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My hands start shaking. Cold shivers creep in, despite the warm sweater I’m wearing. My vision blurs, to the point where I can’t clearly see what’s right in front of me…

These are just a few of the symptoms I experience when my blood sugar dips too low, or in other words, when hypoglycemia sets in. As someone living with type 1 diabetes (T1D) since childhood, this is an all-too-frequent reality that I’ve learned to cope with. Technology can certainly help prevent these hypos, but it’s not a guarantee and I still experience them quite often.

Not everyone feels the same symptoms when their glucose levels drop, and many T1Ds — myself included — sometimes don’t feel any symptoms at all to alert us of plummeting glucose levels. That’s known as “hypoglycemia unawareness” and it’s something particularly dangerous overnight, as we don’t always wake up to treat a low with necessary sugar, which can lead to a seizure or even death.

It is well-noted by experts that the danger of hypoglycemia doesn’t get enough attention. There’s also a stigma associated with it, since the general public and even our friends and family often don’t understand, but rather wonder what we “did wrong” to make our glucose levels drop.

Within the Diabetes Community, there are layers of conversation on this topic — from common Fear of Hypoglycemia (FOH) that leads people with diabetes (PWDs) to keep their glucose levels higher to avoid lows, to kids with diabetes hiding the fact that they even have hypos, to people with type 2 diabetes being afraid to take insulin because they’re fearful of potential lows.

As someone now nearing four decades living with this chronic condition, it also concerns me greatly to know there are PWDs out there who don’t actually know what the word “hypoglycemia” even means. That’s a health literacy component, of course, which should remind us that medical terminology can be confusing for many people — and that many face a misdiagnosis scenario or medical professionals who don’t educate them properly upon diagnosis.

Meanwhile, alarmingly, stats from the Centers for Disease Control (CDC) show that hypos alone account for more than 200,000 emergency room visits each year!

It’s a huge issue that our D-Community is addressing through advocacy and awareness campaigns. To help shed light on this important topic, we’ve compiled the following overview.

Hypoglycemia is generally considered by both patients and doctors to be a glucose level less than 70 mg/dL (<3.9 mmol/L).

But believe it or not, there was no official consensus among healthcare professionals on the exact definition until 2018, when key diabetes orgs agreed on three levels of hypoglycemia that can be tracked with continuous glucose monitors (CGMs) in various studies:

Level 1: A glucose value of <70–54 mg/dL (3.9–3.0 mmol/L) with or without symptoms.

Level 2: A glucose level of <54 mg/dL (3.0 mmol/L) with our without symptoms. This should be considered “clinically significant” hypoglycemia requiring immediate attention.

Level 3: Severe hypoglycemia, which “denotes cognitive impairment requiring external assistance for recovery but is not defined by a specific glucose value.”

Why these different parameters? It turns out that risk of hypoglycemia is affected by other health conditions and treatments that patients may be undergoing.

In PWDs, a low blood sugar can be caused by any one or a combination of these factors:

  • too much insulin or other glucose-lowering medication, whether that’s too much fast-acting bolus (mealtime) insulin or long-acting basal (background) insulin
  • delaying or missing a meal, or not consuming enough carbohydrates to match the amount of insulin taken
  • more intense-than-normal exercise or simply physical activity in combination with insulin on board (IOB)
  • alcohol, which can lead to lower glucose levels hours after drinking, despite a higher glucose initially due to carbs present in the drink
  • for some people, airplane travel or other unusual activity, that for some reason causes their glucose levels to drop
  • interaction with other drugs being taken, such as heart medications

The official medical list of standard symptoms of a hypo includes:

  • weakness, trembling, shaking
  • sweating
  • light-headedness or dizziness
  • headaches
  • fatigue, sleepiness
  • inability to focus or lack of concentration
  • tearfulness, emotional behavior change
  • irritability
  • hunger
  • blurred vision
  • coldness or shivering

Personally, over the years, I’ve experienced most, if not all of the symptoms at some point during a low.

Of course, it’s hard to fully describe the feeling of a dangerously low blood sugar. A few years back, DiabetesMine Editor Amy Tenderich attempted to “describe the indescribable” low blood sugar sensation using the terms “weird” and “scratchy… the opposite of itchy.” And then there was diabetes advocate and YouTuber Bill Woods (aka “1HappyDiabetic“) who described his lows as “Hunger + Fear + Head Rush.”

The rule of thumb for treating non-emergency lows is something called the rule of 15: PWDs should consume 15 grams of fast-acting carbohydrates, wait about 15 minutes, and then check blood glucose. If still low, take another 15 grams of carbs and recheck 15 minutes later.

Any sort of simple sugar will do, but most people treat with glucose tabs, fruit juice, or simple candies like Skittles.

For emergencies, when the PWD is literally rendered unconscious from a severe low, the traditional treatment was a glucagon injection kit. This is complicated for a bystander to use, as they have to mix the formula in real-time, and use a dauntingly large syringe.

Thankfully, new products have changed the game on emergency glucose treatment. There is now a nasal inhaler called Baqsimi available, along with a simple ready-to-use injection pen called Gvoke.

Watch this humorous video from the team at Taking Control of Your Diabete (TCOYD) in San Diego for a clear explanation of how much better these new options are.

For National Diabetes Awareness Month November 2020, the professional org AACE (American Association of Clinical Endocrinology) has launched an awareness and educational campaign called The Lowdown on Low Blood Sugar.

The website encourages doctors and patients alike to know the signs, be prepared, and have a diabetes emergency plan in place. There’s also a collection of videos and GIFs that PWDs are encouraged to share on their social media channels.

The main impetus behind this initiative is that many people with type 2 diabetes in particular don’t even know they might be at risk for hypogylcemia, and many doctors are lax about encouraging preparedness, we’re told.

The AACE, of course, recognizes that trends and treatment options vary depending on race, ethnicity, and socioeconomic factors.

“It’s important to note that certain populations are disproportionally affected by diabetes and its complications, which could also impact the likelihood of experiencing a low blood sugar emergency,” says Dr. Rodolfo J. Galindo, an endocrinologist at Emory Healthcare in Atlanta representing AACE.

“For example, Hispanic and Black adults are more impacted by diabetes complications than white adults. It’s crucial that physicians talk with their patients about how to prepare for, how to recognize, and how to respond to an emergency low.”

In order to emphasize how important hypo awareness can be, a European initiative known as Hypo-RESOLVE has been researching the mysteries behind hypoglycemia, so to speak. It’s a 28.6-million Euro project taking place across 10 countries, and is backed by JDRF, T1D Exchange, the International Diabetes Federation (IDF), the Leona M. and Harry B. Helmsley Charitable Trust, and a few other organizations.

Essentially it’s a group of HCPs (healthcare providers), researchers and PWDs working together to analyze data from 100 to 150 clinical trials and conduct extended, collective brainstorming to figure out new ways to define, predict, treat and maybe even prevent hypoglycemia and its nasty cousin, hypoglycemia unawareness (the inability to detect when the blood sugar is plunging dangerously low).

A small sampling of the initial questions being addressed by Hypo-RESOLVE:

  • What are the underlying causes of recurring hypos and hypo unawareness?
  • How can hypos be measured and monitored in clinical trials?
  • Why are some PWDs more prone to these problems than others?
  • Is there a way to prevent hypoglycemia in the first place?

The concrete measures they hope to take include:

  • Creating a sustainable clinical database specifically on hypoglycemia;
  • Conducting carefully managed studies to better understand the underlying mechanisms of hypoglycemia;
  • Conducting a series of statistical analyses to define predictors and consequences of hypoglycemia;
  • Calculating the financial cost in various European countries.

It’s a four-year effort that began in 2018, and some of the resulting research is already being published online for review and future policy-creation on addressing low blood sugars.

On social media, they’ve been promoting “myth vs. fact” infographics to raise awareness.

A seven-person Patient Advisory Committee is a key component of Hypo-RESOLVE, including leading D-advocates Renza Scibilia, Bastian Hauck, Mohamed Hamid, and Merijn de Groot.

It’s great to see patient voices with lived disease experience built into this from the start.

Speaking of personal experience, I wanted to share that I believe hypoglycemia should be a No. 1 priority in diabetes education because it is so life-impacting on a daily basis. Lows can really mess with your job and daily existence, not to mention the fact that you may not wake up at night(!).

Growing up, I certainly wasn’t hypo unaware; my symptoms were always clearly visible. But even at a young age, my lows would cause dramatic seizures or hallucinations where I’d envision strange things, like robot aliens attacking and trying to take over my mind in the form of my parents, for example. There were screaming fits where all they could do was hold me down and force juice down my throat.

That happened to me as an adult, too. After getting married and before starting on a CGM, I experienced some severe lows with hallucinations that caused aggressive behavior on my part. Once I even thought my wife was a Communist trying to poison me and I had to resist, to the point of chanting “USA, USA!,” in my state of hypo-confusion.

It was scary for both of us, and we agreed that our best course of action in these situations (aside from working hard on prevention) was to phone the paramedics rather than have my wife attempt to hold me down herself to get juice or honey down my throat, or having to use the overly-complicated multi-step emergency glucagon injection that was the only option at the time.

I’m shuddering now… (not from a low, but just the vivid memories of this over the years).

With all of that in mind, I’m grateful to see more awareness-raising happening on the hypoglycemia front. It’s possibly the most important issue facing people taking insulin, and should be discussed more often.

Mike Hoskins is Managing Editor of DiabetesMine. He was diagnosed with type 1 diabetes at age five in 1984, and his mom was also diagnosed with T1D at the same young age. He wrote for various daily, weekly and specialty publications before joining DiabetesMine. Mike lives in Southeast Michigan with his wife, Suzi, and their black lab, Riley.