When the Abbott FreeStyle Libre first hit the American market a few months back, there was much ado about the label “Flash Glucose Monitoring” versus Continuous Glucose Monitoring (CGM).
The Libre is a not a CGM as we know it, many argue, because: A) It doesn’t automatically stream glucose data every few minutes but instead requires the user to waive a handheld device over the round sensor to obtain readings; and B) There are no alerts for Low or High glucose values on the Libre, as it just passively tracks the data.
Many see this as a limitation, hindering the Libre from being as effective and useful as the two existing CGM devices on the market, from Dexcom and Medtronic.
Having snagged FDA approval in Fall 2017, the Libre has only been available in the US for a short time, but the do-it-yourself (#WeAreNotWaiting) hacking community across the world is already finding ways to tap into the Libre and unlock the device’s greater potential. The effort that began in Europe to get continuously streamed data, alerts and alarms — turning the Libre into a more fully functioning CGM — has now hit American shores.
It’s important to note that outside the US, Abbott just recently launched its own LibreLink mobile app for both iOS and Android that allows users to scan the Libre sensor directly to a smartphone (!). We’ve asked when this will be available in America, but Abbott hasn’t offered any timeline yet.
Meanwhile, DIY’ers are tackling the challenge of beefing up Libre functionality in a variety of ways:
‘Continuous’ Diabetes Data, Alarms, Predictions
As noted, for now the Libre as marketed requires users to wave a handheld receiver over the sensor — worn on the upper arm — to get readings. You do this to obtain data as often as you’d like, but it doesn’t automatically beam to a smartphone app or receiver like traditional CGMs.
Workaround Mobile App: Many people are now using an app called Glimp, an independent (not from Abbott) Android app designed to replace FreeStyle Libre’s reader, available in the Google Play Store. Glimp reads glucose values directly from the sensor using a different algorithm than Abbott’s, so the glucose values vary slightly, we’re told.
To use it, you need to strap your smartphone over or near (within 2-3 cm) the round Libre sensor. It then feeds continuous data into the cloud via the Nightscout (CGM in the Cloud) solution, and can allow for data-sharing on multiple devices, plus setting up alerts and alarms.
Smartwatch Style: See the above, except that a smartwatch can be used as the receiver of continuous data from the Libre. Many have shared photos where they take a smartwatch’s brains and connect it over the sensor, whether that’s with tape or adhesive or a 3D-printed design case that holds it in a strap. That homemade transmitter then talks via a signal to a smartphone app, and beyond.
BluCon Nightrider by Ambrosia: A small San Francisco-based company founded in September 2016 creates a little device that reads data from the Libre. It’s a disk that sticks right on top of the Libre sensor and picks up glucose readings every 5 minutes, sending them to its “LinkBluCon” app for iOS or Android phones. It offers alarms and even glucose trend prediction via arrows indicating up or down. This is a disposal device that is supposed to be replaced with each Libre sensor, and it’s a bit of an investment at $135.
It’s gotten a lot of great reviews, but also some complaints that it needs a lot of adhesive to stay in place, and that the readings tend to run low. As always, Your (Diabetes) Results May Vary.
It can all get pretty techie and nuanced, but thanks to the Nightscout community, there’s a pretty handy guide on some of the basics for getting set up.
Libre Geeks in the DOC
You can learn what folks are saying in the online community in part by checking out the “Libre Geeks” group on Facebook, where these homemade workarounds are being discussed and shared.
“The name ‘Libre Geeks’… seems appropriate,” says type 1 David Burren in Australia. “It’s just another example of people using medical products in the real world, and finding real-world solutions to integrate the Libre product into their diabetes management.”
He used the Libre in Australia for roughly 16 months, including feeding the data into xDrip and into his own OpenAPS rig. He started out just using the Abbott gear, and then tried the BluCon Nightrider gig for a while as well. The ease of use and alarms made a big difference in his life, Burren says, and he’d still be using Libre now if it weren’t for the cost and the fact that it isn’t covered in his national health plan.
Across Europe, where the Libre has been available longer, there’s a LOT of online discussion about hacks to use the Libre as a fully featured CGM — like this one from Diabetes Views with a lot of detail including tips for extending the phone’s battery life.
Here in the US, we heard from D-Dad Jason Peters in Illinois, whose 10-year-old son had started with Dexcom’s CGM five years ago but they didn’t have faith in its accuracy. Lately, they’ve been using the BluCon Nightrider device that sits over the Libre sensor, effectively turning their son’s phone into a CGM with alarms and the ability for multiple followers to stream the glucose data via Nightscout and xDrip.
“Libre with xDrip has been great,” Peters says. “We’ve had nothing but good experiences. We would like to get him a smartwatch now. This stuff really changes lives!”
But not everyone sees this kind of DIY use of the Libre as positive…
Joe Short in Spain for one, who was diagnosed nine years ago, has been using Libre for about two years with the Glimp app on his smartphone. He has used it for basic data-viewing and not alerts, because he sees a danger due to the lag-time in glucose readings and how so many folks may not know exactly what they’re doing in making this D-tech.
The official LibreLink app from Abbott is the only “safe” way to access to readings by the minute, he notes, whereas the rest of these hacks have a lag up to 20 minutes or longer, and Joe doesn’t believe that is good enough to make dosing decisions on or even get accurate alarms.
“I’m concerned that many DIY efforts are with too much guesswork and too little medical knowledge. They can overly influence vulnerable people,” he says. “This can be a particular problem with parents of T1s. They find a solution with DIY and cannot see problems and issues. They’re blinkered, and that’s dangerous.”
Well… your opinion may vary, of course, on whether all of this do-it-yourself tech is great, risky, or just a short-term “band aid” fix until industry catches up.
In any case, here’s to finding the solutions that work best for each of us!