I activated Control IQ on my Tandem X2 pump in late January. After two weeks I wrote a blogpost sharing my goals for the system:
“Unlike some seniors who are askance at letting a tech device control their insulin, I am excited. I need help. I want to sleep better. I want fewer alarms. I want BG graphs with rolling hills and valleys and fewer Himalayan peaks. I want my diabetes to be easier.”
A month later I wrote another post indicating that I mostly liked Control IQ because of the protection from low blood sugars. At the same time I shared that I was still struggling to dial in settings with my major problem being high blood sugars after long insulin suspensions.
“I think that one characteristic of “ideal” Control IQ settings is the avoidance of long suspensions of insulin. When I say “long”, I mean one hour or more. Unfortunately I see such suspensions almost every day. Whenever I go 1-2 hours without insulin, I always go high because I just can’t be without insulin that long. The problem is that these suspensions don’t happen at the same time or in the same circumstances each day.”
Over the next 6 months I changed pump settings more times than I can count. Stronger basals, weaker basals. Stronger insulin sensitivity factors, weaker sensitivity factors. Stronger carb ratios, weaker carb ratios. I had easily accepted that eliminating most low blood sugars would raise my average blood sugar and I was somewhat okay with that. I never considered turning off Control IQ, but I was frustrated that the system was not close to hands-off for me. My biggest problem continued to be highs after insulin suspensions and random sticky highs. BTW I was using Sleep Mode 24/7 and continue to do so.
In August I started problem-solving again. I found that when I weakened my pump settings, I got fewer suspensions of insulins but lots of stubborn highs. When I used settings that allowed me to achieve my target blood sugar levels, I had long insulin suspensions. I determined that although I really appreciate reductions in basal insulin by Control IQ, I cannot ever be 100% without insulin regardless of my blood sugar level.
I don’t need a lot of insulin but I always need some.
I have a long history of periodically using the untethered regimen (pump + part of basal injected) successfully. It made sense to me that having some insulin on board that Control IQ couldn’t adjust might help me achieve my goals. After a few days of experimenting with how much basal to inject, I settled on 30%. I began taking 4 units of Basaglar (Lantus equivalent) every evening and reduced my pump basal settings across the board by that amount. Assuming that the Basaglar absorbs evenly over 24 hours (it probably doesn’t), it provides me with 0.17 units of insulin per hour. Minuscule.
After 5 weeks I am amazed at how successful the untethered regimen has been. That little bit of constant insulin has really helped to reduce post-insulin suspension highs and other random BG excursions. Control IQ has power over enough of my basal insulin that it continues to protect me from most lows while helping me attack the highs. Both my average BG and standard deviation are lower. Time in range is higher. The differences in statistics aren’t huge but they are significant.
The additional work of injecting basal is minor and a phone alarm reminds me to take the evening injection. I keep the Basaglar pen in the refrigerator and use a syringe to withdraw insulin because I am more confident about the dose that way. I am not discarding pens after 30 days but will use them until they are empty or there is a noticeable decline in insulin potency. At 4 units per day, the added expense of a second insulin type is negligible.
I am sure that many of you will argue that I just need to get better pump settings. My experience is that the times of day and the cumulative time of suspended insulin vary greatly from day to day. Am I more active? Is it a new pump cartridge with fresh insulin? Is the infusion site less than optimal? What am I eating? And so on. IMO all of this indicates that “perfect” pump settings are a mirage although I continue to reduce some of my pump basal rates and tweak settings. Right now I am finding the addition of a small amount of injected basal insulin is helping Control IQ do its job better and allowing me to micromanage less. So it is a win in my book.
Is diabetes easy-peasy now? No, but it is easier. Are my numbers perfect? Not really, but they are more manageable. Will I stay with the untethered regimen forever? Probably not.
I am not saying that you should do what I do. We all have different targets and different diabetes. At the same time I encourage you to be creative as you try to optimize your Control IQ experience. Although we can customize many Control IQ settings, we are limited by the fixed behavior of other settings and the slow speed of insulin onset. Sometimes we just need to think outside the box to figure out ways to get the results that we want.
Just another reminder that our diabetes is a constant science experiment….
Thank you Laddie for your thoughtful commentary on “Going Untethered with Control IQ”. I always delight in what you have to share. I’ve been able to get CIQ to work for me in a reasonable fashion., meaning I can live with the TIR, hgba1c etc. I follow a low carb food plan, which has been a blessing and a curse @ the same time. Iv had an eating disorder since I was a teenager 50 yrs ago. The low carb food plan allows me to not be “triggered” by certain carbs. It isn’t the Bernstein plan, but what my dietician and I came up with.
I’m thrilled for you that uv found something that works, as Iv followed your CIQ experience from the beginning. thank you for your inspiration!!
Thanks for your comment and I always appreciate hearing from you, Elizabeth. I have to admit that I am constantly inspired by my fellow people with diabetes, especially those of you who have dealt with it for a long time. Keep up the good fight and continue to stay in touch.
Hi Laddie- I have been using control IQ for almost a year with pretty good success. Rare lows, and some spikes after meals. I have managed to stay in 90% TIR most weeks. I do not know what you mean by “suspensions”
Fouling mean when the basal is reduced because you BG is dropping? I don’t think mine ever stops basal completely.
Thanks for the info on your progress. I love Control IQ. If I could just remember to set the activity to exercise, I probably wouldn’t have any lows!
Thanks for commenting, Patrice. Insulin suspensions are when you see lots of red on your pump screen. I think that the lower blood glucose you target, the more apt you are to get insulin suspensions. I have pretty low targets. I don’t use Exercise much, but I probably should….
Thanks Laddie- I thought the red occurred when they lowered the basal. I don’t know that they stopped the basal. When I do have the red it’s usually only for a few minutes. I keep my goal at 110 mg/ dl. I have hypo unawareness, so I find that manageable. I’m fine with A1C in low 6’s and rely more on TIR,
Laddie – My head spins when reading your updates, but in a very positive way that is helping me get better educated for when I’m able to get my X2 w/CIQ likely in January-2021.
My TIR has gone in the dumper over past couple of months as I’ve had a summer ‘stuff’ and due to that ‘stuff’ I’ve purposely kept my TIR goals higher to prevent any unwanted extreme lows that would have further complicated the ‘stuff’ I’ve been dealt.
‘stuff’ includes: Macular degeneration in right eye (it is the “wet AMD” and thus is being treated with injections into the eyeball every few weeks (it is working out well). Then I failed my stress test and ended up with a Heart Cath and thankfully the ‘widow maker’ was able to be corrected with a stent (WHEW). Followed that with intense Cardiac Rehab to fine-tune and tweak my exercise schedule and encourage more and cotinuing weight loss. Then two days after graduating from Cardiac Rehab I’ve been blessed (NOT) with a severe bout of Sciatica. Still seeing my Chiropractor who at least has things loosened up a tad where I can ‘sort of’ actually walk. My PCP was kind enough to get me some muscle relaxers which have been a Godsend.
That chapter of ‘stuff’ is enough and then there is Covid. I’m ready for a clean slate for sure.
TIR fell thorugh the pits as I didn’t want any low BGs during all my other medical events. Honestly just didn’t want to deal with that on top of everything else … like trying to get things in order so I could even take a step without serious moaning.
My wife is still chauffering me and has been fantastic at putting up with all the ‘stuff’ with me.
Heck … I’ve not even been able to bend over to get the dog’s food bowls and feed them until just yesterday. They look at me in wonderment as well, but do sniff, lick and snuggle knowing I’ve not been feeling my normal-self.
Enough on that … love your updates and I’ll be refreshing the read on them as I get closer to the X2 and CIQ.
Nolan-I knew about some of the cr*p going on with you but didn’t know about the sciatica. I can’t remember when you will finally be eligible for a Tandem pump but I do think it will be a good move for you. The protection from lows with Basal IQ and Control IQ are worth their weight in gold. I’m sure that your wife/chauffeur will appreciate that.
What a creative approach. I would never have thought of it but will give some consideration to what might be an analogous interesting-tweak for me.
It does help. I am not saying that I don’t get highs anymore but the background long-acting insulin helps to control the peaks and make them easier to lower. Let me know if you give it a try.
My experience with Control IQ has been almost exactly like yours, Laddie. However I noticed that I don’t feel well when CIQ suspends insulin either intermittently or for longer periods of time… one or two hours at a time to keep me from going low. It also interferes with my sleep. The only way I can explain it is that I feel “jerked around.” Tweaking this and that has not reduced that feeling. The only way for me to avoid it was to let Control IQ run me higher than I normally run. And that puts my A1c into the high 6 percentile. Too high for me. I am going to try your way and see what happens. Thanks!
Nora-Do let me know if you experiment with “hiding” insulin from Control IQ by using a long-acting insulin. Thanks for reading!
I am a far more active user of the 670g than my docotr woudl like. As you did, I have more basil suspend time than she is comfortable with. I personally am fine with it, since i want less highs and far less time above 150. Now if I need to give up active management of the pump most of the time I could do it. But my TIR woudl drop considerably.
Yeah, you’re right, Rick.
Thanks for sharing this. I may try it too. I have similar issues and though I’m getting ~85% TIR with 70-150 goals, I’m spending quite a bit of time micromanaging. Those are the same numbers I was getting with the Basal IQ, but it feels like I’m having to work more! Even in sleep mode 24/7, I still have to manage my highs, correcting manually, and always inputting my own numbers for boluses, as I don’t want a 110 target, but more like 90-100… Maybe I just need better settings, but not been able to get there on my own yet.
This sounds like it’s worth a try! thanks.