The download upgrade.
It was the fifth night in a row I’d been woken up from a high blood sugar. Although I was glad to be woken up so I had the opportunity to fix the damage, I also enjoy sleeping through the night whenever possible. Crazy, I know. I didn’t understand why it was happening and what I needed to do to fix it. In the middle of the night, in my sleepy, high BG fog, I had not bothered to make note of the time as I bolused and rolled over to try and get back to sleep. By the fifth morning as I poured an extra-large coffee into my travel mug while trying to think about how I could figure out when exactly it was happening, I realized that (duh) there was as very simple way.
I grabbed my laptop and plugged in my CGM. I pulled up a week’s worth of data and scanned the trend lines.
Ah ha! There it was: 4:30am was the go-time for a rise in BGs. All five nights had started ticking up wards between 4:20 and 4:40 or so. In order to impact a blood sugar at 4:30, I had to get more insulin on board about an hour earlier. I pulled out my pump controller and went in to edit my basal rates. I added a half unit to my rates between midnight and 3:00am.
And that night, I slept all the way through the night, no buzzing of CGMs, no dry mouth in the morning, no interruptions to my precious slumber.
There was a time where I thought I’d never download my own pump or CGM data. I had put downloading in the category of “things you do when you go see your doctor.” But when I started working in the CGM industry and showing doctors how to use and optimize the downloads in their offices, I started analyzing my own data. Seeing my trending information helps me understand if something is actually happening with a pattern or if something is just the usual “living with diabetes” BS. I love the fact that a problem I was having was solved by just taking a few moments to plug in and download.
Now that I’m a regular downloader, I don’t know how I didn’t do this before. I especially like seeing the average glucose trends and percentage of time I’m in range. When I look at my BG average over the past 30 days, I’m usually able to calculate my A1c within a tenth of a point, which means a whole lot less anxiety when I get to the doctor’s office. Downloading with some frequency has helped me feel more in control of things instead of leaving them up to only my HCP.
Do you guys download? And is it helpful? Or do you wait for the doctor to do it? And do any of you have a doctor that’s a technophobe that WON’T download data (if this is the case…it’s my personal opinion that you get a new doctor….downloads are the new log books and they gotta get with the program!)
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Comments
Floh - half units are actually normally a lot for me too but I haven’t been able to exercise much - sore Achilles tendon! I don’t want to risk bursting it so I have had to take it easy and unfortunately that means much MORE insulin.
I want to know more about the Freestyle libre - I understand the concept but how is it in practice? And tell me more about the affordability!?
I’m prejudiced, so take all of my swooning with several large blocks of salt. The problem over here (in ze Germany) is that CGM is only paid for by health insurance in very rare circumstances, and it’s almost always neccessary to fight for it in court (unless pregnant, which makes a surprisingly large amount of sense, but doesn’t help me - body-shape alone does not convince them :).
I calculate CGM at around 3000€ for the receiver, 600€ for the transmitter (yearly) and 60€ for the needle-sensor-things (every two weeks, probably, although the manual says something different) - those prices will likely be different in each country, and I have the suspicion you’ll be able to guess those better 🙂
The Freestyle Libre is 70€ for the reciever, no transmitters, same 60€ for the needle-sensor-things (which last for 14 days, but cannot be made to work longer at all).
It also measures intercellular glucose (with the usual problems: not blood glucose, time delay during rapid changes of blood glucose, dependent on proper exchange of liquids *yikes* - so lying on the sensor can give wrong-low results). All of those should be the same as the CGM (from testing mechanism).
Relatively new is: no calibration measurements required (and my own experience with the accuracy is excellent - after the initial sloshing-of-liquid-along-the-sensor-time-delay (~2h) it’s pretty much identical to my blood glucose measurements) and pretty good predictive algorithm (that one is what I “feel” is happening. I’m not sure they advertise. Basically, when blood glucose changes moderately fast, the sensor is still spot on even though intercellular glucose is changing differently. This can be done, as the sensor does not transmit continuously (unlike CGM), so it doesn’t have to be accurate-to-intercellular-glucose and can instead transmit “what we think your blood glucose is”. And try to replace blood sugar measure finger-pricking (Oh my… all those precise technical terms).
I’ve been using it for 4 weeks now (my second sensor will turn itself off today in 10 hours), and notice a massive improvement in my control. But I am one of those people who like “lots of data” - and I tend not to react instantly. I think this is still identical to the CGM - if you panic and bolus because there is a spike after meals, you’ll likely run into trouble. If you use it instead to adjust the bolus-to-meal times, you’ll likely just get better (smoother) sugars.
Also: Sticky tape on it lasts for two weeks (for me, I heard vastly different results) including 17 hours of (sweaty, sorry for the mental image) sports. The needle is harmlessly small and I don’t notice it.
The inserter works well (sample size: 2 - not statistically significant). The reader is small enough to be okay to carry around and has a decent display (can’t talk about readability in the sun on a bike-ride yet, as we haven’t had sun in the last four weeks) - it’s unfortunately touch screen, which I personally always find slow and stupid compared to buttons, but I might just be getting old.
Practice summary: Love it. Wish it was paid for, because it is such a massive improvement over blood glucose. Personally I can rely on it to work as a BG-measurement replacement and I could live without finger pricks. It has no alarms, so it’s no CGM. During normal sports (~up to 1.5 hours) it’s just as useless as CGM (which I only had once for a week, so I might have been doing it wrong 🙂 I don’t get changes fast enough for it to warn me, but that’s okay, because for those short times I can just bring along a coke and work with adjustments after.
Sorry for the wall of text. Ooops 🙂
Floh, thank you for the wall of text!!! That was a fascinating read since I don’t have any experience with the Libre - very cool to understand it’s benefits and limitations better, I really appreciate you taking the time to send the info. Also, “massive improvement in control.” YES! 🙂 That’s a very very good feeling. And I can see with that price that it’s worth it in the long term even though it’s still expensive. CGM does keep up with workouts for me at least - that’s the time I rely on it the most - tuck it in my waistband pocket and if it alerts, I stop and treat and it’s usually spot on. Like you I like “lots of data” and that’s why I’ve done well with a pump and CGM - to me the more you know the better you do.
Has the Libre launched well in Europe, from a sales perspective? Are you able to gauge that? I’m interested to know!
I might have to get a CGM somehow after all 🙂
Obviously the Libre has no alerts, so that option isn’t there. I suppose with the CGM you could set the alert level to “BG_low + Difference_between_BG_and_ICG” (or basically.. alert at 100mg/dl instead of the usual 70mg/dl or some such).
Anyway… since using the thing, my HbA1c has come down 0,5% (with less lows) - which I find quite impressive (new HbA1c as of today, so ha! Take that intertubes! I got better!).
Sales: I can make a guess about Germany, but wether it’s a marketing ploy or real I cannot tell (obviously). Sales are currently only via the Abbott (how many bs and ts? who cares!) website. The website does not accept new customers until the new year, only existing customers can order more sensors.
Total cost for a starting kit is 180€ on the Abbott webpage, and the first starter kits are selling on Ebay for 405€ at the moment. So I presume they are really sold out, which sounds impressive.
No idea how France and England are doing - they got it at pretty much the same time. I think Switzerland still can’t oder it. Reasons unknown.
I download myself. After the minor revolution over here of the Freestyle Libre (which is almost a CGM, but not quite, and which is ridiculously affordable) I did that a lot lately. And had to adjust insulin down and down again.
My doc doesn’t. Which is probably old-fashioned, but here we get a lot of hand-written journals still. And (see above), no CGM-data anyway.
Also a big Gasp! (with several exclamation marks): You adjust in half-units? *faints*. I just adjusted the daily total down by 0.55 units/24 hours and I think the biggest step was -0.05. Diabetic bodies are strange in how different they are 🙂