Please do not interpret this post as medical advice. Everyone is different, and the tools I use might not work, or may even be dangerous, for you. Consult your healthcare provider before making any changes to the way you manage your diabetes.
Update: I’ve decided to build a new company focused on improving diabetes care using data and digital tools. Sign up to be an early member here!
After publishing my last post about how I used data from a continuous glucose monitor to dramatically improve the management of my diabetes, I got a lot of questions about which tools I use. Getting everything set up was not straightforward and required a fair amount of research, trial, and error. So I thought I’d contribute my experience and hopefully help others.
Medicine, Devices, Sensors & Apps
I’ve divided my tools into four overall categories to make it easy to overview:
Let’s start with the basics. To help the body process glucose I use insulin like most diabetics. I use standard injection pens and typically inject 4–7 times a day depending on what my blood sugar level looks like.
If my levels drop too low, there is a simple fix: snacking. However, there are challenges with eating whatever I have lying around my house or office as I typically don’t know what effect it will have on my levels. Instead, I always carry glucose tablets that I know, through testing, will increase my level about 20 mg/dL. And, the increase is almost instant; I don’t have to wait for the tablets to go through my digestive system.
I’m an Apple person and have been for the past ten years. I have Apple devices exclusively in my home except for my Amazon Echo. These devices are used for many more things than just helping me manage my blood sugar, but they all play a crucial role. I use a MacBook Air as my primary work computer and spend about 10–12 hours on it every day. My phone is an iPhone X, and the watch I currently use is a first generation Apple Watch. The watch is helpful as it enables me to glance at my blood sugar level without having to pull out my phone. It also helps me track physical activity more accurately, and I use the data it collects to better understand how being active effects my blood sugar.
Note: Some of the tools mentioned work for Windows as well and for Android there are alternatives so don’t be discouraged if you’re a non-Apple user.
Now to the fun stuff. For continuous glucose monitoring, I use the Freestyle Libre sensor from Abbott. It’s a so called “Flash Glucose System ” that uses near-field communication to enable the wearer to scan it with a standalone reader to see his/her latest data. I like the Libre sensor because of its low profile and how easy it is to apply to your arm — which you have to do every ten days. And for a while, I was carrying the standalone reader device that comes with it. In Europe I believe you can also use your phone to scan the sensor but that feature is not available in the US, yet.
Carrying an additional device that I had to keep charged etc. was fine for a while but ideally I wanted everything to be on my phone. Then I came across a small device called the MiaoMiao reader. It’s essentially a little add-on to the Libre that you place on top which automatically scans the sensor every 5 minutes and sends the data to your phone. This add-on transforms the Libre to a fully-featured continuous glucose system. You attach the MiaoMiao reader on top of your Libre sensor using adhesive stickers, and even though it does make it slightly bigger, it still sits comfortably on my arm without being in the way too much. It is also rechargeable, which is something most other Bluetooth add-ons are not.
Now that we’ve covered the medicine I take, the sensors that measure my levels and the devices that receive the data let’s go through the different apps I use to bring it all together.
First of all, the app that I use more than any other app on my phone is called Spike. Spike displays my blood sugar data as a graph over the last 24 hours in 5-minute intervals. It also gives me the direction my level is going and how fast. I can’t overstate how helpful this is as I try to figure out if I need to make a treatment decision. Spike is the product of a thriving hacker ecosystem that exists around diabetes management tools. Since many of these tools require approval by the FDA to be official and published in an App Store, many developers have opted to use alternative paths like TestFlight or by merely allowing users to compile them on their own.
Spike has tons of functionality like alarming on highs and lows, allowing you to input your insulin and carb intake, and much more. It’s the most essential app on my phone by a significant margin.
Lastly, Spike also has an app for my Apple Watch that allows me to glance at my wrist to check my level. It’s incredibly valuable in situations when your phone might not be convenient to pull out such as when I’m riding my bike or driving.
But tracking and managing my levels on a day-to-day basis is only one of the benefits of having access to continuous data. Many of the lessons I’ve learned have come from analyzing data in aggregate, allowing me to compare days and weeks with different routines, diet and trying out different types of insulin. To do this, I use a system called Nightscout. It’s more of a platform and is also created and maintained by a community of open source developers. Nightscout collects all of the data generated both by my sensor and Spike and makes it available through a web interface as well as an API. This is great because through it you can allow other people to “follow” you and your curve in almost real time. It’s especially valuable for parents and others that are guardians of people with diabetes.
For me, Nightscout provides two key features: reports which allows me to view more substantial amounts of data in an aggregate format and that I can share with my endocrinologist, and an API that allows other applications, that I authorize, to get access to my data.
An example of an app that uses the API is something called Nightscout Menubar. It’s exactly what it sounds like, an app that displays my blood sugar level in the menubar of my Mac, letting me easily glance at it while I’m writing posts like this for example 🙂
Nightscout has a ton of features and is backed by a very active community so if you’re interested in learning more this is a good start.
In my previous post, I briefly mentioned using Excel for tracking experiments that I ran on myself. It’s quite straightforward and allows me to keep track of the things I eat & drink and activities like running and playing basketball. Since I have all the data saved it’s easy to go back and fill out data after the fact should I forget to enter it when it happens. The sheet with the experiments doubles as a tool to help me remember how much insulin to take for the salad at my favorite café, Reveille.
Lastly, I recently started using an app on my phone to track my sleep called SleepCycle. Lots have been written about sleep quality, the amount of sleep we get, and it’s impact on blood sugar. Anecdotally, I feel like my levels are harder to manage on less sleep. I look forward to tracking for a while longer and will publish any findings I uncover.
Why all of these tools?
As you can see, it’s not the simplest of setups. But these tools enable me to do two crucial things:
- Tightly manage my blood sugar levels on a daily basis, correcting highs with extra insulin and lows with glucose tablets.
- Analyze my data, develop insights and find patterns that are otherwise hard to spot.
Both of these helps me to learn more about how the disease is affecting my body. And, the more I learn, the more personalized my strategies for management become.
There is still room for improvement. Many of these devices are still too expensive, not accurate enough and the data is hard to bring together and make sense of. I think the ecosystem today is missing two important and valuable features. First is being able to set clear goals for what you want to work on. Lifestyle changes are hard to sustain and focus is essential. And there are always tons of things you could be working on, but the key is to concentrate your efforts on a few clear goals and learn from them.
Which brings me to the second one — testing and iterating. For building websites for example, many services help you test ideas and analyze the results. How come there isn’t something like that for our bodies? I hypothesize that we’ll discover that making a few critical changes in things like diet and medication can have tremendous impact on our overall well-being.
I hope you enjoyed this follow-up post. I’m always curious to hear what setups other people with diabetes use so please reply in the comments or send me an email at henrik -at- henrikberggren.com
Thanks to David Kjelkerud.