DIB Syndrome

Sudden unexplained deaths of young people with type 1 diabetes or Dead in Bed Syndrome

It’s a parent’s greatest fear, and it’s possible that when doing your own research on type 1 diabetes (T1D) you come across ‘Dead in bed syndrome’ or DIB, a jarring term that can sometimes be used to describe the sudden unexplained overnight deaths of young people with T1D.

DIB is used when someone with T1D goes to bed appearing to be fine but passes away sometime during the night.

The first thing to know is that DIB syndrome is a rare event, accounting for only about 6% of cases of all deaths in under 40-year-old people with type 1 diabetes, according to Diabetes UK.

In comparison, diabetic ketoacidosis (DKA) is a significantly more common cause of death, accounting for around 2% to 3% of all deaths in people with diabetes.

Currently, the cause or causes of DIB syndrome have not been confirmed.

There is evidence to suggest that DIB deaths could be caused by nighttime hypoglycemia triggering disturbances in heart rhythm or cardiac autonomic neuropathy (damage to nerves that control the functioning of the heart). There is a known connection between hypoglycemia and potential cardiac issues.

It has also been noted that DIB syndrome incidents increased in the 1980s when human synthetic insulin was introduced (previously insulins were derived either from porcine or bovine sources). There is research that suggests synthetic insulin has a reduced stress response in comparison to animal insulin. It is believed that potentially the body does not recognize hypoglycemia and respond with the production of glucagon as well with human-derived synthetic insulin as it does with animal-derived insulins, but this has not been well-researched enough to be established as a definitive cause.

As of today, the prevailing theory is that DIB is caused by hypoglycemia, so it’s important to take extra care to try and avoid nocturnal hypoglycemia.

Try and aim for blood glucose levels between 6.5 to 8.0 mmol/l before bed and between 5.5 and 7.5 mmol/l upon waking and this should help with preventing hypoglycemic episodes overnight. Speak with your health care team to establish blood glucose targets that work for you, or your child.

If possible, try to test blood glucose during the night, from time to time, to determine baseline levels overnight and to ensure you or your child is not frequently going low during sleep.

Various studies have been done on unexplained death in people with type 1 diabetes and although causality is not yet fully known, there has been a demonstrated decrease in the incidence of these events with improvements in blood glucose monitoring devices such as continuous glucose monitors (CGM) and hybrid closed loop systems. One such paper is at: https://www.sciencedirect.com/science/article/abs/pii/S0168822722008567.

JDRF Canada advocates for universal access to diabetes devices such as CGMs through its Access for All program, and the newly announced federal pharmacare program should also make these devices more available and affordable to all Canadians with T1D.

JDRF is also funding research into a drug from Zucara Therapeutics that could potentially be a treatment for hypoglycemia, and that is currently in clinical trials.

It’s important to remember that dead in bed syndrome is relatively rare, and that research is being done every day to both improve diabetes technology and decrease likelihood of frequent hypoglycemic episodes.

Additional resources to link to you sources of community or professional support:

For more information about mental health and type 1 diabetes:
https://breakthrought1d.ca/life-with-t1d/mental-health/
To find a trained mental health provider with specialized knowledge in diabetes:
https://directory.breakthrought1d.ca/
For community programming and connection:
https://breakthrought1d.ca/support/