Originally published May 3, 2018.
Most in the diabetes community are familiar with the cycle of hype, promises, and potential benefit that starts when a piece of potentially life-changing diabetes tech hits the market.
Now that the Abbott FreeStyle Libre Flash Glucose Monitoring system has been on the U.S. market for several months, we thought it was time to explore the user experience in more detail.
The Libre, approved in September 2017, is the first FDA-approved glucose monitoring device that doesn’t require fingerstick tests for calibration. Instead, the device comes factory calibrated. The system consists of a round, quarter-sized sensor worn on the back of the upper arm and a thin, pocket-sized reader. A small wire comes off the sensor and is inserted into the skin. When a user swipes the reader over the sensor, a glucose reading is produced along with trend data.
Sounds pretty simple and pretty innovative, right? But what does the Libre experience actually look like for users? We talked to three users from different sections of the population. They shared with us their takes, tips, tricks, and what they think potential users should know before investing in the device. (See the awesome "8 Libre Tips" list below)
Ali Jordan is a self-described Libre “power user.” She's a type 1 who lives in the San Francisco Bay Area and works for AirBnB. She has also been using the Libre longer than anyone else we talked to -- longer, in fact, than it’s been approved in the States.
“I had family friends shipping the sensors to me from Europe,” Jordan says. “It was actually pretty lovely. The European sensors lasted for two weeks without having to be changed, and they didn't have a 12-hour warm up period like the U.S. model. It was only an hour.”
The Libre was the first glucose monitoring system Jordan ever tried, and the device has been a constant companion since she adopted it several years ago now.
“I was pretty anti-wearable-tech for a while,” she says. “But the CGM was something everyone raved about and told me I had to try. I decided to try the Libre predominantly because I like that had a slimmer profile than the Dexcom. It's a little sexier. It's not quite as medical-tech looking.”
What started in many ways as an aesthetic decision – pushing for a slimmer CGM system – soon became a win on the functionality front as well.
Jordan says she loved the Libre from first try. “I think it was a really great entry into CGMs for me, just because you do still have to check it, you have to be on top of it. It's not constantly reading or monitoring and sending to your phone. You actually have to use stay on top of things and swipe the reader to see what your blood sugar is,” she says.
In addition to finding that the system helped her be more mindful of her BG readings, Jordan soon started interacting with her diabetes far differently based on the knowledge it provided: "With all this data – I was able to treat differently."
Jordan felt newly empowered, which she cites as a key benefit of the device and something that isn’t talked about as much as the convenience factor of not having to take fingerstick tests all the time.
“I loved being able to see the patterns,” she says. “I loved seeing my blood sugar rising, going down, things like that. This was information I completely lacked just doing fingersticks.”
Jordan was diagnosed in 2008, when she was a teenager. Unlike many with type 1, she didn’t grow up with fluctuating blood sugar levels being normalized.
“There was always kind of this negative feeling associated with having high blood sugar,” she says. “I didn’t want to check. I didn’t want to be outside a certain number because it would be negative to be there. Having the Libre and having the ability to see a constant number, to see patterns, to see fluctuations, made my diabetes more of an informed thing. The Libre broke that negative stereotype.”
Jordan has also tried the Dexcom G5, but prefers the Libre. She has been continually impressed by its ease of use and durability. In all her time using it, she says she’s only knocked the sensor off her shoulder or had the sensor come off itself a couple of times.
Simplicity and Durability – A Winning Combination
While not one to adopt the label, Shawn Gotlib likely also fits the bill of a "power user." Gotlib, 56, was diagnosed with type 1 diabetes when he was 42 and runs a construction business in midtown Manhattan. He describes his day as partially out working on job sites, partially in company meetings, and partially at his desk. He’s a physical guy and needs his diabetes tech to stand up to strenuous activity.
Gotlib has been using the Libre for three months now with few complaints. He has rotated between the Libre and a Dexcom CGM, but says in many ways he prefers the Libre for its added slimness and discreetness, simplicity of setup and use, and ease of sensor insertion.
“I like how easy it is to use right out of the box,” he says. “The size of the sensor is nice. And it’s easy to get a quick reading, even in winter when swiping the reader through my coat.”
Gotlib walks to most job sites, logging 10,000 steps or so a day. Between the stress of the jobs – construction in Manhattan isn’t exactly low-key work – and the physical activity, he needs a monitoring system that can hold up and let him discreetly check his levels. His hours are long and he can’t always get a way to do a fingerstick test or interact with a bulkier CGM system. So far the Libre has consistently delivered on his needs.
Gotlib warns prospective users or new users to keep a close eye for suspect readings, though. “If you’re not sure about a BG reading, or you get an extreme high or low, do a regular fingerstick test,” he says. "The Libre can be 'off' sometimes – especially on the last 23 hours of the sensor life.”
He advises swiping for a reading often, very often, as well. Frequent tests can help flush out the suspect readings. Like Jordan, he finds the system empowering. “I’ve learned quite a bit about how certain foods affect my BG, especially high-protein, and or high-fat meals – slow climb,” he said. “Also slow drops on exercise days. Things I already knew about, but seeing them in real-time is good.”
His biggest complaint is one of convenience: he wishes the Libre worked with his smartphone, allowing it to function as the reader. “The technology is there,” he says. “Even if you have to hold the phone to the sensor for a reading, they need to add the interface. At this point, there shouldn’t be a need for the receiver.”
Consistency Is Key
Alan Monroe is a self-employed accountant with a third-generation family accounting business in rural southern Illinois who was diagnosed with type 2 diabetes in 2007.
Monroe came to the Libre more through his own research than word of mouth. He saw a magazine article about the device that initially caught his attention. After that he did quite a bit of research, going to the Libre website, reading product stories, digging around on Twitter and YouTube for information and user videos, then went to see his local physician, who prescribed the unit to him and several other suitable patients as well.
He started using the Libre around the first of March, and it’s the first and only CGM system he has used. Like Jordan and Gotlib, he reports feeling empowered and learning more about how food and lifestyle choices impact his glucose levels than he ever has before.
“In the past I used various glucometers,” he says, “but was not the most regular at doing the testing. It didn't bother me to do the tests. I was just too lazy to pick up the kit, pull out the lancet device, put a strip in the meter, and do the test. I went a lot on how I felt, and not much else. Most recently I was using the iHealth labs meter, which did a good job of syncing with my phone, but only gave me a snapshot of my glucose levels, instead of the information I am getting with the Libre system. I am very pleasantly surprised at the charts and graphs that are available when I download the data to my computer.”
Monroe doesn’t have anything specifically negative to report about the Libre and has recommended it to a number of people he knows with both type 1 and type 2 diabetes. But he adds there are a few things potential and new users should be aware of, though.
“When you initially put the sensor on, there is a 12-hour period before it starts giving readings,” he says. “For some that might be something bothersome. For me as a T2, not a huge deal.”
He also adds that the sensor only holds glucose readings for eight hours. “For me that's not too bad, as I have been taking numerous readings during the day.” Others, though, he says, depending on their lifestyle, sleep, and testing habits, might want a longer data window.
Monroe admits he’s been pretty chained to his desk the last three months, through the accounting tax season, and is anxious to see how the sensor performs when he gets more active.
Hacking the FreeStyle Libre
On top of these user-experiences, we've also seen many in the Diabetes Community turning to the #WeAreNotWaiting mantra and embracing different ways to "hack" their FreeStyle Libre to use with other tools and gadgets -- to get data and alerts beamed to their smartphones without having to scan the Libre sensor, for example. You can read our February 2018 coverage on that, here at the 'Mine.
Insider Advice: 8 Tips for Getting the Most Out of Wearing the Abbott FreeStyle Libre
Author Greg Brown culled the following tips from the users interviewed above:
1. Look for flat application spots. The sensor is supposed to be worn on the back of the forearm. Our users recommend finding a flat spot on your skin there if you can, so the edges of the sensor are less likely to peel up.
2. Add adhesive to help it stick. For the most part, the sensor seems to stay in place, but like with many diabetes devices, some users report issues with the sensor’s adhesive peeling up, particularly in hot weather or while sweating during physical activity. If that’s a problem for you, explore medical adhesive wipes you can use to help the sensor stay put.
3. Beware backpack sabotage. If you’re a student or someone who wears a backpack regularly, which is super-doable with the Libre sensor because of its slim profile, be careful. It’s easy to slide the backpack straps down your arm, forget ting the sensor is there, and knock it off.
4. Watch for wonky readings. Users report occasional extreme high or low readings, particularly in the last day or so of the sensor's 10-day lifespan. If you get a strange reading, always do a fingerstick test to double-check your levels, remembering that glucose results will always be slightly different taken from the fingertips versus forearm skin.
5. Consider sensor insertion times and sensor power up times. When you insert the sensor, the body responds to the small trauma. Cellular repair uses glucose, potentially influencing readings right after sensor insertion. For this reason, some users prefer to insert their sensor right before bed, allowing the sensor to settle in to their glucose levels overnight, when inactive. Others apply the sensor and then wait 12 to 24 hours before first powering it up rather than possibly waste a sensor day on odd readings.
6. Shifting environments, shifting numbers. Bodies, and blood, react to shifts in environmental stimuli. Stepping out of the shower and taking a reading isn’t the best idea. Neither is standing up from a lying position and immediately doing the same. Or, say, taking a reading immediately after boarding or getting off an airplane.
7. Avoid complacency. Where it’s not constantly sending you data by default like a CGM system, the Libre requires a little self-motivation. You have to swipe to really know what’s going on. Don’t let wearing the sensor alone lull you into a false sense of security: make a routine or habit of swiping for readings at scheduled times or intervals.
8. Be empowered, but not over-reactive. Knowledge, and data, have proven to be power for Libre users we’ve talked to. But don’t let the data run you, a trend that’s easy to succumb to in our day and age of constantly tracking and monitoring all our available health data with smartphone apps. Take in your numbers, look for accurate readings, but be careful not to react to every fluctuation or trend shift.
Greg Brown is a freelance writer living in western Maine. He has written for Consumer Reports Magazine, Consumer Reports Online, The New York Times, and the Chicago Tribune, among other publications. He can be found online at www.yellowbarncreative.com.