First of all, an introduction might be in order. Hi there! My name is Helene, and I’m a 24-year-old diabetic living in Aalborg, Denmark. I’m running on a system using an array of diabetes-related gear, to make a so-called DIY closed-circuit insulin-delivering system. My collection of gear consists of an Abbott Freestyle Libre Flash Glucose Monitor (Libre, for short), a MiaoMiao-transmitter (MM, for short), an Insulet OmniPod insulin-pump (OmniPod, for short), a RileyLink, my smartphone and a smartwatch. It might seem like a lot of equipment, but what I’m about to show you is a testimony to the fact that it indeed is worth it!
I was diagnosed with type 1 diabetes back in the summer of 2008. Last year, in May, I had my first round diaversary (to those of you not familiar with that word, it’s like a birthday for your diagnosis). Ten years I had lived with a diagnosis that wreaked havoc on my life. Of course, I had some control – but it was minimal how much I actually dealt with my diabetes. I didn’t care. When I cared, I was easily disappointed, and I tried way too much over a very little amount of time – resulting in my body being more or less torn to pieces by my diabetes.
I had just finished my internship as a part of my study towards my bachelor’s degree. For six months, I had been suffering from what I now know to be Diabetes Distress. Back then, they called it depression – which wasn’t the case. I wasn’t depressed – I just wasn’t dealing with my diabetes in the most efficient way possible. That was when I discovered the MiaoMiao-transmitter. It was a godsend. To me, not having to scan to get my numbers was a massive success – although, I started to wonder what else was possible. I was on the OmniPod back then, but there was no way of connecting it to my phone. All that was possible was ‘’hacking’’ an older insulin-pump and thereby voiding the warranty. In Denmark, that isn’t a possibility, as we don’t own our pumps, but have to return them when the warranty expires, to get a new one.
I started dabbling in the LOOP-section, but since I had no real method of actually closing the loop, my research remained on the basics. Soon, the new Tandem insulin-pump arrived on the Danish market, and I was offered to test it by my health care team. It was a nice pump, and it certainly deserved the title as the iPump, for the slick design and the nice features. However, to use it as intended, I would need a Dexcom G5 or G6 sensor; none of them on the table at the time. I spent some weeks with the Tandem-pump, running open loop until I became aware of the possibility of actually closing the loop with OmniPod. I asked my HC-team if I could return to the OmniPod, and they agreed. I was thrilled! I ordered the RileyLink and as soon as it arrived, I was trying to make the magic happen.
I didn’t succeed. Why? Because I’m no magician. The coding to make the loop close didn’t work and needed a lot of fixing, which I wasn’t able to do. The developers are an amazing group of people, that I owe a lot of gratitude! After a week, at the most, I was up and running with Android Artificial Pancreas System and had closed the loop.
Now, remember that I said that I didn’t really care for my diabetes back then? Before I started using the Libre, my hbA1c was at 71. It had dropped just by using the Libre to 63 – but that is still too much. What a good number on the hbA1c-scale is, is up to you and your health care provider, but for me, I need to be below 50. Down below, I show some graphs. They show the three things I use to measure my level of diabetes management; my hbA1c, my Time in Range (TiR, for short) and my standard deviation.
Why don’t I just use the hbA1c to measure my quality of management?
I would like to explain my use of the three
measurements before we look at the numbers.
hbA1c is the most common thing to look at the level of diabetes management – so, therefore, I use it to compare to older results. I don’t really care much for this number, but my health care team does. They use it to determine if changes have to be made in my medication or other things. Not that they have much to say in that matter (I’m kidding!).
The next thing I use to measure my level of diabetes management is the Time in Range. I could go on and on about why TiR is so much more reliant than the ‘’stupid’’ hbA1c. I’m only going to mention one of the things, though; the higher the better. Have you ever heard about the saying that states the following; every non-diabetic has a 75% time in range. Every diabetic should strive at that target.? I first heard it back in 2015, when I started to analyze my own data instead of having my health care team do it. I trust my team – they are the professionals. But it is my body, and that is why I want to know my results.
The third, and last, of my three measurements are the standard deviation. To be honest, I am not completely sure what that number tells me. I’ve read it a thousand times, and I am still not sure. I think it is something about how much blood glucose levels fluctuate throughout the day? Anyway, the lower the number, the better!
hbA1c should be lowered, to show better diabetes management
TiR should be raised, to show better diabetes management
Standard deviation should be lowered to show better diabetes management.
Now, for the scientific proof of my little ‘’rant’’: the data! The data was collected by using my Nightscout-profile, which has been up and running since I received my MiaoMiao-transmitter in June of 2018. Since I’ve been running closed-loop for three months and open-loop for the three months prior to closing the loop, I’ve used those time-frames to make a basis for comparison. The data is collected from the reports made by Nightscout, and are the same reports I use to measure my levels of diabetes management together with my diabetes health care team. Now, to the numbers!
|No LOOP (90 days)||Open LOOP (90 days)||Closed LOOP (90 days)|
So, what does the numbers above actually show us?
Well, to be honest – it shows that my body is way more in balance than it was back when I started this little experiment. My hbA1c dropped with 17 points. As we can see on the picture below, it shows that my first measurement (63), would be considered just up there on the close to 8%. That means that I was close to 10 mmol/l most of the time. Considering that I am at a 46 now, which translates to a place between 6-7% (or 7-8.6 mmol/l), I have dropped with at least 1% – which is a slow but safe victory for me.
But why is it important to lower the hbA1c?
Two major studies have showed that the improvement of the hbA1c with as little as 1% – or 11 mmol/mol – cuts the risk of microvascular complications by 25%. Those complications include retinopathy, neuropathy and diabetic nephropathy. For those with type 2 diabetes research shows that lowering the hbA1c with the 1% also reduces the chances of following:
- Cataracts (19% less likely)
- Heart failure (16% less likely)
- Amputation or death dyre to peripheral vascular disease (43% less likely)
The studies to show this are called ‘’the UK prospective Diabetes Study’’ and ‘’the Diabetes Control and Complications Trial’’.
So, did LOOP actually do anything for me?
If I need to answer that question, you might want to check the data again. But yes – it did do something. It did a lot! I am not saying that LOOP did all of this for me, but it certainly did something. Considering that my hbA1c has dropped, alongside my standard deviation, I feel very confident in saying that LOOP did do a lot to help me manage my diabetes without being burned out or feeling the usual diabetes distress.
My hbA1c dropped with 17 points, while my standard deviation almost halved. My time in range grew from the 50’s to the 80’s – which is more than what a non-diabetic is expected to achieve. I would say that closing the loop got me the rest of the way – but I’m certain that loop had something to do with improved management in general. Now, I’ve also lost some weight, which is great! It was not a planned part of closing the loop, but since I am a bit on the squishy side, I don’t mind that part of looping.
Should you consider looping?
That would be a big yes from me. I know that it isn’t for everyone, and that it might be a bit hard to convert a lifestyle such as diabetes – you know, all those damn decisions – into something where you allow some piece of tech to do most of the job for you. I see it as being a controller instead of being the computer. You do still supervise your diabetes management, but the micromanagement is now passed on to loop. It can be scary, and their will be times when it doesn’t work – but perseverance is the way to victory in this case. And for me? I’m not waiting for a cure.