FUDiabetes

Study: Insulin Pumps Decrease Quality of Life and Increase A1c in CGM Users

mdi
pump

#21

Heh, this is why a week of pumping is not enough to really get a feel for it. This is what is taught, but not something I have done in practice since my very beginning days. Like changing a lancet every tine you test, or putting a new pen needle tip on every time you inject, or always using alcohol on the injection site and never injecting through clothing… I’d be curious how many long-term pumpers actually change out every pump component every time an infusion set fails.


#22

This is basically catastrophic for me. I’m completely worthless at 428 at work, and a drop to normal range within 1.5 hours would leave me feeling emotional and terrible.

On MDI, I haven’t hit that range for… I’m honestly not sure how long. If I do end up in the 300 range, it’s exclusivley at night because otherwise I’d catch it first. Lacking basal because of a faulty site created so many problems on a pump for me. A high because of not enough bolus doesn’t seem to create as bad of a reaction as not enough basak.

I’m really glad it works for those who use them, but I have never regretted using MDI, even when I was using Lantus.

I think scar tissue is much worse with pumps as well. Even though I haven’t pumped in a few years, I still cannot inject into my thighs. The insulin doesn’t work (no visible scar tissue, but it’s still there). Before using a pump, I had no noticeable scar tissue despite having been on MDI for 13 years.


#23

Sorry I was tired af when I posted that. Using a pump WITHOUT a CGM is super risky. I feel like no pump should come without one even if it is not doing some gimmicky automatic mode. Mine technically did, but the accuracy was terrible on Medtronics 530g enlite afaik.

@Jen the pump I had wouldn’t let me reuse stuff. If it did it’d fail on the part where it would prime the infusion set… So then I’d just waste more.


#24

In my estimation pumps are just inherently risky… they just keep pumping rapid insulin into your body, and once it’s in—it’s in and it’s acting rapidly whether you like it or not… and if they stop working for any reason your insulin is rapidly disappearing and you’re rapidly headed toward an emergency. I get that there are certain benefits to them in terms of how adjustable they are, but I’ll never be convinced that less risk is a benefit to pumping


#25

I also agree with the other Jen (@Jen) if you absolutely can’t get control tight with MDI, even with a cgm, maybe a pump may be a better option… But not for everyone still. It’s a very complex individual thing, but due to newer fast and long acting insulin, there’s so many options to try first if one way didn’t work


#26

It’s interesting that the latest and greatest treatment seems to be pumping “untethered” with tresiba… so basically they’re using tresiba for basal and using their pump to simulate an mdi regimen…

Doesn’t appeal to me at all—- but these are like the most die hard of pumpers that are doing this- they love their pumps so much that they won’t part with them even if they’re turned off— and even they are recognizing the benefits of getting away from the pumped basal at least to some extent


#27

There is no right answer to this discussion. Each person needs to do what works best for them.

My daughter, who has had T1D for 13 years, is on MDI and the Freestyle Libre and it works for her. I was on MDI for 41 years before I went on the pump and CGM. It has now been 4 years and I love it. I never pressure my daughter to go on the pump because I know that she is the type of person who would do better on MDI.

The pump works well for me because I am very insulin sensitive and I take fractions of units of insulin. My slow digestion works well with extended boluses. I also sugar surf a lot, so by giving myself 0.15 units I am able to nudge my BG down a bit when it’s drifting up (can’t do that with MDI). My A1C is much better on the pump, but that is probably because on the pump/CGM I have paid much more attention to staying in range than I ever did on MDI. I have never had any problems with the pump other than the odd failed pod, but I change it right away because it beeps really loudly! I have no scar tissue after using the pump for 4 years, but I am really careful about rotating. In 45 years of having T1D I have never been in DKA.

Everyone’s story is different and there are so many combinations of insulins/devices these days - soon there will be even more… Each person needs to do their own research and figure out what’s right for them.


#28

When we were pre-puberty the results on MDI and pump were the same.

In puberty, though, things are very different. We went from 5.5 to 6.5 pre- to in-puberty, and we are hanging on by the skin of our teeth. Pre puberty, MDI was quite fine. But now I can’t imagine how we could do with MDI: I am guessing we would probably be around 8.0, unless, maybe, we radically changed the way we live—and even then.

That is why I am saying that there are some diabetes modes where MDI is great, and some where a pump makes a big difference. We used to be in one, now we are in another. You have to know where you belong in order to make the right choice.


#29

Was there a period that the pump performed really well before the hormones made everything all crazy? Or a period that you’ve tried tresiba since they have? Or is it possible that some of the chaos might be due to the pumped basal itself? It seemed like all the hormonal problems coincidentally started simultaneously when you guys started the pump… just food for thought

Not trying to be a know it all because I haven’t used a pump… but I’ve seen a lot of people struggle with pumps and do fine with modern mdi, and only a few the other way around, yet they become attached (no pun intended) to the pump… and end up ripping their hair out while being certain it’s making their life easier


#30

I wish MDI worked better for me than it did. Being subject to constant insulin sensitivity changes (thanks, hormones!) makes the versatility of basal via the pump the safest option for me right now in my life. I prefer to be untethered…I would absolutely LOVE that lifestyle again…but it’s just not on the table with the hourly/daily changes I see. It was a terrible feeling to know I had (way) too much basal in my system via injection and would have to ride that out until I could make the next basal change…and even then it was just a best guess. That’s a worse situation for me than dealing with the cons of the pump.

Ultimately, my biggest preference would be to not be T1D. But since that’s not up for debate, I’ve got to pick a pump as long as CGM works for me. If CGM didn’t work with my body, or I could no longer afford it or whatever, I’d go back to shots regardless. But that’s just my personal boundary on the topic.

Living with the dynamic insulin needs that my body has requires a pump. But that’s not because pumps are God’s gift to Diabetes. It’s just because that option offers me something that I cannot get with shots. To each their own. And I am envious of the MDI’ers. Truly.

It took me seven years to be proficient with diabetes and shots. I’m five years or so into pumping and I think my seven year proficiency rating will likely hold true for me for pumping as well. That’s the part that makes this article look fairly asinine if I understood it correctly. Maybe I missed something.


#31

I just had to find the right insulin to realize my needs weren’t actually different day by day and hour by hour, although I had been certain that they were until that point… that’s why I’m such a huge fan of tresiba, it taught me so much and made me realize my management didn’t need to be as complicated as I had come to believe


#32

That might be a benefit of being male, too, though. Not starting something here, but just pointing out that that might not apply across the genders.


#33

Maybe… I wouldn’t know… I’d venture that if I was female I’d be curious enough to give it a shot. I know @Cynthia_Rogers and several other ladies who’ve ditched the pump for tresiba, and several who’ve gone from Lantus to tresiba. And I only know of one, who’s a participant in this thread already, who gave it a shot and then went back to the pump


#34

We had a trimester and a half on the pump before we hit puberty. The first two quarters on the pump were excellent, although not significantly better than MDI. When you don’t have peaks except for poor dosing, life is easy.

But, as puberty developed, things went progressively more south and peaks became crazier. At that stage, the flexibility of the pump became more and more valuable.

One thing I will say, though, is that it seems to me that MDI with Lantus/Basaglar was a bit more forgiving than pumping for drifting basal levels. It is somewhat hard to say because we have had so many changes in sports routines… But it appears to me that, for us, Lantus was a but more forgiving than pumping Novolog. It could be however simply due to changing sports routines: we ran into significant ear problems at that time, and my son’s swimming practices became much more irregular as a result So that could well have been the cause of more variable basal.


#35

I would be curious to give it a fair trial at some point. I’m not in a position to do that right now (not enough safety nets for the people/things I’m responsible for to try a new regimen). I’m sticking with the devil I know instead of the devil I don’t so that if/when I try it, I can really give it a fair shake.


#36

I’m female though and I do fine on admelog and basaglar …and somehow even with like the worst period in the universe my blood sugars aren’t too bad. I usually spike into the 150’s no matter what post meal the night before it starts(which just means more careful eating) and go slightly low the entire period so I get to eat more or take less insulin /adjust my insulin to carb ratio slightly like 1:20 instead of 1:15. Based on more frequent testing it works well? It’s not major spikes/lows and very little adjusting is required.


#37

Would you mind adding your experience to the women’s survey for FUD? Sounds like a good amount of experience to add!


#38

@Sam: If you don’t mind my asking, what makes Tresiba so different than other long-acting insulins?


#39

I don’t really know the science. In general it lasts much longer. In my experience it took me from believing I had varying basal needs to realizing I didn’t and that the right insulin makes all the difference, which was a huge blessing.


#40

Yeah, I’m “lucky” in that I have never really felt changes in blood sugar. If I have a deep low or an extended high, I will feel it. But in general, blood sugar variations really don’t have much impact on me. Which is good in that I can do maneuvers like this, but bad because I feel like achieving tighter control would be easier if I could sense what my blood sugar was doing (in general).

I have never used a Medtronic pump, but I would find that extremely annoying. All the pumps I’ve used allow you to change just the site, or just the cartridge, or both at once.

I’m not sure anyone has ever said using a pump is not risky. For me, it was the first thing they covered in pump training. Before going into any of the settings or menus, the risk of DKA and the need to test regularly (this was before CGMs) and respond immediately to unexpected highs was outlined in detail. In terms of pumping rapid insulin into you and once it’s there it’s there, you can suspend a pump at any time, which is one major advantage over injected basal for some of us. For a lot of people, there is less risk of highs and lows in general, and less risk of long-term complications with a lower A1c and more time in range, and less risk of negative psychological effects (if they want and enjoy using a pump). But really, in order to actually go into DKA on a pump you basically need to be neglecting your diabetes or have some other complicating circumstance going on like dehydration or infection or something like that… If you are testing every few hours and respond quickly to an unexpected high with an injected correction and follow the steps you’ve been given for monitoring and adjusting and seeking medical assistance when appropriate, your risk of DKA is not huge. I mean, doctors weight the pros and cons of treatments they prescribe and would not prescribe pumps if thier risk outweighted their benefit. Before CGMs, the biggest risk was if something happened to delivery overnight while you slept, you could wake up in DKA. That used to really freak me out before I got a CGM. Since getting a CGM, I don’t worry about it since I’ll get an alarm if my BG starts rising overnight.

The untethered regimen does not use Tresiba for basal coverage. It uses Tresiba (or Lantus or Levemir) for a portion of the basal (say 25-50%) and uses the pump’s basal rates to make up the remaining 50-75% of the basal needs. This allows all the features of the pump to be used (variable basal rates, delivery suspends, temporary basal rates, extended boluses), but provides protection from DKA if a site goes bad or someone needs to disconnect for hours at a time for exercise.

Even among women, the effects of hormones on blood sugar varies a lot, just as the effects of all hormones on blood sugar vary a lot. If I get acutely stressed, I can literally watch my blood sugar rise. Others see no meaningful impact of stress on their blood sugar. I generally have a large impact of hormones on my blood sugar affecting about two weeks of every month. But this past summer and early fall I had some health issues that were affecting my cycle, and for two months I had largely flat insulin needs. I was hoping that would last, but unfortunately we’re back to seeing huge increases in insulin resistance this month.