DIY systems are getting more popular for treating Type 1 diabetes.
If you’re interested in using a DIY closed loop system then we have put together an idea of what you can expect. But before you go ahead with starting with a DIY closed loop system (also called an artificial pancreas), make sure you speak with your healthcare team.
What is a DIY closed loop system?
A DIY closed loop system is a way to manage your diabetes. There are three systems, OpenAPS, Loop and AndroidAPS. They use the following pieces of tech:
- continuous glucose monitor (CGM)
- insulin pump
- small computer and battery pack (Open APS only)
- phone (loop needs an iPhone, Android, APS needs an Android phone)
- pump communication device, aka Rileylink (loop only).
The idea is that this group of technology works together to behave in a way similar to the pancreas.
Your CGM will send your blood sugar levels to the looping programme and that will then tell your insulin pump how much insulin you need. It does this by using an algorithm that has been tested by a community of users.
Some of the technology that you’ll use might come from your healthcare team. But you also might have to pay for it. The cost of a DIY closed loop system will vary because there are different parts.
Why use a DIY closed loop system?
The reason for using a DIY closed loop system (looping) is that you think it can help you manage your diabetes better. While the technology isn’t approved by regulators, people who use DIY say their HbA1c has improved and they spend more time in their blood sugar range. That means they see and feel a positive change to their quality of life.
You might also find that having diabetes is less of a burden when you use looping. That’s because a lot of the work of managing your diabetes will be taken from you by the system. And the DIY community can be very supportive from the emotional side of diabetes to the technical part of DIY. They won’t build your DIY for you, but they’re there to help with any queries.
How does DIY work?
You have a CGM and an insulin pump and you make the two talk to each other. The CGM you’re already using will tell you what your blood sugar level is but it won’t tell your pump how much insulin you need. The idea behind DIY looping is that it will bridge this gap.
General advice would be to get your devices to talk to each other first and once you’re confident that’s working you’ll take the next step to let the pump takeover. That means you set up your CGM and insulin pump separate from each other first and then add the steps to make them work as one system.
Balance cover star, Kev, created a DIY looping system for his daughter Amy.
"As a dad, I just wanted to fix the situation. The thing I really like is that when Amy’s ‘looping’, it’s ‘got her back’. We know she’s going to wake up on target or close."
The algorithms act as the translator between your CGM, insulin pump and device. Without the algorithm you can’t get the two to work together. The software required is free and community support is available to help you.
The algorithms aren’t clinically tested and are only available through the community of DIY users. You download the algorithms from one of the community websites and then install it on your small computer (a raspberry pi or similar). This device will then act as the communicator between your CGM and your insulin pump.
Is a DIY closed loop system safe?
The main issue with safety and the DIY closed loop system is that it isn’t regulated. And that means you can’t guarantee its safety. So at the moment using a DIY closed loop system is at your own risk.
Another safety problem is the system is relying on technology that can go wrong. And if you’re using a closed loop system to manage your diabetes and it goes wrong, you could see sudden changes to your blood sugar levels.
If you want to use looping to manage your diabetes, then make sure you tell your healthcare team. It’s important they know how you plan on managing your diabetes so they can give you the best support. They won’t be able to advise you on how to manage your diabetes using a DIY system. But they shouldn’t take your CGM or insulin pump away from you just because you’re closed looping.
If you do choose to loop you and your healthcare team should still be managing the rest of your diabetes together.
The DIY community can give you the information you need to build your closed loop system step-by-step. But you should be confident with using pump therapy before getting started. You need to make sure you have your insulin management spot on and already be using a pump and CGM with confidence.
Our position on DIY closed looping
We can’t recommend DIY closed loop systems because they aren’t regulated and don’t have any robust medical research to show that they are safe effective. But people who wish to use them should continue to get support and care from their diabetes team. Healthcare professionals cannot recommend their use, and people using this technology must be aware that they do so at their own risk.
We also have a more detailed statement on DIY closed looping.
Alternatives to DIY
There are four closed loop systems licensed for use in the UK.