r/twiist

I really need advise. So I need to start another Libre 3 but I’m hesitating. I’m currently running a Dex G6 also as the Libre is never accurate for me. It’s always reading low in 80-50 range. Therefore cutting off my insulin. I’m working on the Eversense 365. In the meantime if I use a Libre for the first 3 days it will read that I’m in the 50’s. Then read fine through day 6. Then after day 6 it will constantly show CGM Signal Loss until the end of its life. So this totally messes up the Loop algorithm. Currently I am shutting off the Loop to dose for meals. Then waiting about 30 minutes and restarting the Loop.

So my question is do I use a Libre with the Loop or just use the Dexcom G6??

I'm early 20's and do line/utility work in a very rural environment. My job is very physically demanding, does not allow for me to take breaks in the middle of jobs due to the nature of it to fix things unless it's eating something quick or taking insulin quick then getting right back to the job.

I've been using this setup for 7 days now, been using the Libre 3+ for a lot longer. I love the libre, and strongly prefer it over Dexcom (as dexcom almost killed me one time due to its inaccuracies, the larger unit, more frequent changes, and the pain that I feel in my job having it on my body and I will never trust it again.) My endo sold me on it after months of trying to convince me, I gave the Twiist setup a try.

The first few days were rough. I choose my stomach initially, but with my climbing belt on, it frequently pulled it out, caused line blockage alerts, etc. I had to go home early to change it between my calls I had, which was extremely inconvenient and set me behind for the day. I changed it to my upper thigh, I keep my libre 3+ on my thigh and have never had any issues with that placement other than initial pain when going up and down ladders on the first few days of insertion. It seemed to be working better.

These last few days have been miserable. Today was the worst.

Yesterday, I slept on it weird I guess and it had a blockage, waking me up time and time again as I fought the damn thing trying to get it to work and keep resetting it. But then it worked fine the majority of the day, until night time, where it stopped working for about 4 hours. Got it working again, then I woke up to a blood sugar of 340 and a blockage.

It didn't work at all today. I went home once in the morning, reset the line, tried to make it straight, loosened my belt (major inconvenience when I am working a physical job, but you know whatever, let's give it a try) and tried bolusing at maybe 350 blood sugar. It didn't get though a full unit before having another blockage. Now I'm on another job and can't do shit about it. Another hour and a half my blood sugar nearing 400, I went home, adjusted it again, did a physical insulin shot with my Humalog pen, and went back out (mind you, I can't just do this. Linework you can't just leave and come back like this, even if ADA allows you to treat medical things, it's not how this job works and I'm not changing that.) and it got another blockage.

Decided screw this, I'm taking this stupid thing off, went home again, took the pump and the tubing out, put it in a ziploc bag and took it with me. Glad I did, cause I learned that the insulin pump needs to be in range to check my blood sugar, and when I left it in my work truck while running a line, I couldn't check my blood sugar. Awesome- I love that! It has continued to beep what feels like every 15-20 minutes, absolutely pissing me off, telling me there's a blockage and I need to reset it, since about 1:00. it's 11:46pm right now.

Anyways we get home, I shower change and try it again. I bolus 10 units for 30g worth of drinks and 40g of food. My blood sugar at this point has been high all day but I haven't been able to eat much because of this stress and high blood sugar anyways, the only way I can bring it down is the pens, so fuck it, I'm hungry. Had a well balanced meal.

It keeps going up higher. And higher. And higher. I attempt to take more. Line blockage. Higher. Higher. My blood sugar went "HIGH" for the first time in years. It was over 350 for at least 2 hours. It didn't start going down until I took insulin with my pen, which the 6 units I took actually affected me and brought me under 200 for the first time all day. My head is pounding, I'm sick as a dog, and I'm dreading work tomorrow.

Here's the kicker. I have screenshots. Without telling me, this fucking pump decided to only bolus .12, or 2.1, or whatever units out of the 2, 8, or whatever I tell it to. It decides....I have a blockage, I'm done. it didn't tell me this. Which is asinine. I'm brand new to it and have been told by my endo and the trainer to let it do its' thing and expect it to correct itself without bolusing extra, and definitely not to take any lantus or humalog, and the fact that I was just sitting high for no reason despite multiple attempts to do more insulin because of a "line blockage" is insane.

I've tried, through the course of today, changing the site and the tubing thing. You might say change the disc itself out but do you guys understand how fucking difficult it is to get insulin? I'm not worried about the cost of it, I'm worried about the fact that I only get a certain amount every day and if I go over, I am going to completely run out? (USA, lol.) I can't just get extra. My doctor prescribes me more but insurance denies it due to lack of necessity. So if I were to waste all the insulin that I have in the disc, plus the units it pours out in the beginning, plus wherever else the insulin goes, plus not taking lantus and relying on more humalog, how much more am I going to go through?

This experience has been the most stressful and difficult in my time as a T1D. This is my first experience with an insulin pump. We haven't even gotten to cold weather (we have frequent -15 wind chills, I find myself in waist deep snow, and the snow is crazy up in central Maine.) I find it incredibly difficult to carry it around with my job and hobbies, and if it weren't for the fact that this was my last Libre3+ that I have, I would have ripped it all off already and turned the pump off.

I don't know if it gets better, but I'm done. And I'm going to be woken up every 15 minutes tonight because this damn thing does not know how to shut up. There's no way to turn off the line blockage notification, at least that I see. So not only do I feel absolutely terrible on the 4th of July, but I'm going to get zero sleep again, and probably none again the next day while I try to fight with a doctor, pharmacist, or whoever will let me talk to them to try to get another Freestyle Libre3+ sensor, due to this pump being linked to it.

I thought it was amazing, and the concept is amazing, it's great for a lot of people. But I have never been this stressed, and I was homeless for three months living in my car with no permanent address, no reliable way to get supplies, and insane temperature fluxuations and physical labor while I got myself back on my feet and got money again. I made do so much easier than I am with this pump.

Anyone else feel the same way? Anyone else felt this way and changed their mind? Anyone else have a physically demanding job that I question if this pump really is compatible with?

What’s yall favorite accessories for the twist pump?

Who here has tried to put their Cleo Infusion on their upper thigh? Seems like it could work well. I’ve lost like 165 pounds so I have a good amount of loose skin in my abdomen area which seems to be causing some issues with “blocked line” error but the upper thigh for me does mot have the loose skin.

TIA.

Hi! I'm looking for some help deciding how long I should wait to ultimately decide whether or not to keep using twiist or just go back to MDI.

My insurance coverage is pretty solid and I use an eversense already, so I thought it would be useful to try out twiist to just have the real insight on how useful automated insulin delivery would be after 30 years of classic pumps and MDI.

The first week was full of spikes and lows - my twiist trainer was tweaking settings near daily until we found our feet. My Carb Ratios are way less aggressive that I thought I needed. My ISF is more than double what it was before. And my basal rates are now higher than I would have thought (because that's more normal for the Twiist algorithm, I guess).

Invaluable lesson so far: I have been using too much insulin. And that might help my TIR regardless of my insulin delivery method.

My TIR on MDI without a lot of effort looked like 70% in range, 11% low, 19% high (though not super high). Average bg 136.

My TIR on the last three weeks of Twiist have been 79% in range, 5% low, 16% high. Average bg 135.

While objectively the Twiist helping, I'm not sure I can get past the other quality of life things.

I think I lean towards MDI for the following reasons:

I feel freer on MDI.

Less gear.

Fewer variables.

No painful sites.

No site failures.

MDI means no relentless beeping when I'm out of range and trying to sleep (I have all but critical alerts turned off and still I feel like a loud annoyance for my partner during out of range nights with beeping going on for up to an hour while I'm waiting for the correction to kick in) - my on body vibrations from the eversense work so much better for me.

The pump algorithm is not particularly aggressive in correcting a user error high. Did I underestimate dinner carbs? Well now I'm 260 and going to come back in range over approximately 6 hours.

I feel more disabled with a pump on. And I don't feel super disabled in general. Maybe it's just managing tubing or having to ask for help disconnecting if I'm wearing a site on my arm. Or having to decide not to swim if I want to leave my pump on.

And not least, every single pump site *hurts* by day 2-3 and just leave a scar that's slow to heal. I'm using Flonase, skin prep, skin tac.. but it's the continuous infusion of insulin under the skin where the cannula is that is noticeably irritated every single time. It's pain. Arm sites seem better, but the scars there also remain visible over a week later. It just doesn't seem sustainable.

So twiist users, how long do you think I should ride it out to form a full fair opinion?

I also welcome any tips to combat the complaints I've levied above.

I started MDI today to give myself a pump break. I closed Twiist app on my iPhone (I mean by filling the app up on iPhone screen to turn it off and I even got a message saying alerts will not be delivered). but still it just alerted me that twiist pump had not been communicated for over 90 minutes. Is there a way to completely mute the app and pump?

Hi guys, I’m having a ton of trouble with libres. Especially this last week. I’ve had FOUR fail. I’m tired of it. Does anyone have the eversence CGM and do you like it?

so pissed at apple right now. my phone forced an update and it completely reset my pump to factory default. is this going to be a reoccurring thing? every time there’s an iOS update!

Used venting bc there isn’t a positive flair? Mods please correct me if I’m wrong!

I’m in love! My TIR has been 90%, the pump is so small and easy to hide in my clothes, and generally it’s been so easy to use.

Definitely a different feeling from t:slim and Medtronic but I’ve been a t1 for 30 years and so far this is the best pump I’ve been on. I’m excited to get the eversense in August too!

My pump is not connecting after I changed battery and cartridge. I tried to turn off Bluetooth, turn off phone, tried to give myself the one unit through buttobn(unsuccessful), and I do not have Libre data. I’m so upset! I can’t figure out what to do and I’m on a road trip(of course! Sh$# like this always seems to happen when I’m traveling.

I absolutely love the Twiist pump…especially the algorithm. I was fine dealing with the infusion sets. Not my favorite but they adhered well, so didn’t care much. But I absolutely cannot deal with the Libre any longer. It always reads so much lower than the G7 and finger sticks. I’m constantly getting critical lows when I’m actually in the 90s.
I will be back the second they announce that the pump works with Dexcom.
(I have zero desire to have a CGM that’s implanted.)

I’m used to having a screen on my pump that I can check my BG at night and have been looking into a sugar pixel. Does anyone else use one? Have you liked it? Was there any problems setting it up?

Hi all!

I’ve had two successful pregnancies with T1D, with my lowest A1c being 5.4 at 8mo with my 2nd. It was a lot of work and something I’d love to do on a regular basis. With my 1st I work a Tslim, with my 2nd I wore Tandem Mobi, which I’m still on now.

Now 18mo pp with my second, starting to consider baby #3, and discussing options with my Endo. The main issue I have with my current pump is that it seems to get pulled on really frequently due to little hands and feet on me at all times 😆 I’m constantly changing sites because of this! My a1c is 7, which isn’t the worst but isn’t the best.

My endo gave me a few things to think about:

1. Do my best with tandem mobi and make to fall/winter (the pulling isn’t as much of an issue then!). I do like my Mobi, but I’m limited in sites with the short tubing because my abdomen and thigh are really the only planes that seem to do well.

2. Try out the Omnipod 5 this summer and see if tubeless helps. I’ve never used an Omnipod (was a Medtronic user for 15+ years prior to switching to tandem) but I’m open to the idea. I’ve heard mixed reviews on issues with leaking and find it hard to believe that it’s comfortable to wear/actually stays on. The 100bg target that’s coming is appealing to me.

3. Switch to Twiist. I had seen a few ads for this, and didn’t know much about it! But the option to target as low as 87 sounds amazing to me. She seemed to think it would be the best option when pregnant, so I’m thinking why not now?? Main hesitancy is going back to a longer tube and switching from Dexcom to Libre. Has anyone else made the switch?

Would love thoughts on all of these things. What do you have and love?

After all of my reading Twiist seems most appealing, but I’m also worried that it could be too good to be true. TYIA!

I never really use the pumps button. But I had the thought what if you could use it to resume insulin after it had been suspended. So then when you get out of the shower or a pool. You connect it back up to your Cleo site and press the button to resume rather than having to then handle your phone unlock etc.

Sequel feel free to steal this :)

I always gave a unit on Omnipod with pump change. Guess this is the same? Do you go high when you change your cassette?

Just got out of training, was told the insight app is for followers to receive updates. My partner has wigits but my app doesn’t? Isn’t that backwards?

Do I have I have two accounts and both apps in order to have my BG on my phone screen?? Surely I’m incorrect?

I've been on the twiist for about 3 months. I've had a mixed experience, but I'm at least temporarily going back to my tandem mobi.

Unfortunately I just cannot use the Libre 3+ sensors (and I'm not interested in getting the eversense at this time). I've had serious accuracy issues with the Libres, as well as shortened sensor lifespans, however the deal breaker is the serious allergic reaction that I have to the adhesive. I have tried various skin barriers. Using Flonase under the sensor does work fairly well, but when I put on enough for it to be effective, the sensor does not stick well. That means I have to use additional overpatches and adhesives, and it's become an untenable multi step process.

Anyway, I was wondering if anyone knows if there is anything special that I have to do when turning off the pump or putting it into "storage mode"... other than the obvious taking out the battery.

Thanks.

Hi all,

I recently cracked me iPhone phone screen and am going to be getting it fixed. What should I do? Should I just do manual injections if it’s a day? I also have a back up iPhone for this kind of thing but I’m new to twiist. Can I just download the app and connect a new cassette to the other phone?

Any help or advice would be greatly appreciated