Looking for T1D Teens

hello! my name’s jordyn, i’m 16 and i was diagnosed with t1 last june. it’s been really rough for me. i manage everything on my own and have trouble talking to others when i need help. i struggle so much with feeling alone. nobody around me truly understands what i have to go through. does anybody have any tips? i also had a question. does anybody struggle with their chums being inaccurate? at least the past 5 that i’ve worn have had really inaccurate numbers, specifically the last 2-3 days of wearing them. could it just be a transmitter issue?

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Hi @jordynpb and welcome to the forum. If you click the Resources tab at the top of the page, and enter your location, you might find events and activities in your area. Or clicj this link Find Local Chapter for Type 1 Diabetes Support to find a local JDRF chapter best you.
There are also summer camps for kids with Type1 - most top out between 15 and 17 years of age. Hopefully you will be getting responses from teens soon!

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thank you for your reply! i’ll check out the link. and i have gone to summer camp and their other day camps they provide for family/ teen retreats, but going to the actual summer camp this summer!

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Hi jordyn, my name is Lise. I’m 17 and was diagnosed 4 years ago. I also mostly self manage, my parents are always ready to step in and help me if I ask but I’m not sure if they even know how to bolus for insulin on my pump haha. Maybe I should fix that! :stuck_out_tongue_winking_eye:
T1D is rough! The first year is whiplash- as you find a system and figure out a “new normal” it gets better. Hang in there :slight_smile:

Yes, I’ve definitely had issues with my cgms being accurate. I’ve got a love hate relationship with most of my devices- so annoying when they don’t work!

There are several reasons your sensor could be acting up- sometimes you got a bad lemon, but most often it’s because of other reasons (I’ve linked an article) https://diatribe.org/cgm-tips-and-tricks-better-accuracy-and-less-frustration

I once had a bad transmitter and you’ll know it’s the transmitter when you have several cgms in a row that just don’t work.
You could try putting a new CGM on and reporting it. If you’re on dexcom, there’s a form you can fill out in the app and they’ll send you a replacement (take advantage of these replacements! They can be so helpful!)

thank you lise!! i also read up a little and i saw that you’re currently on the tslim. have you ever considered making the switch to the mobi? i’m currently on the omnipod 5 and have been experiencing a lot of burnout and general problems that i’ve had with it. i’m just not sure about the algorithm differences between the omnipod and the tandem. i’ve watched videos and read, but tbh ey still seem very similar to me lol.

Hi @jordynpb . I use Omnipod5 as well and just wanted to suggest - if you’re living in auto mode and you don’t like the algorithm you can always switch to manual. There will probably be more work involved but you’ll have more control. Sometimes I forget to turn off manual mode and find it works better for me!

Yes I have the tslim! I would LOVE to switch to the mobi but unfortunately my family just moved overseas and the mobi isn’t available in the EU and probably won’t be for a while. The omnipod 5 hasn’t even been rolled out yet.

I’ve also done research into omnipod because I got frustrated with tandem’s algorithm. They seem pretty similar to me too but the key differences are that tandem lets you have more control over your settings and of course how insulin is calculated- tandem relies on basal rates that you input, while omnipod comes up with its own settings based on patterns it finds in your readings while in auto mode. But I think the tandem is a great pump (very unbiased opinion there :stuck_out_tongue_winking_eye:)

I find the tslim control iq frustrating because of how it boluses for highs, sometimes it’s far too aggressive and sometimes it’s not nearly aggressive enough. Take what I just said with a cup of salt. This is coming from a gal who is highly motivated to get good numbers and loves to have control. I know lots of people LOVE the tslim and it’s super helpful. It just drives me nuts.
I had to get a new tslim pump when I moved and I’m currently using basal iq, which is in theory (not in practicality) available in the USA. It only cuts off insulin when I’m low and I’m far happier with that. I adjust my basal rates myself when needed and find that that works really well for me. Like @waddawabbit said, you could try switching to manual mode and seeing if that helps. If not you should keep researching other options- if the tool that’s supposed to help you is just making things worse, then you might need a new tool.

maybe I will try manual mode. one of my main problems is that I don’t think the correction doses are aggressive enough when it comes to my high blood sugars. it seems like they stay high for a long time, and then once they finally get down in range, i go low haha. i guess i could fix that by manually calculating the correction dose myself, but i actually like the fact that the calculations are always done for me. now i don’t always use the adjusted bolus calculations, but that just depends on the situation. btw thanks for explaining the main differences between the two algorithms!! i also strive for better numbers; sometimes i feel nothing when i’m high/low, and other times i feel horrible. i hope that staying more in range can help feel them better lol. that sounds horrible, but it’s honestly really scary for me when the dexcom is inaccurate only for me to prick and find out i’m really low.
you also mentioned how you adjust your basal rates whenever you feel like, when exactly do you do that? do you just adjust them when you feel sick, period, etc. or just when you start to realize a pattern of whack blood sugars? i’m just trying to learn a lot about my other options because i did research and thought the omnipod would be the best option for me, and it was for a time, but now i’m super frustrated with it. i’m trying not to be impulsive with the switch and end up in the same situation i’m currently in :sweat_smile: hopefully, if i end up truly wanting to switch, then i could possibly do a small trial with the new pump. btw how do you feel about your move to Europe? is managing or being open about your diabetes an different there compared to the US? also you said you were 17 so i believe colege is coming up for you!! how exciting!! do you plan on going to college in Europe or the US? hopefully that’s not a personal or invasive question!

Yeah I find it really freaky when the dex doesn’t pick up my highs/lows, especially the part that a computer that doesn’t know any better is adjusting my insulin based on faulty data.

I adjust my basals by +/- .1 unit when I spot patterns that have persisted for multiple days. I’ll also adjust for periods or when I’m sick, or if I’m going to go on a hike or be more active one day. Like many others on the forum, I really benefitted from reading “thinking like a pancreas “ by Gary Scheiner, he’s written a lot on how to make adjustments that go beyond just changing insulin rates- sometimes the issue is something else, like that you’re counting carbs incorrectly.

I believe that you can do trials with a lot of pump companies. But you’d have to research that :slight_smile:

US vs Europe- I think another thread got started about that so you could look for that. The biggest difference is that most of Europe uses a different unit for measuring A1cs and blood sugar levels. All of a sudden 5.5 is great and 3.9 is low! Otherwise my care team looks pretty similar (endo/nurses/nutritionist/etc) and I was able to stick with my same tandem/dexcom g6 system which was nice.
Not sure where I’m gonna go to college yet :slight_smile:

i would definitely do a trial if considering switching pumps! and that’s great, it would really suck having to switch from devices you’ve grown so used to having. good luck with figuring out college!!

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How’s adjusting to going to school with T1D been for you?