Mental barriers with insulin pumps

[nebo]

I don’t know really if anything can be done here, I think this might be one of those T1DM things where you just need to talk it out. Anyway…

I’m generally a well controlled T1. I can’t remember my last A1C that was > 5.5 and my most recent (on MDI) was 5.0. But I was curious about the X2 with Control IQ and asked my doc if I could try it out. They were pretty thrilled with the idea saying I wouldn’t have a better A1C but it would be good for “mental freedom” which I get. And therein lies the problem, I half have mental freedom. Once I figured out to stay in sleep mode and have my basal TDD be 30U when I actually only use 19U it was all smooth sailing which compounded the problem further!

My numbers are fantastic, look at the last 48 hours (range is 70-140). You wouldn’t know I eat rice and pasta in there. It’s hard to argue with those results, no? I do still use R insulin for protein (extended bolus does not work well for me with protein). Yet all I can think about is I want off of this damn thing. The “what ifs” come in. What if it were to break, kinked cannulas suck (this isn’t my first pump), water actives are harder (those things you do once a year…), sex, showering, gym". All the what ifs that make up a fraction of your life but now will not leave me alone. Why am I even using a pump if I’m still taking shots? While my standard deviation is fantastic I feel like my mental health is worse than ever.

Does anyone else deal with this? Does it get better?

[Rphil2]

My pump frees me. If it restricts you then I suggest you do not. As for showering, swimming, sex, take it off. Only you can decide if it is to much to work with or not. Your right no one can or should convince you to wear one or not.

I suggest you go sit with a groups of diagnosed kids. In the end I could not continue to be so far behind the way I treated my diabetes. I could not. I got the pump the next day, I have never looked back sense.

[mohe0001]

Changing treatment methods is always difficult because change is difficult.

How long you been on this thing?

[nebo]

Only three weeks which is why I’m hoping I adapt to it.

[Robyn_H]

A lot of your concerns can be addressed just by disconnecting the pump. You don’t HAVE to be attached to it all the time.

If there’s a problem, you’re better equipped than most to handle it… Because you know exactly how to do MDI still, while most pumpers just have a foggy idea of their “backup plan”. (I get a new bottle every year of long-acting, just to keep in the fridge for emergencies.)

Yep, bent canulas suck. If you apply then carefully, though, they become rare. Most bent canulas are caused by pulling the cannula off the insertion needle, usually by yanking the blue needle cover off too aggressively (gently twist to loosen it), or by pulling the adhesive cover straight up, rather than angling the paper off to the side of the set. If you’re just too lean for the autosofts, you could always try TruSteel sets.

I am a little concerned about you injecting R, though. Can you better explain why you think the extended bonus feature doesn’t work for you? You know you can adjust the settings to be nearly anything you want, right, not just the default 50% now and 50% over the next 2 hours. You can tell it to deliver 0% now and 100% over the next 45 minutes, which I think would closest emulate R, but some trial and erroring would dial it in for you.

At the end of the day, though, the pump should be a tool you WANT. It should improve your life. There are lots of people who choose MDI because they enjoy the untethered lifestyle. I was sooooooo excited to choose the X2 for my first pump after MDI for 28 years. I live having that technology working for me, and I’m living a much better life because of it. I really hope talking it out helps you get to the point where you’re equally excited about your choice. But if not… That’s okay, too

[Marie20]

As said, you don’t have to use it. Disconnect it and since it’s been so recently used, you know how to deal with MDI again. After a few days or a week, think about if the pros out way the cons. People take breaks from their pump, that’s not uncommon. You could try that too if you want. And nothing says you have to be a pumper, a lot of people choose not to.

Relax…everyone is different and we all have our preferences. This is a long haul disease, the pump isn’t going anywhere. Put it away, someday you might want to try it again!

[nebo]

I do know the extended bolus can be changed, maybe I gave up on it too quickly. I was doing 0/100 over 75 minutes when I gave up. 45 seems way too short, that is then saying R is only 45 minutes longer acting than rapid but I’ll give it a shot today.

On the pump being something I want, I don’t know what I want anymore. I feel like I’ve had this low grade burnout for the last 2-3 years where I still manage really well but I hate most everything about it. This move was to hopefully help me forget.

[Terry4]

Before I started on an automated insulin dosing system, I used pump-extended boluses to dose insulin based on protein and fat grams. Here’s the system I used; you would need to do you own personal experimentation to confirm or adjust.

I first used the pump to deliver a meal dose of insulin based on the carbohydrate content of the meal. With that out of the way, I then added 50% of the protein grams to 10% of the fat grams. I called this sum, “carb equivalents.”

I then divided this carb equivalent number by my insulin to carb ratio to determine the total extended bolus. I delivered this quantity at a maximum rate of 1.2 units/hour. This often led to an extended bolus duration of 3-6 hours.

I found this system very effective for controlling post meal glucose. If you choose to experiment, it is not nearly as complicated as my above description may appear.

Your comments make me think that you are burning out with both your MDI and pump regimens. If the trace above represents MDI treatment, then I’m thinking you don’t really need to do anything else. Great BG trace, by the way!

If diabetes burnout is at the bottom of your weariness of all treatment methods, then you should address that separately. That’s a tough but not insurmountable challenge!

If your MDI effort is burning you out more, then perhaps you could do some pump-delivered extended boluses. I don’t like the percentage-based splits for extended boluses and prefer just doing the immediate carb-bolus first and then follow-up separately with a pure extended bolus of x number of units over y number of hours.

I found the separate nature of these two meal boluses easier to analyze and adjust. But that’s just me, many people get used to the % split method and do well with it.

Your BG control is excellent with MDI and I’m sure you could make the pump work for you if you chose to. Burnout is a real thing and you should address it. Some might see the motivation I take from a 48-hour trace like you painted above as obsessive or weird, but it does energize me. It allows me to credit myself with competence at doing something many people find hard. I take pleasure in excellent diabetes control and I think it fuels my long-game.

Your perception differs, of course. Maybe reframing your dosing competence would help you. Good luck!

[nebo]

Thanks Terry. I assume your strategy was FPU based? I tried Loop in the past and that is what I did then, I don’t think I can do that with the X2 because extended boluses are capped to 2 hours and you cannot “stack” them so if I were to run one for 2 hours but eat again 1:45 later I would have to wait to start a new one. That is one of the things I REALLY liked about loop, just add more carbs/“carbs” and it would handle it.

I do agree I need to address the burnout in some fashion. I don’t think it’s really related to MDI or pumps, just diabetes in general. I’m young by a lot of people standards, only 30 (and T1 for 16 of those years now), but it’s finally gotten to me.

The trace is on a pump though I can do the same with MDI. Looking back the last week on a pump is 95% in the 70-140 range with only 2 readings < 70; I cannot do that on MDI without significant mental effort.

I too get satisfaction looking at reports, it’s why I use nighscout since I think it’s easily the best out of what exists. Sugarmate is good too for a day by day and to see the “time in range” metric on a running length basis.

This is MDI but on a really good streak. It’s part of what makes this difficult is I know I can do fine no matter what and is the physical attachment worth it? Something for me to figure out.

[mohe0001]

Three weeks isn’t very long.

If 6 months from now, or 12 months from now, or 2 years from now, you still hate it and are wrestling with yourself about if its a good fit, I think we have a different discussion.

We will probably have those conversations. We probably always should. But, it will be a different conversation about different problems.

I quit pumps from time to time. I jump around between different tech, like you. Its cool. Its always difficult for me to change tech. Its labor intensive and exhausting. I kinda hate it. I try to only do it when I’m ready and I’m curious about the tech and ready for a big investment of mental and emotional labor.

You know who does this more than anybody? @Jen. I feel like she has been on every different type of tech.

[Robyn_H]

Control-IQ is an incredible breakthrough… But the reality is that it wasn’t designed for diabetics already in good control. I read in a Dexcom report that their users average 56% TIR (going off of memory here, I might be a few percent off), well below the ADA recommended 70%, and a MILE away from the 100% those of us proactive enough to read these forums want. Control-IQ was designed to get that average diabetic up to standard.

The high achievers have to really hack the system to make it bend to our will.

Unfortunately, they made some massive changes to what we already knew about pumping, so had to lock in a lot of settings. Designing the software for the lowest common denominator… That’s why you’re stuck with a max extended bolus of 2 hours. The automation algorithm is supposed to cover anything beyond that. You can turn control-iq off and extend up to 4 hours, if you want.

If you stick with it long enough, the pump will sort of retrain you, unbeknownst to you, and you find you just learn to behave within it’s limited parameters. It’s fairly common to see comments like “the first month was awful, but I’m loving it now!”.

If you can’t bear the learning curve out… The good news is, there should be a software update for Control-IQ soon. It was expected early 2021, but I don’t know how much Covid will delay it. They’re going to be adding a lot more customization options, based on user feedback. I suspect that you’ll be much happier with the increased system control.

If your decide to put your pump down for a nap until the update, it has to be plugged into a power source to power off. Just hold the button until it flashes the powering down message.

[Terry4]

I had to look up, “FPU,” as I’m not familiar with that term. So it looks like it stands for “fat-protein unit” and is denominated in calories. No, my technique described earlier is one that I picked up here from other members many years ago. All I know is that it worked well for me, was very forgiving, and easy to adjust.

I’m surprised that the X2 limits extended boluses to 2 hours. What benefit did designers think they reaped with this limit? I’m baffled.

Your use of R to help manage your glucose levels reminds me of Dr. Bernstein’s protocol. I think R corresponds well with my extended bolusing routine. With the X2 limiting extended boluses to two hours, perhaps adding R without the pump’s knowledge is the way to work around that X2 design bug.

I’ve added long acting to a pump regimen, the tactic know as untethered. I found this easy to transition to and enjoyed disconnecting for several hours while enjoying a beach vacation. The untethered regimen also adds a layer of safety in avoiding DKA.

@nebo

The trace is on a pump though I can do the same with MDI. Looking back the last week on a pump is 95% in the 70-140 range with only 2 readings < 70; I cannot do that on MDI without significant mental effort.

This supports your favoring pump management over MDI with all things being equal. I’ve been using pumps since 1987 and have taken a few pump vacations, up to three months, but have always returned to the pump. It makes my life easier, not harder.

Now I’ve lived through all of the weaknesses of pump therapy and know that pump failures can seriously threaten your well-being. But once you know how to counteract and watch out for those failures, life can be good.

If anyone uses a pump, they must monitor their blood glucose closely or they risk sliding into DKA with a bad infusion site or a pump occlusion. I almost think that a CGM is a fundamental requirement for safe operation of a pump for most people.

I also use Nightscout and do like the comprehensive look of its dashboard. I use NS to not only monitor BG and modulated basal profile of Loop, but also use it to monitor my infusion set age as we’ll as my CGM sensor age. When these items light up red on my NS screen, it prompts me to change them out before they start to impair my system.

I’m now one hour overdue to change my infusion site; I like to change close to 72 hours.

[Laddie]

I think that the limitation of extended boluses to 2 hours is based on the assumption that Control IQ can handle the BG rises after 2 hours. The problem with this assumption is that insulin is slow to act and by taking away our ability to predict BG rises, Control IQ sometimes lets us get into trouble when we could have prevented the trouble. I find that I miss temporary basals more than extended boluses.

Although I am mostly doing OK with Control IQ, I am at the end of warranty for my first Tandem pump. I have chosen to get my new pump with Basal IQ, doing a dial-back of my software. In general Control IQ does a good job of preventing lows. It does very little to help me with highs. But remember I am like you with many years of good D-control and my targets are lower than what Control IQ offers. I didn’t use Basal IQ for very long before updating to Control IQ. Now that I have used Control IQ, I think that I will be very happy to just have Basal IQ.

It is nice to have choice.

[Terry4]

@Laddie

I have chosen to get my new pump with Basal IQ, doing a dial-back of my software.

That seems like a rational choice to me, Laddie. It reminds of when I upgraded to Dexcom G5 to then quickly turn around and revert back to my trusty G4. I’d probably still be on the G4 today if Dexcom didn’t force me off by shutting down the servers.

I think diabetes device companies should leave the ability to make user-choices outside of what they think we should do. There are always going to be people like you and me who want to ability to choose our own path, even within the confines of a certain device. I think my mindset has been highly influenced by the freedom of choices available in Loop.

I saw your account of this recently on Facebook but I limit my participation on FB and glad you showed up here, too. Happy Thanksgiving! Stay safe.

[John_S2]

@Terry4 and @Laddie:

Thank you both for bringing up and discussing the C-IQ 2-hour extended bolus time limit. I had certainly been baffled by that change because I often find that something like 4 hours of extended bolus works pretty well for a high-fat, fine-dining experience. I had assumed that it (like the fixed 5 hour insulin duration) was somehow tied to complexities of calculating IOB in C-IQ, but the idea of thinking that C-IQ automation can handle it makes sense, but was not something that I had considered.

Thank you both … and stay safe!

John

[Marie20]

@nebo The other thing to keep in mind for the burnout? You have excellent control either by MDI or pump…it’s okay to slack a little and give yourself some wiggle room and not be “perfect” all the time.

This came home to me a few months ago when I had dry socket on a tooth pulled and things went awry. Thank goodness it got better. But I realized instead of trying to figure out the perfect setting to just relax because there was not going to be a perfect setting. When I first started snorkeling/swimming for 3 hours straight my numbers started climbing towards the 2-3 hour range, but that was worth every second of being higher. Sometimes we need to let go some.

Take a mind vacation. Allow yourself a day here and there of not worrying what your numbers are, just dose as you think you should. Let go a little. I bet the numbers won’t even be that bad, but if they are, it’s okay, it happens.

Choose not to be miserable.

[nebo]

That might be what I have to do. It’s been so long since I’ve really had “bad” numbers I may have just lost perspective.

[nebo]

On the use of Regular insulin, I am a former (if there is such a thing) Dr. B follower. I eat more carbs now but the knowledge of how foods work with different insulins stayed.

The untethered regiment is interesting. I still have Tresiba so I might give that a try for this month and if I’m still unhappy it would make the transition easier.

[Yve65]

I have a Minimed 670g going out of warranty in August 2021. What is the difference between Basal IQ and Control IQ? Or how can I find out for myself? My 670g is my first pump, and I get the definite impression that the Tandem might work better for me. I went off the 670g Auto mode after only 1 month, as it couldn’t keep up with my hormone swings (perimenopause, ack!). It looks for your “normal” patterns, and my hormone-driven insulin resistance swings means that I don’t have a “normal.”

[MM1]

@Yve65

What is the difference between Basal IQ and Control IQ? Or how can I find out for myself?

Here is description from Tandem.

https://support.tandemdiabetes.com/hc/en-us/articles/360039385173-How-is-Control-IQ-technology-different-than-Basal-IQ-technology-

You can start with Basal IQ only, and later upgrade to Control IQ if you want. But once upgraded, can’t go back.

I started with Conttrol-IQ, so did not use Basal-IQ. I think @Laddie is trying B-IQ only first, then will decide whether to switch to C-IQ.
You can find lots of videos on Tandem site, or download an app to get simulation of Tandem X2 menus/options.

I used Medtronic pump for 20+ years, but only the 5xx and 7xx older models, since I also used dexcom instead of medtronic Cgms. So all pump settings/deliveries were from basic settings, no auto-mode. I appreciated the postings that discussed some of the issues with 670+ but understand there have been some improvements.