISDIAGNOSED AS: Depression, hormonal problems such as those relating to menopause.

SYMPTOMS: Weight gain, depression, sluggishness, muscle and joint pain, sensitivity to the cold, dry skin and hair, ‘mental fog’.

Hypothyroidism is when the thyroid gland doesn’t produce enough of the thyroid hormone needed for all kinds of bodily processes including metabolism.

‘The problem is that 25 per cent of the population feel tired and depressed, yet that’s not because they have a problem with their thyroid,’ says Colin Dayan, a professor of diabetes and metabolism at Cardiff University.

Hypothyroidism can occur, for example, as a result of the immune system attacking the thyroid gland, a lack of iodine or thyroid cancer.

A survey by Thyroid UK of almost 5,000 patients with hypothyroidism found that 46 per cent were initially misdiagnosed with another condition.

While 46 per cent were correctly diagnosed within a year, for over a fifth it took five years or longer.

COULD I HAVE IT? If the symptoms above describe you, ask for a blood test to check levels of the thyroid hormone.

DEMENTIA 41/2 YEARS

MISDIAGNOSED AS: Depression, stress, relationship issues.

SYMPTOMS: Changes in concentration and memory, difficulty doing everyday tasks, changes in personality that worsen progressively.

Those under 65 who develop dementia often don’t get diagnosed for almost five years on average, says Hilda Hayo, CEO of Dementia UK and a dementia nurse.

‘Young people tend to develop dementia that affects the front area of the brain. Rather than causing memory problems, this can cause behavioural changes,’ says Ms Hayo.

Even older people who develop typical early dementia symptoms such as short- term memory problems wait two-and-a-half years for a diagnosis on average.

COULD I HAVE IT? If you’re worried about symptoms, see your GP. TYPE 2 DIABETES 21/2 YEARS MISDIAGNOSED AS: Type 1 diabetes.

WHAT TO WATCH FOR: Excess thirst, tiredness, going to the loo more often than normal.

The good news is the time taken to diagnose type 2 has dropped as we are testing people’s blood sugar more, says Naveed Sattar, professor of metabolic medicine at the University of Glasgow.

But some patients face a delay and by the time they are diagnosed, half will already have a complication, according to the charity Diabetes UK. A 2006 study found that delaying a diagnosis by three years increased the risk of a stroke by 22 per cent.

The delay may be because type 2 is diagnosed when someone has a fasting blood sugar of seven or more — but more recognisable symptoms, such as urinating excessively or thirst do not occur until the blood sugar reaches 12-15, says Professor Sattar.

COULD I HAVE IT? Be aware of any early symptoms, especially if you are in an at-risk group — over 40, overweight, with a large waist and of South Asian ethnicity — and ask for a blood test.