Two weeks ago I wrote a grouchy blogpost about my frustrations with diabetes devices. Things got a little better for a while, but today THE GROUCH IS BACK!
I am sitting here with a high BG that is 99% likely the result of an infusion set change earlier today. I find that no matter what kind of set I use, I more often than not get highs after insertion. I have a grab bag of tricks that I use to avoid the rise, but none of them worked today. I finally gave up and inserted a new set.
These problems are not the fault of my pump, but they are the fault of an insulin system that makes me utterly dependent on the short-acting insulin delivered by my pump. Why should I have to accept high BG numbers for 4-6 hours every three days? I hate these “blameless” highs. I ate a small breakfast today followed by a 3-mile walk. Then I changed my infusion set and my BG climbed from the 80’s to the mid 200’s in the next couple of hours. If I’m going to have a snarky high, I should at least get to have a cupcake or a chocolate-covered donut.
My Dexcom G4 was not an innocent bystander to this mishap. In fact it was continuing its 2 month vacation from accuracy. Because I felt good and the Dex showed my BG to be level, I didn’t test after breakfast until late morning. I was surprised to see a BG of 181. It didn’t make sense so I tested again: 180. I took a correction bolus and calibrated the Dex which was off by 75 points. I was well up in the 200’s before my BG began to fall as the result of several correction boluses and the new infusion set. When my BG finally started to drop, I gave the Dex an extra 30 minutes to see if it would react. Not even close and I recalibrated it downwards. This is the third day of a sensor that has been a problem from the start.
So what am I going to do besides tear out my hair and curse everything related to diabetes?
First I’ll call Dexcom whose reps have been very helpful by replacing sensors and giving advice during the last couple of weeks. I’ve been using new hardware for the last month and the next step might be to try another new transmitter.
Secondly I am going to make changes to my insulin regimen. In a recent post titled Lantus is Lovely and Amazing, Katy of Bigfoot Child Have Diabetes revisited the idea of her son using Lantus in tandem with his pump. She saw the benefits as minimizing the effects of a pump failure/bad site and a way to give her son more flexibility for water activities and in general some pump-free time. The use of the pump along with Lantus (or Levemir) is called the Untethered Regimen and is best described by Dr. Steve Edelman in a 2004 article. I have used the untethered regimen several times on beach vacations and wrote about it in a July 2013 blogpost.
I have always thought that the untethered regimen makes a lot of sense. An infusion set insertion, a bad site, or a pump problem will have less of an effect with Lantus in the background. Because you take some of your basal with the pump, you still have the ability to reduce or increase basal rates as needed. I’ve had great success when I have used the Lantus/pump combo in the past and as I said in a comment on Katy’s post: “It works so well that I’ve often wondered if I should do it all of the time.”
So that’s what I am going to do. It’s time to experiment with changing up things because I am not happy with where I’m at. I’ve lost confidence in my ability to get good results by doing my normal “right things”. Of course the real villain here is Type 1 diabetes and there is no doubt that I am going through a bad period where minor things are affecting my blood sugar quickly and erratically.
I have ordered Lantus from the pharmacy and will start using the untethered regimen when I have the long-acting insulin in hand. Will I stay on a combined Lantus/pump regimen for the rest of time? Probably not, but I think it will make things easier in the near future. It could be that I just need an increase in basal, but I’m tired of tweaking things and overreacting to highs and lows.
One thing that I always try to remember is that my body does not know the difference between bolus and basal insulin. Formulas and rules of thumb are just that. Sometimes I need to be creative to figure out ways to deal with blood sugar excursions. Please realize that I have used the untethered regimen before so this is not me going off wildly without understanding what I am doing. I see my endocrinologist in two weeks and this will certainly give us something to talk about. She knows that I am a headstrong and self-managing patient and she has never been upset by that. In fact she always emphasizes that this is “my diabetes” and she is my coach.
The final topic for today is related to syringes. Whenever I’ve used syringes in recent years, I have pulled them from a box purchased on 11/15/04. Do you think I should buy new ones???
Disclaimer: Nothing I say here should be construed as medical advice and please do not change your insulin regimen without consulting with your medical team.
I’ve finally caught on to a big clunker re Lantus: it stops working after about…20 hours! (On my child, anyway.) So I need to program the pump basal to he very robust from about midnight until 6am if I’m injecting the L at 7am.
4 hours with no basal = first time getting “HIGH” on the Dex graph. Yikes! I had no idea.
Yes, that is very common with Lantus and that is why I inject it twice a day when I use it. I’ve never gotten very scientific with the split and have always given 50% of my daily dose 12 hours apart. Others Try to get more precise results by using different splits and not necessarily 12 hours apart.
Laddie, a couple of questions:
1) Will you have an issue with insurance paying for the Lantus, because Lantus is not used in an insulin pump?
2) When doing a set change, have you considered leaving the old site in for a few hours and connecting to that while your new insertion site calms down?
Hopefully, my questions are just crazy conjecture and what you’re doing now will bring you the best results. Good luck.
My current insurance will pay for the Lantus although you could definitely argue that I am double-dipping. If I truly stay with this regimen long term, I would look into pens where I would have much less insulin to discard after 30 days. In general I have fine results using Lantus for more than 30 days, but it takes me forever to go through a whole bottle.
I have left the old site in for several hours but have always hooked up to the new one right away. I think that Kelley of Below Seven once suggested the same thing. Part of my problem is that by the time I am changing pump sites sometimes the old one is getting red and I want to rip it out right away. I will try your suggestion and thanks:-)
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I think our insurance pays for Lantus “in case of pump failure” —that’s how the Rx is written. I wonder if I will run out and then run into trouble. Thanks for the heads up, SS!
I’ll be interested to see how this turns out for you long term. I just hate Lantus. On the pump my total basal is 48 units/day. On Lantus I used 55 and never got below 200. I wish I could do something like this for vacations and whatnot. I wonder why you see such a rise after changing your set. That’s something I only see every once in a while. Curious.
Frankly although the set looked fine when I pulled it, I assume it was a problem beyond the site change. But some people definitely have this problem and I’ve read of people who take a 5-unit bolus every time they change their set. Ironically I participated in a study at Glu a while back about whether absorption is worse the older a site is. The study confirmed that it is worse on Day 3. I’ve always thought the opposite!
The last two Dexcom sensors we have used have been problematic also. I was told by Dexcom to try calibrating it 3 times in 30 minutes next time this happens. I had already pulled it when I called. Have you ever tried the steel sets Laddie? We are so happy with them, and only change them out twice a week, with no issues whatsoever. No worries about bent cannula is amazing. Now there is one less thing to think about when dealing with a high blood sugar. We did have the high issues after an Omnipod change, but it wasn’t consistent so couldn’t prevent it by a bolus.
In my last order of infusion sets, I ordered one box of Contact Detach Shorts which are the metal set with Animas. You are absolutely right that they started absorbing right away unlike the Comfort Shorts (Silhouettes), the Inset30’s, the Cleos, etc. and all of the other sets that I’ve used. I had a couple of problems with the metal sets. They hurt and I got bruises from them. And then at least with the box I got, the part that had the metal needle didn’t stick well and I had to use tape. The other circle stuck super well so it didn’t make sense. I did use the shortest possible metal set and I wanted it to be half the length that it was. I have always done best with angled sets and I remember y saying that Melissa does horribly with angled sets. Very weird.
Hi Laddie, I am currently on MDI (Lantus and Humalog), but I am starting the pump tomorrow. I have been diabetic for 41 years and I still use syringes and vials (a little behind the times). When I read posts like yours it makes me very nervous about going on the pump. I question my choice and wonder whether I am better off staying on MDI. Any words of wisdom?
Don’t be worried. The pump is great. I think a lot of my frustrations just reflect how tough Type 1 diabetes is. Somehow I am always hoping for perfection and think that changing my insulins and devices will make that happen. I also think that our diabetes goes through phases and I happen to be in a tough one right now.
Good luck with your pump start and please check back in to let me know how you’re doing:-)
I think you can still use those syringes, but that is pretty old! But if you need more, you’ll definitely need a new prescription. 🙂
It was quite an eye opener to see how old those syringes are. I remember when I started pumping, I was able to donate a lot of my boxes of unused syringes. I do periodically use syringes for correction boluses, but it takes a long time to go through 3 or 4 100- count boxes….
I’ve never heard of the untethered regime before, so I’m interested in hearing how it works for you. Thanks for teaching me something new.
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