I can’t seem to make up my mind


#1

Over the past two years I have taken multiple pump vacations. Primarily because I was having site issues, but also because I was sick of wearing the little bugger! Since December I have been on tresiba & novolog. Basically since December I have felt sick: nauseous, ear aches, exhaustion, etc I have no idea if it’s just a coincidence or caused from the tresiba. Anyway the past week I have considered going back on the pump. I have way better control on the pump, but part of me still wants to be pump free. I have no idea why I can’t decide. Any one else go through this? I kind of feel like a crazy person. Any ideas on how to solve this?


#2

Nah, usually when I have to make a swap, its because I HAVE to make a swap.

You know that this year has been a real pain for respiratory flu and stuff? I know three perfectly healthy people who had pneumonia. I was sick for 6 weeks. Completely and utterly exhausted. You sure that stuff isn’t still going around your area? Its been going round and round here since the fall. Its miserable. It clings to you for weeks or months.


#3

Yes that could be it. However I have decided on returning to my pump. I think overall this is the best choice for me. This morning I ordered the omnipod! So I am excited to try it out!!! I still have my old minimed veo to use if the pod system doesn’t work well for me.


#4

You flip a coin - heads no pump - tails you use the pump

you examine your reaction when you first see the result - are you disappointed or not?

this is not as silly as it sounds - I been using it for decades


#5

Thanks for the advice! I think I may need to start to do the coin toss/reaction test!


#6

It is always better to choose the one with which you have better control. But one of the worst things you can do is continue switching between pump & non-pump, that will make it very hard to tweak your dosages & treatment. I think that for most people the pump is better, because it allows you to do the appropriate dosages anytime, anywhere, and your body normally prefers and processes small & continuous insulin better than large amounts.

Yes. Pick the one that works better for you, and stick with it so that you can tweak it as much as possible. Repeatedly switching will prevent you from ever getting the best you could be getting.


#7

I went off the pump for a whole year only because I wanted to lose weight and figured I’d have to control my eating more rigorously. It worked to lose the weight, but my bg’s suffered, which meant my body suffered. I went back on the pump and wondered why I went off it for such a long time. I won’t voluntarily go off of it again. I’ve lost weight while using a pump, after the year w/o the pump so now I know I can muster up the willpower to eat better, pump, and have better bg’s which translates to better health and perhaps, longevity. Long live the pump!!


#8

Yes I agree with all of you. I am going back on the pump. I plan on not backtracking again. I am going to remind myself that I had over 16 years on MDI and then over 13 + years on the pump. My pump years were much healthier and happier. Not sure why I got on this flip flop but it is crazy making.


#9

Well,when I went off it, it seemed like a good idea at the time…until it didn’t. I think I know how you feel, Julia.


#10

Have you tried any other basal insulins? I read about someone once who had similar symptoms to you on Tresiba and switched to Levemir. Personally I’ve found that taking 2 doses of Levemir a day is superior to Tresiba due to the ability to make basal adjustments more like a pump.


#11

I have never tried levemir before, thank you for the suggestion. I have seen a few others who have had similar experiences to me with tresiba. My family doc said that some people react this way to certain basals, that it is not as uncommon as you might think. However my endo didn’t suggest she had heard of it?


#12

As for the control issue, a lot of it is just learning how to emulate pump capabilities with the insulins that are available. For example, my basal needs are not the same every day or even day and night, so a 24-hour basal like Tresiba wasn’t a good solution to maintain the same level of control. Regular insulin, even though it sounds antiquated, can mimic square wave/extended boluses or temporary basal increases to an extent. Pens that dose in half units help too. Basically a lot of what can be done on a pump can be done with MDI, but most people are simply told to use disposable pens that can only dose in 1 unit or more, to take the same amount of basal once a day and to only use rapid-acting insulin for meals and snacks. I do think it’s simpler to use a pump, aside from site issues, since it’s just 1 insulin to deal with that can be manipulated through software, but a lot of the control differences between pump and MDI have more to do with how most people use and think of MDI vs. what can actually be accomplished.


#13

I couldn’t agree more with this sentiment. I’ve concluded that the one factor that is the single most important one with diabetes glucose control is the human software. It’s not the latest whiz-bang leading edge systems that make the biggest difference – it’s the motivation and knowledge of the person with diabetes that matters most.

Having said that, I do think that a good working CGM is crucial to affecting good control. Fingersticks could substitute but doing enough fingersticks to produce the necessary data sufficiency is a daunting task.

A thorough working knowledge of how insulin works in your body across the spectrum of meals, exercise, sleeping, and stress is the key ingredient to the magic of good consistent control.

Using a variety of insulins to glucose metabolic needs is doable. I’m convinced of that. While my experience with MDI is much thinner than my pump experience, I’ve done it enough to know that I can do it pretty well and know I would get better if I stuck with it longer.

I used Tresiba, Apidra, and Afrezza for three months back in 2016. I had good control but not quite as good as I did using a pump. If I was forced to do this again, I’m sure I would get better.

Thanks for including the link to the Tresiba user’s failure with this long-acting insulin. Her experiment to stop Tresiba for a few weeks, observe the symptoms fading, and then reintroduce Tresiba with an immediate return of symptoms is persuasive evidence that Tresiba was the source of her problems.

The skepticism of her doctor and his reluctance to believe the evidence right in from of him troubles me about doctors in general. I’ve witnessed, time and again over my 35 years of living with diabetes, clinicians’ lack of respect for the reports that patients bring to them.

The thing that comforts me about this is my conclusion that the patient’s deep and long experience with their diabetes is well beyond the physician’s comprehension. How could any doctor know what I know after living with my diabetes 306,600 hours? I just wish they had a clearer idea about the extent of their knowledge – in other words knowing what they don’t know. Doctor’s do have their value but my perspective about their usefulness has become more realistic over the last ten years.


#14

Thank you for that link! She is describing what I am/was feeling! Wow! I have stopped using tresiba now, and will not use it again. I have told my family and friends to hit me over the head if I try it again. My gut tells me it is the tresiba, even though I have no evidence to prove this. Weirdly enough my husband gently suggested that my mood may have been impacted during this too… oops (grumpy wife).
I like the idea of listening to my body and knowing what works for me. I have been diabetic for 30 years (well this april it will be 30 years). This experiment with tresiba has really had me question how I manage my diabetes. I wanted so badly to be on MDI, to have a break from my pump. So I tried multiple times, each time with tresiba I would quit because I felt ill. However I was told it couldn’t be the tresiba. I’m not sure why I started to question my own knowledge, but I did. I am hopeful that within the next few weeks all of these weird symptoms will be gone and I will feel back to normal.
Thank you all for the responses. I really value this community. It is a space were I feel safe to discuss my struggles, concerns and even my successes with diabetes.