Type 1 Diabetes Management - Looping

Type 1 Diabetes Management - Looping

In November of 2004 I was diagnosed with Type 1 Diabetes - an autoimmune disorder that I was told was treatable, but not currently curable, although "we would likely have a cure within 5 years". It's more than 15 years later, and newly diagnosed T1D's are still being told that "within 5 years" line!

The truth of the matter is that the medical/pharmaceutical industry has very little reason to CURE diabetes. It's a massively profitable industry (just Google "how big is the diabetes market" and start down that rabbit hole - the numbers are in the 10s of billions of dollars per year) that is dependent on treating and managing the disease, rather than curing it. It's frustrating, as a T1D, to be told time and time again that a cure is "on the verge of being released" or to hear rumors of cures from around the world, or to read yet another news story about how "Type 1 Diabetes has been cured in mice!", and yet it's been 15 years and the promise is still the same - "within 5 years".

Out of that frustration the #WeAreNotWaiting movement was born. The Nightscout Project enabled diabetics and caretakers to remotely monitor blood glucose levels. I've had a Nightscout site set up for about 5 years now. The OpenAPS project is one hybrid closed-loop system (a system built using a continual glucose monitor, or CGM, and an insulin pump, where glucose readings are constantly monitored, fed into the system, and micro adjustments to insulin delivery are made on-the-fly), and Loop is another hybrid closed-loop system. Tidepool is a not-for-profit that is working with industry leading pump manufactures and CGM makers to bring an FDA-approved version of Loop to the broader (non-DIY) T1D community.

I don't know about other T1D's, but I have "diabetes management milestones" that I look back on - things that I consider to be game-changers in helping me manage my disease etc:

  • Diagnosed in 2004
  • First insulin pump (Deltec Cozmo) in 2008
  • Back to MDI (multiple daily injections) in 2013 for a bit as the site adhesives were giving me bad rashes
  • Second insulin pump (Medtronic Revel) in 2014
  • Dexcom CGM (G4) in 2015, with an upgrade to the G5 later that year
  • Nightscout set up in late 2015
  • Third insulin pump (Insulet Omnipod)
  • Fiasp released by Novo Nordisk in 2018 in the US, I was an early adopter
  • Best A1C of my life so far (6.0) in 2019
  • Loop setup with Omnipod and Dexcom integration in March of 2020

December 31st of 2019 the open-source Loop project finally officially announced compatibility in the master branch for Omnipod Eros pods! I got all the pieces together over the past couple weeks, and finally starting looping this past week. It's only been a few days, and I'm already blown away by the results. There are tweaks to make and settings to dial in further, but take a look at these two images: The first is from April of last year, and the second is from yesterday.

It's an important note - any hybrid closed-loop system ISN'T an artificial pancreas (all consumed carbs need to be counted and bolused for) - but the two open-source options (OpenAPS and Loop) ARE excellent tools to help stabilize blood glucose levels with minimal interaction otherwise.

In the first picture there are a couple of highs, with the first probably caused by an incorrect breakfast bolus and the second likely caused from trying to pre-correct a dropping glucose level from probably stacking too much insulin in an attempt to bring the first high glucose level down. Through the afternoon and evening I was able to get it to drop more gradually, but still crashed a bit after 11pm, which then needed to be corrected and you can see the glucose level spiking a bit after that too, which probably led to a high blood glucose level the next morning.

In the second picture, there aren't any big spikes. There aren't any big drops. I had a Costco hotdog around 2pm, and my glucose level went up, but it came right back down. I had a really late dinner of fried rice and salmon (a tricky meal to bolus for - the rice has some up-front fast acting carbs, but also a really long absorption time for about 25% of the total carb count, plus I had the fat and protein of the salmon which absorbs over a much longer time than the quick carbs of rice) and even though my glucose levels were a little higher than I'd like (hung out around 180 for a couple hours), I didn't spike...I didn't crash later in the night...and I woke up to a blood glucose level of 93, which is perfect!

I'm excited to keep looping. It's probably the "biggest deal" in managing my diabetes since I got my Dexcom. I'm excited to go to my doctor in a couple months, and hopefully have an even better A1C level. I'm hopeful that it won't be too long before officially supported, FDA approved and manufacturer backed hybrid closed-loop systems are available - Tandem's Control-IQ system is already available and seems to be doing pretty well.

If you want to do some more research on looping, start with the LoopDocs page: https://loopkit.github.io/loopdocs/. Feel free to reach out to me if you have questions about how I'm managing my diabetes, or about the tools I'm using!