I’ve been on an insulin pump since 2012 - first Animas Ping (which I LOVED) then a short disaster with Medtronic (my body developed a systemic allergy to cartridge components which contaminated the insulin) and finally Tandem TSlim:x2 which I need to switch out infusion sites every 1 1/2 to 2 days and cartridges every 2 1/2 to 3 days. I was on MDI before that since my diagnosis back in 1993.
Lately, I am having nothing but problems with the pump - multiple calls to Tandem don’t result in any solutions except replacement cartridges and sites - and I am sick and tired of this roller coaster of sites that don’t absorb or cannulas that bend (and no, it isn’t my technique - this is new over the last few months after years of no problems) or insulin that goes bad in the cartridges in 2 days and super highs that end up with ketoacidosis. I use a Dexcom and I do not use BIQ or CIQ because the timing delays on insulin response (both pump related, Dexcom related and insulin related) meant I was ping ponging between dangerous highs and dangerous lows. I have been much more successful manually using the pump - up until now when nothing seems to work. And yes, we have played around changing bolus and basal rates - I have 6 different basal rates with needing only half the amount of basal insulin overnight as during the day. So, either I am developing another allergy or sensitivity to the components of the pump that go into my body or hold the insulin, or, as I suspect, with having to change sites so frequently, I am developing absorption issues because everything now is incredibly erratic. Even my A1c is struggling - from being around a steady 5.7 to 5.9 (last 5 years) to increasing into the mid 6s over this last half year and TIR decreasing from 90% to 70% and I am fighting for that every hour of the day.
I think pump therapy - at least the pumps which are available - are no longer working well for me (God, I miss my Animas Ping!) . I have debated switching back to MDI for a while and after changing out 2 week old insulin for new, 2 cartridges and 4 infusion sites in the last 40 hours and still getting lack-luster response (while my daily insulin needs increase from my usual total of around 18 units a day to 26 or 27 units a day with nothing else changing), I am seeing my endocrinologist next week to figure out how to switch back to MDI. I am tired of fighting ketones and feeling like crap, I am tired of not being able to eat (I have been low carb for years as well) without having a quick rise (and yes, I prebolus) and no fall back to a good range - unless I use a syringe and inject insulin - and I am tired of being afraid of not having enough supplies with me when I am out of the house for more than 2 or 3 hours. This is how the Medtronic pump started to go bad for me.I am fine with injected insulin but what is the point of wearing a pump if I am having to resort to using injected units of insulin?
So - that’s the rant over and thank you, but I don’t need advice on how to get the pump working better nor success stories about how well you are coping - I used to be there too and I am experienced enough to know that something is wrong now - but I would be interested in hearing about how people have successfully transitioned to MDI, what is working, what isn’t working, how you are keeping track of IOB (if you are), any apps or advice that help or even smart pens (although I am not interested in the InPen since it also uses a port and I want to get away from having anything other than the CGM on site).
Thank you for any information you can share especially with regards to how you handle different daily basal rates on the available long acting insulins.
Kathryn, I can’t answer most of the questions that you ask but I still wanted to offer some encouragement. I’ve used insulin pumps for 37 years now with some short spells of MDI just to refresh that skill. I share your positive experience with the Ping pump. I currently use an old MM 722, a Dexcom G6, and DIY Loop.
My last MDI break was about three months long back in 2016. I experimented with Tresiba and learned that it’s a great match for me. I learned that it takes several days for its “steady state” to settle in but that it’s very flexible as to its exact schedule.
I only took it once per day in the evening but I forgot to take it a few times and delivered it instead the next morning. I was surprised that it didn’t seem to matter and my blood sugar levels remained undisturbed.
I really think your recent troubles are likely linked with allergic reactions and/or negative interactions between insulin and infusion sets/reservoirs that interfere with insulin absorption. The dramatic increase in your insulin total daily dose combined with the degradation of your A1c and TIR support this idea.
I congratulate you for making the needed observations as well as your willingness to shake up your treatment regimen. Good luck going forward; I am interested to read what you discover.
Kathryn, your story sounds very similar to mine. I was on a pump for 91/2 years after MDI for not quite a year. I was 57 when I was diagnosed with type 1 so this old dog had to learn new tricks. My first 9 months was a roller coaster all the time. I then welcomed the pump and it was good until it wasn’t. Too many times things went wrong in the middle of the night, special occasions with family or just whenever. It got old, but the pump, my dexcom (which has and is a good teacher) and this forum educated me on how to manage better. I switched back to MDI a little over a year ago. I don’t regret this at all and am glad I did. I started basal with what I was using in the pump and adding 20 percent. I use tresiba once a day and basal is pretty steady. I kept the same carb ratios for bolus since it was the same insulin (humolog) that I used in the pump. I have the same control as I did with the pump. A1C this last time was 5.6 which is what I usually experienced with the pump. The difference is I am calmer when things go wrong which happens sometimes to everyone. The variable of the pump is gone and the only time I have experienced ketones was when I got sick one time. I threw ketones quickly with the pump. I sleep better because I feel safer.
My pump and supplies are in a drawer and someday I may go back but not now.
I hope this encourages you and I feel certain that whatever you decide you will figure it out.
Thank you! This sounds exactly what I am facing and hoping to deal with. I appreciate the details about insulin amounts. Did you start right away with Tresiba or did you transition to tresiba? I am just so tired of dealing with the uncertainly!
This level of problems definitely warrants dropping the pump and returning to MDI. Pumps should make things better, not worse.
Simpler systems are easier to trouble shoot. Once you have your footing and have resolved/identified the source of some of these problems, you can consider building a more complex set of tools again. Until then, its syringe insulin for you.
When I first dropped the pump, I used a vial of Lantus that I had for emergencies in case
my pump had problems. At my next endo appointment I asked for tresiba.
I’m on MDI and will vary my Lantus dose based on my plans for the day. Lantus and Basaglar are 22-24 hour insulins, Tresiba and Toujeo are 40-something hour insulins. In order to change your basal on Tresiba you’ll need to start 3-4 days ahead of time so it really isn’t practical. Check your insurance plan’s formulary for what is covered before you go to the doc.
I haven’t been on a pump and I am not a doctor. I think Dr. E and P say you can replace your daily basal with Lantus 1:1. Your daily basal is shown on your Tandem Overview report in the Insulin Summary box.
Your doc may want you to try a different infusion set or a different short acting insulin first. The Inpen doesn’t require a port, you use a new pen needle for each injection. If you go with MDI ask for BD Nano Gen 2 pen needles. The Novofine plus are better but Novo can’t make enough to meet demand.
I am sad to hear you are having so many issues with your Tandem. I am having similar issues with Omnipods. .
I am only staying on a pump because I have DP. I really want to be able to have more insulin in those early morning hours. But I can tell you to nurse along my pump working and to offset when it doesn’t work as well, I am doing more MDI than not. All my bolus is from MDI now. MDI is fine, not better really to me as it’s just not as precise. When my pump was working well, I did quarter and half doses as needed and I have a tendency to round up with MDI or include extra.
With my pod problems my A1c went from 4.9-5.1 to 5.3-5.4. I’ve still manged to stay 96% TIR from a 98-99% TIR, but with way more work being put into it to do so. I have some highs now and I really never hardly did before and most of it is from DP and waking up to 160-190 and then I know a pod stopped working as well during the night. When I change it out I am back to waking to more normal numbers. I can at least stop and recognize a pod not working as well during the day and change it faster.
My pump is pretty much set at minimum dosing except for those early morning hours. I do a Lantus shot twice a day. I was surprised that it immediately required less basal insulin dosing. I figured if I replaced 10 units from my pump, I would take 10 units split, but I only take 7 of Lantus. 4 units in the am and 3 units in the pm. That has worked well to not completely go out of whack when my pod isn’t working as well as it should. 17 total units of basal for me. They say you might need more Lantus when you switch from a pump. But I think the less needed is solely from the absorption issues I am having from my pods.
It wasn’t hard to switch as I just dialed down my settings on my pump when I started the shots. It did take a couple of days to figure out the 4/3 split. But the ease of partially switching meant if I was off, I wasn’t off by a lot? Extra bolus insulin needed, need more Lantus, going too low for no apparent reason, eat half a cookie type thing and lower the dose.
I had used Lantus when I was doing MDI and I notoriously would have drops at night and it would run out before the 24 hours, so I figured splitting the dose would work better in my case and it has. It peaks around 6 hours and I chose 11am and 11pm as I’m more of a night owl. That 11 pm helps to hit around those DP morning hours too.
Two things have highly pushed me to not totally switching to MDI yet or to even a tubed pump yet. DP, obvious that, but also exercise. I swim long lengths of time and I do better with some insulin. I used to suspend my insulin for a half hour before swimming for an hour, because initially I will drop. But now because of the partial MDI, I have to start a little higher since I can’t completely suspend all my insulin because of that shot. Then I need full dose starting after an hour of swimming because I will shoot up at that point. I can still do that now. On total MDI it will be a lot trickier to figure out and not work as well.
Thank you for this information. Yes, I know what my basal rates are - right now I have 6 different basal rates as my overnight use varies considerably from my day time use. When I was using Lantus before I started on the pump I divided the dosage as well with a lesser amount overnight and a larger amout during the day. Different infusion sets are not going to make a difference if the problem is a reaction to the plastic canula or the plastic containing the insulin. I am not able to use trusteels as I get these huge hematomas from the needle moving around under the skin. I will certainly be asking my endocrinologist about the BD Nano Gen2 pen needles as well as the InPen. Thanks again
Thank you - all of this is very useful information! I can appreciate your concern about DP - I used to set my alarm for 3 am to give a small bolus at that time to counteract the Dawn Phenomena and I did appreciate not having to do that any more with the pump. I find as I have got older I now generally need to get up around that time anyway to go to the bathroom so I suspect maybe it won’t be a problem with taking that bolus when I go back to MDI, lol!
Two of the things I am debating is how and when to split the Lantus dosage. I have a dexcom now that I did not have when I last used MDI and I really want to time the shots so that I can have a lower amount of basal at night and a higher amount during the day so possibly coordinting the higher dose overlap to ensure it happens later during the day. At least I can do a better job of tracking the timing now than when I was using the glucometer every two hours every few months to ensure my settings were good.
That is an interesting idea using a hybrid system between the pump for your bolus and the lantus for a basal. It is so important to have some insulin on board so I don’t go into ketoacidosis (which happens very easily and quickly) and yet avoid going too low. What a tightrope!
Yes, getting the boluses right will be a challenge since like you I use lots of micro-dosing to stay on top of glucose levels, and with high sensitivity as well I seldom have whole units of insulin delivered. I do have a humalog Kwick pen in half unit doses along with a Lantus pen for my emergency back ups if the pump failed so I am hoping I can get things close enough by half units rather than whole units and try to balance the whole thing out.
Thanks again for this useful information and good luck to you as well.
Great link! It is good to see all of this in one place like this - very useful! Thank you so much for posting. I am sure others will also find it of use, too :-).
I have nothing to add other than I have taken several pump breaks over almost 30 years of pumping. It’s good to have that “challenge” of figuring something out - not that we want diabetes to be a challenge, but it keeps things fresh. I am going to be taking a pump break likely next week and will see how long I feel like going.
When I have done these in the past, I have just closely followed my numbers on my CGM. I think splitting my basal with both Tresiba and Lantus was helpful, so I’m going to try that again. I appreciate all of the advice above!
Hi Kathryn: I sympathize with you, since I’m pretty sure I will have to go back on MDI within the next few months. I’ve spent the last 6 years having problems with infusion sites and now, my old reliable sites are starting to become zombies as well. I’ve always been very diligent about rotating my sites and trying to maintain as much time as possible between reusing sites in my cycles, but even that doesn’t seem to make a difference. Almost 3 years ago, before I got my Tandem pump, I went on MDI for two weeks and aside from struggling with my overnights, I kind of liked it. It was really nice not to have things (except my CGM) attached to me and I could roll over in my sleep any way I wanted without worrying about interfering with my infusion set. I also liked knowing that an insulin pen in my purse was all that I needed, rather than extra infusion sets, etc., in my car in case I accidentally ripped a site out or it inexplicably stopped working. My endocrinologist told me that he thinks the CGM is more important in terms of BG control than the pump and that when I’ve had enough of the site struggles, he’d support my transition to MDIs. The pump educator nurse, who suggests changes to my pump settings when needed, will also help. The program I used for the 2 weeks I was off the pump was BolusCalc from the Google Play Store. I’m Canadian and need my values to be mmol/L rather than the American scale. If you’re in the USA, you should have a lot more choices than I did from the app stores, but still, BolusCalc worked well for me. I started out with Lantus when I went back to MDIs, but had just switched to Tresiba 2 days before my new insulin pump arrived and the pump nurse convinced me to give it a try. I do really like my pump and if I had reliable infusion sites, I’d keep using it, but my body does develop scar tissue quite easily, so I’m pragmatic about the almost certainty of going back to MDIs in the near future. My fast acting insulin is Novarapid, but when I go back to MDIs, I’m going to ask my endocrinologist if I can use Fiasp. I hope all goes well for you and that you have some peace in your life if/when you make the switch.
Hi! I switched back to MDI a few months ago after developing an allergy to my Omnipod. I am uninterested in going back to a tubed pump so for the time being, MDI is fine with me.
I am not sure what you mean by the InPen having a port…? I use the InPen, and the app that comes with it is absolutely invaluable for IOB and calculating boluses. I have no port. And the app has made the transition back way easier than I expected after 20 years on a pump.
My basal insulin dose (Tresiba, which is vastly superior to Lantus, what I used previously) is determined by my overnight needs. I need a lot less at night than during the day, so I increased my I:C ratio at meals to make up the difference. I also know that between lunch and dinner (and sometimes 3 hours after dinner) I will need an additional small bolus to cover that time period. That’s when my basal rates on my pump were always the highest, so it makes sense.
If you make the switch, I hope all goes well! Just know I give the InPen two thumbs up; and no port!
Thank you Sarah! Again, more very useful information. It seems like your basals are similar to mine so I like how you’ve adjusted your I:C ratio to compensate . I appreciatae the further recommendation for the InPen - keeping track of IOB is my main concern. I appeciate this.
Thank youm PYBM,
Actually, I am a dual citizen originally from Canada and was living in Canada when I developed diabetes so understand the Mmol/dl - I actually still feel more comfortable with them but have, of course, adapted to the US style. One of the things I found wonderful about being diagnosed in Canada was how much focus was put on eduction and support from having a dietician, an endocrinologist and a health hurse available from day one and ongoing followup with the Diabetes Education Support programme at the local hospital.
I can definitely see advantages to not having the pump and again appreciate the recommendation for BolusCalc. I have Lantus and humalog available right now but I suspect Tresiba is in my future. It isn’t fully covered by my insurance but it is still a reasonable co pay - I just need a prior authorization from my endocrinologist. I’ll have to see what other loops they will make me jump through.
Good luck with your own switch and I will let everyone know how it goes for me.
Hi Kathryn. I’ve been going through something similar since April. Ugh!! In my case my cousin, also plagued by multiple autoimmune conditions, mentioned this as a thing that she has:
I’m pretty sure I too am experiencing this, as my symptoms are all mentioned in the list. I too needed to give the pump stuff a rest, and came up with this chart to work from while figuring
