A Looping Failure

A few days ago I unscrewed the top of my RileyLink case, removed the tiny circuit board, and disconnected the battery. I put the box of pods back in the closet and retrieved my Tandem pump from the medical supply clutter box.

I am officially declaring my Looping experiment to be over.

If you don’t know what Looping is, it is a user-created app for an automated insulin delivery system that pairs an Omnipod or old Medtronic pump, a CGM, and a computer algorithm. If you want to learn more, read Loop Docs and check out the Looped Facebook group. Earlier this summer with files made available by the rockstars of the Do-It-Yourself community, I used my Mac laptop and a newly-acquired Apple Developer Account to create the Loop app on my iPhone. It was a miraculous experience for an experienced person with diabetes and a relatively inexperienced techie.

But I hated the pods. They often hurt and my insulin absorption was erratic. The occasional dark red/purple bruises were quite horrible and proof that diabetes can be a blood and gore sport. Some days the pods worked great. Other days I would bolus and bolus (or Loop would basal and basal) with seemingly no effect on my blood sugar. 

Previous to the opportunity to try Looping with an Omnipod, I was never interested in pods. I was convinced that they would be more awkward on my body than a tubed pump and infusion set. This feeling is why it is important to have CHOICE for those of us with diabetes. As much as I hate pods, there are people who despise tubes and love podding. I started using pods a few weeks before starting to Loop and quickly discovered that even changing pods every two days didn’t give consistent results. But I was excited at the possibility of automated insulin delivery and persevered.

In order to have success Looping, your pump settings must be close to perfect. Basal rates, bolus ratios, and insulin sensitivity factors are hugely important. My experience was that settings which worked well one day were abysmally wrong the next day. Because of my variable results with pods, I was pessimistic that I could get settings that would work consistently.

But it would be unfair to blame all of my Looping problems on pods. I was an emotional Looper and incredibly impatient when things didn’t go well. Instead of methodically problem-solving, I either randomly changed pump settings or in frustration went back to my Tandem pump for a couple of days. I was not good at relinquishing control over my insulin delivery and couldn’t move past 42 years of being the brain for my diabetes.

All along I have known that my future is with Tandem. In the last year I have been frustrated at my inability to use Basal IQ because of Dexcom’s delay in providing seniors with the Dexcom G6. But it will come and I am cautiously excited about the Tandem Control IQ hybrid-closed loop that that will be available late this year or early next. I thought Looping would be a good experiment for the months while I continue to wait for G6. 

Longterm using an Omnipod is incredibly expensive under Medicare in comparison to a tubed pump. My Tandem pump, its supplies, and insulin are covered under Part B where Basic Medicare pays 80% of the cost and my Supplemental plan pays the remaining 20%. Thus I have no out-of-pocket cost. Omnipod is covered under Medicare Part D pharmacy benefits. With my Cigna plan, the pods were Tier 3 with a $405 annual deductible and then hefty copays. Plus my insulin was provided under Tier 3 pharmacy benefits with copays and donut-hole repercussions. 

One reason that it was easy for me to abandon Loop is that prior to Looping, my diabetes numbers were mostly “in range.” Interestingly I compared 2-week Dexcom Clarity reports between Looping and my Tandem pump and the statistics were virtually identical. My hope with Looping was to reduce the mental burden of diabetes and it never really happened. I had some wonderful overnights where Loop prevented lows and highs and I woke up at a steady BG of 93. But I had just as many nights with constant Dexcom low and high alarms. In general I wasn’t one of the experienced and ecstatic Loopers who saw meaningful improvements in their diabetes life. And remember I was too impatient to keep working at it.

Will I try Looping again? Maybe, maybe not. There were things I loved about Looping: being in charge of my settings, targets, and alerts, controlling my diabetes from my iPhone and Apple Watch, and the potential to free up brain width that never rests with diabetes. The Looping community is incredible with help, expertise, and support given to all-comers (except the grouchy ones). Automated insulin delivery is the future but we are still limited by hardware, the speed of insulin, and the infinite complexity of Type 1 diabetes.

Today I am very comfortable with my decision to abandon Looping. I am relieved to be back using a tubed pump with less pain and somewhat more predictable results. There are definite warts using my Tandem pump with occasional occlusion alarms and non-customizable annoying alerts. But I am comfortable being back to “what I know.” I learned a lot while Looping and for sure gained more appreciation of how incredibly difficult it is to manage diabetes. I was once again reminded that while improvement is possible, perfection is not.

If you are interested in Looping, I encourage you to check it out. My experience was only my experience and not an indication of how the system will work for you. Lots of people are having great success with this do-it-yourself app and I am grateful for having had the opportunity to Loop and then the opportunity not to Loop.

11 thoughts on “A Looping Failure

  1. Laddie,

    Excellent observations about looping and I applaud you for “giving it a go” to test the waters … so to speak. I’ve read about it and followed some sites about it, but just have never had the drive to move off of my very comfortable situation with a tubed pump and my G5 CGM.

    Like you I’m waiting for the transition from the G5 to the G6 and it might even be into early next year, but that is good by me. My current ‘tubed pump’ has a Medicare warranty until 02/2021 so that is the earliest I’ll be able to get an Tandem X2. I’m also looking forward to the basal IQ feature as I always tend to run low overnight or any up 2-4 times dealing with those lows. I’ve even started running my overnight BG target to a higher number in the hopes that I can tweak myself into some higher numbers so I can have a full night’s sleep more often.

    Back to looping: I attended a monthly JDRF group meeting this past Tuesday evening and a portion of the event was people talking about looping, how it was done, etc., etc.. The fellow doing the presentation was a tech-type and really into all the hacks, tweaks and such to get it working and has it working what appears to be quite well for him. I think there was another person around the table who was also using looping and was very pleased with it.

    In my observation there just seems to be so many moving parts or steps one has to take to get this, that and the other set up and operating. I think all that ‘additional’ stuff is way more than I want to deal with at this time with my T1D run. I’ve been a T1D for 53 years and have worn pumps for 27+ years and CGMs for 8+ years. For me that is enough moving parts to deal with without adding more complexity (my observation) to an already complex and PIA disease to deal with. Also … I’m very thankful for my Medicare Part B (DME) and MediGap coverage at 100% for my pump and cgm and insulin. That is a gift in of itself.

    Again … proud of you for giving looping a trial run.

  2. Laddie … you hit the nail on the head when you said improvement is possible, perfection is not. I’m using a Tanden X2 with the G6 CGM and have seen some improvement, and i’m sure you will also when you get to the G6. Now if Tandem can better manage their warnings and alarms, things would improve again. I looked at Looping, but was turned off immediately when I was forced to use Grome … I don’t know, Google has enough if my info.

  3. I tried podding seven years ago for a five month period. When the infusion site delivered consistent absorption, podding was great. But I experienced wide swings in site sensitivity. Third day fade was a regular thing. I had many occlusions and one too many screeching alarms. I wished you had better luck with the pods because I think you’d benefit from looping. Once Dexcom starts delivering the G6, you’ll be able to utilize the basal-iq and the control-iq later this year. Nice reporting!

  4. I have never used a pod, but of course like all diabetes tech, I want to give it a go. It has less to do with wanting to pod than just say I tired it out.

    The same can be said of looping. I want to try it out, but have no interest in using one for the long term. I applaud you for giving it a go.

    I hope the Tandem works out well now that you are back to it.

  5. Laddie, thnx so much for your thoughtful commentary about ur experience Looping. Iv been reading and studying about it for about a year now. Iv made several attempts at locating the appropriate equipment but always ran into time consuming and financial obstacles. Your experience has helped me reaffirm that Looping could be more burdensome than waiting for the Tandem Control IQ. I just need to continue patiently waiting. It can’t come soon enough!!
    In Feb ’19, for some reason, and I didn’t ask why, as it seemed to good to be true, my DME distributor EdgePark said they were discontinuing the Dexcom g5 and I would have to move to the g6. However, when I tried to place my order they told me that they were no longer contracted to distribute Dexcom cgm to HealthSpring Medicare Advantage Plan (my insurance) participants. After filing grievances and an organization determination with Cigna HealthSpring, I was finally sent the g6 sensors, transmitter and receiver at the end of March. At the end of May, after using the majority of my g5 sensors I upgraded to the Tandem Basal IQ & started using the g6 I appreciate how it works. It’s not perfect and I cud probably tweak my settings to make it work more optimally.
    The other bonus is I do not have a co-pay with my Tandem pump supplies or my Dexcom sensors & transmitters. I believe this to be a mistake, even though I asked EdgePark when I was going to get billed. Iv not asked Cigna HealthSpring about it. God knows where questioning them could go….another bureaucratic stupor.
    So, today I’m thankful for what I have and your commentary has given me the boost of patience I need to continue the wait for the Tandem Control IQ. thanx again!!!
    Elizabeth T1 x’s 55 yrs… pump user since 1980

  6. I didn’t think I wanted to try and still have the same thought. Knowing you, I know you really wanted this to work. Like you, waiting for Medicare to start covering G6.

  7. Great post, as always, Laddie: your engaging and colorful descriptions help us all.

    Are you also saying that Dexcom 6 is *still* not available for Medicare T1Ds? CMMS approved it so long ago – what’s the deal with Medicare?
    Your passage seems to place responsibility for the delay on Dexcom – what’s up with THAT, I wonder. I have come to expect mind-numbing delays from government agencies but not from Dex…

    • Dexcom claims that the delay is due to supply issues. They continue to push back the date when it will be available. Very discouraging.

  8. Thank you So, So much for sharing your experience Laddie. My looping experience was really bumpy too but I was successful in running it at nights only and was content to leave it at that by switching it to open loop every morning. I started my loop journey last December and have only just gone full time Closed loop 3 weeks ago. But I certainly do not get those continuous stable lines like others but my TIR is slightly better. I do dream of having a Tandem IQ also.

Comments are closed.