How I Loop: Near-Zero Risk for Hypoglycemia for the First Time in 30 Years
By Kelly Close
By Kelly Close
Read about Kelly’s better quality of life on Loop, as well as the difficulties that ultimately ended her Looping experience; part 2 of a series on a hybrid-closed-loop app to automate basal insulin delivery
When I heard about Loop, I was dying to try this customizable system that would automate insulin delivery from my iPhone and promised more time in-range, especially at night. While I only stayed on the system for several months (mostly due to issues with using an old, out-of-warranty pump), I found that its greatest benefits – not having any major severe episodes of hypoglycemia as well as perfect-glucose nights (truly) – were absolute gamechangers. Although the system doesn’t prevent hyperglycemia if you’re eating the wrong food, boy, are those soft landings nice. Not only did I feel reassured when I was hyperglycemic (no more “guessing” how much insulin to take to “correct”), but it was also meaningful that my family and friends felt better about my almost-zero risk of hypoglycemia.
This is the second of a multi-part series on Loop, and if it is new to you, we recommend first reading Adam Brown’s take on what Loop is and why it matters.
Why is diaTribe publishing a series on Loop, a do-it-yourself (DIY) system? In addition to highlighting the diversity of experiences (no Looper experience is the same!), we’re hoping to show what using a great, intuitive, automated insulin delivery system might be like. Building off of Medtronic’s MiniMed 670G and Tandem’s upcoming Control-IQ system, in the next two years, we believe commercial systems with more customizability like Loop will likely become available as a regulated and industry-supported technology. In that sense, the current “DIY” Loop is really a precursor to many more great commercial products, and that presents us an opportunity to share early user experiences on automated insulin delivery.
If you’d like to share your story, view the instructions here!
Table of Contents:
How did wearing your DIY system change your mealtime insulin dosing or approach?
In what circumstances did Loop struggle to keep you in range? Are there times when you turned off closed loop?
How did wearing a DIY system affect your diabetes burden, emotional state, or quality of life?
Did your out-of-pocket costs change while you used a DIY closed loop?
If you could wave a magic wand, what is the #1 thing you would change about your DIY system?
What is the biggest public misunderstanding about DIY systems?
What is the #1 piece of advice you would you give to someone considering a DIY or commercial closed-loop system?
What advice would you give to the FDA considering how to propel DIY innovation?
Looper Name: Kelly Close
Years with diabetes: 32
Time wearing a DIY closed loop: multiple months on and off (not currently)
Set up: Loop app running on iPhone, Dexcom G5, Medtronic 523 pump (old, from a clinical trial), Riley Link communication relay device
Coding experience: ZERO
Q: How did wearing Loop change your glucose levels?
I’d have a hard time tracking down exact numbers, as I stopped using Loop a while ago, but I do remember the striking increase in time in range, and particularly the huge decrease in time spent in hypo – it went from well above 10% per day below 70 mg/dl to close to 0%. I loved having virtually no risk of hypoglycemia; this was fantastic and absolutely transformative for my diabetes. The fact that you can have hyperglycemia and then have a “soft landing” with Loop was incredible – so my time in hyperglycemia also went down, because although Loop does nothing to prevent hyperglycemia from too many carbs, I definitely spent significantly less time in hyperglycemia. Amazing! An added bonus was that my family and co-workers also felt better that my hypoglycemia risk was so much lower.
My guess is that my time in “normal” range (70-180 mg/dl) was maybe 50-60% before Loop, but with Loop it jumped to well above 70%. My family definitely noticed my better mood when I was spending more time in range. I remember occasionally hitting 80% time-in-range, but that wasn’t that often because I still eat unpredictably, and unfortunately, hybrid closed loop can’t fully account for that. And if you don’t eat well or eat too many carbs – well, Loop definitely corrects more quickly and better, but you still go into hyperglycemia just as much. I didn’t get my A1C checked at the start and at the finish, but we certainly know that it improved based on better time in range.
Perhaps most notable, despite what happened the day/night before, I started nearly every day between 100 and 120 mg/dl. It was like waking up with a clean slate, which was hugely positive for my own mindset.
Q: How did wearing your DIY system change your mealtime insulin dosing or approach?
Loop helped take the pressure off calculating the correct bolus, as I would often do a bolus that was either slightly less or slightly more than what I needed; Loop would add or subtract the right amount of extra basal insulin later, based on CGM trends.
Q: In what circumstances did Loop struggle to keep you in range? Are there times when you turned off closed loop?
Loop doesn’t keep you in range at the high end if you don’t eat in what I would call a “responsible” way. In that regard, I didn’t find it too much different from when I wasn’t on Loop, but of course it did reduce my time out-of-range significantly because I had a little “counselor” guiding me back into range and working pretty fast. And of course, on the low end – it’s genius! So many days I would feel like crying out of joy that I did not have hypoglycemia that day. Hypoglycemia takes so much from us, and I realized when I didn’t have it so much – I have felt so much shame from hypoglycemia for so long and having a machine help me avoid that – it’s amazing.
Q: How did wearing a DIY system affect your diabetes burden, emotional state, or quality of life?
While I loved having virtually no risk of hypoglycemia, I did have some issues using such an old Medtronic pump. It felt weird to me. I had previously been an Omnipod user, which was easier for me to use and something I really missed. The reason I moved to Omnipod a decade ago was so I wouldn’t have to wear a traditional tubed pump, and although I loved automated insulin delivery, the tradeoff was pretty big. Everyone’s mileage varies – I can’t wait to see automated insulin delivery with a tubeless pump! (Note: we anticipate that Omnipod should have an automated insulin product available by 2020 – I’m excited to see the first generation and how it can improve from there!)
I also realize that so many do not even have enough insulin, much less a fancy system – I feel incredibly privileged to have had the opportunity to try out this system, and I sincerely hope that my discussion below of any challenges on Loop do not come off as complaints, but rather an honest reflection on why Loop ultimately didn’t work for me.
This part is important: I found it really hard to constantly remember to have my RileyLink device with me, meaning VERY close by. That’s because I don’t usually wear something with pockets (and found it hard to change that!), and I just couldn’t get into this whole idea of a belt around me with all this diabetes “stuff.” I had also been spoiled (for me) with a tiny pod, so carrying around a traditional tubed pump was, for me, while worth it, still a pain. But so you know – I loved my little RileyLink. It’s so small and powerful, and I loved it – but I would worry about losing it, and then the system doesn’t work if the RileyLink is not very nearby.
I did find a workaround to the pocket problem – I’m sure many women with diabetes can relate to this – by sticking the RileyLink in one side of my bra and the Medtronic pump in the other side of my bra. But (and this is a little embarrassing), the pump broke down several times due to what we believe was sweat. My amazing husband figured that out through looking through the massive Loop “help” site on Facebook. This was ultimately the reason why I went off Loop – fixing the pump became too much of a hassle because we had to actually get another part for it, and then that one broke. We thought it would be endless fixes. And to me, in the end, even if we could’ve made that work, I couldn’t really figure out a way to always carry a purse around, and then having the purse right next to me didn’t really work. Simplicity is a huge priority for me, so ultimately those two problems really made it hard.
The other thing, though secondary, was charging the RileyLink. It was a special charger, and I often travel for work, and it was one more thing to always remember.
One last thing – this is really sad. Because I so missed my tubeless pump, I never did learn again properly how to change the tubing. My husband always changed it for me. He is incredible – but I remember one time, I was actually away from home for more than four days, and Nicole Johnson had to do it for me because I couldn’t figure it out – sad but true! We laughed about how depressing that was for me.
Q: Did your out-of-pocket costs change while you used a DIY closed loop?
I spent less on insulin since I took less, but the RileyLink was $120. That isn’t a lot for me (and I’m very grateful for that), but I know that it would be out of reach for some patients, just like traditional pump therapy (in the thousands of dollars) is. Although they weren’t monetary costs, the hassle of carrying around pump supplies, cords, the extra equipment did end up being a “cost” in my mind. For me, I don’t know if it is just the organizational end, but even the visibility of a lot of extra diabetes “stuff” is a bit taxing. (Blasphemy, I know.)
Q: If you could wave a magic wand, what is the #1 thing you would change about your DIY system?
The most challenging part for me were all the pieces I had to keep track of – I’d change that in a heartbeat so I could avoid:
- Having to remember and charge the RileyLink each evening (I go to bed at very different times depending on my various responsibilities, and sometimes I didn’t have enough time to fully charge it or I’d forget to do this);
- Wearing an older pump (I had forgotten how to fill the insulin with a very old pump); and
- Having to have all the stuff really close to my body.
If I could change one additional thing, I’d love to use a new cool pump with Loop. I was in a study recently at Stanford, and I did love the new Beta Bionics pump. Completely intuitive. Although I didn’t interact with the actual very old Medtronic pump too much on Loop (everything is on the phone), I didn’t like using old technology and this pump system that wasn’t my first choice. In fact, I actually felt a bit bad for Medtronic, because something could happen, and there was not a way to call Medtronic and ask for help. So that’s another thing I’d change : >.
Last, I’d look to make the setup way easier if at all possible. I didn’t actually have to do any of the technical stuff – my husband set it up – but I know it’s a hassle for less tech-savvy people or just for people who don’t want to spend time on that sort of stuff. I especially don’t like spending time on my diabetes doing “setup” stuff, and though it’s very clear it was worth it, I feel very lucky that I live with someone who could make this happen. I’m not even positive that I would have had the patience to set it up myself, despite the obvious upside. I was much more into humanities than computer science classes in college, and while it doesn’t take a computer science degree to set up Loop, I definitely prefer spending my time on more creative pursuits. Bottom line, I think being at least a bit more on the technical side really helps – also, for those like me who rely on help lines when something goes wrong – I’m excited to have these amazing interventions in more traditional settings.
Q: What will it take for you to get on a closed loop system?
Get more of these approved! I really want to use a system where I can call a 1-800-LOOP number, rather than digging through blogs and Facebook posts (which are truly helpful but I’d just rather speak to someone on the phone). While I know interoperability is a big goal, I’d probably rather get the pieces from one player so it’s one order, one place to call, etc. I know – call me old fashioned.
Q: What is the biggest public misunderstanding about DIY systems?
Hmm. The field is so young, I don’t know if there are any big public misunderstandings; it’s such a personal choice to go on this, and the question implies that everyone’s experience is similar. I do think that’s true on the positive side – I have yet to meet a person on Loop who didn’t see significant, outsized, larger-than-life benefits. Not one. For me, the downside was all the “stuff,” which led me to ultimately go off the system. My pump “broke” multiple times, and in the end, it wasn’t worth it to have so many interruptions. (My understanding is that the malfunctions were because I had a particularly old model of the 523, and people did offer to get me “newer” versions of the compatible Medtronic pumps – but I was worried about the same thing happening.)
Q: What is the #1 piece of advice you would you give to someone considering a DIY or commercial closed-loop system?
Being patient, adaptable, and flexible will really help. For Loop to work, you need to have a love of tinkering, or at least not be averse to troubleshooting, and you need to be willing to spend time online. Having a doctor or healthcare team that is open to DIY is critical, as well as having a supportive partner or broader family or friends. It can feel isolating when things go wrong, even when you have a lot of family support, so I imagine if you don’t like spending time online, that could be challenging. I’m particularly “done” with spending so much time in front of my screen personally – that didn’t help.
The great news is that so much progress has been made on DIY, and DIY and commercial systems are converging – there are so many commercial systems being built that I think we’ll be in a very different place in a couple of years. Medtronic isn’t standing still – thousands are on the MiniMed 670G, which has a huge advantage over Loop in that it is an FDA-approved, regulated product, and a next-gen 780G is in the works. Insulet and Tandem are moving quickly, as are Lilly, Bigfoot Biomedical, and Beta Bionics. Most of these improved automated systems are expected to launch within the next two years – a lot of things will have to go right, but this field is moving fast and has lots of support. We love that so many excellent technical minds are moving on this, so many design minds, so many manufacturing minds, so many logistical minds, and on and on. And I personally thank massively all the #wearenotwaiting pioneers.
Q: What advice would you give to the FDA considering how to propel DIY innovation?
The FDA is already propelling a lot, and the agency should take its time with it – as long as it needs (though we hope that the closure of the US government doesn’t slow down this too much). The Medtronic 670G hybrid closed loop system was approved quickly, and it was a pioneer and a lot has been learned since then. With Tidepool making all its notes public, that should help the field – being transparent is so important. Upon announcing approvals, FDA would ideally state any concerns upfront or any areas of uncertainty. In the future, perhaps we can learn more at the start of product launches. Because I care so deeply about customer support, having a sense from FDA about what is needed and sharing that as part of the approval would be fantastic so that patients know what to expect – this is particularly important with interoperability on the forefront.
If you are using Loop or are interested in trying the do-it-yourself Loop automated insulin delivery system, consider joining an observational study of Loop users. The study is being done in collaboration with Loop developers to collect information from adults and children with type 1 diabetes using Loop, sponsored by the Helmsley Charitable Trust. This information will be used to learn more about how well Loop works, what problems users have, how often severe hypoglycemia and diabetic ketoacidosis occur, and how well the system controls blood sugar levels. Visit http://www.jaeb.org/loopstudy for more information or to join the study.
Read part one of this series here, which shares background on Loop and Adam’s experience on the system.
We’ll share more Loop user stories in issues to come! If you’d like to contribute to our series, view the questions and instructions here.