I probably write about Control IQ more often than I should. Some people with Tandem pumps love it and others hate it. I never love it but I often appreciate the benefits of a computer algorithm helping me out with my diabetes. Unfortunately I sometimes think that Control IQ sabotages my D-efforts more than it helps me. In general I am frustrated with the Tandem algorithm because I want different ranges and averages than the software targets. Instead of making my diabetes easier, Control IQ often just gives me another indecipherable variable in figuring out the beast that is my diabetes.
After many marathon negotiations with the Control IQ gods, I have reached a compromise where I turn Control IQ off during the day and rely on it overnight. Fortunately Tandem makes it easy to turn Control IQ on and off. The only glitch is that if you use Sleep Mode, you have to turn it back on when you resume Control IQ. Sleep will not restart automatically even if you have a schedule.
I use Control IQ during the night because it is extremely effective in preventing lows. I am willing to be responsible for monitoring lows in the daytime but have accepted that somewhat higher numbers during the night keep me safer although I chafe at some of those numbers. Remember that my endo says I am old enough that I don’t need to worry about complications 20 years from now….
I have used Control IQ for over a year and a half. I have accepted an average BG between 112 and 120. What I can’t deal with is Control IQ suspending my insulin when my BG is flatlined at 100. I am amazed watching my BG tracings throughout the day without Control IQ. I can flatline for hours at a time with minor up-and-down waves. But add Control IQ to the mix and I have insulin suspensions as my BG drops below 110. The pump screams that I will drop below 70 but without Control IQ it usually stabilizes in the 80’s or 90’s. Then future highs from those suspensions are another unknown as I navigate my next meal or my next couple hours of D-existence. Ups and downs and more ups and downs.
Many Control IQ gurus would claim that I just have bad pump settings.
Maybe. Probably. But maybe not.
I have tried. I have tried and tried. And tried….to get agile and effective settings that worked yesterday, will work today, and will be great tomorrow. I have not succeeded.
I have fiddled with my settings more times than I can count. I always come back to the idea that my diabetes philosophy is just at odds with an algorithm that is good at improving the numbers of the “average” population of people with Type 1 but not able to keep up with all of the variables of my diabetes. As a senior my skin and tissue are not as durable as they were in my younger days. Although I change my infusion sets every two days, I can still have a big difference in day-to-day absorption of insulin. I dutifully take the daily aspirin mandated by my internist and sometimes get bruising and bleeding that interfere with insulin. I am better at changing my pump cartridges more often than I used to but still have discernible (but not predictable) differences in insulin action from Day 1 to 4. Heaven only knows how to quantify the variance in what I eat and drink from day to day and how my body reacts.
This stuff is complicated.
I am lucky to have 7 (!) grandchildren and some of my favorite books are the Elephant and Piggie books by Mo Willems. Gerald’s frustration (“Elephants Cannot Dance!“) at not being able to dance is a good reflection of my journey with Control IQ. He is an elephant and elephants just cannot dance. I have type 1 diabetes and I just cannot be as perfect as I would like with Control IQ.
Although Gerald thinks that he has failed when it comes to dancing, the squirrels and Piggie end up begging him to teach them “The Elephant.” Maybe my journey doesn’t have a bad ending as Gerald ends his dancing book exclaiming “Keep trying! You are getting it!”
Some days I am grumpy about my diabetes software and hardware. But I really have no choice except to….
And that is what I do.
Another great post and also saddens me to hear that your CIQ travails continue.
On the flip side … I am in serious “like” (almost love) with my X2 and CIQ. But I’ve only been using that combination since January-2021. However having worn pumps for 27 years and CGMs for 8 years my X2 and G6 combination are the best I’ve ever had.
My biggest failing comes with not being patient enough to let CIQ do it’s job. I’ll tend to tweak an extra bolus from time to time, but every time I do that I’m reminded that I should have left CIQ along to do its job.
I’ve “sort of” figured out the exercise option and use that when I’m off to the neighbor health club to work out 4-5 days each week. It is also working well for me.
I’ve had a couple wonky sensors and that just seems to ‘happen’ now and again. Getting a replacement sensor that goes ‘toes up’ before 10-days is simple as can be with Tandem. A few keystrokes on a form at the Tandem site and a few days later I get a replacement sensor. Much smoother than the laborious process that was (or may still be) in place with Dexcom.
Then there are those days that the BG just won’t come down and I have the AHA moment that the infusion set I just put in this morning just isn’t working well. Still happens now and then … UGH!
As noted I still am anxious to tweak my X2, but it does so much better when I just let CIQ do what it is trying to do.
Great to read another wonderful post and hope y’all are doing well and staying safe.
I like the idea of letting Control IQ do it’s job. But the long insulin suspensions totally sabotage my patience and ability to let the algorithm stabilize things. I am very impatient but I am also a victim of insulin that just doesn’t work fast enough. I think my Control IQ travails continue because I want it to be better than it is….
I find I do over half of the control when with eh Medtronic 770g. I told some company representatives the other day, I have been doing this for a long time, and my pump has been doing it for four years. Would I trust a 4-year-old to drive a semi-truck? No, of course not. But I might let it drive a pedal car. I mean, I likely could not fit in it anyway.
Thanks Laddie. Yes, what CIQ has to offer is “just good enough” for many. I totally feel your frustration with having long insulin suspensions. I set my range from 80-140 and usually average around 120. I use Fiasp insulin in a Frio pump wallet and I like it. My food plan is low carb, higher protein and fat. This food plan has been very helpful in managing my eating disorder and for that I’m very thankful. Dealing with an eating disorder and T1 x’s 57 yrs is quite the balancing act. I am working with perfecting extended boluses to accommodate slower metabolizing protein, with hopes of even better averages. My frustration is finding a provider that can support me. Apparently my clinic’s goal is to devote the most time to people that want to manage their disease “just good enough”. I hope to be working with a provider with Integrated Diabetes Services by next week. I like Gerald’s ending “Keep trying, you’re getting it.” That all we can do. I’m thankful I’m in the “keep trying” camp.
Laddie: Great post! Although I don’t do Control IQ, I really share you frustrations with trying to maintain control. You express so well what we all go through every day. Thanks!
What we as T1s really need to do is stop accepting the inadequacy presented to us. We are replacing an organ that monitors minute fluctuations in BG 24/7 with a plethora of often unpredictable or novel variables. And we are expected to do this.
It’s not fair nor logical, and worse, many of us work mind blowing hard 24/7 for a lifetime to be “healthy” (yet drug addicts often live a better longer life than us). The rest gave up at the futility or were sick of the blame assigned to T1 patients by the failure of the medical community to offer us anything better. Some of us simply can’t afford to live, and I mean that literally. Still others are unfortunately not able to cognitively have the ability or time to replace a vital organ 24/7. We are always a shot or high or low away from death.
Doctors are useless to us unless they can offer us a cure. The next time your walk into your clinic instead of nervously waiting to be asked about your A1c (useless test for many T1s) why not proactively ask your doctor if they have a cure for you yet??
And keep asking for your cure EVERY time you see a physician. EVERY single T1. For ANY reason “diabetes” comes up. Become the Groundhog Day of diabetes. Because after 100 years we are pathetic to not demand better and sit here in shame with this (for some at least) brutal disease. DEMAND your cure. When a doctor orders the same lab work you have been getting for the past 20 years with no change, the same tests that really have not improved the quality of life for a T1 at all, ask them if a c peptide will be done and if there is an opportunity to get off insulin.
Every single patient needs to do this every single time. Or going to a dr for routine care is pointless, We let this cycle continue and no one to blame but ourselves and our inertia.
Make this post viral. I believe if we can supposedly come up with a COVID vaccine in months (granted with technology that was already in research for other diseases) we can cure T1. I used to believe autoimmunity was the red headed stepchild too complicated to be bothered with. Give them a placated lollipop or scold them away. To truth is probably somewhere in the middle. A cure is not around the corner but can be found, and now. So ask. EVERY T1. EVERY dr. EVERY time. Groundhog Day. Weekend at Bernie’s. Just keep coming back to the same question. Again and again.
Stop asking other patients and family to fund their own cure and start asking the doctor why you keep coming back to see them with no viable treatments.
Full disclosure: I have severe labile brittle T1 since infancy that destroys every day of my life despite my intense never failing routine to be healthy (which I otherwise damnwell am when not battling insane glucose swings). I started the Tandem pump w/IQ this year and it changed my life. I receive no compensation to state this. I cannot use the normal or exercise mode as I’m too brittle. But Sleep mode (no boluses) changed my life. I still have my usual WTF control days where I have to take off my pump as I’m low 24/7 etc. But overall my quality of life has improved. But an external pump with sub Q insulin and related variables is NOT a long term viable plan for an autoimmune disease.
I do NOT have MODY, neonatal diabetes, or any of the known variables you will ask of me, such as glucokinase deficiency or undiagnosed Addison’s Disease (I do have Celiac for the record and I’m strict as hell on my diet). Published studies (Joslin 50 Year Medalist) have shown long term T1s often do seem to still make insulin.
Big Pharma can spare us, their real money maker is obesity research, metabolic syndrome, and Type 2. Charge us for our cure and move on from T1. Close up shop. We are an Orphan Disease along with MODY etc in the sea of “diabetes” so let us finally have our Weekend at Bernie’s cure.
I also have some ideas kicking around to try (I do have a Science background) so if any researchers looking to publish want to try something novel please contact me via email).