Set Change Struggles

I am all for pumping.  It allows me to deal with my dawn phenomenon, where at 3:00 AM my body needs 50% more insulin than normal. It allows me to be very precise with my insulin doses, does all the math for me, and keeps an eye out for insulin on board that might trip me up later.  It allows me to adjust my insulin before, during, and after exercise, rather than having to eat.

But, even with all of those wonderful things pumping makes possible, there are a few things that drive me up a wall.  Dealing with infusion set changes every few days is one of them.

It’s not really the set change that bothers me.  It is the disruption in the flow of insulin that gets me.

Today is a fine example.  I woke up around 8:00 AM, tested 123 mg/dl.  I changed my infusion site and cartridge, which I used to do at night.  I primed my cannula with 1.5 units, which is more than what is necessary.  The instructions call for .5 units.  So I’ve got 1.0 units extra.

I dropped my kids off with my dad, visited for a while, then headed to the Mall of America for a walk (thanks to all of the encouragement!).  I started walking at 10:15 AM, and already my blood sugar had jumped up to 192 mg/dl.  There is no food involved with this rise.  Not a bite.  One can of Diet Coke.

10:37 AM, I’m starving.  I swing through a convenience store, buy a Diet Coke (from the fountain) and one of those small tubes of honey roasted cashews (for “breakfast”).  Total carbohydrates on the package say 14g.  I bolus for 30g. At 1 unit per 5 grams, this gave me about 3.2 extra units. And I’m exercising.

I walk for another 40 minutes, putting me at an hour of walking (thank you again everyone!).  11:15 AM, 201 mg/dl. I run a few errands then head back home to the office.  In the car a few minutes away from home I also take a hit of Symlin.  I wanted to dampen the hunger and get my blood sugar down.  Symlin with extra insulin around is usually not a good mix.  But I was getting desperate.

12:01 PM, 243 mg/dl, and I’m getting pissed.  I fire in a rage bolus of 10.5 units.  I want this down NOW!  So, there is another 10.5 extra units.

1:20 PM.  I’m so hungry.  256 mg/dl. I can’t take it anymore.  I dial in a massive bolus of 30 units because I’m angry and starving.  I ate two cheese burritos, which clock in at a total of 60g, and slowed by high fat cheese & sour cream.  That should be a total of 12 units.  So I’ve got an additional 28 extra units working for me.

My normal daily dose averages pretty close to 90 units a day.  So far I’ve taken a total of 42.7 EXTRA units of insulin, and a dose of symlin.  Where is my low?  Where the heck did all that extra insulin go?

3:50 PM.  310 mg/dl.

QuicksetThis is a typical set change day for me.  I pound and pound and pound the insulin, then finally, around dinner time, it all starts to work fine.  Sometimes I’ll run a bit low by then, sometimes not.  By this evening, and especially tomorrow, it will be working great.  I just don’t get it!

You have all given me a lot of ideas to try.  Some of them I have tried, some I have not (yet).  I have left my old site in for a while, I have bolused even more extra insulin, I have taken insulin on both sets (new AND old), alternating back and forth.  They are great ideas, I just haven’t stumbled on one that has worked for me.  The only one I haven’t tried so far is taking a little bit of insulin via syringe when I do my site change.

The hardest thing for me is that this is not consistent.  It happens on and off for a while, sometimes happening 2 of 3 site changes.  Sometimes 1 of 5.  For years. If it were consistent I could figure it out.

This is another super example of how blogging helps me.  As I am writing this, I started to think that maybe I need to recruit some expert help.  Maybe I need to find myself a good CDE, or hire Gary Scheiner, to go through some experiments.  ]

Or maybe you have some experiments I can try.  I’m open to do whatever it takes to figure this out.  I’m tired of fighting with it.

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23 thoughts on “Set Change Struggles

  1. We had the same issues with my daughter. then we started using the Inset infusion set and it got MUCH better. Have you tried different sets? I have even heard that some people do better on the antiquated metal sets.

  2. Just wanted to share another follow-up idea that I remembered. Someone once told me to insert the infusion set a night/day/bunch of hours early without priming it or even introducing any insulin to the scene because your body’s natural infection fighting mechanisms (it recognizes that the canula is not natural) might affect your ability to absorb insulin there. It’s just a thought, though I am thinking it has more to do with lethargic skin sites. There’s just not enough places to put these things!

  3. Oh I share this problem!!!! Tristan often (same as you, not always) goes high after a site change. What we have started doing with him, and it seems to work better, is this.
    We change his site change with a meal. We check sugars, correct with the old site. We let him eat, change his site and then correct for his food. This seems to work well for him. Sometimes we also change the site in the middle of food. We will correct his main meal with the old site, change the site and then let him have his dessert and then correct that with the new site.
    Sometimes it works… sometimes it doesn’t.

  4. Thanks for sharing and allowing others to speak up. You’re right with this subject not being something covered in any pump trainer’s manual. I’m a CDE, also a T1 (46+ yrs), and I don’t have any better advice than what others have said…my frustration in trying to help other persons with diabetes, (T1 especially) is the lack of “patterns” in most of us…makes it really hard to make recommendations, and that is why the best education is helping PWD collect enough data so that any troubleshooting can begin. I agree with the folks who mentioned hydration: it totally affects how I feel and any exercise (just mild, like walking for 5-10 minutes!) performance and stamina. It has to be a factor in “wetting in” a new infusion site/set, not unlike how that works with CGMS.
    I also had to totally abandon old injection sites and go for uncharted territory. Absorption can be fickle in any site, but it is especially so in my abdomen…I’ve totally had to use my arms, back, etc. which I’m assuming you’ve already done.
    Dang the diabetes. I’m so ready to be over it!

  5. Wow, man, that’s a lot of insulin gone missing! Where does it go?!
    I used to have a lot more trouble with this whole business, and I did a lot of different things to fix it when it really started making me nuts. These days it’s a lot better.
    First, it seemed to have something to do with scar buildup, so I took a whole summer off of pumping (for that and other reasons) then started using all the different areas I could find for sites and giving the scarred areas a break. Also I started changing sites at bedtime (before the Dexcom, I’d set an alarm to test BG and make sure I was OK…now I let the Dex watch out for me) because my insulin requirements are lowest then and I don’t need meal boluses. Also I do an extra big prime, as you mentioned–1.2 u for a 9 mm Quickset. I definitely keep the old site in for several hours or overnight. I fired the Silhouette infusion sets since they were giving me lots of site change problems, scar tissue, unpredictability and infections, and switched to Quicksets. (Some people do even better with metal cannulas, so that’s an option I might try later on if the problems come back.) And finally, I am very quick to whip out a syringe when I’m suspicious of any site problems and give myself a correction-plus-missed-basal supplemental shot. (A calm, cool one, though, not a rage shot 🙂
    How come I never heard about this issue from pump trainers, CDEs or docs? It became a huge issue in my control for a while there. Thank goodness for all the DOC writers like you…
    Hang in there!

  6. Thanks for your post. I am not alone! I am on the Pod and have the EXACT same issues. I fight the highs all damn day then all of the sudden around 5-6pm I drop too low. Today’s set change I dialed in +%45 basal with correction boluses about every 2 hours, and I am still above 200 all day. So frustrating!

  7. And I thought this just happened to me! My endo hadn’t heard of it, so she couldn’t offer much advice. Like many others, I have a super-basal (+20%) for the first hour and a half after a site change to help my body “learn” where to find insulin. I, too, give a 1.85 unit prime to fill the canula, even though they say that you need .5 or so units. I find that I don’t have to do this insulin saturation regiment, though, for my stomach; only my hips and sides. I really don’t appreciate how variable to absorption can be, depending on where I put my site. Makes it hard to use and develop that sixth “diabetes” sense. I now have an insulin pen (fast acting) ready for site changes and I don’t tear out the old one until I know that the new one is good to go. In fact, I use the old one for any boluses (and re-connect to the new one right after) to help with the transition. Sometimes, it’s not even the skin region itself, but the canula that gets bent that causes the weird absorption. I wish there was some way to know if the canula was bent without having to rip the whole thing out! I can relate 100% to what you’re saying, Scott, and knowing that makes me feel a little bit less cheated and alone when I do my site changes. Best of luck in finding some crazy routine (you know it’s going to have to be crazy to counter such crazy, unexplainable behavior) to help with your site changes!

  8. Man, that would be incredibly maddening!!!!! Inconsistency is sooooo frustrating … might be the most frustrating part of this whole disease (at least for me). I hope your next change goes more smoothly. Hang in there.

  9. As one other said, I also had similar problems with my MM for no apparent reason, but thus far (~10 months) with the Omnipod, nothing. Might be something to consider. I think the reason for it is because now I use my arms AND my abdomen/flank, instead of just my abdomen/flank, giving my flank/abdomen double the time to heal. (And yes, that’s all theory with no way to prove it.)

  10. “Rage bolus” Ha. Ha. That’s a good one, thank you. I feel bad now for my judgment of Omnipod ’cause I thought the high occlusion rate after site changes that some podders experience is an Omnipod issue but I see now it can happen with any pump. The dehydration theory is clever. I wonder if the skin can develop worse and worse absorption even before it scars up beyond use. Maybe the extra insulin that you dial up never gets delivered due to kinked cannula? Do people who use steel cannulas get the same problem? I mean the insulin has to be leaking out or is not being delivered, it can’t just disappear! Or can it?

  11. Scott,
    You are scaring me with those rage boluses, dude!
    Sounds like it was definitley as set issue – poor absorbtion, kinked canula, something. I hate this crap! I don’t have a lot of patience for it either.
    Keep the faith. Keep rotating. Hang in there.

  12. Man, where did those 28 units go??
    Anonymous, you might have a point there! I have trouble with site changes too, but not anything like Scott. I usually takes 2-3 hours for mne to get going.
    Today, with a site change, after I read your response, I drank an enormous glass of water. An hour later I was way lower than expected, and lower than when I started with only a small correction bolus, which I’d needed. Worked a treat. Probably coincidence, ’cause I got a good site.
    Scott, if the theory is right, that if we’re only a little dehydrated, or we need extra hydration, I doubt the caffeine in the 2 x Diet Cokes would have helped. Maybe you’re extra sensitive to caffeine? Not that I think a large glass or two of water will solve your problem, but try it – it can’t hurt, and maybe the BG rise won’t be so bad. Also, try site changes when you’re most insulin sensitive. Good luck!

  13. I dont really know what to do about it but I have a theory as to why it happens. Have you ever tried to wash your counter with a dry sponge. I think every new site is like a dry sponge and some may be drier than others. Now that sponge works much better when it is just not quit soaking wet but far from dry. Well new sites are much the same in how they work. Now some will get to that cleaning stage right away and others take longer. So maybe every site change should be preceded by a half lieter of water consumed 1 or 2 hours drior to change. Like I said I dont have any answers just sugestions. And yes dont feel alone in this as it happens to everyone to some extent.

  14. Scott,
    I am so glad you wrote on this, I am a new pumper just started in July and I kept thinking it was just me that this happens to. Very frustrating indeed!!! and the worst is the part about it not happening each and every time! What is up with that????? I have been diabetic for almost 20 years and you would think that things would be smooth sailing at this point in life. I am thankful for my pump because it is a Huge improvement over MDI but wish it were smoother!
    Good Luck.
    Also I am wondering if DP is happening since you are doing your set change in the morning….have you ever tried it before dinner? Early enough in the evening yet usually a more stable BG time for me anyway.

  15. Um, today is a set day for me, and so I am planning on several hours of managing some high bgs and quite a bit of ‘set change insulin’ to settle the new site. I wish I could say why this happens. The only thing I can think of is that I get sort of anxious on set changes and maybe the stress causes bg rise. Then the extra insulin finally begins some action and I’m fixing that nonesense! I don’t know, but in nearly 20 years of pumping I always have trouble on set change days and have learned that I am not alone in this. I doubt this was helpful, but at least maybe you can rest assured that you are not alone either 🙂

  16. That sounds mighty frustrating! (And incredibly hard to explain — thus the frustration.) The bolus by pen sounds like a decent option to try, other than that, I (still) do highly recommend Gary.
    Good luck, man!

  17. Scott, Elizabeth was having major set change issues over the last year, too. She would change her set and it would just take half a day to start working properly. It was very frustrating. Luckily, she’s had virtually no issues with her new OmniPod. But I can identify with, as Kelly says, the real PITA experience.

  18. I know it must be difficult to write about this but I really appreciate you for taking the time to do that. I just ordered my very first pump this week. Having a clue of some of the “bumps” beforehand is going to be helpful. I hope you get it worked out. Thanks!

  19. how about having a pen of Lantus/Levemir around for set changes? You could do your set change in the AM and take a bolus to just help get a jump start (even better, an hour before your set change so you have continuous basal on board)? If you find your BG is not skyrocketing, you could reduce your basal for the rest of the day. Taking an injection of long-acting ins. will ensure you’re covered and you won’t have to mess around with multiple corrections using a syringe.
    It is really tough to figure out something that is inconsistent… After you posted on this topic before, I noticed the same thing happening. I had never made the connection before, but had just attributed it to my “crappy control”!

  20. All I can say is yuck…This sounds so familiar. It happens to me about a third of the time (and it seems to happen in streaks…If it’s happened once, it’s more likely to happen the next set change.)
    The only thing that works for me is to up my basal about 20% for 2 hours following a set change. Either my sugar will start plummeting within an hour, meaning I’m NOT having a set change issue, or it’ll start creeping up. If it’s going up, I won’t eat anything at all, and I’ll correct via syringe. If I really am starving, I’ll bolus with a syringe (taking a little extra, because I know I need to make up for the basal my body’s not absorbing anyway.) What I’ve found is that once my sugar starts creeping over 180, I really get into trouble–It’s like I’m not absorbing any basal at all. So I’ll do what I can to correct (via syringe) before I get that high.
    I know how frustrating it is, especially since there’s no way to tell which set changes are going to be bad, and either I’ll get low sugar from the higher basal or high sugar from the change. Every 3 days I get that sinking feeling…But I’ve pretty much been able to manage it this way. Not perfectly, but at least I can usually stay out of the 300’s. Hope this helps, Scott!