What I've learned about Control-IQ so far

If you go to the Tandem diabetes website, you can download the new t:slim X2 “User guide (with Control-IQ Technology)”. Having some free time today, I’ve been going over the details.

I think this will be the information most relevant to people, hopefully you can zoom the images:

Things I find interesting:

  1. I know a lot of people are worried about the 180 upper limit, but the pump is not designed to keep you there, it only delivers automatic boluses if you are predicted to exceed 180 in the next 30 minutes. You can still set your target blood sugar under personal pump profiles to a lower setting, though I imagine this only matters in the manual bolus calculator.

  2. The normal working target is 112-160. Some may find this too high still. Personally, I think I’d be happy to float in the middle of that if I never exceeded 160, but I haven’t been able to yet eliminate those high numbers on my own.

  3. There is a sleep setting, which can be started manually and/or pre-programmed with a lower/narrower target range of 112-120. Supposedly this is because there are fewer outside variables when you’re sleeping. However, no automatic correction boluses are delivered in this mode. (No sleep walking/eating!). Perhaps those with lower target ranges could live in this mode if they’re not worried about post-prandial spikes?

  4. There is an activity mode with a higher target range of 140-160. Scheduled sleep mode will not engage when your in activity mode, and will have to be manually started.

  5. It is different than Basal-IQ in that it can vary your basal up or down, and not just suspend it. It can also automatically bolus up to 60% of your max bolus, which is determined by a multitude of settings as well your pump history. Extended boluses will resume when insulin resumes (basal-iq currently cancels them, and many have taken to using high temporary basals instead of extended boluses). Conversely, you can no longer set a temporary basal rate if Control-IQ is engaged. You have to disable Control-IQ if you really want a temp rate.

  6. The two things I find most odd is that it requires you to enter your weight and total daily insulin dose during configuration. These are used to calculate the safety variables, so I understand the necessity, but I feel like it’s a FDA-forced redundancy based on outdated diabetes theory to be basing anything off that information. I’m not even sure what to use as my total daily dose, given that can vary by 100 units depending on body chemistry and food choices any given day. Do the current loop algorythyms ask for this?

I don’t think the active population on this forum is representative of the greater diabetes population. I can fully see how this system would be disappointing to those who are already achieving great control. I know I’ve felt “diabetes shamed” by the <6ers here in the past because I’ve personally always struggled for control. I wish you could customize the target ranges, but I just don’t see the FDA allowing that right now. Definitely not in it’s first iteration. I’ve been able to float between 80-100 with just Basal-IQ, but still spike after meals. I’ve only been on basal-iq for about a month, though, and am still learning.
Maybe I could achieve better on my own. Overall, I think it’ll be a world of improvement to those who are struggling, though. I still haven’t decided if I want to install yet. I think I want to wait and see some dexcom data from others before I do, it wait until it’s backwards compatible back to Basal-IQ

6 Likes

No shame, everyone’s diabetes is different.

I agree Control IQ for most people with diabetes looks like it will very beneficial. Like you I’m probably going to sit on the sidelines and see what some of the real world experiences look like.

2 Likes

I was merely trying to point out that it’s difficult to be open here about being above target with so many people sharing their success. I think the number of “uncontrolled” diabetics that would improve greatly with this system far outnumbers what is expressed on this forum.

Robyn - Nice summary of the Control-IQ algorithm that’s about to be released. I agree with you that the embedded targets are likely going to serve most people very well even though some of the already better performing demographic may not be impressed with these goals.

This forum has always been skewed toward and populated with the better informed, more highly motivated people with diabetes.

I hope that this was not deliberate shaming you experienced, intended to make you feel belittled. I am aware that one person’s success, even if expressed in muted tones, can make bystanders feel discomfort and perhaps shame. I’m also aware that a person can feel shame even when it is not intentionally provoked. It can be complicated.

I have been, at times, that person who has celebrated some statistical diabetes accomplishment, like a 24-hour CGM 100% time in range “no-hitter.” If we can’t celebrate those accomplishments and milestones here, among those who truly appreciate what it means, then where can we do this? Tolerance is essential in relationships and communities.

I’ve been painfully aware of how someone else who is struggling with glucose control can become discouraged by comments describing success in cold statistics. It’s why I try to limit those types of comments since I know how many have not yet figured out how to achieve that performance. It’s also why I try to be generous with sharing what has worked for me.

We are all different creatures with unique physical and emotional characteristics. Not everyone is interested in making all the same tradeoffs I have made to attain the glucose management that I enjoy. I also realize that some people just plain have a harder case of diabetes and this reminds me of how I have been blessed with the body and abilities that I have. While fate has cursed me with diabetes, it has also given me curiosity, an able brain, and persistence to mitigate the damage that diabetes exacts.

I realize that my comment is tangential to the main focus of your post. But this tension between one member’s success and another member’s struggle is reality in a forum such as this.

I have benefitted profoundly from participating in this forum. I learned highly useful tactics to manage blood glucose from other members here. Ten years ago, when I first joined TuD, I was astounded at the glucose results some members were getting.

At first I thought, there’s no way I could do that, but then I started to think, if they can do that, then why not me? The success of other members here combined with my openness to their ideas placed some heady goals on my diabetes menu. That pivotal shift in mindset was crucial to me. In my case, other people’s glucose success did not demoralize me, it inspired me!

None of those tactics, by themselves, have delivered me to where I stand today but their sum-total has helped me produce amazing results while it greatly improved the quality of my life.

Getting back to your main post topic, I think the Tandem Control-IQ is going to help a lot of people. And the technology will get better and better as time goes by.

4 Likes

Everybody’s sick of me complaining about diabetes numbers. I’m even sick of myself.

I would find it refreshing to hear someone else complain about unmet personal goals, lol.

Complain away, @Robyn_H.

I agree that the more ‘uncontrolled’ someone is, the more likely they are to benefit.
But, ‘uncontrolled’ is soooo relative. It would be nice to have some concrete definition of ‘controlled.’ I want something that holds up in court. Will you be the first to define this term in black and white for me? Take a stab at it. People will chime in. Maybe we can get the term refined. I’m gonna make this post and see what people volley back.

I think that, in this context, I mean an a1c > 8. If someone’s a1c > 8, I would expect them to benefit from some system automation without much effort on their part.

Thank you for stating more eloquently what I was trying to get at.

I think people SHOULD celebrate their achievements here. It’s a hard life, and there’s nobody better to understand the victory than those wearing similar shoes. The “diabetes shaming”, as far as my experience in this forum goes, is fully occurring within my own head. I’ve lurked on this forum for what seems like an eternity. I’m a brilliant, highly educated lady, with a penchant for physiology… Yet I never actually registered here, let alone dared to comment, until recent years. I personally felt like I was diabetes-ing wrong, so my comments held less worth. BUT, I REALLY wanted to do it better, hence I kept trying to soak up the information.

I only know a few other type 1’s in real life, one of whom is a free-lance journalist in the medical field. It’s probably been 12-15 years since, but there was a big diabetes conference in Orlando, where I was living at the time. She invited me to a “meet and greet” type gathering that would be attended by all the diabetic celebrities (Is that a thing? Bloggers and such) of the day. This was in the early days of Dexcom and Omnipod, where everyone was flashing their new tech. Unbeknownst to me, she had spread word that I was coming, and that I was un-insured, un-doctored, un-teched, and using old school humulin insulin. I’m already pretty shy, and here I was being literally gawked at by a horde of people like a freak of nature. This was a full hotel lounge, and every single eye was on me. Like a deer in the headlights I answered honestly that my a1c was over 11 and I was actually told it was “shameful”, that I’d be dead within the year, the parents with young diabetic children pointedly removed them from my bad influence, etc… It was awful. People can be cruel to those who are different from them. I was a broke college kid, all alone in the world, doing the best I could, with the tools I could afford. So yes, the shame is long-seated in me.

I really feel like there are many people lurking here, just like I was, with a1cs in the double digits. I think there are exponentially more people who haven’t even found the community, or might not have any interest in it. I’ve been a little saddened about the over-whelming responses that the Control-IQ targets just aren’t good enough, when I think the bigger majority of people would benefit… They just don’t have a loud enough voice here.

I’m THRILLED for those who achieve a1cs less than 6. I’m sure they’ve busted their tails to do so, and they should be very proud. Shout it from the roof tops. I just also want to hear it shouted aloud how amazing Control-IQ is going to be, because it’s going to change lives.

3 Likes

I wish I could! That’s a hot button of debate. When I was diagnosed in 1989, I was told to aim for 80-200 mg/dl, but not expect too much. An a1c less than 7.4% was the goal, and I believe that has persisted. More stringent endocrinologist recommendations were/are for 6.5-7%. Gluco-normal people run 4.6-5.3%, and many diabetics strive to achieve this, thinking the more “normal” they are, the lower the risk of complications. It’s a little more complicated than that, though. Some people are just pre-disposed to complications, and there are major risks to diabetes medications and hypoglycemia… Sometimes outweighing the risks of hyperglycemia. The American College of Physicians recently suggested new guidelines of 7-8%, at least for type 2, which was greeted with much uproar and disapproval.

With the rise and permeation of CGM, I think the new benchmark is really 100% “time in range”. 80-180 mg/dl seems to be the widely accepted terms of that, but many want better. Basically 80-100 mg/dl would be ideal if you could completely avoid the hypos in the process.

I suppose the widest definition of “uncontrolled” would be an a1c over 8%. I don’t really know a good “controlled” definition of time in range. I’ve never seen a goal less than 100%.

By the way, please b!tch all you want! I’ll always have an empathetic ear. :smile:

I was lurking on TuD for at least a year before I started commenting. One of the recurring themes during my lurking phase was the social media war about carb limits. There was lots of passionate discussion about whether it was a worthwhile tactic or not. I just read at the time but I learned a lot!

That was an unfortunate scene for you at that Orlando event. My meetups with other people with diabetes in the last several years have been entirely pleasurable. Excluding anyone was always considered bad form. I would never look down my nose at anyone else’s effort to manage their diabetes. It is darn hard to do and everyone doesn’t have all the tools and information they need. I need to look no further than my socio-economic privilege to temper any over-prideful sentiments.

I’ve been to Taking Control of Your Diabetes conferences, the Diabetes Unconference, and Sugar Surfing. For a period of time I was attending the monthly local T1D meetup. I also go to conferences on low carb style eating, ketogenic, paleo.

I’m glad to read that TuD was not part of that unsavory behavior. And also glad that you stuck around and started writing. Your experience and knowledge complement this community well. I look forward to your continued participation.

I recall hearing that a respectable time in range number for CGM data is 70% 70-180 mg/dL (approx. 4-10 mmol/L). That was the scale cited by several presenters at the Taking Control of Your Diabetes (TCOYD) Type One retreat held in San Diego in August. Not sure if this is the formal definition of “controlled” or not but it seems reasonable to me.

I have a Doc currently defining ‘control’ as 100% in range. Its making me nervous. He knows damn well that is unrealistic and unattainable. I swear to God, if he does this to me, I’m coming after him.

@Terry4, the standard you cite is the new 2019 recommended standard by the ADA (> 70%)

@Terry4, my lawyer is cheap, young, good looking, and has no scruples whatsoever. He’s young and hungry. He knows nothing about medicine, but neither does this Doc. Should be a fair fight.

1 Like

Well, if one sets the limits wide enough, 98% TIR is attainable by most. I’d say 65-240 mg/dL (3.6-13.3 mmol/L) is something most people could do. Sounds like your doc is frightened of both highs and lows. An expectation of 100% of anything is a formula for disappointment.

Thats a good point. Its not actually BG he’s worried about. Its his legal liability. Some Docs are really nervous types about that. I’ll show him legal liability. He’s gonna see me and my baby face in his nightmares. I meet the 2019 standard. Therefore, he can suck it! I tire of this cat and mouse game. Every time they make me play, I get better at it. I’m sick of playing it. I’m going for checkmate. I apologize for the diabetes spaz-out. But, its warranted. Let this be a threat - I’m from people’s who have the heredity to get the diabetes, but we also get the Viking berzerker rage. Bob Dylan with Johnny Cash - Girl from the North Country (Official Audio) - YouTube

My research shows that I must wear a shirt, made from a bear, to my next appointment. A strange man in a starbucks asked me to give him a hug today. I think he had the look I am going for. He wore a fur coat with the look of Golden retriever fur. It want a look like that - something that will significantly lower his expectations of me. I declare war.

The Finnish have the highest incidence of type 1 in the world. Perhaps this will teach me how to deal with my Doctor.

Thanks to @Marie20 for posting this:

If you’re too busy to read it, here’s a summary of findings:

For people with type 1 or type 2 diabetes, experts recommend aiming for:

  • At least 70% of the day in 70-180mg/dl
  • Less than 4% of the day below 70mg/dl
  • Minimize time each day above 180mg/dl

What is time-in-range in people without diabetes?

A recent study put CGM on people without diabetes for 10 days, finding 97% time-in-tight-range (70-140 mg/dl), with blood glucose levels averaging 99 mg/dl and showing little variation.

Time-in-tight-range, also called “flat, narrow, in-range” (FNIR). This is one way to think about “ideal” blood sugars: high time-in-range and flat glucose levels with few ups and downs. People with type 1 or type 2 diabetes can strive for FNIR.

3 Likes

Excellent link, Jim. I somehow missed that report when it came out last August. I’m familiar with parts of it, like the “many faces of 7% A1c” that diaTribe has published before. I prefer the range they identify with managing T1D in pregnancy, 63-140 mg/dL. I use 65-140 mg/dL.

And limiting lows to < 4% seems reasonable but I want that 65-70 mg/dL slice on my side of the ledger as “in range!” Overall, this article makes a strong case for using time in range as the preferred metric for managing glucose in diabetes.

1 Like

I’d run from a doc that thought control meant being in range 100% of the time. That’s scary to think that a doctor would have such medically unsound thoughts and even worst for him to voice them to his patients. Sounds almost like mental abuse to me.

3 Likes

Wow, this is a loaded topic. I think a key issue to ponder is that often when one is struggling with personal T1D control, to hear (or read about) someone achieving a statistic that one feels is far removed from them can be really, really depressing. I had horrible control the first decade of my diabetes. I was in a lot of denial, and no one around me knew anything about it. I never once had to go the hospital, but my A1c (when I bothered to go to the doctor) was always between 9-10%. My doctors overtly shamed me (shaking their heads and walking away, for example) and I just went more and more into the closet, so to speak. Getting on the pump was a turning point; but reading Adam’s book (diaTribe) “Bright Spots and Landmines”was the really big turning point for me. It wasn’t just that he has all these great tips and tricks, but he talked about his ongoing challenges throughout the book. He is amazingly humble. Like the chapter entitled “Why did I eat the chips??” This is a guy who stays in 70-140 range almost all the time. But he doesn’t crow about it. People that are humble like Adam become mentors to many others. I’m probably going to push some buttons with what I am saying here, but hearing about great control without hearing about how they did it is discouraging to me. Terri, like Adam, you have always explained your strategies and tactics, and that’s what we need to hear more of. For me, reading about strategies and tactics is much more useful than reading about grades and scores (A1c, TIR). Adam makes this point in his book, when he talks about setting goals. By following much of what is in Adam’s book for the last two years, my A1c is now consistently 6.8-7.0 and TIR is 88%. But that outcome is meaningless without understanding the strategies and tactics I used to achieve this. Let me also say that it is a LOT of work, around the clock!! (I know you all know that! :)) Thanks to everyone for allowing this conversation to happen!

6 Likes

" I’m probably going to push some buttons with what I am saying here, but hearing about great control without hearing about how they did it is discouraging to me. Terri, like Adam, you have always explained your strategies and tactics, and that’s what we need to hear more of."

The best motivator for me to be in good control comes from two facts.

  1. Bad control is going to either end my life prematurely, or it will result in complications that I want no part of.
  2. Feedback from body if I’m not in good control. Being higher than a kite is very unpleasant for me. Being overly low (I don’t mind the usual lows–I just treat and go about my business) just pisses me off to no end when I’m in the middle of something enjoyable such as a nature hike., I don’t want to have to stop for 15-20 minutes before I have the strength to continue with the hike. Plus I feel bad for holding up whoever is with me.

So that is my motivation. I don’t know how to make someone else care for their body by describing METHODS. For me it is all about ATTITUDE. I can’t teach attitude. :slight_smile:

With the right attitude, tactics will come naturally. I guarantee it.

4 Likes

I’m with you on the range. I have 65-135 in Clarity for my AGP report. Never close to time limit on high end except during travel. Now finding an Endo who isn’t hostile to anything less than 0% on the low end, that’s a challenge.

1 Like

Yeah, I don’t get clinicians with no tolerance for some reasonable percentage of hypoglycemia. It’s not as if we all have at our disposal a set of tools capable of maintaining exquisite control with little effort and attention. That fantasy set of tools is called a healthy human pancreas!

3 Likes

Robyn-
Thanks so much for the info. I am so eagerly waiting for this system to roll out. I so desperately want easy. I am so very tired of all the crap I have to do day in and day out when dealing with my diabetes. I must say, since getting Tandem’s basal IQ, I have been Emilio much more than I ever have. It’s easy! I don’t have to worry any longer about urgent lows. Which is a beautiful thing.
I also lurked for a very long time here, when there was a whole different platform. And I was so afraid to posted because I always felt I wasn’t good enough.
I have finally realized I am as good as I need to be and every time I get a lower number for me, I celebrate. And when it’s higher, I just review and troubleshoot and try and fix it. Deep breath and move on.
I struggled for most of my 20’s I to 30’s with always being around an 8 a1c. No matter what I did. So frustrating especially when I would read about people and their 5.0’s.
Biggest game changer was a CGM! And than things started making sense. And my doctor and I worked out better goals for me not what everyone is using. I feel if it is good enough to keep safe and healthy, it’s ok and screw what anyone else thinks.
So when people online would get a little nasty, I would just not reply and not read their posts any longer. It’s like tv, you can turn it off if you don’t like what’s on.
Hopefully we are doing a better job of explaining that what each of us does, is what works for us not everyone. If a person has a goal of 7.9, that is their goal and there are solid reasons for that goal. So, please keep posting. Please keep asking questions. Please don’t take it personally. I have learned some things by people who have much better numbers than I do, but my goal is never to be as low as they are, just better.
I am like you. Ok with numbers being a little higher.and after listening to a post cast from Tandem, the goal target is 110. Yes the range is up to 160 but the target is 110. So if I can keep things as low as possible without problems, I am all in. I am hoping to get my prescription soon, and fire the system up. Can’t wait! And I hope you have as much success and an easier time of it with this new system. Easier is always bette!

2 Likes