Frustration with CIQ and inaccuracies in CGM

Coping & Emotional Support
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I am having a real love-hate relationship with Control IQ recently. I mostly want to vent and just see if anyone else has these issues. My biggest frustration has been issuing correction boluses when I don’t need them!! I hate looking down and seeing that I’ve been given a bolus when I wasn’t wanting one or needed one. I know part of this is on the accuracy of the dexcom - because the times it’s tried to give me one and I was able to stop it was because the dexcom g6 told it I was going up and in reality I wasn’t. (I wasn’t at Tandem’s ideal number, but I wasn’t going to go above 180)

It just happened again today about 20 minutes ago. Of course now I had to stop insulin because I already know I’ll be headed for a low if I don’t do something besides that and eat. I so wish I could have an alarm on CIQ as an option at least so I could check it and fix the issue if I don’t need the correction at the time. I don’t get pump alerts too often so the extra noise wouldn’t bother me like I saw someone else comment once (“you’d want another alarm? why??”)

Now I’m watching my sugar drop while eating a few snacks, angry and sad about the whole situation. I’m still new to pumping, not even a year in, and I’m already so annoyed with it most of the time that some days I just want to rip it off and go back to injections. Most days anymore I just want to cry because things aren’t working out. I try something different and it sends me high, so I go back and I try something else and I go low. I can’t seem to win and I feel like I can’t do anything anymore as if I’m an invalid, confined to the house because every time I leave things go haywire.

I know I’m not the only person who struggles with these feelings, I just don’t have anyone to talk to about them because I only “know” two type 1s in real life. (and I barely know them)

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Lauren @xgoingdownx, I can only hope that your good times will out-number the times that [diabetes] things go haywire.

As you may know, “the devices” are not suitable for everyone, and especially the automated programs like CIQ cannot properly manage all of us - they are aimed to match majority or average. Perhaps you may be better off and have more success with MDI. I know a practicing endocrinologist who has lived with his own diabetes for 55 years who gave-up on the pump thing several years ago because he believes micro-MDI works better for his body.

That said, CIQ works well for me and I have practically, but not fully, eliminated the over-correction issue by effectively managing ISF settings, and my TIR has remained higher than 90% even during extended antibiotic usage for infection.

I do understand a need to vent - believe me, during my years trying to “learn” this diabetes garbage I’ve just wanted to throw in the towel many times. Thankfully my wife of many decades has reminded me that I’m trying to manage, learn from what is happening and experiment with something different.

Keep venting Lauren as much as you need and, more importantly, don’t be afraid to change things up a bit until improvement sneaks in.

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Thanks! Over the years (though it hasn’t been many for me) it’s been more good than bad. 2022 through this year have been rough, though. I went to pumping because MDI had me on a horrible rollercoaster that left me feeling like it would be a better option (& it has mostly, the technology is just really frustrating for me some days).

I just wish it wouldn’t over-react so quickly. I was in the 150s when it delivered the bolus which is what frustrated me most. Lately my sensors have had the bad habit of saying I’m trending upwards either slightly or quickly & the next second my blood sugar only goes up 1 point & it’s back to the straight line. This is one thing that I think tricks the pump into thinking I need insulin when I know that things will calm down on their own soon. My TIR is usually in the 80s-90s so I can’t complain too much there.

Thanks for always listening and sharing your experiences!

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I do understand your feelings. I was diagnosed T1 less than a year ago and been using Dexcom and Omnipod since October. The highs and lows are so frustrating. Last night I kept bolusing for a “snack” and numbers kept rising quickly. I had given 10 units when I quit. I took off the pod and found it was leaking. Now I had no real idea my insulin on board but had to do something to correct. It was bedtime too😩
I just read the book “Think Like a Pancreas” by Gary Schneider. I do recommend it.
I too have no one to vent to. Non Type1s try to help by giving solutions- but they have no idea.
Hang in there. We can do this. I recently joined this forum and feel the support
Take care and try to celebrate those good days

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Oof, those pod leaks are one reason I chose the tslim. I’ve been meaning to read that book but our library doesn’t have it yet (I see now they’re adding it to their ebooks!). And I know plenty of Type 2s but it really isn’t the same monster (as much as I appreciate their input as well).
I hope your pod issues don’t continue too much and that you also take care!

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Hi @xgoingdownx . An option between using CIQ and going back on injections, would be to continue to use Dexcom for your numbers but turn CIQ offf and bolus/adjust insulin manually as needed.
With that in mind I’m curious how you knew you were not rising when your Tandem said you were - not to doubt what you’re saying but sometimes those details can help. CGM numbers can run 15 minutes or so behind fingers ticks, so you may have been rising earlier and the devices were catching up. That may not be very reassuring but in spite of that it is not a deal-breaker for many users. That said, sometimes a particular CGM is not compatible with someone’s body - I hope that’s not the case for you.
BTW, insulin needs change now and then - have you checked your basal rate and carb ratios, and revised your background settings? Sometimes small changes can make a big difference. I suggest you work with your doctor to learn how to adjust until you are comfortable and confident doing it on your own.

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I’m turning CIQ off more often now, honestly. I need it for sleep and sometimes when I’m out but a lot of the time at home I end up turning it off - just in this instance I happened to leave it on.

I’ve used a CGM for a while now (used Libre & Libre 2 previously) so I know they tend to run behind but this isn’t the first time that the rising / rising rapidly thing has happened and the next second it wasn’t at all. (and most of the time that isn’t a problem, just when the pump sees that it takes it as a need for insulin and I don’t always agree at least until the next reading) Just yesterday it happened - I had the completely upward arrow and the next reading was 1 point higher and not rising at all. I also know there was no way I was rising rapidly today was because of the circumstances - I had a small snack of some meat beforehand and hadn’t otherwise eaten in hours. I tend to trust the arrows if I’ve just had a meal but not something like some lunch meat. Over the past few sensors I’ve come to distrust that arrow on occasion. (There was another time I rapidly fell and it said I was stable the whole time) For the most part I like the g6, but there are definitely times when I feel like I can’t trust it.

My last appointment with my doctor we discussed changes and we changed my basal rate and I’ve since brought it slightly down again. She told me she wanted me to play around with it myself. I’ve made small changes here and there and if they work I keep it, if they don’t I go back to square one.

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Thank you for the quick update. It sounds like you know what your doing. The only other things that come to mind are

  1. My Dexcom is more “sensitive” when placed on my thigh than on my arm or abdomen. Have you noticed any correlation with where you place it? And
  2. I think I’ve occasionally firm some unexpected arrows when I was separated from my receiver for a while. It doesn’t happen often but if I take a long bath and am out of range I think the arrows are there while it’s trying to catch back up.
    Sorry - I can’t help brainstorming!
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I’ve only ever used my arm simply because of how I sleep & I knew if I put it anywhere else those pressure lows would happen (they still do sometimes even there :weary:) I’d try another location but with how insurance is this year in reordering I try not to push my luck in case it fails.

I’m hardly separated from my phone & almost never from my pump, which as far as I’m aware is what acts as my receiver since I didn’t get one of those. That could be the issue, though? The pump sometimes loses connection to my phone app so it could momentarily lose connection to the g6 at the same time but I’m not sure.

I don’t mind brainstorming! It’s often why I lurk here or other sites to see what others are going through & if it’s anything similar to my experience.

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Like @wadawabbit suggested, I turned CIQ off a few months ago because of the same issues. It’s not an all or nothing deal, a tandem pump is still an awesome pump with or without CIQ on. I’ve been using my CGM data for dosing decisions (once it’s proven itself to be within 20 mg/dl 3 times in a row) and I’ve gotten my basal rates pretty nailed down and learned how to use temp rates. I’ve got a pretty good TIR considering the fact that I’m a teenager. Many of my highs are hormonal and just go up and come back down without any interference on my part. A lot of the stress and annoyance is gone now that CIQ isn’t trying to minute by minute make things better and accidentally messing it up. But I’m also pretty aware of my BG and how it affects my day-to-day functioning so that makes a little extra BG monitoring that I wouldn’t have to do if CIQ worked for me motivating.

Like you, Lauren @xgoingdownx, I don’t know anyone else in person with a tandem who doesn’t use CIQ. For many people it works, for some of us lucky ones it doesn’t :confused:

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One more thing (my ideas come in fits and spurts) - and I know it’s dramatic - consider giving Omnipod5 a try. I switched from Tandem to Omnipod and all I can say is its algorithm works better for me. There is no commitment with Omnipod so if you don’t like it you can return to Tandem. Of course Omnipod5 works with Dexcom too so if you’re not convinced Dexcom is accurate that won’t help. But you said

this isn’t the first time that the rising / rising rapidly thing has happened and the next second it wasn’t at all. (and most of the time that isn’t a problem, just when the pump sees that it takes it as a need for insulin and I don’t always agree at least until the next reading)

As you know, CGMs take readings every 5 minutes and you were probably instructed not to obsess over them - when first starting on one it’s easy to constantly watch and start to panic when you see :arrow_up: and :arrow_down: - and adjust on your own right away if you’re not using a closed loop system. Instead, watch and wait, and trust your pump to do its thing; and if “its thing” is not correct some programming changes may be in order.
So I wonder if you’re being too interactive? That micro adjustment you see may adjust itself when the arrows flatten out again.
Just another brainstorming thought: of course you know your own body. I did find that my corrections were only as good as my background settings.

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Venting is totally understandable. These are the types of things are so frustrating!
I have found that myself, and my son need to have correction factor adjustments during different times of the day. Depending on how you feel about self adjusting, I would suggest making the correction factor less aggressive, esp if there is a trend for the time of day that you drop. If you dont feel comfortable, ask your doc or the tandem rep on how to do it.
Hang in there…this stuff is hard.

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My 9 year old daughter started using control iq at the beginning of the school year. It has been a huge godsend. However, for her safety I had to raise the correction factor to 1:130, (her usual was 1:100)higher than it needs to be so if it corrects her it doesn’t overcorrect as easily. There are also times that we turn control iq off so I can give her carbs so she can exercise and not go low, or if she’ll be walking or exercising for a while, we just turn her insulin all off and keep feeding her carbs. That’s how we go shopping safely😊. It’s a great tool if you can figure out how to finagle it to work well for you!

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@6yGodsGr I switch between it being on and off - it really depends on what I’m doing. If I left it off all the time I’d have hypos since I nearly get them just walking to grocery shop with exercise mode on. I’m almost certain I’d get them overnight, too since it almost always lowers my insulin at some point for most of the night. I’d say my basal is too high but the times I’ve tried lowering it, it makes me stay in the 150-160 range. I can’t feel highs and lows too well anymore until they’re really bad so you’re lucky you can tell right now.

@wadawabbit I chose Tandem because Omnipod had too many negatives for me, personally. I get why people like it, I just didn’t think it would be a good fit for me. I don’t know that my insurance would let me try another pump until these 4 years are up, either, since our insurance is pretty bad. (they don’t even cover cgms, they give “discounts” and Dexcom costs us $377/month with an extra $250 or so for the transmitter - I don’t even know if they covered my pump. thankfully my parents paid for it)
I could be too interactive, I know I am at times, but like I told my doctor, it’s the times I’m not watching that it does something and then 30 minutes later I’m watching myself head for a low.

@T1Dx2 & @Juliet09 I adjusted my correction factor to be a lot higher than what my doctor had me at. I tried doing the math myself one day when I had a high that I decided to correct manually & it was a loooot less insulin than CIQ would have given me. I’m not the kind of person who wants their glucose to go down “fast”, it makes me panic and seeing extra insulin on board when I’m still dropping consistently just makes the panic worse. I’d rather give a smaller dose and do some activity to bring it down than give a larger bolus. I know not everyone operates that way, (as my doctor doesn’t see an issue in those drops like I do) but the times I’ve had trending arrows they never just “stop” before I hit 60-70 & I’m still left with insulin on board for another few hours.

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A theme I noticed in this thread is, “do less-aggressive corrections.” This is something it’s taken me a long time to learn. I’ve been burned so many times “correcting” for a high that soon either went down on its own or didn’t need nearly as much insulin as I gave it. Correcting without any fast-acting insulin/Humalog on board (e.g. in the morning after waking up) is one thing. Correcting after a meal when it’s frequently the case that carbs have just outrun the insulin time-wise for a bit, and the insulin will catch up, or you’re exercising/being active, is another thing altogether. At least for me, that’s what I’ve found I’ve really needed to improve on. And when I’m more judicious in doling out corrections, things go way better (though hardly ever perfect).

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@BKN480 Oh I’m not the one giving the corrections, the pump is doing it. I almost never gave correction boluses when I was on MDI, either. The one time I did I learned my lesson.

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Hi, Sorry your going through this. My Son is 9 and has a tandem tslim for 1 yr now. I frequently have to turn off control Iq if we are going on a hike for example or if hes having someone high in carbs. Bc he will go high then he will go low i’ll gove him a snack for the low. I look and he’ll be double arrows up getting a correction. If I turn off the IQ he wont get a correction and the basal rate will continue to run, and he won’t turn yellow meaning the pump is running a lower basal rate bc he just had a low. If you turn off IQ the rate is what you set it at and the double arrow will level. Instead of giving a correction. With the excercise i turn it off bc if he goes low from a hike or a walk and i give a snack i don’t want the IQ giving him a correction bc we’re excercises and he would just go low again. It trial and error and seeing what works. You’ll get it. I just wish these Algorithms we’re better. Good luck and God bless!!!

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I hope I m not repeating something already mentioned but what I have done is keep in Sleep Mode when I don’t want that to happen. I know exactly what you mean, too. It’s very frustrating that we can’t have Basil IQ without Control IQ. I like the feature that slows down delivery when needed. And I hate it when my pump gives unasked for bolus’. So I found that using sleep mode works for me. But just keep in mind that it also keeps tighter range, so as you probably know already it increases the Basil Rate if you go high.

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@xgoingdownx , this post is just showing up. There are several things that are JUMPING out about your post.

[1] who did you training on the CIQ & Dexcom? Reason, comments like “issuing correction boluses when I don’t need them!! I hate looking down and seeing that I’ve been given a bolus when I wasn’t wanting one or needed one.” indicates you were not sufficiently taught about the 60% auto mini correction boluses and how the algorithm uses the CGM data to calculate the delivery of the bolus.

[2] The Dexcom is currently the most accurate CGM on the market. Just this month I had general anesthesia. My anesthesiologist and anesthetist worked with me in the week before anesthesia. On procedure day, my Dexcom G6 and finger stick were EQUAL. A lab glucose was 5 mg/dL different compared to the Dexcom G6 when the blood was drawn. CONCLUSION: your preparation was inadequate for the system. There are two issues integral to using the CIQ + G6 effectively. They are TRUST & PATIENCE.

[3] Your post includes, “Of course now I had to stop insulin because I already know I’ll be headed for a low if I don’t do something besides that and eat. I so wish I could have an alarm on CIQ as an option at least so I could check it and fix the issue if I don’t need the correction at the time. I don’t get pump alerts too often so the extra noise wouldn’t bother me like I saw someone else comment once (“you’d want another alarm? why??”)” SUGGESTION: There is a system called “ALARM LADDERING” which uses the alarms of the pump and the CGM, set differently, working in concert to allow you to have advance notice of your glucose movement toward high or low.

[4] Your comment, “Now I’m watching my sugar drop while eating a few snacks, angry and sad about the whole situation. I’m still new to pumping, not even a year in, and I’m already so annoyed with it most of the time that some days I just want to rip it off and go back to injections. Most days anymore I just want to cry because things aren’t working out. I try something different and it sends me high, so I go back and I try something else and I go low. I can’t seem to win and I feel like I can’t do anything anymore as if I’m an invalid, confined to the house because every time I leave things go haywire.” shows mountains of stress that wreak of inadequate preparation.
COMMENT: [A] the mouth to finger stick time is 15-25 minutes, while the mouth to CGM time is more like 30-40 minutes. Meaning you can’t expect to eat to cover a low and see it show up in your CGM in the same time interval as what is seen with a finger stick. [B] How are you adjusting for the CIQ’s withholding insulin when you are going LOW? How low is low for you? CIQ uses 110 mg/dl as a floor to slow insulin and 70 mg/dL as a hard floor. Specifically, if CIQ data analysis predicts you will cross below 70, CIQ will STOP insulin to allow you to start back up. How has this been working for you?

[5] You have tools to help you and your “anyone to talk to about them” with your struggles. Some of the tools are: [a] Tandem’s tConnect both on a phone & web based, [b] Dexcom’s G6 app, [c] Dexcom’s Clarity app, website, & weekly reporting, [d] Glooko - a tConnect like web based data analysis site, and [e] SugarMate, a Tandem owned data integrator and alerting package.

Message me and I will be honored to help. Your post reads like a person in a life boat with no survival skills. I am an almost 25 year Dexcom CGM and pump user. I have been on CIQ for just less than 4 years.

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@987jaj do you have any links regarding alarm laddering? Thanks!