Onlookers might think the scariest parts of living with type 1 diabetes (T1D) are the daily injections and the long-term threat to your toes, eyes, and kidneys. For many living with it, though, the scariest part of T1D is actually the daily threat of severe hypoglycemia — also known simply as low blood sugar.

“Severe hypoglycemia (SH) is the most frequent and potentially serious complication affecting individuals with type 1 diabetes,” explains recent research from the T1D Exchange Outcomes Research team with participants from the T1D Exchange Registry — published in the American Diabetes Association’s Clinical Diabetes journal and sponsored by Zealand Pharma.

In the United States, SH is responsible for approximately 300,000 visits to the emergency department every year, explains the study.

Despite how common and part of everyday life hypoglycemia truly is for people with T1D, there is very little research on the lived experiences of SH and using emergency glucagon — a potentially lifesaving medication that can quickly reverse low blood sugar.

Here, we’ll look at highlights from this study — Severe Hypoglycemia and the Use of Glucagon Rescue Agents: An Observational Survey in Adults with Type 1 Diabetes.

Experiences with Severe Hypoglycemia: Study Highlights

The Outcomes Research team designed and conducted an in-depth survey to gather real-world insights on the everyday experience of hypoglycemia and using glucagon as a person with T1D. Thank you to our Registry participants for participating!

About the participants 

  • 316 participants recruited from the T1D Exchange Registry
  • 59% identified as female
  • 80% used a continuous glucose monitor (CGM)
  • 76% used an insulin pump
  • 30% used multiple daily injections
  • 4% used inhaled insulin
  • 59% have private health insurance
  • 23% were on Medicare
  • 11% were on Medicaid
  • 1.3% have no health insurance

Classifying different levels of hypoglycemia

Within the survey, different levels of hypoglycemia were classified as the following:

  • Mild: 54 to 70 mg/dL
  • Moderate: below 54 mg/dL
  • Severe: Requiring assistance to treat hypoglycemia due to an altered physical or mental state

Who feels the physical symptoms of hypoglycemia?

  • 33.9% report “normal” awareness
  • 44.6% report “impaired” awareness

“Impaired” awareness suggests a person is experiencing “hypoglycemia unawareness”. Hypoglycemia unawareness is a term to describe when a person no longer feels noticeable symptoms — which also serve as warning signs — of low blood sugar. This lack of physical symptoms increases a person’s risk of SH because they cannot react in time to treat the low before becoming physically or mentally unable to do so.

When do you worry most about hypoglycemia?

  • 75% worry most about low blood sugar during exercise and while sleeping

How do CGMs affect the frequency of severe hypoglycemia events?

  • CGM users experience an average of one SH event in the previous 12 months
  • Non-CGM users experienced an average of 2.5 SH events in the previous 12 months
  • CGM users reported an average of five SH events in their lifetime*
  • Non-CGM users reported an average of 4.5 SH events in their lifetime*

*These numbers excluded participants who’ve experienced more than 100 SH events in their lifetime.

Getting treatment for severe hypoglycemia

  • 62% have received care from a paramedic for an SH event
  • 59% have visited the emergency department for an SH event
  • 36% have stayed overnight in the hospital after an SH event 

The overall impact of SH on a person’s life

While the experience of a severe low blood sugar event may only last an hour or two plus recovery time after receiving treatment, the long-term effects are significant.

The following are general understandings of the potential impact of frequent SH on a person’s life:

  • Can significantly affect a person’s emotional well-being and quality of life
  • Can be an ongoing, daily source of distress, anxiety, and worry
  • Can increase a person’s risk of all-cause mortality and cardiovascular disease
  • Can lead to significant costs and worsen the economic burden of diabetes
  • 50% said they feel anxiety, stress, fear, panic, weakness, or embarrassment

Getting emergency glucagon

  • 97% have received prescriptions for emergency glucagon
  • 80% have a current prescription for emergency glucagon
  • 75% have filled their prescription for emergency glucagon
  • 83% have received education from their healthcare team on glucagon

Have you asked your doctor for a prescription for today’s single-step glucagon options? If not, definitely consider making it a priority. Even if you’ve lived with T1D for decades and never experienced a severe low blood sugar, it can happen.

Thank you to our Registry participants for contributing to meaningful research on hypoglycemia!