Burned Out

I’m so done. I have been on the Tslim x2 pump since August of 2021. I was so excited when I first started! It was of course a lot to take in, but I felt up to the challenge. I had previously only used MDI via pens, so the world of pumping was and is completely new to me.

Things were going pretty well for awhile. I was loving the control of the pump and becoming more comfortable with using it. Recently though, it feels like I’m not getting the same results that I had been. It feels like I’m not getting the insulin I need, I’m constantly fighting highs, and once it gets high, it stays there for hours despite the Control IQ offering corrections. I got so frustrated at one point that I started giving doses by entering in carbs into my pump, and then not eating. This had varying levels of success, but for the most part didn’t work. I told my endo this, and she discouraged me from doing this and suggested I let the control IQ do it’s job.

The problem is, I feel like it’s not doing it’s job. It’s making me feel scared to eat because I worry about the consequences for my body, mind, and mood. It makes me wish I didn’t have to eat which is kind of sad because I love food.
Another issue that’s been bumping around in my head recently is an article I read regarding pumping and pump malfunctions in which some individuals were given mega doses of insulin through their pump without knowing (im talking a week’s worth of insulin), and falling into a coma, and eventually dying. This is something that no Tandem rep, diabetic educator, or doctor warned me about. I recognize the likelihood of this happening is low, but ever since I read that, I’ve felt anxious and scared. Coupled with the frustrations I listed above, I keep wondering if pumping is even worth it. I also am annoyed that I wasn’t informed of these risks by anyone prior to pumping, but I take some responsibility for this because I should’ve been asking more questions. The main risks I was warned about were not staying unplugged from the pump for too long because it can cause high sugars and DKA can progress quickly with pumps because no acting insulin in the background.
When my blood sugar gets as high as it has been getting, I fall asleep. I fell asleep today very quickly and woke up thinking it was the next day. I looked at my CGM app and I was at 365. When it’s that high, my brain feels like mush, and I can’t think. In total, it took about 5 hours to get it back down under 200 from the pump. Before it went up, I had pre bolused for food, so in total with corrections and the pre bolus, I had been given 9 units.
I’m just frustrated and scared. I keep thinking of the long term effects of these days that my BS is so out of whack. I keep thinking that even on my days off from work, I get no breaks, and I’m constantly trying to do the mental math to figure out if it’s worth eating at all because of how it could effect me later. I’m exhausted from the constant up and downs. I’m jealous of diabetics with better control. I’m annoyed with people in my life that can just eat whatever they want without thought or consequence. I feel useless on days like today because I can’t work on any of my hobbies or do anything fun when I feel like every time I get up I’m walking through mud. I am insecure about working part time because I’m young, and I see my friends working full time, and I feel like that isn’t even a possibility for me because of all of these issues I have. Maybe I don’t know that many other Type 1s, but I’m honestly shocked when I see people in diabetic support groups that work full time hours and still manage to have good control. When I see that, I feel even worse about myself because it feels like not only am I not able to be useful, but the part time hours aren’t even giving me the good numbers.
I’m sorry for the rambling, but if anyone has any advice or just encouragement or support right now, I could definitely use it. Thanks.

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Many people take pump breaks to re-access. Its possible the issues you had may have led to more stress, which can certainly play havoc with insulin dosing and bg control.

There are different potential causes and will take time to work out. Maybe different infusion sets, maybe pump settings, maybe stress from the situation. All could contribute to what you described.

Maybe pump isn’t best for you. Are you aware of smart pens and apps that do the calcs similar to pumps? That may give you some benefit of pump features, but better outcome.

What are your guesses on Key root causes? Infusion set failures, pump settings, carb counting, unpredictable work schedules, etc. Take each one and see what needs fixing, concentrating on one at a time. Eating the same foods + insulin dose, and tracking results.
Logging stress and activity level, and corresponding bg swings, etc.

Link for smart pen example, but I have not used.

https://www.diabetes.org/tools-support/devices-technology/smart-insulin-pen

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I also got on the pump last August. I had been on Dexcom for just under a year previously.

Two thoughts:

1: I know that the amount of insulin to correct a BIG high is a lot more than to correct a little high. I will just go with one unit, or 0.75 of a unit, or 0.5 every 20 minutes. The other thing I will do is exercise. Walk, exercise bike , even squats without weights. All will help to bring a stubborn high back into line.

2: the fear of a mega-dose and prolonged hypoglycaemic coma is I believe unwarranted. My understanding of the function of the T-slim function is that it’s designed in a way that prevents this error.

I have made changes to basal rates and insulin to carb ratios. This has helped me.

Good luck to you!

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Have you talked to your doctor about Afrezza for those gnarly sticky highs?

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Check your clock. Make sure it is correct and am and pm aren’t switched.
That happened to me once and I know it’s happened to others, we changed our clocks not too long ago and that’s when it happens!!

Ciq will fight against it but if your basal rates are different, as most of us have, it won’t be able to make up for it.

Secondly you can enter corrections without putting in fake carbs.

Just after hitting bolus, touch the units to deliver and it allows you to enter or change the calculation.

When your sugar is high, you will have insulin resistance. And you need more insulin than you normally would, so getting into normal range is the first step.

When I was setting up my basal rates, I would fast to get it right.

I set up nights first. In chunks. I would make sure I was in range at bedtime and watch if it changed, if I was low or high I would make adjustments. Once my nights were flat, I would do the same for morning. I would fast all morning until I got it right.
Then I would do the same for lunch. I would eat breakfast and dose for it then fast through lunch to get my basal rates.
The same for dinner.

I needed to do that because I couldn’t make my basal rates. Make sense from mdi or my previous pump.

Also make sure your weight is entered correctly. And after all that you can increase or decrease your carb ratio.

It took me 3 months to get it working nicely. And it’s been really good except for that short stint where I had my am/pm switched. And the occasional site failure.

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Diabetes is one of those illnesses that will burn you out from time to time. You need to focus on your mental health right now to get out of burnout. Stress makes all of this worse because the excess cortisol makes our BG go high and since it’s meant to be a temporary response to stress people don’t do well who are constantly getting too much.

Are your BG’s stable and in range when you are not eating or overnight? If they aren’t you will need to correct your basal rates first. Once your basal rates are correct or if they already are then you can change your insulin to carb ratio or play with your dose timing to get better BG outcomes.

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@Erbsnspices It is possible that your insulin requirements have increased, making the settings for Basal Rate, Correction Factor, Carb Ratio, and/or Target BG need to be tweaked to more appropriate numbers.

When I got my T:Slim we, endo, trainer and me, used basically the same metrics that I was using for MDI. The first week was amazingly good. And then, not so good. First added .1u/hour to basal rate which helped a bit. Then I experimented with extended boluses. I increased my body weight by 5%.

Finally I used two formulas based on TDD insulin to set correction and carb factor. This, is currently, correct.

But things can change. Last week, I was stressed by current events in my state and personal events. I was more insulin resistant resulting in higher BG and having to do higher correction doses.

I don’t completely rely on C-IQ to manage my BG levels. It is not a perfect system. In my opinion is is pretty good, but needs some intelligent oversight.

BTW, my TDD on the pump is lower than when I was on MDI.

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As you can see from the many comments, you are dealing with a multi-faceted problem. Solving this situation will take time, perseverance, and involve many distinct tactics.

You are not the first diabetic to run into this problem. This seemingly insurmountable set of circumstances is indeed fixable but will require you to persist. It can take months and even years but will bend to your determination!

Your willingness to own your diabetes and do whatever it takes can determine the speed of your quest.

I suggest that you start with the cognitive and emotional aspects of the problem first. Find a counselor who has dealt with this before.

Be kind with yourself. Treat yourself with same gentleness that you would treat a good friend or loved-one. You are worth it!

I suggest that you continue to interact with your peers on a site like this. Your instinct to post your long message was heathy and I encourage you to follow-up.

Welcome to TuD!

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I definitely understand your fears and frustrations!

When my blood sugar gets that high, it is often because I have forgotten to bolus for a meal. I have thought I did but didn’t push all of the required buttons to actually start to bolus. Check that you actually did bolus.

Another issue could be not being careful and honest about how many carbs you are eating. I sometimes get twice the carbs I bolused for because I ate a second helping of the same size and didn’t rebolus! You might be eating something new that you didn’t realize had so many carbs. I didn’t realize that coffee was raising my blood sugar in the morning.

Remember that lack of exercise — sitting around or driving in a car – can make your blood sugar go up if your pump is programmed for more activity at that time of day.

Adding more insulin to bring down highs is good. Drinking lots of water also helps. If my blood sugar is under 250, I find that exercising brings down my blood sugar faster than insulin.

Think one day at a time and focus on one or two habits. Post the one thing you are going to focus on for the week and make sure you are doing that. If you can write online messages to your doctor or diabetes educator, get them to recommend a habit to focus on. Write down what you are doing and the results. Checking to make sure you bolused, bolusing enough time before a meal, taking a walk after meals, keeping the device with your alarms right near you all the time, can make a difference.

Do short online meditation or hypnosis videos, play music, or go for a walk with a friend to get your mind to stop swirling around and around all of the problems and potential problems. I’ve recently joined an online real-time mindfulness group. Even going away a short trip might help. I find my blood sugar is better on a vacation because I am more conscious and proactive about my food and exercise and am less concerned about the other worries in my life.

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Hi -

I’m sorry that you’re having such a hard time. You might find things easier if you turn off CIQ and treat your pump more like a pen that calculates your boluses and corrections for you. Then you can do all the things you’ve already know how to do - test your basals, adjust your carb and correction ratios. Once you have re-established acceptable control, you can turn the CIQ back on if you wish. CIQ should make your life easier and if it doesn’t there is no reason to use it even if your endo thinks it’s the greatest.

I only use CIQ overnight - during the day I make all the decisions myself. You might like to go hybrid as well. CIQ is a tool that you can use - it isn’t your boss.

If you live near Boston and have good insurance, you might take a look at the Joslin’s DO IT program. It provides both excellent basic information and individualized instruction and support that might help.

Take care,

Maurie

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I’ve been there too on occasion. Should pay attention to your A1c mostly, is it good or worsening? Also “time in range”. Are these things at a acceptable number? If not, are they improving?
We all have issues, thus is normal! As long as you can move in the right direction, even gradually, you WILL get there.
Just came home from my 3-month Endo follow up visit, I complained about the exact same problem, that I decided NOT to try some “Tslim X2 hacks (tell the pump your weight is much higher, etc) would cause pump to be more aggresive combating Highs, because it might not be SAFE, especially at night when sleeping, because my X2 has been phenominal at night. I have pump set to alert me if goes over 180
I do bolus to get it lower.
I do believe that I have never been better equipped to stay in control, with the X2, G6, and my Apple Watch I can see my Blood sugar value easily.
I also stay in “sleep” mode most of the time.
My Endo told me he was very proud and pleased with my numbers, in range 95%, A1C 6.8.
Your Doctor should be helping you or contact your Tandem Trainer.

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The first week I had ControlIQ with Tandem was ROUGH - but after I switched it to sleep mode 24/7, it got much better. I didn’t do well with the auto boluses the pump gave me. I often override its recommendations because I know if I forgot to bolus for food, or if I will be getting some physical activity, etc. Now I sleep really well, knowing that if I go to bed trending high or low, the pump will get me back in range and I wake up right where I should be.

I think overall you need some tweaking to your rates/ratios before you give up entirely. Talk to your providers about this.

I understand the jealousy but remember that everyone is doing this their own way - you may not get perfectly flat graphs but if you are healthy, that’s what matters. I try to avoid looking at other people’s graphs because it is not helpful to me at all.

The idea that the pump can give you the entire contents of the cartridge at once is really unfounded. I would be willing to bet it’s user error that happened the few times people have reported this. I’ve been pumping for 25 years and have not had this problem happen! If anything, you’re more likely to NOT get the insulin you need because of a site issue or something like that.

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So, I probably know where the rumor about mega doses of insulin comes from; that is most likely not a pump issue. Animas is also out of business now. – In terms of your highs while pumping, I would like to suggest you try Lumjyev in your pump. It is a super-fast acting insulin that cuts the post-prandial highs by 1/3 or more (in my case). + Added to this post today after reading this article about the iLet fake pancreas. I get these same results with Lumjyev, so definitely worth investigating. It takes a lot of the post-meal highs away because it is so fast-acting.
https://diatribe.org/impressive-results-ilet-bionic-pancreas-pivotal-trial

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I am going to tell you how it works for me. It is part of the journey to figure out how it works for you.

There are to many variables to give simple answers. For instance the more insulin I take the more insulin resistant I get. It is an ugly cycle. There is a strong incentive to keep my BS in bounds. I use 75-130 as my range.

Here is a simple answer. Diabetes is a defect in carbohydrate metabolism. If my BS goes haywire there are three things to look out for. 1) Is infusion site leaking or full of blood 2) am I getting an infection 3) bingo what did I eat? Almost all my problems are what I eat. The only way I have found to coral the problem is to use a very very low carb diet. I shoot for 50 carbs a DAY. I suspect it really comes out to 75 a day but 50 is a good goal.

I could talk a lot longer but here is a summary: been using tandem for 8(?) years. No Basel or control iq. I control my pump. I have been using pumps since 1986 and have had no long acting insulin since then. My a1c runs 5.7 to 6.3 depending on if I behave myself. T1d for 55 years currently 74 years old. I have all my appendages, eye site and kidneys function.

Stay with the pump it’s not what is bugging you. It is everything else. Most important aspect of pump is Basel has to be right. Control will wax and wane, you are human and depression is not a symptom of just diabetics.

Good luck and never stop learning.

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Well, its a handfull. If a pump break, would me doing manual injections, would you feel more in control? I am type 2, diagnosed in my Late 30s, now age 78. On my meals, insulin is not desirable, in excess, i try to only eat 3 or 4 carbs a meal, take a typical minimum of insulin. I am sorry we all face challenges. I wa!k in nature most days, exercise helps burn sugar, and helps the mind, mood as well. I carry a kindle, make pictures on nature, flowers, nice bush, tree, sky, stream, insect, bird, etc. Send pics from kindle to sisters, daughter, friends, etc. Find short cuts to bring back a sense of control, eat the same two, three, meals that give you reliable results a while. Find time to enjoy walks, or gym, or home equipment. Best of luck. Jim

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Lots going on here. I read all the advice given by others. I may have missed it, but I am curious how long you have had Type1 and how long you used injections before switching to pump with control IQ. Also were you stable with good HbA1c values before switching to the pump?

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If you get sick of the pump, perhaps try an InPen Smart Pen. This not a Kwik insulin pen. It is an insulin pen that does your calculations for you and allows for 1/2 doses of insulin. Another suggestion: Read Dr. Richard K Bernstein’s 2011 edition of the book, The Diabetes Solution. There are also his websites and you tube videos you can look up.

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You also might try the other ultra rapid insulin FIASP (fast insulin aspart, Novolog with Vitamin B3). For me, Lumjyev wasn’t any faster than FIASP and caused excessive irritation at infusion sites.

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I’m fortunate in that my endo lets me do just about everything myself, so I set up my pump basals, carb ratios, correction factor, etc. i also get to use different insulins just to play with them (note: I use a t:slim X2 pump with CIQ turned on and have sleep mode turned on just for sleep hours, not for the rest of the day.

Here’s my brief review of the insulins I use, noting that everyone is different and your mileage may differ greatly:

  • Humalog & Novolog: no difference. I use the dame pump program for both with equal results.
  • Fiasp: I have a separate pump program for it and I get great results on days 1 through 3. As soon as it’s day 4, it requires 2X the insulin for the same results, and big highs take about 4-6 hours to fix. The day 4 issue is clearly due to inflammation at the cannula site.
  • Lyumjev: Another separate program. Fast as a speeding bullet, and handles big highs pretty well. But I get mild pain at the cannula site after two days and it starts losing effectiveness similar to Fiasp.

Of the four, Fiasp is my favorite, but I have gone back to Humalog due to cancer surgery and chemotherapy which cause me to eat only about one-third of what I used to eat, so I don’t even do meal boluses. I’ve lost 60 pounds but I don’t recommend CRS/HIPEC surgery as a good diet. Now I have to eat a lot of high/carb foods just to maintain my weight.

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Not sure if this was an open question or for anyone.

I have been type1 for 35 years. I was diagnosed at 21. Hospitalized with dka. A1c was 9.5%
I started on regular insulin and nph. I was never in good control but I didn’t crash a lot either. I had a meter but it was too big to carry so I usually only tested morning and night.
My a1c was in the mid 7s
After a few years I got a portable meter and I switched to ultra lente and humalog. My control got better. My a1c was 7% consistently, but I crashed more. I was testing 3 times a day.
Finally about 20 years ago I got a pump and it allowed me more flexibility and I was confident enough to run a marathon because I had my lows figured out. On my first pump I was running a 6.5 a1c but it jumped around a lot.
My doctor told me I was insane, type1 diabetic running a marathon was suicide. But I was in contact with a lot of runners at that time and I knew a few T1s who had managed to run it so I wanted to try.
I ran three marathons in all. But I gave up running because of a unrelated foot problem. Dupuytrens didease. I still run but only short distances

Finally I added cgm to my pump and two years later I switched to tandem dexcom hybrid loop and my a1c has been under 6% consistently. I was able to get a5.8 a few times with out having any symptomatic lows. I can get under 5% but it is very tough and it’s not maintainable for me. I’m happy with 5.9, or so and I feel healthy.

I’m constantly tweaking my pump to get better control. I also started mastering diabetes diet, which also helps a lot.
Finally I added 10 units of lantus to my pump to deal with my sites going bad.

As far as complications go I have been fortunate, even with poor control early on, I’ve avoided major complications.
Some say dupuytrens is diabetes related. Jury is out. My dupuytrens is mild in both hands and feet my feet hurt my hands don’t.
I also had frozen shoulder back when I was not in good control.
But my eyes are good my kidneys are good I feel like I got35 bonus years. And I’m wanting 35 more.

That’s where I am today, but I’m constantly looking for something better. Looking forward to tandem patch pump.
Onward!

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