Sometimes, my blood sugars drop as low as 40 and then skyrocket up to the 500s during the course of a day. Reasons can vary from specific insulin dosing or carb counting mistakes to laziness on my part… or just because the sun decided to shine brighter, a breeze is blowing a certain way that day, or someone sneezed on the other side of the world.

That’s just life with diabetes on certain days.

As I tend to say, these are days when I’m “riding the glu-coaster.”

What I don’t say: “I have brittle diabetes.”

Not anymore, at least. Back in the ’80s and ’90s, I heard this term quite often from both doctors and patients. My mom, diagnosed as a child herself, was told for decades that she had “brittle” diabetes, and the term’s still used by some veteran type 1s, even now.

But for the most part, it’s considered an outdated label that’s faded drastically in the past 15 years. Many medical experts now try to discourage its use, saying the term’s a misnomer and only leads to confusion.

But some disagree, saying “brittle diabetes” refers not to everyday ups and downs, but rather to a rare but real condition in which the PWD has volatile blood sugar swings that are nearly impossible to control. It’s known as labile diabetes in clinical lingo and there are some in the patient D-community advocating to bring more awareness and recognition to this rare and severe form of type 1.

A New Foundation

The Sorge family from Long Island, New York, is one example of vocal advocates to bring more attention to brittle diabetes. Rosemarie Sorge, was diagnosed in 2010 at age 40. At first, she was diagnosed with type 2. Her father, Dr. Manny Sorge, says her physicians labeled her as “non-compliant” for the next two years despite his daughter doing everything they asked. Early last year, she went into a DKA (diabetic ketoacidosis) coma and nearly died, and doctors weren’t able to effectively manage her blood glucose levels even under intense clinical conditions. Eventually she was given a diagnosis of “brittle diabetes.”

Rosie is on an insulin pump and CGM (continuous glucose monitor), her father tells us, but even with diligent use of those modern diabetes devices she isn’t able to adequately manage her diabetes and prevent blood sugar swings during the day.

“Even though my daughter is on the pump the technology cannot presently keep up with the rapid unpredictable shifting up or down experienced by a brittle type 1 diabetic,” Dr. Sorge (a physiologist and entrepreneur) wrote us in an email. “Rosie can shift up or down several times a day by as much as 300 points in less than 90 minutes. Apart from feeling ill, there are additional symptoms such as sweating, shaking, loss of cognitive function and slurred speech during these rapid shifts.”

Earlier this year, the family formed a non-profit organization called the Brittle Diabetes Foundation, with an online presence at bdtype1.com. The mission: to end the myth that brittle is just an archaic term referring to “uncontrolled” type 1. Their ultimate goal is to help develop a Brittle Diabetes Center “for customized treatment of those individuals diagnosed as being brittle.”

Their website lays out varying views of brittle diabetes, leading to the important and persistent point that it can be successfully treated: Sorge and his group believe the condition is caused by a combination of factors, often including psychosocial problems, and that treatment requires a medical professional who is ready and willing to explore those root causes. At least half of those diagnosed with brittle diabetes can be reverted to a “stable type 1 condition,” he insists.

The Foundation targeted the NIH Office of Rare Diseases and on July 3, the NIH’s Genetic and Rare Diseases Information Center (GARD) listed brittle diabetes for the first time as one of the thousands of illnesses recognized on its site. The new web page includes a Q&A section, list of current clinical trials, and the latest research articles on the condition.

A tidbit on the brittle diabetes listing: the condition apparently is most common in women in their 20s and 30s, but it can occur at any age and in either gender.

Naysayers & Term Misuse

Despite the Sorge family’s experiences and the NIH listing in its clearinghouse of every possible condition under the sun, many respected names in the diabetes field aren’t as quick to recognize brittle diabetes as a legitimate diagnosis. Heck, even the trusted medical reference The Merck Manual from 2010 says the term “has no biological basis and should not be used.”

There’s quite a debate afoot. But a handful of respected veterans in the diabetes medical community we queried seemed to agree: it’s a rare condition, and the term is mostly used incorrectly by patients and many doctors.

“I’ve mostly seen clinicians coin people ‘brittle’ when they just haven’t had the time, expertise or inclination to figure out what is causing the ups and downs that some of their patients experience,” said well-respected CDE Gary Scheiner, a longtime type 1 himself in Pennsylvania. “That’s nothing more than a cop-out.”

Gary wrote an article on brittle diabetes a decade ago, saying as much. Since then, more research has surfaced on the sub-classifications of diabetes and it’s now more clear that most type 1 PWDs still produce a tiny trace of insulin. Some have enough to provide a degree of stability, while others have less insulin and stability, he said.

Some research shows that less than 1 percent of the type 1 population is “brittle,” but even that number is probably generous, and other estimates show it may be only about .3% of type 1 PWDs.

Dr. George Grunberger in Michigan, who’s been practicing for more than 30 years, agrees with Gary. He says the term’s been mostly discarded in the past decade and in all his years of practicing he’s never had a patient with a true brittle diabetes diagnosis.

“In the simplest terms, if you can find a reason for the blood sugar swings, then it’s not brittle diabetes,” he said. “That’s been a really difficult issue to tackle, because the problem you have is that both physicians and patients used it for so long without really understanding what they’re talking about. I know it exists; I’m not denying that. But really, it’s the definition and diagnosis that is mislabeled by so many.”

True Cases?

Grunberger said that if a doctor or patient does believe they know of a true brittle diabetes diagnosis, then the case should be researched and published to help guide the medical and patient community on what brittle diabetes really looks like.

And at Vanderbilt University Medical Center, Dr. Shubhada Jagasia says the American Diabetes Association has been pushing doctors away from using the term because of changes in therapy through the years, including better technology and devices and more contemporary insulins.

When she hears a patient use that term, Jagasia says she tries to educate the PWD about their blood sugar concerns so they can recognize what might be playing a part in the dramatic ups and downs — whether it’s an insulin or food mismatch, or some deeper psychological issues like depression that can severely impact glucose stability.

“All factors need to be considered and ruled out before you can call it brittle diabetes,” she said. “I really try to empower my patients to think more about their blood sugar management, and to not just hang their hat on that term.”

Meanwhile, despite their assertion that the causes can be found and treated, the BD Foundation insists that being “brittle” is a unique condition beyond the typical type 1 struggle to keep BG swings in check:

“Brittle diabetes is not an uncommon complication of type 1 diabetes but rather a distinct and separate FORM of type 1. Brittle diabetics can do everything right (optimized diet, exercise, carb counting and insulin regimen) and yet experience rapid unpredictable highs and lows in their BG levels. Brittle diabetes is defined as an uncontrolled rapid shift in BG, which causes ongoing disruption in everyday life.”

What do you all think? Anyone here have experience with what they believe to be a “true case” of brittle diabetes?