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Hot topics - Detecting and treating type 1 diabetes early

In type 1 diabetes, the body’s immune system mistakenly identifies insulin-making beta cells as a threat and sets about destroying them. 

Thanks to decades of research, we know that this immune attack doesn’t happen overnight. And we can look for signals the immune system sends that show someone is in the early stages of type 1 diabetes.  

Knowing who is on the journey to a type 1 diabetes diagnosis opens a window to use new treatments, called immunotherapies, to hold off the immune system attack and delay, or even one day, prevent a diagnosis.  

Early warning signs

In the months or years before someone is diagnosed with type 1 diabetes, the immune system starts making proteins, called islet autoantibodies. In type 1 diabetes, the autoantibodies are designed to attach to beta cells and earmark them for destruction.

They can be detected with a simple blood test, telling us if someone is going to develop type 1 diabetes in their lifetime. This is known as type 1 diabetes autoantibody screening. 

How can I get tested?

Right now in the UK, screening for type 1 diabetes autoantibodies is only available as part of research studies. You or your child may be eligible to take part.   

  • Children aged 3-13 years can sign up to the ELSA study, funded by Diabetes UK and Breakthrough T1D. ELSA will answer important questions that could help to make type 1 diabetes autoantibody screening in children a reality in the UK.  

  • Adults aged 18-70 years can get screened through a similar study, called T1DRA. It's looking to understand more about how type 1 diabetes develops in adults. 

  • People aged 45 years or younger who have a close family members living with type 1 diabetes may be eligible for autoantibody screening through a research project, called INNODIA.  

What does it mean if I have autoantibodies?

The immune system can produce several types of type 1 diabetes autoantibodies. Type 1 diabetes autoantibody screening tells if you them and how many you have. Your chances of developing type 1 diabetes increases with the number of autoantibodies found. Here's what your results could mean.

  • You have no autoantibodies. You don't have a high risk of developing type 1 diabetes. It's not a guarantee that you'll never get the condition, but we know your immune system isn't planning an attack at the moment. 
  • You have one autoantibodyYou have a higher risk of developing type 1 diabetes in the future than someone who has no autoantibodies – about a 15% chance in the next 10 years Autoantibodies can increase, stay the same or decrease over time. Most people with a single autoantibody won’t go on to develop type 1 diabetes.
  • You have two or more autoantibodies. At this point, you have early-stage type 1 diabetes and the immune attack has already started. The chance of being diagnosed within the next 15 years is around 85%. And there’s almost a 100% chance of getting a diagnosis in your lifetime. At this stage, you can still have normal blood sugar levels and not need any treatment. Over the following months or years, your immune system will kill off more and more beta cells. Once so many have been destroyed that you’re no longer able to make enough of your own insulin, blood sugar levels become high and the symptoms of type 1 diabetes appear. This is usually the point you’d get diagnosed.

Early-stage type 1 diabetes

Early-stage type 1 diabetes is when two or more autoantibodies are detected. Scientists have discovered that people with early type 1 diabetes progress through distinct stages before progressing to a diagnosis.

In stage 1, blood sugar levels are in the non-diabetes range and you have no symptoms.
In stage 2, blood sugar levels start to rise. You have no symptoms and don't need insulin..
In stage 3, blood sugar levels are dangerously high and the symptoms of type 1 diabetes appear. You need to start insulin therapy.

How screening could help

Autoantibody screening to detect early-stage type 1 diabetes could make all the difference, giving people the best possible start to life with type 1.  

By finding out if you or your child has type 1 diabetes autoantibodies is a very personal decision. For some people, knowing you’re very likely to one day develop type 1 diabetes could cause anxiety. That’s why it’s important people found to have early-stage type 1 diabetes get access to the right support. 

Benefits of screening include: 

Monitoring and a safe diagnosis

Around 25% of children don’t get diagnosed with type 1 diabetes until they are in potentially life-threatening diabetic ketoacidosis (DKA). Autoantibody screening could reduce this risk by around five times.  

It gives healthcare professionals the chance to follow people with early-stage type 1 diabetes closely and start them on insulin sooner, before blood sugar levels become dangerously high. 

There’s also evidence that starting insulin sooner and avoiding DKA at diagnosis can have benefits years down the line. It has been linked with closer-to-target blood sugar levels over 15 years later, which we know can help to protect against diabetes complications

Time to prepare

Knowing who’s going to develop type 1 diabetes means more time for the support and education they need to prepare for managing type 1 diabetes, including learning about insulin injections, carb counting and hypos. This could give a ‘soft landing’ into life with type 1 diabetes.

Access to new treatments

People with early-stage type 1 diabetes could be eligible to take part in clinical trials testing promising immunotherapy treatments, designed to halt or slow the immune attack.  

One such immunotherapy – teplizumab (Tzield) – is currently being reviewed for use in the UK.   

And we’ve been funding pivotal research to develop and test a pipeline of different immunotherapies to find more that work. In the future, we hope that people with early-stage type 1 diabetes will have access to a selection of immunotherapies to delay, or entirely prevent, their diagnosis.  

You can learn more about immunotherapies.  

The future of screening

The ELSA study and further research will provide vital information on whether widespread routine type 1 diabetes autoantibodies screening in the UK is practical and cost-effective, and acceptable to people who take part.  

We also need to work out how best to support people with early-stage type 1 diabetes within the NHS.

That’s why we’re funding Dr Rachel Besser at the University of Oxford, who has set up the UK-Islet Antibody registry. Anyone who has tested positive for type 1 diabetes autoantibodies can register. The aims are to closely monitor people with type 1 diabetes autoantibodies, find out the best way to look after their physical and emotional health, and connect them to immunotherapy clinical trials.  

We’ll continue funding research and working with key players in the NHS to pave the way for a future where we no longer wait until type 1 diabetes fully develops to diagnose and treat it.

If you’re worried about your or your child’s risk of type 1 diabetes, the most important thing you can do is be aware the signs and symptoms of the condition and to see a healthcare professional if you notice any of them.

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