My horrible experience with Twiist!

Diabetes Technology DIY Closed Loop Systems
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WARNING! THIS IS LONG SORRY (not sorry)

Sorry this is so long, but if it even helps 1 person, it’s worth it!

So Twiist seduced me by being in the first round. My MD agreed and I got trained and have been using it for awhile now but I went back to Trio Today using my old tried and true Omnpod Dash and Dexcom G7.

I was originally part of the pivotal study for Tidepool loop way back when, and I have always loved LOOPING. But I’m a high insulin user who often times has to supplement boluses via FIASP pen so that I’m not changing the Omnipod every 24-30 hours! When I heard the makers of Twiist were making a 300 unit pump based upon the old version of Loop, I thought I’d give it a try as it should last the full 72 hours. Wasn’t too keen on going back to a tubed pump though and wasn’t sure I liked the idea of switching from Dexcom G7 to Libre 3+. But I’ve always had problems with the G7 lasting the full 10 days (typically 7 out of 10 would fail by day 7-9) so I figured what the heck?

So I got trained, moved over to Twiist and things seemed to be going great. Until it didn’t. I’ve always had my G7 on my stomach because things never stick well on my arms. My trainer convinced me to try the arms using Skin Tak, and that worked holding wise. For the first several weeks, numbers were great and matched finger sticks. Then the problems started!

Not sure exactly what went wrong, but I kept getting URGENT LOW alarms saying I was like 50’s when I was 150’s. Mostly at night. I reported it to Libre and got a few replaced. Tried different spots. Even tried my stomach. NOTHING SEEMED TO HELP! Twiist was no help because the pump itself was working fine. They don’t support the Libre, Abbott does.

I really tried to like this setup. I really did. But the last straw was last night where it did it again. It woke me up every 30-60 minutes with URGENT LOW alarms. over 3-4 hours1 The Libre 3+ was right where it is supposed to be - on my left outer upper arm. I made sure I wasn’t compressing it at all. And unlike Dexcom, you can’t silence the alarms for a time NOR CAN YOU CALIBRATE THEM!

So I took the pump apart, pulled the battery, and tried to sleep. The stupid app kept alarming saying that there was no cassette. I force closed the app. No go. I finally had to DELETE the app!

Tried to get a few hours sleep. When I woke up, I rebuilt Trio, put the Dexcom G7 on and started an Omnipod and it felt like riding a bike! I’m back home and I am pretty sure I’m staying here!

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Sorry to hear of your problems with the Twist and Libra 3+. You have just helped me, though, in knowing that the Dexcom G7 – for all of its problems – and the OmniPod 5 still probably are the best system for me, too.

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Shouldn’t your post be titled “My horrible experience with Libre “? I mean, call it whatever you want, but it seems like the Libre is the problem. Twiist is supposed to be compatible with multiple CGMs eventually.

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I agree. My CDE was raving about the Libre, but I have too many Dex 6 pods to switch. Now I do not plan to!

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I don’t blame you for going back. I would have done the same. I went from Omnipod 5 to twiist 6 weeks ago. I had some trouble the first couple of weeks, but that was due to manufacturing and the starter kits. Once twiist replaced my starter kit I’ve been happy.

I wear my CGM (Dexcom, FreeStyle, whatever) on my outer thighs. The skin on the back of my arms is crap because of all of the adhesives over the years. I have too many dead zones on my stomach from poking holes in it over and over. My legs work well and they don’t have compression lows like other parts of my body, I don’t know why.

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Thanks for the review, Brad. Sorry about all the misery. I feel for ya’, Buddy.