Mental barriers with insulin pumps

Type 1 and LADA
21

Ut oh, she’s off on another Control-IQ monologue again… LOL

Basal-IQ was the first version of Tandem’s pump automation. It does exactly one thing: turns off insulin delivery if you’re predicted to go below 70. And it turns it back on when your BG trend changes direction.

Control-IQ is full pump automation. It can increase basal, reduce basal, completely stop basal and extended bolus delivery, and even give a correction bolus if you’re predicted to go above 180. Control-IQ is the future, there’s no reverting back to Basal-IQ after you choose to upgrade. (Though there is talk of possibly allowing this because many people haven’t adapted well from Basal-IQ to Control-IQ.) @Laddie was mentioned in the previous post, and is getting around this rule by buying a new Basal-IQ pump after her Control-IQ warranty expires.

How much you love Control-IQ really depends on the type of diabetic you are. It was designed the the “average” cgm-using diabetic, who is getting something like 56% time in range according to Dexcom, to get them above the ADA recommended 70% TIR. And it’s INCREDIBLE at that. If you’re already doing better than 70% TIR on your own, the default mechanisms of CONTROL-IQ can feel underwhelming. “Too little, too late.”

Fortunately, there are ways to “hack” the system to make it more aggressive and maintain a tighter target. For the last year, the diabetic interwebs have been awash with tips like increase your basal rate(s), run it in sleep mode 24/7, pad your average total daily dose in the settings with extra units, lie and tell it you weigh more than you do (mine is set to the max weight which is + nearly 200 lbs), program a lower correction factor, etc… And these tips all work wonderfully… But there’s some inherent flaws with a system that requires all this subterfuge.

Control-IQ is also breaking a lot of the former insulin pump molds. Because of this, they chose to lock in some settings that you can’t modify, and that’s a deal-breaker for some. Like, the duration of insulin action is locked in at five hours. That sounds terrible to nearly ALL OF US, but surprisingly it’s actually the right setting because they changed the programming to better match how insulin actually gets absorbed. You’ll see most of that insulin disappear in the first few hours and slowly dwindles to nothing. The IOB display will read zero long before 5 hours passes. Other fixed settings just seem stupid, though, like you can’t extend a bolus longer than 2 hours and the target BG is locked at 110.

Switching to this sort of automation also highlights any weak points in your settings. Most of us never really took the time and effort to fine-tune our settings, we just make adjustments as necessary. Unfortunately, incorrect basal rates can masquerade behind behind incorrect ISF and insulin:carb ratios, and vice versa, and it all evens itself out when you bolus. Until those settings are being applied to constant adjustments, you might never realize just how far they’re off. Many people struggle with Control-IQ at first, until they figure out the correct settings to use. Some never do. Once you get it dialed in right, though, it’s monumental what it can do for you

Personally I’m LOVING Control-IQ, despite it’s short-comings. With the aforementioned tweaks, I’m achieving the best control of my life. I ran A1cs 9-13 for my first 28 years on NPH/R MDI, 8-9 after getting on the T:slim X2 3.5 years ago, 7ish after adding Dexcom, and 5.8 my last two A1cs with Control-IQ. My 90 day average is 94% TIR 70-160mg/dl… and that includes a few hellaciously sick weeks. I’m honestly not sure what would have happened to me without Control-IQ to smooth out those highly volatile weeks. And the thing is, I feel like I’m not trying nearly as hard. I just point my pump in the right direction (basically throw extra insulin at my food and trust the pump to withhold what I don’t need of it). I’m by far not a model diabetic… My trend lines are quite curvy and I eat whatever the heck I want, but I’m thrilled with my numbers while still loving life!

There’s also supposed to be another big software update for Control-IQ soon. Anticipated early 2021, but Covid might derail that a little bit. Tandem is really good at taking and applying feedback. The next software version of Control-IQ should address many of the concerns.

Personally, I wouldn’t recommend starting with Basal-IQ, unless one of the aforementioned locked settings is a deal breaker. Control-IQ is actually better at managing lows than Basal-IQ was, with the correct settings, and comes with significant other advantages. The systems and algorithms are completely different, and there is ZERO benefit to starting with Basal-IQ, just to have to start all over and adapt again to Control-IQ. I’ve seen some doctors using Basal-IQ like training wheels, and it’s just ridiculous.

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22

Good to know.

One feature I think would be helpful is a profile defined to fall back on when cgm signal gone for more than X amount of time. My settimgs are a bit tweaked, as you mentioned, so when pump loses cgm signal, I may drop low, and have to rely on xDrip alarms, or no alarms if due to transmitter signal loss to both pump and phone.

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The t:slim X2 with Control-IQ still expects you to set up bolus and basil profile settings. If your CGM readings are what the CIQ settings consider to be “in range”, then your insulin delivery is determined completely by your active profile settings. Changes to basil rates and correction bolus doses are only delivered if your CGM indicates you are (going) out of range.

If the CGM becomes disconnected then the pump turns off CIQ and just follows your profile settings.

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24

An even better feature would be to have a better target bgl so that people aren’t lying about their settings.

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Agree! And hopefully each iteration/SW release will get smarter and more flexible.
Maybe allow new settings with doctors approval/RX based on individual cases.

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I’d like to thank @Robyn_H for her EXCELLENT C-IQ monologue … Brava!!!

I know that for some (particularly those who already exhibit tight control), the C-IQ algorithms aren’t sufficiently flexible or aggressive.

My guess is that was essentially MANDATED in order to get FDA (and other national equivalents) approval of the first generation closed loop insulin delivery system.

Had several hundred of us shown up in ERs across the country “flopping like fish”, the FDA would have immediately pulled the plug on Control-IQ and likely set back closed-loop insulin delivery systems by 10 years. Every pump and CGM equipment supplier has to be secretly thanking Tandem for making conservative, rather than overly aggressive, engineering decisions.

With a strong, but safe, initial release of Cobtrol-IQ, I think that we can ALL anticipate ever better performing second, third, and fourth generation systems regardless of whose sensor and pump we choose to use.

Thank you again @Robyn_H.

Stay safe all!

John

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Thank you all so much for such good practical information!

I get the impression from this sentence from irrational _John that there are profiles. I’m pretty sure what that means, but let me check.

My 670g has several basal profiles, but only one 24-hour profile each for carb ratios and insulin sensitivity. So I can go from basal profile 1 through 5 when my insulin resistance changes, but I have to reprogram the carb ratio and insulin sensitivity profiles each time.

Does Tandem have carb ratios and insulin sensitivity factors that are matched with each basal profile, so they can all be changed together as a set? If so, YIPEE! And how many sets? If not, please let me know.

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Control IQ starts out just like a regular pump. You can make any kind of profiles you want. I don’t know how many you can make but I personally have 2 profiles with 3 different timed segments in each profile and I can make more segments if I choose to. Each segment has an option for I:C ratios, correction factor, and basal rate. Then Control IQ takes it from there by raising or lowering your basal rate according to your Dexcom trend and predictions and in regular control IQ mode giving Boluses if necessary.

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Wow, what a useful discussion on many levels! I’m about a year out from a new pump, he had a 6-month try at the 670G, hated it, put it back in the box and went back to my old Paradigm/Dexcom combo routine. So Tandem is of interest to me. Really helpful to know the difference between BasalIQ and Control IQ, and the fact that there’s a fixed target at 110. The upcoming 780G allows you to set your own target, down to 100, a massive improvement, but I gather Control IQ* is going to do something analogous in an upcoming release (?). Otherwise that could be a dealbreaker. But so is having to use Mt’s CGM for me. I hated the Guardian 3 sensors–partly overnight inaccuracy, but worse was all the kludgy taping that required an extra set of hands and made changing sensors into a 30min ordeal sometimes. Supposedly there’s a new version that eliminate all that crap, but I just don’t trust MT to be any good at the CGM business, they’ve been sucking at it for so long. Rumors that they may someday open up to interoperability with Dexcom are fine, but show me a rollout date.

On the OT, I once coined a term “Diabetic Claustrophobia” for that oh-god-this-is-forever, or I’m-hooked-to-this-machine-24/7-and-it’s-driving-me-nuts, or other feelings like that. The trigger for me has usually been any major change to my regimen, because it always takes time to adjust, and going through that phase where you’ve been managing ok with something else, it’s gotten routine even if inadequate, but now you’re continually tweaking and struggling to learn the new thing and make it work is like a mini-version of when you first got dx’d. It’s exhausting. The one exception to that for me was switching from R/N to Lantus/Novolog, which was like being let out of prison. But going on a pump to begin with—ugh—and switching to a different pump—ugh—and trying the 670G—ugh x 1000. So yeah, I feel your pain I think. Glad to see so many great suggestions on how to manage that here.

*Changed from “Basal IQ” per @Robyn_H’s correction–thanks Robyn!

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Tandem let’s you create up to 6 personal profiles. I currently have 4 set up. My original profile I was using before Control-IQ. One I just call “IQ”, which is my new normal. One I call “low IQ”, which is my new normal profile duplicated, but all the basal rates reduced by 50%. It’s really useful for highly active days and strenuous activity. And one I call “high IQ”, which is all my basal rates increased by 50%, really useful for sick days, before a lady’s monthly… and holidays, when I’m going to graze all day and EAT ALL THE THINGS!

It’s even better than what you’re suggesting, though. You can actually set specific target BG (though Control-IQ will override to 110 when toggled on), correction factor (ISF), insulin:carb, and basal delivery rate for each and every timed segment within a personal profile. There are 3 bolus settings that can only be set once per personal profile: insulin duration (Control-IQ will override this setting to 5 hours when toggled on), max bolus amount, and a toggle switch for if you want to count carbs or not (you cannot turn this off if Control-IQ is toggled on, and likewise you have to turn this setting on before you can enable Control-IQ).

You can create up to 6 different personal profiles, with up to 15 different timed settings within each.

Nearly there, but you’ve confused Basal-IQ with Control-IQ. It hasn’t been officially stated yet, but the 110 target is a massive bone of contention, and Tandem is REALLY good at listening to user feedback. There’s no way they’ll let Medtronic have this step up on them. I’m 99.8% percent sure that the next CONTROL-IQ update will allow you to adjust the target BG lower than 110.

The t:slim X2 with basal-IQ (or even with Control-IQ turned off), on the other hand, has virtually no setting limits at all, aside from safety extremes. You can set your target at 70, if you wanted. You always have the option of choosing a Basal-IQ equipped pump (rather than Control-IQ), that will pair with Dexcom, prevent lows, let you control everything else, and still have the tiny pump profile, durable metal construction, rechargeable battery, touchscreen, and pretty pump interface. And you can choose to upgrade to Control-IQ later, when it evolves to something you’re happier with. Again, though, I would really only advise this if any of the locked pre-sets are deal-breakers. There are inherent growing pains with upgrading to Control-IQ from Basal-IQ.

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Thanks Robyn H and DrBB! Very helpful!!!

It’s funny, but I never had that “I can’t be diabetic!” stage after diagnosis. I had spent 3 or 4 months feeling weaker and sicker every day. I went into the hospital about a millimeter away from a coma, and in full DKA (BG 998!!!). I was just glad to know that there was treatment - no denial whatsoever!!! But I had a lot to learn, and 30+ years of Humulin N & R to get set in my ways. I got a Dexcom G5 in 2017, after my insurance decided that I was unstable enough, and their rules had changed.

I was horrified by the information that the G5 gave me as to my BG patterns, especially overnight, and beat my new CDE to a discussion of my getting a pump. But the Medtronic sensor system drove me crazy, and after several months (2 bad days, 2 or 3 good days, and it died on day 5 or 6 about 2/3 of the time), I was allowed to go back to Dexcom. The funny thing is, I still have a lot of the same habits, and in the back of my mind I keep forgetting that the pump is adjustable, or use lots of temp basals instead of running basal tests and consulting to get the basal patterns changed. The problem is that the pattern changes never last more that a month or two, so temp basals seem reasonable most of the time. (Ugh!)

My current Diabetes Coordinator(?) (has a Dr in pharmacology), mentioned that the Tandem has entire sets of settings, and I wondered all over again why I got a Medtronic pump. To be fair, the 670g was brand new at the time, so my CDE had no experience treating anyone using it. This time I have LOTS of time to look into things ahead of time, and ask lots of questions.

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@DrBB I meant to add earlier, but forgot…

The Control-IQ BG target might indeed be a deal-breaker for you. But I really don’t believe it so in the way you think it should be a deal-breaker. To be honest, the I don’t think the target BG matters much. It’s only really taken into account twice. 1. When you actually use the bolus wizard, and enter the carbs you’re going to eat, and your BG is usually auto-filled in for you. It suggests the units of insulin you should deliver, but you can easily type in any other amount. Go ahead and add a little extra if you know the pump is low-balling. It also matters when you’re running in default mode, above 160, and predicted to be over 180 in the near future. The pump will use all the available information to calculate a correction bolus… And then only deliver 60% of that automatically, as a safety measure… Because, you know, these things need to be designed for lowest common denominator. And after reading social media more these last few months, I’m finally starting to see that the “average” diabetic has about zero clue how to manage their diabetes. I FINALLY understand exactly why they had to make some of the decisions they did with Control-IQ. Because of that, I highly doubt you’d be one to keep Control-IQ set to it’s default mode, in which case this second instance where the target BG matters, would be totally moot to you. I’m pretty confident that you would also be one of us who considers this behavior “too little, too late.”

Like I said, Control-IQ breaks many of the molds previous pumpers have become adjusted to. What matters more than target blood sugar, is the action range you choose. Most often called “modes”, but Tandem defines them as activities. The default mode targets to keep you between 70-180, but doesn’t really take any action at all unless you’re already at the extremes of that range and predicted to exceed the limits. They have introduced the “sleep” activity, because they assume they can safely take greater control when users are fasting while asleep and aren’t completely screwing up their food boluses. In this sleep mode, the pump will constantly adjust your basals if you’re predicted to stray outside the 110-120 range, but choosing this you give up auto-bolus corrections. Those of us who have a good grasp on healthy bolusing techniques often choose to just stay in this mode all the time. The loss of auto-boluses hardly matters, since those who would choose this method are likely to correct themselves long before their BG exceeds range limits. There is also an “exercise” activity, which targets 140-160, good for light exercise. It doesn’t mean your blood sugar will STAY at 140-160. It means it will reduce basal if you’re below 140 to avoid an exercise hypo, and increase basal if you’re not exercising hard enough and rose above 160.

I assume you would also choose the sleep mode target range, in which case it matters less if you can accept the 110 target BG than it matters if you can accept living stabily at the 110-120 range. Just because a certain number is set, never means you’re going to stay there all the time. What sleep mode really does is reduce your standard deviation. It reduces post-prandial spikes and reduces the rebound or just over-aggressive bolus lows. Left to it’s own devices, though, it will definitely try to keep you stable 110-120. You can weigh that down a bit with increased basal rates, but that’s something many are afraid to implement. So the real question is, could you accept a slightly higher A1c, if doing so allows you to minimize the time and effort it takes to manage your Diabetes and you could still achieve excellent results? If the answer is “no, I need to be lower!”, then no, Control-IQ is not for you. (At least not yet) It’s really that simple. If you still choose Tandem, because it really is a great pump even without the Dexcom integration and an INCREDIBLE pump with it, you will want to ask for a Basal-IQ pump which allows you to take greater control.

Someone posted recently about their experience in the iLet trial, and it sounded very familiar to me because it’s largely how I operate in sleep mode I’ve actually uninstalled Myfitnesspal because I just simply don’t need to weigh, measure, look up, and calculate macros anymore. I don’t use the bolus wizard anymore. I’ve just learned to evaluate meals as regular, light, or heavy. Fort instance, a “regular” breakfast for me is 4 units. That’s for slightly sweetened coffee with milk, a few eggs, and some carb. Doesn’t matter if it’s 1 biscotti or two,1 slice of toast or 2, a whole piece of fruit or just a half because I shared between two plates. Control-IQ will smooth out the variance. I don’t even have to pull my pump out, I can just quick bolus through my clothes. A light breakfast would mean 3 units for me, and that’s just going to cover my coffee and a little extra for feet on the floor. A heavy breakfast would be 5 units, and that means something like sweetened oatmeal. Within reason, it doesn’t matter exactly how much I plop in the bowl anymore. I don’t have to measure the brown sugar or maple syrup. It doesn’t matter a whole lot if I add extra toppings. So long as I point it in the right direction (and I do tend to bolus heavily, and trust Control-IQ to suspend the extra), it magically smoothes itself out with little to no effort on my part at all.

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33

Thanks for that very thorough and thoughtful response! Yeah, I’m one of those < 6 AIC types, which is why the 670 sucked for me. And you are spot on about the difference between T1’s out in the wild and people around here, who are self-selected tight control geeks as a rule. I’m not sure I 100% grasp how the BG targeting works in the Tandem but it’s clearly very different from the 670, so I’m keeping an open mind about that. Your comments about meal bolusing are helpful too, as much from the emotional/psychological side (which the thread is about!) as the technical. Sounds like the overall experience has been to make things feel simpler and easier for you, which is the whole point. The 670 made me feel like I was locked into a room with Frankenstein’s monster at times, stomping around awkwardly, crashing into things, and failing to understand what I was telling it. The system treated the transition between automode and regular basal-pattern pumping as a catastrophe, alarm bells going off and things falling off the shelves, whereas if I understand correctly the Tandem treats it as routine, expected behavior. That seems much more like user-oriented design, which the whole industry desperately needs more of and MT has been particularly bad at. The one thing that has always been a bit of a turn-off for me about Tandem is the difference in how the reservoir/inset system works, which has always struck me as cumbersome compared to the MT system. But it’s not a deal breaker.

In any case you’ve been very helpful in helping evolve my impressions of these pumps, something I’m trying to do while I’m still months out from having to make a decision. Part of me thinks I should just hang on to my Paradigm until it conks out, since between that, Dexcom and Jardiance I’ve been doing better than ever before in my 37 years with T1. But you’ve given me a lot to think about.

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Ugh! 20 for me and oh how I hated that stuff. Back when you had to organize your whole life around your medication instead of the other way around. I used to call it the “Eat Now Or DIE!” regimen. Not everyone feels that way about it of course (YDMD), but I shudder when I hear from anyone still on it. You never tried the analog-insulin (Lantus-Novolog, e.g.) route? To me that was the life changer. “It’s 12:30, I haven’t eaten lunch yet, and I’m still conscious!” It also prepared me for pumping, which I switched to after about 10 years. It was more of an incremental change, whereas I would think the leap straight from R/N to a pump would be more of a culture shock.

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Ugghh! And the sliding scales. I never got that. Even as a child it just seemed arbitrary. "You’re high all these hours later after your last shot, so we’ll calculate exactly how much insulin you should take in hopes you’ll regulate sometime in the future, despite another meal to make things go haywire in-between… " Yet every medical person wanted the EXACT rules I was using. There was no option for "I’m just instinctively doing my best to throw insulin at it, and riding the sugar coaster. "

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That was my method to a ‘T’

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I am not a tech person at all, and envious of tech people on this site, (which I’m new to), but can only talk from my experience.

I use an old paradigm pump and a G6 and a few times a year, I take the sensor and pump off and give myself shots with a syringe and roll around in my body without anything attached to me or sticking in me, and I love it.

But after a day, I realize I’m spoiled by knowing my glucose every few minutes, and find it’s hard to do the smaller doses with syringes, and put it back on…
I agree with something I read here, if you are swimming, doing stuff you hate having it on for, take it off for awhile. it’s not going to kill you. and don’t feel guilty about it. Finger test, give a shot. Put it back on in a few hours.
I ran a support group with people with many years of type one and many said they would go on the pump for a few years, and off the pump for a year and then back on . Good luck. Lauren

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Yup! Educated guess-timates was my method. I knew that N wasn’t really working well for the last 10 years or so, but my hormones were always dicey (just worse in more recent years), so I couldn’t see that more long-lasting doses were going to be a good solution when my insulin resistance kept changing, sometimes gradually and other times suddenly.

Also, without me lobbying for changes, and I wasn’t really keeping up with the technology at all, none of the medical providers were doing more than vaguely mentioning that there were other regimens possible. NO ONE mentioned cgm at all … and I wouldn’t have qualified. When asked in early 2016, Kaiser told me that I wasn’t unstable enough!!! (Duh! Trying to avoid that!)

With several REALLY scary lows while I was home alone (in 2015 & 2016), I started educating myself:

Google “analog” … hmmmm …
… Okay, now google several more terms that no one every mentioned before.
I learned Basal and Bolus in 2015, I kid you not. Before, I just called them long-term and short-term insulins.

No one volunteered information, and I didn’t know any other diabetics. One of my warning bells was that my boss’ brother had hideously expensive insulin that required a prescription, and he had lost his job. Mine wasn’t nearly as expensive, and didn’t need a prescription. She accused me of lying to her about my insulin (not a stable personality), so I looked it up … ta-da! - my introduction to analog! I was like “How much???”

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A very familiar story in so many ways. I didn’t know any other T1s, didn’t have a specialist (university health care didn’t do referrals), no DOC as such, and I didn’t know about anything other than R/N for 20 yrs. Then I finally met another T1 who was on basal-bolus MDI and told me about it. Even then it was 3 yrs of Dr saying “you’re doing fine let’s not change anything” (YDFLNCA) which basically translates as “I don’t know enough to advise you and this stuff is dangerous.” Finally moved on to employer based insurance through my wife, got a referral to Joslin, where the first thing the endo said was “you’re not doing too bad considering your regimen doesn’t make any goddamned sense” and switched me to analog basal-bolus MDI. It’s amazing how long you can live in ignorance and just keep managing with the regimen that has become habitual, even if part of “habitual” is scary plummeting lows a couple of times a week.

Lots of others have that experience too. My endo was great about certifying I’d had enough hypos < 70 in the previous month to qualify.

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I’m enjoying this discussion. It reminds me that the medical device industry designs for the “average” person with diabetes and is constrained by regulators who emphasize safety as their dominant value.

I can’t really argue with those guiding values but the tradeoffs of flexibility for safety the mainstream designers make don’t serve me well. I wish there was recognition of the group of diabetics that many here live in. We’re better informed that the average diabetic, are curious about insulin management, and pursue continuous education about what new tactics we might be able to utilize.

We’re more adventurous when it comes to trying something new and don’t always seek the blessing of our medical followers. I’m not advocating that anyone try anything risky but acknowledge that many of us are willing to take more risk if the rewards include some sanity restoration in the lifestyle flexibility department.

In my Sim-City diabetes fantasy culture, I would allow a slice of people with diabetes, once they demonstrate a certain level of knowledge and competence, to sign a legal waiver and permit them to remove at least some of the “guard-rails” the commercial systems set for us.

What I’m describing here is not the do-it-yourself systems like Loop but instead designs produced by mainstream commercial manufacturers. We shouldn’t have to reverse engineer at the user level systems intended to protect us from ourselves just so we can make those systems fit into our wish for a more normal life.

I admire the creative spirit of those who can bend the design intentions to make the ultimate outcomes more amenable to them. But I think that sophisticated level of adaptation should not be necessary.

These thoughts are a flight of fantasy, of course.

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