Thousands with type 1 diabetes can ditch insulin as they're not type 1

Thousands with type 1 diabetes can ditch insulin injections… because they’re not type 1 after all – and their hidden form of the condition is much easier to treat

• Some type 1 diabetics have implants to deliver constant ‘top-up’ of insulin medication when needed
• Majority face laborious routine of checking their blood sugar levels after eating and then self-injecting
• But about 8,000 Britons with type 1 diabetes may actually have another form of the condition – monogenic diabetes
• Not all monogenic patients can come off insulin, but many do – including Ashley Rollin, 31, a landscape gardener from Suffolk

Thousands of type 1 diabetics could be taking insulin medication needlessly and should ditch the daily injections for good, according to Britain’s top diabetes experts.

The drug – a lab-made version of the hormone essential for converting sugars in food to energy – is the main treatment for type 1 diabetes, as patients do not produce their own insulin naturally.

Some type 1 diabetics have implants fitted to deliver a constant ‘top-up’ when needed, but the majority face a laborious routine of checking their blood sugar levels after eating and then self-injecting.

Now experts have told The Mail on Sunday that about 8,000 Britons with type 1 diabetes may actually have another form of the condition, known as monogenic diabetes, which doesn’t always require injections.

These patients produce less insulin than healthy people and often present with similar problems to those with type 1 diabetes – such as a constant thirst and subsequent increased need to urinate, blurred vision and weight loss – which is why the two are often confused.

Experts have told The Mail on Sunday that about 8,000 Britons with type 1 diabetes may actually have another form of the condition, known as monogenic diabetes, which doesn’t always require injections. Ashley Rollin, 31, a landscape gardener from Suffolk (pictured with his wife, dietician Sara) was diagnosed with type 1 diabetes at 14 and took insulin for more than a decade. He has since be rediagnosed as having monogenic diabetes

But crucially, those with monogenic diabetes do produce some insulin, in small amounts, whereas those with regular type 1 diabetes produce none. 

Experts say this means monogenic diabetes could be controlled with ‘dietary tweaks’ or daily tablets.

Professor Partha Kar, NHS England’s national speciality adviser for diabetes, said: ‘There are patients out there who have been told they will have to take insulin their whole life, but in fact this time-consuming treatment may not be needed.

‘Until now, doctors have struggled to diagnose this condition. But now, thanks to increased training and testing, we are finding more and more patients.

Some type 1 diabetics have implants fitted to deliver a constant ‘top-up’ of insulin medication when needed, but the majority face a laborious routine of checking their blood sugar levels after eating and then self-injecting. (File image)

‘A large proportion of monogenic patients can control their condition through diet or by taking tablets which encourage the body to produce more insulin. 

Type 1 patients can’t take these as they don’t have any insulin in the first place.’

In type 1 diabetes, the immune system attacks and destroys the cells in the pancreas gland that create insulin, so it stops producing the hormone.

Diabetes fact

Type 1 diabetes in children under five has increased by five per cent every year for the past 20 years, says the Juvenile Diabetes Research Foundation.

Without insulin, sugar builds up in the blood, as it can’t move into cells, causing damage to the circulatory system and organs over time.

And without sugar, the body’s cells turn to other sources of energy, such as fat, in order to function. 

When fat is broken down, chemicals called ketones are produced, and these can also build up in the body, causing damage.

This can lead to a condition called diabetic ketoacidosis, which is life-threatening if not spotted and treated quickly. 

This is different to type 2 diabetes, whereby lifestyle-related factors such as obesity mean insulin doesn’t work as well as it should, or the pancreas doesn’t make enough, causing fluctuating blood sugar levels.

Monogenic diabetes is caused by a genetic fault and leads to the pancreas producing less insulin.

There are numerous sub-types of monogenic diabetes, linked to problems with different genes. 

Monogenic diabetes tends to run in families and, over time, if poorly treated, like all types of diabetes it can lead to a range of long-term complications, including eye problems and nerve damage, which can result in the loss of limbs.

If a doctor suspects that a patient has diabetes they will use a blood test, called a HbA1c test, to measure their blood glucose levels. 

But this reveals only that the patient has diabetes, not which type.

Instead, it is left up to the doctor to classify what form of the disease the patient has, and as a result what treatment they should receive. 

Because until recently so little was known about monogenic diabetes, clinicians have been unlikely to offer it as a possible diagnosis. 

More funding and better genetic testing means now it is more likely to be picked up.

‘If a parent has been diagnosed with type 1 diabetes, it may be worth both parent and child getting tested for monogenic diabetes,’ says Prof Kar.

WEIRD SCIENCE: Why we are taller than our ancestors

People in developed countries have grown noticeably taller in the past 100 years. 

In Germany, the average person is five inches taller than in the 1920s, while in the UK it is four inches.

Scientists believe it is the result of access to healthy diets and a reliable source of food.

Over the past century, poverty has decreased in the Western world while education about nutrition has improved.

By comparison, people living in parts of South Asia and Africa are only marginally taller than their ancestors. 

Scientists believe this is because food poverty is still widespread in these places.

‘The aim is to have a genetic diabetes specialist in every hospital,’ says Professor Maggie Shepherd, a monogenic diabetes expert at Royal Devon and Exeter NHS Foundation Trust.

She adds: ‘Not all monogenic patients can come off insulin, but many do and it transforms their quality of life.’

One such patient is 31-year-old Ashley Rollin, a landscape gardener from Suffolk. 

He was diagnosed with type 1 diabetes at 14 and took insulin for more than a decade.

He says: ‘It was a bit of a nightmare. My levels were always all over the place. The doctors suggested changing doses, but nothing seemed to work.’

Ashley suffered frequent episodes of hypoglycaemia, when insulin medication inadvertently pushes blood sugar levels dangerously low, and was often ‘shaky and unwell’ as a result.

But then, in 2018, he found out about monogenic diabetes. ‘My partner is a dietician and had treated a patient who was diagnosed with monogenic diabetes.

‘She suggested it might explain why my blood sugar levels were all over the place. 

‘I went to my GP but they hadn’t heard of it. I had to push quite a bit before I was able to get a genetic test.’

That test came back positive. ‘Within weeks I was rediagnosed and was finally off insulin.’

For Ashley, the change has been ‘a relief’. He now takes two blood sugar-controlling tablets a day.

He says: ‘It was 100 per cent easier than injections. I still keep track of my blood sugar levels, but they are more controlled than ever. It’s the first time that I’ve almost felt like a normal, healthy person.’

As soon as his daughter, Esme, was born eight months ago, he took her for a test. He adds: ‘Thankfully she’s negative. I’m so grateful for the peace of mind.’

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