Reflections on starting a pump and related issues

Type 1 and LADA
1

I recently started pumping for the first time. I figured writing about my experience might help others navigating the process, plus provide a nice opportunity for me to reflect on it, too.

A little background on me, this may be of interest to some, but others may prefer to skim over. I was diagnosed a dozen years ago, with late, slow-onset (long, drawn-out honeymoon) Type 1. I was briefly on a sulfonylurea, within a few months began basal insulin (Lantus) and within a year began bolus insulin (initially Humalog, later Novolog). My body has always coped with my diabetes well, I think I was diagnosed with an A1c of 5.6, it’s gradually crept upwards and these days fluctuates between 5.8 and 6.2. My fasting at diagnosis was actually at the high-end of pre-diabetic, (low 120s mg/dl, and my oral glucose tolerance was a solidly diabetic mid-200s, I’ve always had poor phase 1 post-prandial response, i.e. my blood sugars spike quickly after eating, but then my body brings them back to manageable levels within a few hours with solid phase 2 insulin release.

I’ve been using 12 units/day of Lantus, I used to split my doses and use a little more, but I found that going back to once-a-day served me better, and 0.5-12 units of bolus insulin per meal, though on the lower end of that, I had the kiddie version of the pen that let me do half-unit dosing because I’m pretty sensitive to insulin. When doing really intense exercise, like alpine climbing or trekking, I found I actually had to get off basal insulin entirely and only use bolus insulin selectively in the evenings, my body still makes enough insulin to provide sufficient basal coverage when I’m exercising intensely.

As for a meter, I’ve been a bit fan of various iterations of the Therasense Freestyle, though customer service isn’t quite what it was now that Abbott bought it out. Tiny blood sample (which translates into shallower finger pricking), ability to top up the sample if more is needed, small form factor so the whole thing stashes in my pocket nicely. My impression is accuracy is good but maybe not class-leading.

I held off on getting a pump for a long time. My control with multiple daily injections was good, and I preferred injections to being tethered to a device. I knew I’d go on a pump eventually, but I thought I might hold off until I was in a more serious long-term relationship, preferred injections over tethering while dating. The biggest factor that pushed me to finally take the plunge on the pump was fighting my basal insulin during athletic activity, while on runs or road bike rides or swimming. I’ve been consuming a lot of glucose tabs.

Initially I was pretty sure I’d get the OmniPod, the lack of infusion-set tubing was pretty appealing. But I came to realize there were some real downsides to it, at least for me. The pod is a lot bulkier than an infusion set, and unlike a pump it can’t be taken off and left behind during athletic activity or repositioned for comfort or function-related reasons. The bulky pod means that the adhesive has to be a lot more robust so it irritates the skin a lot more—seeing an OmniPod user at the pool, with his prior site visible and pretty irritated, really brought that home for me.

I really liked what I read about the new Tandem t:slim, both the whiz-bang aspect of it and the underlying functionality. Someone put it nicely, this device feels like a 21st century insulin pump. Having had it for a week now, I’m exceptionally happy with my choice. Of course there are things I’d tweak, but I’m really impressed with what the Tandem team has managed to produce, and the customer service is superb, I can’t say enough positive things about my rep.

As for infusion sets, so far I’ve tried the Inset 90-degree and the Comfort angled set. The Inset creates a tad more deeper discomfort because I’m pretty lean, but irritates the skin a lot less where the cannula enters the skin at a right angle. I thought I was going to prefer the Comfort, and it create less deeper discomfort as expected, but it irritates the skin a lot where the angled cannula enters the skin, leaving more of a mark/scar, and the adhesive seems to irritate my skin more in general. I’m going to try a few more infusion sets, I’m curious to try steel ones and just see what else is out there, but I’m pretty happy with the Inset for now.

I should also get a Dexcom G4 once my doctor’s office manages to file the proper paperwork. I previously had a Seven+, and I found it a bit too beta—too many “???” and inaccuracies, especially during exercise, which is when I needed it most. The G4, especially with the new algorithm, seems meaningfully improved, though I’m keeping my expectations in check. Regardless it’ll be a fantastic tool to fine-tune my pump settings.

So that’s where I’m at for now. Happy to engage on issues in which others might be interested and I’ll add some thoughts over time also.

2

Hi Niccolo,

Thanks for sharing this. I will be starting a tandem soon also. So far I have been testing out the insets. I found the plastic angled one which was further under the skin was painful, while the regular inset and the metal one seem to be ok. Although I did have some pain sleeping on the metal, one I'm not sure if it was related to that or not because I have fibromyalgia and have varying pain at times. So far, I'm almost scared to say this, I had no irritation from them. I hope this continues when I actually have insulin infusing into me. How do you like this vs. mdi? Do you prefer it? I started using Dexcom g4 in September and it is truly wonderful, it has helped me a great deal even though it still makes mistakes sometimes- I feel safer and less nervous with it for sure.

3

I'm an omnipod user and I can't imagine using a pump with tubing. As a college girl, I'm both an athlete and fairly self-conscious, and the pod is adequate in both settings. I had the old pod at first, which was pretty bulky, but the new one really isn't bad at all. I play water polo and you can't see it underneath my racing suit, a fellow T1D actually asked me where my pump was. I wear a lot of clothing that isn't convenient to clip a bulky pump onto, and I always have a purse so the PDM isn't a big deal. My skin does get a bit irritated after I take the pod off, but I apply some lotion with shea butter and it gets better after a day or so, and the bruises from the canula are no worse than when I was on MDI, which made me bruise and bleed pretty frequently. The primary reason I chose the omnipod is that I can keep in on in the pool and shower. I'm one of those people who will get into the bath with their socks on by accident, and I didn't want to risk a very expensive device on my stupidity.

That's my pitch for the omnipod… I was also nervous about having the tubing of a "regular" pump catch on door knobs and stuff. Do you find this to be a problem?

4

@meee: I spent a week pumping saline (I think most pumpers start pumping saline, it's a nice way to get used to the pump without consequences if you mess it up), I only started pumping insulin yesterday. But yes, it's pretty clear to me I'm going to prefer it over injections. I didn't mind injections, what I'm more happy about is having minute-by-minute control of my basal insulin, especially when I'm doing athletic stuff, so I'm not fighting my basal insulin by eating glucose tabs. Also, the onboard bolus plus correction calculator is super useful. And the ability to give fractional doses, like 2.47 units, is great too. As for infusion sets, sounds like you might have been using an angled one with a longer cannula? Angled cannulas are always somewhat longer than right-angle cannulas, but they do make more longer and shorter ones. Congrats on the Tandem, I'm super happy with mine so far, I suspect you will be also.

@Leah, I hear you, my takeaway is that it's great we have different options available that can work well for different people. What you described is how I initially thought of the OmniPod, but for me, I came to realize the Tandem was a better fit. The fact that you can keep infusing basal insulin, presumably at a reduced rate, while in the pool is a big plus for your situation. Have you had many pod failures? Has the company been good about providing extra pods when that happens? I've heard some mixed reviews in that regard, but hopefully your experience has been better. The OmniPod definitely has some things going for it, glad it's working so well for you!

5

I find the argument that stacking insulin doses is problematic, and that insulin on board or bolus on board should be subtracted from a subsequent bolus, to be odd. If my boluses are appropriately sized to my carb consumption, including with a similar peak and duration (and I get that holds for some food consumption but not others, and almost by definition never perfectly), then I don't see why stacking is a problem. A concrete example illustrates the point:

- At 8 pm I eat 30 grams carbs, bolus with 2 units of insulin (since my ratio is 1/15).
- At 9:30 pm I eat another 30 grams of carbs, bolus with another 2 units of insulin.

I don't see the problem. And I don't see why I should reduce my 9:30 pm bolus because I still have insulin on board from my 8 pm injection. Because presumably I also still have carbs on board from my 8 pm consumption, and that residual 8 pm insulin is counteracting those residual 8 pm carbs.

Reputably literature, and some pump software, suggests I'm wrong, but why? Is the issue that the duration of even rapid-acting insulins like Novolog/Humalog is about five hours but most carbs, at least in the absence of a lot of fat or protein, are fully digested within about three hours? But if that's the issue, wouldn't it matter a lot precisely what sort of meal was eaten, rather than just generalizing about insulin on board and stacking as though all meals had really fast-acting carbs?

What am I missing?

6

I always bolus to cover all my carbs and don't subtract IOB, nor does my pump recommend doing so. The only time I take into account IOB is for corrections. I also don't subtract for my meal bolus if I'm on the low side (though my pump does recommend this). I have found if I don't cover all the carbs I will go high. If I'm notably low I might bolus late, or even treat the low, but never reduce the bolus. That's just been my experience.

7

Interesting to read your history niccola. I’m starting out like you, lousy 1st phase so high spikes post meal but still have a solid but confused second phase. Did you have reactive hypoglycemia in the beginning? My 2nd phase doesn’t know when to shut off to the point I’m now hypo-unaware from years of this happening. I knew I seemed to be having low blood glucose issues with the typical hunger and shakes, just didn’t realize I was going high too until last year. Did the Basel insulin stop the post prandial spikes? My fasting is still ok, but I have to eat low carb to stay under 200, getting to be a drag especially since I need to gain back lost weight.

8

If I understand the TSlim bolus calculator correctly it only does a reverse correction if your bg is below 70. Most other pumps will subtract if your blood sugar is below your bg target. This is supposed to change next time Tandem updates their pump and it will do reverse corrections below your target.

If no bg is entered or your bg is above target then I believe you get the full bolus even if there is insulin on board.

9

I believe the Tandem subtracts IOB from corrections but not from carb boluses. My understanding is some other pumps subtract it from carb boluses, too, which as I suggested above, doesn't make any sense to me.

10

I guess I've been lucky, I wouldn't characterize my second phase as confused, seems pretty consistent. I don't think I've ever had issues with reactive hypoglycemia, or at least not dramatic enough to cause an issue, though my vague recollection is that on my oral glucose tolerance tests back in the day, I'd go a bit low-ish after the big peak.

Basal definitely did not stop the post-prandial spikes, which is why I went on bolus insulin fairly quickly.

I eat a fairly but not ultra low carb diet, and that seems to serve me well. Eating a high-carb diet as a diabetic always seemed a bit crazy to me, since bigger inputs (of carbs and insulin) by definition lead to bigger errors.

Are you getting the LADA or MODY labels from doctors?

11

My endo thinks LADA, slow onset based on BG, genetics, and family history. I’d like to be tested for MODY but he wanted to wait initially before trying to get insurance to pay for it and now he left the practice and took a post at Baylor (he’s quite renowned especially for LADA) so I’m on my own for now. May just see if my new family physician will help me out. I have seen gradual deterioration of post prandials, I’m going higher with less carbs and staying higher longer but still may not be long enough for rapid acting insulin, don’t know. I do think afrezza might be the best bet for me because it has the fastest mechanism of action and the shortest tail. Not sure though if replacing the 1st phase and stopping the spike will stop my 2nd phase.

12

In terms of management, the MODY, LADA, 1.5 distinctions may not matter very much, though it's definitely interesting, in part because it provides info about how things are likely to progress.

If I were you I'd get a new endo, not rely on a general practitioner. You want to be on someone's radar, and you'll get better care if/when things deteriorate if you're not a new patient.

You're easily hitting the 200s already, if it were me I'd start bolus insulin. The more you can keep your glucose in check, and prolong the honeymoon, the better off you are, now and down the road. I don't have any experience with Apidra, and won't anytime soon because it doesn't work in my new pump, but I've been quite happy with both Humalog and Novolog, which are pretty similar to each other. No insulin is fast-acting enough to substitute for first phase without overlapping substantially into second phase, though Apidra is at least closer to that than huma/novolog.

13

Good to hear. I will be training on saline also. I also want to change basal and just see if this will help me be more stable with a more natural way of keeping the basal insulin supply going. The angled deeper set was the one which caused me some pain so I will stick to one of the others, even though my cde said that one is less likely to have problems with insulin delivery, which is another worry.

14

I like the TSlim a lot too. One of my local IRL TuBuddies arranged a meeting for 3 of us with the local Tslim guy, who was also really cool. I like the pump a lot. The size was a bit tighter than my current Medtronic and the functionality seemed very promising. At the same time, the CGM is pending and I seem to have decent results with the Medtronic Pump/CGM combo and also seem to have improved things a whiff with the Enlite sensor vs. the SofSensors, although I'm still using the 523 pump instead of the 530. The salesman reported that a Dexcom integrated with the TSlim is in the works but, as always, the timing was unclear. They are concurrently working on something along the lines of an AP involving glucagon as well.

15

I had a thought. The humalog and novolog rapid-acting bolus insulins many of us use are active for about 4.5-6.5 hours, while the food we eat is mostly out of our system in half that time, so a dose of insulin that suitably covers post-prandial BG peaks leaves a tail of insulin action that has to be balanced with more carbs. The thought was when using a pump, couldn't one substitute that tail of bolus insulin for basal insulin by setting a lower or even zero temp basal rate? I suppose this is just the "super bolus" concept, but it seems to me that one might actually want to do this with every meal, or at least every meal that didn't include so much fat, and to a lesser extent protein, that it actually matched our insulins. Just thinking out loud here...

16

I suppose that might work for some people who have trouble with the rapids acting too long (I don’t have that problem) but wouldn’t that require, to get it right, eating more or less the same thing at essentially the exact same time every day in order to replace the basal with the “tail” during those periods several hours after meals? Not a realistic option for many people.

17

I may not have understood your concept entirely I was thinking you meant to have this happen automatically, preprogrammed…

18

Pumps let you easily program temp basal rates, for example, I can tell the pump I want my basal reduced by 80 percent for 1:45, and then it automatically goes back to normal. This functionality is what lets people do the "super bolus," where you borrow from your future basal to give yourself a bit more bolus up front. The logic is that this better matches insulin action to carb action. The main shortcoming for me is that my basal rate is rather low (0.375/hr), so I can't actually borrow very much from future basal for a super bolus (2-4 hours, i.e. 0.75-1.5 units available to be borrowed).

You appear to have an unusual duration of insulin action and/or carb digestion due to some physiological quirk, must be nice.

P.S. I took your advice to get rid of the Brezhnev profile pic. :)
19

I really hope you can get the Dexcom G4. I know everyone's experience is different but this device has changed my life with Type 1 Diabetes! So grateful!!

20

Oh, I'm getting one, already approved by insurance, my doctor's office has just been appallingly slow to send the final piece of needed paperwork. Fingers crossed it's a big improvement over the Seven+, because I found that underwhelming.