DOMINIC NUTT: The high-tech DIY “pancreas” that finally got my diabetes under control

Confused and upset, I came to the end of the stairs leading to my little house and saw a huge bearded man with a stick above me.

Kent broke down the door of my house in Faversham and said, “Are you okay? Talk to me! I called an ambulance.

I am an insulin dependent diabetic and came from the gym after a workout, injected myself with insulin, ate and took a nap.

While I was sleeping, I experienced a massive drop in my blood sugar (or glucose) level, hypoglycemia (or “hypo”) – a life-threatening condition that knocked me out while falling into a coma.

The man who was my neighbor had heard cracklings and screaming. He knew I lived alone and thought I was in trouble, so he slammed my front door and found me crumpled in the hallway.

This has been my life since 1983, when I was 15 years old with type 1 diabetes (i.e. I don’t produce any of the insulin hormones the body needs to keep the right amount of sugar in the blood).

This particular event was an extreme event, but not an isolated one. Many times before and after (this happened 25 years ago), my life depended on the Good Samaritans, my friends, and after my 2005 marriage, my wife, Glenda, to save me.

But all this is a thing of the past, thanks to the artificial pancreas I made.

The pancreas is the organ that produces insulin, and as there are more and more people with type 1 diabetes, I put together a system where a standard insulin pump and a glucometer “talk” to each other via an algorithm downloaded to my phone.

It then delivers a continuously recalibrated dose of insulin. The results changed your life. And now the NHS is testing a plan to see if more patients like me could benefit from a similar system. Before I started using this DIY pancreas in 2020, I injected myself with insulin up to ten times a day.

This hormone removes glucose released from the carbohydrates you eat (found in sugar and starchy foods such as potatoes, rice, pasta, and bread) from the bloodstream. It then absorbs glucose into muscle cells for fuel and stores the excess as a reserve in the liver.

If you’ve already been diagnosed with type 1, you will typically be given two types of insulin: long-acting insulin, which you inject in the morning and evening, plus rapid-acting insulin, which you inject almost every time you eat a carbohydrate.

You will also be given a glucometer. You pierce your finger, smear the blood, and paste it onto a strip that is read by an electronic device. This gives you the value of the moment, but more importantly, it can’t tell you if your blood sugar is rising.

While I was sleeping, I experienced a massive drop in my blood sugar (or glucose) level, hypoglycemia (or “hypo”) – a life-threatening condition that knocked me out while falling into a coma. A

Getting the level right is like walking a tightrope in Niagara Falls – a slip can be deadly.

If levels get too high, known as hyperglycemia (or “hyperglycemia”), it can cause severe dehydration or even coma as your body tries to get rid of excess sugar.

If your blood sugar drops too low, your brain will run out of fuel and you’ll fall into a coma more quickly. If left untreated, this “hypo” can kill you within hours.

Such ups and downs hurt our loved ones. A few years ago, after suffering a terrible hypnosis in the middle of the night, Glenda shared on a social media forum the effect my diabetes had had on her. Reading it breaks my heart.

He wrote: ‘I have been with my wife for 20 years. I’m at the end of my line trying to deal with him through the smugness that has torn me apart and traumatized my teenage girls.

“We’ve had two major hypos in the last six weeks that have caused ambulance personnel to arrive. He’s a foot taller than me and violent with the hypo which means I have to hold him like EMS can’t.

I woke up several times in the hospital with glucose drops on my arm and had stitches on my head. I also woke up at home with my wife holding me. But now those days are gone.

For ten years I have had an insulin pump, a small electronic device with a thin tube that goes under the skin and delivers regular insulin day and night.

But even though the amount of insulin it pumped was constant, it didn’t match what I was doing and what I was eating, so there was still a lot of hypo and hyper.

So two years ago, I paired it with a system that constantly reads my blood sugar through a small monitor on my arm, and using an advanced algorithm on my phone, the reading automatically controls my pump to give me the right dose of insulin.

The system was developed in 2013 by Dana Lewis, an American patient with insulin-dependent diabetes. She “hacked” the meter and applied an algorithm to make accurate calculations of insulin dose.

He could then apply them himself, instead of making reasonable assumptions as most diabetics do.

He shared this online with other diabetics, and this community developed a system that allows the algorithm to directly control his pump. They called it “closing the circle”. They made this algorithm online and anyone can download it for free.

I got my hands on it after a diabetic colleague told me about it.

To use it, you must first use an insulin pump instead of an injection. You also need a continuous glucometer (CGM), which is a device with a small sensor under the skin. These are available on the NHS. Finally, you need a phone with the app.

CGM updates the phone app every few minutes and estimates whether your blood sugar is steady, rising, falling and how fast. The algorithm uses this information to increase or decrease the insulin coming out of the pump.

The system I use, known as the DIY loop and the Android Artificial Pancreas System, is incredibly liberating, but only a handful of the 400,000 insulin-dependent diabetes patients in the UK use it, according to The Lancet.

But this is changing with commercial versions of developed systems. The NHS has launched a closed pilot project involving more than 800 diabetic patients.

My doctor, Dr Sufyan Hussain, a diabetes counselor and senior lecturer at King’s College London who also has type 1 diabetes, has reviewed the system I use and has recently written guidelines for NHS colleagues. use it.

It could mark a new dawn for insulin-dependent diabetics.

Dr. As Hussain told me, “The medical and legal standing of do-it-yourself approaches and citizen science has been the subject of much debate and uncertainty.

“Our article clarifies the position of do-it-yourself artificial pancreas systems in diabetes as a safe and effective treatment.”

Hilary Nathan, political director of the Juvenile Diabetes Research Foundation, says the do-it-yourself cycle is “clinically recognized as a safe and effective treatment.”

It changed my life. No ups and downs on roller coasters, no fear of getting food or injecting insulin to keep my balance, no guessing and no stress. And my system will let me know if there is a problem. I hope the NHS collects it soon and shares it with other diabetics.