How to Beat Diabetes Tech Distress

Insulin pumps and continuous glucose monitors are life-changing tools for many people with diabetes, but these devices can have a downside. The relentless barrage of data and alarms, combined with device quirks and inaccuracies, can lead to anxiety and distress.

“Diabetes devices can improve diabetes outcomes, but they are associated with significant mental and emotional burdens,” says Estelle Everett, MD, an endocrinologist at the Geffen School of Medicine at UCLA.

If your diabetes devices are driving you nuts, there’s a way to enjoy a better experience. You can fight tech burnout by customizing your alarm settings and learning when to take your data with a grain of salt. You’ll reduce the stress that comes with unnecessary alarms, overtreatment, and the blood sugar roller coasters that follow.

Both CGMs and insulin pumps issue a variety of alarms, alerts, and reminders. These notifications are a critical part of what makes these devices so useful, and at times they can be literally lifesaving. But to many people, the alarms feel constant and excessive.

Gwendolyne Jack, MD, an endocrinologist at Weill Cornell Medicine in New York City, says that an automated insulin delivery system can have “more than 30 different types of alerts and alarms.” If you have a smartwatch, too, you might have as many as three devices with “alarms going on at the same time about the same exact issue.” Alarms aren’t just annoying: They can also be socially inconvenient or embarrassing.

This leads to alarm fatigue, says Dr. Jack, which she defines as “receiving so many alarms that you become desensitized and become less likely to respond appropriately to alarms in the future.” When tech users ignore the alarms that really do need treatment, it only leads to new blood sugar management problems.

Dr. Everett, who has conducted research on the psychosocial aspects of diabetes technology, says that a significant minority of device users routinely silence or ignore their alarms, and that some have even resorted to intentionally underdosing or skipping insulin to avoid alarms. And, unfortunately, most clinicians don’t address the issue of alarm fatigue with their patients: “78 percent say that their provider has never asked about the emotional and mental burdens associated with diabetes tech,” says Everett.

One solution to this diabetes tech burnout is to optimize your alarm, alert, and notification settings.

Jack offers a number of ideas.

• Reset your alarm thresholds so your devices make a noise only when you really need to take action. There’s no reason for a noisy alarm when your blood sugar does not require immediate treatment.
• Adjust your daytime and nighttime thresholds. You may want to give yourself more wiggle room overnight to catch more uninterrupted sleep.
• Turn off pump notifications if they bother you.
• Use “vibrate only” for blood sugar alerts that are not emergencies.
• Use quiet modes to temporarily silence alarms during socially inconvenient times.
• If available, engage the “delay high alert” option, so high blood sugar alarms will sound only if your level has been elevated for a certain customizable amount of time.

The bottom line is that you should do what you can to minimize the alarms that are unimportant to you, which will help you respond to the alarms that matter. “These notifications should not become noise,” says Jack. “They should be perceived as very important and relevant.”

“We all kind of know it happens, but it’s not actually talked about very often publicly,” says David Ahn, MD, an endocrinologist and the chief of diabetes services at Hoag Hospital in Newport Beach, California. “It’s not in the product manuals, and I think a lot of clinicians, even myself included, might not give warning to our patients.” Dr. Ahn says that discussion of the phenomenon, generally called compression lows or pressure lows, is almost completely absent from the medical literature.

Compression lows happen most often in the middle of the night, when you’ve rolled over in your sleep and your CGM sensor is pressed between your body and the mattress. Suddenly, you’re awoken from a deep sleep by a low blood sugar alarm. Your CGM app shows a dramatic blood sugar drop that has seemingly come out of nowhere. But “this is not an actual low blood sugar event,” says Jack.

These false alarms interrupt sleep and can touch off additional blood sugar management problems. “The consequence of that is that patients end up treating this perceived low, and as a result have hyperglycemia which they may end up overtreating,” says Jack. “It becomes a roller coaster.”

Even people who know about compression lows may end up treating a fictional hypoglycemic episode, drinking juice or eating candy in the middle of the night just to be safe. “In real time, it’s 3 a.m., you’re getting an alert telling you that your blood sugar is 40 mg/dL, you don’t know whether it’s going to pop right back up,” says Ahn. “It can be very alarming.”

Many CGM users are aware that their sensors are less reliable during the first day they’re in use.

“When you first put in a new sensor, there’s a traumatic body response,” says Ahn. “Your immune system detects that there’s a foreign body and it mounts an inflammatory response. Usually that kind of settles down after the first 12 to 24 hours.”

As a result, it may be wise to be skeptical about surprising measurements on the first day you use a new CGM sensor. And it’s an especially good time to confirm dubious blood sugar measurements, especially high and low readings, with a fingerstick and a conventional blood sugar meter.

Some CGM users have found a workaround for this, says Ahn, that’s sometimes called “soaking.” They attach their next sensor to their body early, up to 24 hours before they activate it. The idea, says Ahn, is to get the inflammatory response over with before starting the clock on the sensor’s 10 or 14 day time period. “In theory, you’ll start with clean data,” he says.

This technique doesn’t work equally well with every CGM: Dexcom G7 sensors activate themselves upon insertion. But it is possible to have two G7 sensors running at the same time during the 12-hour grace period at the end of the first sensor’s session. “I have patients who will put on their next sensor right when their 12-hour grace period starts, but not activate it in the smartphone app until the first session completely ends,” Ahn says.

Soaking a sensor, however, is not endorsed by the CGM manufacturers.

CGMs are extraordinary tools, but they are not perfect. If you’ve been trained on the use of a CGM, you’ve probably already been taught about two of their known flaws:

• Lag Time CGMs don’t sample your blood: They sample the fluid between the cells under your skin. As a result, your CGM’s estimate of your blood sugar level lags 10–15 minutes behind your true blood sugar level.

  [3]

• Margin of Error Even a CGM sensor that is functioning perfectly operates within a significant margin of error.

  [4]

It’s important to know about these two factors, but they just scratch the surface, says Ahn: “There are a lot of reasons why people can be getting very erroneous readings that are not explained by interstitial glucose lag time or natural variance [margin of error].”

Other factors that can reduce CGM accuracy include:

• Temperature Sensitivity “Hot showers can affect the accuracy of these sensors,” says Ahn.
• Interfering Substances CGM measurements can be thrown off if you’ve taken acetaminophen or vitamin C supplements.

  [5]

• Physical Contact “If you knock the sensor, it will sometimes not recognize that it’s failing and just give you really low numbers,” says Ahn.

“There are a lot of different ways these sensors can fail, and this of course can lead to frustration,” says Ahn. Inaccurate readings easily lead to unnecessary blood sugar roller coasters.

Ahn says that individual sensors seem to vary in their accuracy and tendencies, with some providing smooth and clean blood sugar trends, and others jumping around unpredictably from one measurement to the next. “Every sensor has a different personality, almost. Some sensors seem very jittery.”

If a CGM measurement doesn’t make sense, double check with an old-school blood sugar meter. Jack recommends asking yourself: “Was this a true alarm?”

CGMs offer an estimate of your A1C level, the measurement that most clinicians use to judge the overall success of your diabetes management. Ahn says that this number, sometimes named the glucose management indicator (GMI), can be inaccurate, so you shouldn’t let it stress you out too much.

It is possible that your glycation gap will be consistent from one sensor to another, and some researchers have proposed a new personalized A1C estimate that would take this into account, says Ahn. In the meantime, if your GMI was significantly different from your lab-measured A1C at your latest checkup, it may be similarly inaccurate in the future, too.

Skin reactions are another common source of frustration for people using wearable diabetes devices. Many people experience irritation from the adhesives used on CGM sensors and insulin pump infusion sets; sometimes it’s bad enough that they have to remove a device early. Others find that their devices just won’t stay on their skin long enough.

• Rotate adhesion sites, choosing areas with healthier and smoother surfaces, away from parts of the body that bend or crease.
• Shave the area before attaching.
• Clean the area with soap and water, and let it dry thoroughly.
• Use barrier wipes, extra tape, or specially made patches to improve adhesion.

If you’re experiencing skin irritation, Ahn strongly recommends the skin solutions resource published by the PANTHER Program and the Barbara Davis Center for Diabetes in Aurora, Colorado. The guide includes unconventional techniques like using a steroidal nasal spray (such as fluticasone) on the skin before attaching a device, potentially tamping down on an inflammatory allergic response.

It may ultimately be necessary to experiment with alternative devices. “If these more conservative methods don’t work, I’d recommend switching to different products,” says Ahn. Different products and different manufacturers use different sticky substances, and if one CGM gives you a rash, it’s possible that another will not.

If your diabetes devices are causing you stress, you may simply need a break. Jack says that some people will benefit from a “vacation” from their devices.

It is entirely possible to achieve a very high level of diabetes control without the latest diabetes technology. Injections and fingersticks worked well for decades, and they still work well today. A few days without alarms and attachments could help you reset and recommit to your diabetes management.

It may even be a good idea to practice managing diabetes without devices every once in a while. Everett notes that tech failures and supply disruptions are extremely common, and you might find yourself without insulin pump infusion sets or CGM sensors at an inconvenient time.

• You can optimize the settings on your diabetes devices to reduce alarm fatigue; silencing unnecessary notifications will make the alarms you do receive more meaningful.
• CGMs are sometimes inaccurate, especially within the first 24 hours and during compression lows. If a blood sugar measurement seems unlikely, it might be wise to confirm with your blood sugar meter before treating it.
• Planned "tech vacations" away from diabetes devices can be an effective strategy to reduce burnout and keep you motivated.