I am a TWIIST AID user and have as late been having high blood sugars. My infusion site seems to be showing a decrease in insulin as it seems to be absorbing. When I kept being over 300, one time 478, and even after injecting pen needle insulin directly to try to bring it down. My glucose level does not seem to be responding to the insulin. Then I changed my pump tube (make sure no blocks) and changed my insulin pen before injecting, (in case insulin old but did not look cloudy) and so far not bringing blood sugar down. I keep getting high BS alerts…took a pinprick glucose and was still 378. or over 400. I have never had the glucose level not respond to insulin. Has anyone ever NOT responded to insulin? This has never happened to me before or after I got the AID . I have asked the doctor for over a month to review my therapy settings and no response.
but injected insulin is not having much effect. Thanks for any feedback.
If it were @LiamLiam, I would grab a brand new insulin (not expired) to get BGs back into order.
Stay hydrated! Check Ketones regularly.
Hope you figure this out soon.
The saying in FUD for all things diabetes, tech, insulin related… “If in doubt change it out.”
Yes, check for ketones! If you have ketones, you’ll need more insulin and hydration than usual to get your blood sugar back into range.
No ketones …never have had them. I injected 10 units from pen and waiting to see reaction. Down to 210 now. I thought of something that may be a factor….I used some cortisone 2.5 cream on some skin stuff…..for about 4 days………a lot of it. Could that have made it high continuously for 3 days? It stayed high for 6 hours all night while I slept…… injections, pump boluses….
Does the community think cortisone cream used probably too much could have led to the high glucoses? My BS stayed high 300-450) all night while I slept…..my TWiist app showed 6-7 hours all night high glucose. That was with 10 units from pen injected. I will take BS now with pinprick.
That could be a factor. I know that @CarlosLuis has mentioned steroids greatly increasing insulin resistance before. I’m not sure if there’s a different effect from topical steroids though.
I think topical steroids are highly unlikely to have a major effect. Systemic steroids… eg oral or injected, are a different animal and if that were the case it could be a factor. But frankly, no, imo topical hcz is not a factor. I wish I had better wisdom. Are you rotating injection sites? This can be a factor that is sometimes sneaky and under appreciated.. also as others have said, to rule out other variables make sure you’re using good fresh insulin— it’s some thing to rule out that’s easy to do even though insulin is generally pretty durable….
If nothing you can do works it’s time to see a doctor
I’ve never used cortisone skin cream so I queried AI with this prompt: “how likely is cortisone cream 2.5 use related to hyperglycemia in a t1d?”
Here’s the response I got: “Unlikely. Standard, short-term use of 2.5% hydrocortisone cream on intact skin rarely raises blood sugar. Significant hyperglycemia usually happens only if the steroid absorbs into the blood in large amounts. This requires large body areas, broken skin, or airtight bandages.”
I can’t be certain but my experience that matches your description of the event more closely with a sustained interruption of your basal insulin. This interruption may be an absorption failure at the infusion site, an infusion set leak, or even a “tunneling” scenario where insulin travels up the outside of a cannula to the outside of the skin. There are other interruption possibilities. You would have to observe and experiment to learn the actual cause.
I’ve troubleshot these problems and rarely find compromised insulin quality to be an issue.
When this has happened to me, in hindsight, I’ve found that the basal interruption has gone on for many hours and the accumulated insulin deficit is larger than I expected. Changing your infusion site was good instinct of your part. So was using a pen to deliver a correction dose.
If it was me, I would have pen-delivered a correction dose about 1.5 to 2x calculated for a simple high BG. The more time you have to be awake to babysit this correction (5 hours is ideal) the safer you will be. If you can’t stay awake, setting an alarm for every two hours after an aggressive correction could help. Or if you want to sleep and just accept the hyperglycemia, deal with your situation in the daytime. As others have said, test for ketones and stay hydrated.
For me, it always takes more insulin to bring down a basal-interruption high that it does to just deliver the normal basal rate that would have prevented it from happening. Backfilling a missed basal flow, in my experience, takes much more insulin than you would think.
Good luck with sorting this all out! When you are free with the after-effects of this episode I would like to read what you’ve learned.
Yes, I have. If my BG gets over 250mg/dL my insulin sensitivity drops through the floor. When I start to see my BG going through 180mg/dL I bolus 2IU even though that should lower my BG (from the numbers) by 110mg/dL. It does not, but it can head off the problem.
Like you I use an AIDS but I’ve found that it cannot help with highs like these. I suspect the algorithm does not understand the massive lowering in my insulin sensitivity that high BG causes.
On those occasions when I’ve experienced something like you just did I was able to trace it back to a failure of my 'pod (I use Omnipod Dash) to deliver the insulin.
The only exception was a recent experience with a Dexcom G7 which went completely bananas; it reported my BG as around 70mg/dL, my AIDS stopped my pump delivering insulin and I went very high.
I didn’t notice because for most of the time the pump was stopped my BG was sort-of reasonable but the effect of the suspended insulin delivery (no basal, nothing) started kicking in a couple of hours later; about when my high BG woke me up!
My AIDS does show how much basal has been delivered and gives me a graph of delivery over time, so if the problem is a false low BG then I can see the result. I don’t know how much info twiist shares but, if you can, go back in time and look at how much insulin you were getting in the 3 or 4 hours before the problem started.
I don’t think the twiist AIDS implementation is particularly public but I suspect (well, the AI says) it is based on loopkit. There are other users of the basic algorithm here so they may be able to help particularly if you have the data from the integration site. I don’t know if twiist uses TidePool for data aggregation but my AIDS now supports it and so does my endo so, most likely, everyone will in the near future.
Don’t give up. An AIDS is no different to a syringe loaded with regular; it’s not the insulin, it’s the delivery that counts. We can fix that.
Insulin has been refrigerated and I took out a fresh one they’re able to be out for 28 days at room temp. It’s not cloudy either. It does not have particles floating in it.
Thanks for response.
Andrea
Thank you for the extensive information. Yes the twist does use tide pool and I’m printing out my record for the last two weeks and then I’m gonna print it again for the last four days. I had never heard of that insulin sensitivity going down when the blood sugar is high just when you need to react to insulin.!! I am a person that has been having trouble with my Endo asking for my therapy numbers to be checked because TWIIST can’t comment on those although their reps are very helpful. Usually is pumping and I can measure how much my body has absorbed, but I’m not sure if I can go back and see what the insulin delivery was hours before, but it does have a print out on my phone. I will print out the tide pool thing but what do you do when you’re high and you need more insulin?? all right
I have had BS levels like that a few times before and wondered if the raging anger and stress I felt during that time was contributing to my numbers not dropping as quickly as they needed to. It’s a horribly frustrating thing to experience, for me the stress was difficult to control. I hope you are able to get it sorted out soon.
For me insulin takes at least 30 minutes to start to show a significant effect. I can raise my BG in 5 minutes if I have to. So what I do is rage bolus. Then, if I have to, do the munchy dance, where I can eat anything I want to because otherwise I might die.
I’m not sure what your endo is after by I suspect she’s looking for the “basal”, the various “factors” and so on. Those don’t mean very much with some of the more modern AIDS (which pretty much ignore them) but I don’t know about twiist.
I suggest you ask your endo at your next appointment (i.e. face2face) what she wants; docs are pretty good at explaining. My understanding is that when we share our data with TidePool we really can’t hide anything. If we give our endo access to our TidePool data we are fundamentally naked; everything is exposed.
My own endo now has access to my TidePool data and he flicks through it rapidly and seems happy. Bottom line; talk to your endo at your next appointment. Bear in mind that it is much more challenging for these guys that it is for us. We’ve been waiting a long time, they’ve been playing golf.
J, I have never heard of insulin not having an effect on a type 1 person who has high BS. This is something no medical personnel would tell me or warn me. I have had over 400 on my AID and had it take awhile to come down, and the algorythmn and the TWIIST reps can see my BS when I am talking to them. I heard about the Dexcom (I think from you on FUD) and I have Libre 3. I’m taking blood glucose and it still is high.
I totally changed my pump and infusion set location and still getting critical alerts for high glucose. Injected from pen and then low starting went to 65, drank 40g grape juice carb, then 305 soon after. Don’t know why this is happening as record shows lots of pump insulin delivery prior to high glucose. I was never warned of insulin sens.at higher glucose levels…..is that something you learned from experience?
I will have to consult that very unresponsive endo on that…my insulin sens. is set for 35 mg dl/u. I have had little problem with delivery as TWIISTtells me “line blocked” or “check line” or “check infusion site”. Otherwise, I can watch insulin active in my body as it absorbs interstitial
which indicates it’s going in me (I assume). I’m going to print the Tidepool PDF of my TWIIST function this week.
I’m high now on my CGM but will take blood glucose. Thank you again.
Yes, Funk I am aware that emotional stress can affect blood sugar. I did have high for 30 hours but it was when spouse was in hosp with
heart attack……but I discovered my infusion site for pump was improperly inserted. This week has been less stressful than most except
some medical issues (vertigo) for which I am having a brain MRI in 2 days. Hard to connect brain with glucose level but who knows with
Type 1 diabetes. Thanks for candid response.
@andrea8 here is a tip from @Jen: if there is no good insulin response after 4 hours change your pump insulin and site. My son does the same thing. I would add several other tips:
- When doing major corrections always use a pen, because after a while, when using a lot of insulin, your site saturates (at least my son does). Kaelan’s rule is anything over 5 units is major
- Don’t always trust your CGM. When high start tracking your BG with strips.
- Learn to do intramuscular injections, using long needles (K uses 12mm, his thigh as an injection site, and runs for 5 minutes afterwards): this will get you significantly faster reaction time from insulin. It takes K 45 minutes to see significant impact from insulin after a regular injection otherwise.
Finally, one comment: many times we have suspected bad insulin when seeing no reaction. It has for us always been wrong. I sulin does not go bad easily, and your body ALWAYS reacts to insulin, but there are many other processes under way at the same time.
If you can at all, try to have someone with you at home when you are at risk of a rage bolus. My son is in college and I have the phone number of all of his housemates in case something goes wrong. Be careful and good luck.
I am using twiist pump and the same thing happened to me twice. Both times the cannula was found to be bent when I removed it. The cannula became bent by bumping the infusion site (on my thigh) during the day, but my BG started it’s unstoppable rise over the next 3-5 hours and continued to act like I was absorbing none of the insulin the pump was cranking out…because I wasn’t. I know this is what happened because the infusion was fine for 1+ day until it quit working. Look on this pic how it gouged my skin when it got bent. Theres no way insulin would absorb through that.
The fix was to use Affrezza to bring BG down (or a syringe with insulin if Affrezza is not available) and to call in the problem to Sequel. They will want the lot number for the infusion. They sent me a box (10) of replacement infusion sets and both times they requested that I send back the bent cannula infusion.