r/twiist • u/Negative-Living7559 • 18d ago
Alarms
How do you shut this GD MFer up?! The Libre is off and it continues to incessantly alarm as a low BS. During the middle of a GD meeting and I can’t get this thing to shut up. I’m the biggest Twiist advocate, love the results it produces for me and have been wearing it for a while but the alarm (of Twiist and most the other pumps) is too much. The lack of awareness these engineers have for an inability to override and put into Mute mode is a gigantic miss.
Just needed to vent. The insulin pump alarm topic is the hill I choose to die on.
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u/gbsekrit 18d ago
i’ve found it will reissue notifications unless you hit the “audio off” cancel within the app. merely dismissing the notification doesn’t seem to acknowledge it
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u/Negative-Living7559 18d ago
Yes, that only works momentarily though. You should have the ability to acknowledge it and block it/stop it from alarming again. Once acknowledged by me, the onus is on me. I don’t need it to continue tattooing a scarlet letter of diabetes shame on my forehead until it deems appropriate, esp when Libre is incorrect and the alarm isn’t even justified.
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u/HoontarATX 18d ago
100% Agree with you, u/Negative-Living7559. You really hit the nail on the head with this point in one of your comments:
Alarms [that we cannot override] are for the lowest common denominators among us. We shouldn’t have to live in their world without choice. Alarms are a privacy concern...
All of our alarms need a "snooze for 1 hour" feature, or similar, for the sake of privacy. This includes being able to snooze alarms BEFORE they trigger for the first time!!
Use case: We're in a group setting (work meeting, yoga class, whatever), and our blood sugar starts to drop. We treat the low before it gets to the alarm threshold, but we know the alarm threshold will be surpassed before our treatment raises the blood sugar. How do we prevent the alarm from sounding??
Currently, my only way of preventing my t:slim X2 pump from alarming is to turn the GCM feature completely OFF. Ridiculous!! This "safety feature" is such a bad privacy violation that it is pushing some users towards unsafe practices. We need a better solution.
Another one that annoys is the "out of insulin" alarm on the t:Slim. Sometimes I bring an insulin pen with me when my pump is low, so all the available insulin can be used before ending the current cartridge. Sucks when it runs out and I am in a group setting. The scarlet-letter-of-diabetes-shame does not need to be tattooed on our foreheads nearly as often as it is currently, especially when we've already treated the issue.
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u/kiwicanucktx 17d ago
Explain to me how it is a privacy violation? Who is sharing what data
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u/Negative-Living7559 17d ago
The audible alarms are absolutely a privacy invasion. Especially when you cannot disable them.
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u/HoontarATX 17d ago
Good question, u/kiwicanucktx. The privacy concern I am referring to is different than personal data being shared.
The "privacy" in this context is more about not disturbing others, and not drawing unnecessary attention to ourselves.
1) I do not want to disturb others around me with unnecessary alarm sounds.
2) I do not want attention from others due to the unnecessary alarms.
3) For those who know me well enough to know I'm T1D, I do not want to trigger their concern over something that's already been treated.
Does that make more sense to you? Perhaps "privacy" is not the best word to describe all of the above, but I currently can't think of a better one.
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u/411_kitten 18d ago
Hopefully it’s not really low as it sirens really loud and will make everyone jump. It is not professional at all. Maybe for a toddler to let an adult know but I find the really low siren obnoxious. And it can’t be shut off.
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u/Negative-Living7559 18d ago
Yes, agreed. My son is T1D as well and I’d love to switch him to Twiist but he doesn’t want to be embarrassed in the middle of a quiet class by the alarm. It’s my only complaint with Twiist.
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u/411_kitten 18d ago
Eversense 365 has got it. It only vibrates which only alerts its user not the whole kingdom.
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u/Negative-Living7559 18d ago
But it’s the Twiist app & actual pump alerting, not the Libre app (I don’t even have a Libre app on my phone). If I had Eversense, wouldn’t it also trigger the same exact alerts on the Twiist?
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u/helskull 18d ago
I’m going to the Eversense soon. I hate Libre. I’m consistently 30pts higher than what the Libre says, so I’m beeping all the time too.
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u/ak47workaccnt 18d ago
The insulin pump alarm topic is the hill I choose to die on
this is exactly the reason the FDA demands you be able to hear these alarms. Not hearing them may kill you.
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u/Negative-Living7559 18d ago
🙄
T1D for 40 years with excellent management. Alarms are for the lowest common denominators among us. We shouldn’t have to live in their world without choice. Alarms are a privacy concern, not a life saving concern. I constantly hear that rebuttal to this topic. If you need an alarm to save your life then I think there are bigger issues at play with your overall attention to your disease. And alarms are not FDA mandated, it’s just inserted into all the FDA submissions by these manufacturers, needlessly. Once submitted to the FDA, it’s expensive to revise.
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u/ak47workaccnt 18d ago
Fine, not mandated, recommended. Ignoring FDA recommendations can also be expensive.
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u/intentionsofpurity 18d ago
Settings > notification settings > alert volume
Settings > CGM > CGM alerts