Excerpted from Roberta Ruggiero’s book, The Do’s and Don’ts of Hypoglycemia: An Everyday Guide to Low Blood Sugar

“In 1998, I added a hypoglycemia/diabetes questionnaire to our website. Due to the increase of questions and concerns about a possible connection between hypoglycemia and diabetes, I wanted to find out if this association could be observed. The goal was to determine whether untreated hypoglycemia is a prelude to diabetes. The survey was also designed to gather information on how and by whom hypoglycemia had been diagnosed and what type of treatments, if any, were found to be beneficial. Since then HSF has received over 7500 responses from people suffering from hypoglycemia in over 25 countries!”

The latest version of the HSF questionnaire is ongoing – over 2200 participants and counting!  Each year, we sort through the extensive volume of information to categorize and evaluate the results. Below is a brief synopsis of what we’ve discovered so far.

Sixty-four percent of confirmed hypoglycemics (diagnosed by a physician with a glucose tolerance test) indicated that one or more family members had been diagnosed with diabetes!

With this information, we can alert hypoglycemics to the seriousness of this condition, as diabetes will almost certainly be the next stage if left untreated. It is also critical for diabetics to share this information with other family members as a preventative measure.

When we asked those surveyed what kind of symptoms they experienced, the most common were:

• Heart palpitations 80%
• Dizziness 79%
• Mood swings 77%
• Headaches 74%
• Depression 67%
• Addiction to sweets 62%
• Extreme fatigue 52%

When diagnosed with hypoglycemia, only 59% changed their diet. That number is high considering that only 48% of physicians who diagnosed hypoglycemia through a glucose tolerance test recommended treatment. A little more than 50% of the participants incorporated vitamins and exercise, while only 25% changed their mental attitude towards the illness. Unfortunately, 23% considered candy the cure-all for their low blood sugar problems.

Excerpt from Interview of Roberta Ruggiero by Wolfram Alderson, featuring background and results (2017) of the Hypoglycemia Questionnaire.

WOLFRAM

You partnered with the Institute for Responsible Nutrition to conduct a national questionnaire on hypoglycemia. What have you learned? What insights have confirmed what you already knew, and what new understandings resulted from the questionnaire? Were there any surprises?

ROBERTA

First of all, I felt very honored and privileged to have both The Hypoglycemia Support Foundation, Inc.  and the Institute for Responsible Nutrition conduct an online questionnaire targeting individuals who experience hypoglycemia. Leslie Lee, who is now one our HSF Medical Advisors, played a major role in designing and evaluating this questionnaire, and I am very excited about the results and the conclusions that she helped us deduce from the questionnaire results.

The purpose of our questionnaire was to characterize experiences with hypoglycemia and the diagnostic process and to see if we could observe a connection between reactive hypoglycemia and the development of type 2 diabetes later on. Legitimizing the condition within the medical community is important, because so many people express to us that their health care providers do not understand or even believe what they’re going through.

We learned quite a few interesting things from our now >1500 respondents. First, about two-thirds of our respondents know they have experienced hypoglycemia, but only about half of respondents have been diagnosed by a physician and only about one-third have been diagnosed with an oral glucose tolerance test, the gold standard diagnostic tool. There’s a disconnect there—so many people know they experience it and yet they aren’t being diagnosed.

WOLFRAM

What’s going on there? Why do the patients seem to know that something is going on, but their physicians do not?

ROBERTA

Maybe it’s difficult to diagnose, or maybe physicians just aren’t taking it seriously enough.

Second, about one-third of respondents’ experience hypoglycemia at least once a week while another one-third experience it at least once a day. That’s too frequently! Imagine the impact on their qualities of life! This is a clear indicate that people who experience hypoglycemia don’t know how to prevent it from happening! That’s a problem and an educational opportunity.

WOLFRAM

What foods trigger hypoglycemia?

ROBERTA

We received mostly predictable answers—starches, sweets, soda, caffeinated beverages, alcohol, and so on. But what was most surprising was that 11% indicated that diet beverages—which provide no calories, no sugar, and no glucose—are a trigger of their hypoglycemia.

WOLFRAM

How could this be?

ROBERTA

We know diet sweeteners are associated with increased risk of developing obesity, metabolic syndrome, and type 2 diabetes. Perhaps diet sweeteners can trigger hypoglycemia through the same mechanisms as their other metabolic implications? We need more research in this field. Diet sweeteners have historically been presumed to be metabolically inert, but it’s looking like they aren’t.

WOLFRAM

What do your respondents typically do when they experience hypoglycemia? How do they treat it?

ROBERTA

Well, only 12% are “following the rule” and using the American Diabetes Association’s recommendation of eating 15 grams of fast-acting carbohydrate, resting for 15 minutes, then checking blood glucose and repeating if necessary. More than twice that many (27%) are eating indiscriminately—they’re eating whatever is handy in whatever quantity they want. About 30% are eating sweets like candy or dessert and another 30% are eating slow carbs, like nuts, seeds, and whole grains.

WOLFRAM

Why is this important?

ROBERTA

There’s a fine line between treating hypoglycemia now and triggering another episode of reactive hypoglycemia later. If you treat hypoglycemia with rapidly-absorbing starch or sugar, and you eat a large quantity of it, because your body is desperate for energy, your blood glucose may spike too high in response. That blood glucose bolus may spike your insulin too high, which may result in hypoglycemia again shortly thereafter. It creates a vicious cycle! The treatment leads to the problem, and the problem necessitates the treatment! If people were more strategic with their treatment, they may be able to treat hypoglycemia without inducing another episode. Again, this elucidates another knowledge deficit and educational opportunity.

WOLFRAM

What did you learn about reactive hypoglycemia preceding the development of type 2 diabetes?

ROBERTA

This is where it really gets interesting! Of those who took our questionnaire and who have been diagnosed with type 2 diabetes or pre-diabetes, 68%–a whopping two-thirds—experienced reactive hypoglycemia before their diagnosis!

WOLFRAM

Hypoglycemia is often thought of as “the opposite of diabetes,” and patients are often informed they do not need to worry about developing diabetes. “Just eat some sugar” is common dietary advice given to people who suffer from hypoglycemia.

ROBERTA

Our questionnaire responses beg us to examine whether reactive hypoglycemia is an example of metabolic dysfunction that, if continued undiagnosed or and mis-diagnosed, could develop into insulin resistance and then type 2 diabetes over time. We need to be thinking of reactive hypoglycemia as a red flag that type 2 diabetes may develop if the diet isn’t modified now. Think how much damage the advice to “just eat more sugar” could do to someone on the verge of developing diabetes! That message alone could be the tipping point toward diabetes for that patient. Most people (85%) who experienced hypoglycemia prior to a diagnosis of type 2 diabetes or pre-diabetes, experienced it for an extended period of time—at least 2 years. Think of all the positive change they could have made in their diet during that period if they had only been informed.

WOLFRAM

I know from personal experience that it is often very challenging when presenting symptoms of metabolic disorder, like low blood sugar, to health care providers. Conditions like hypoglycemia are poorly understood and most doctors have little understanding of diet-related diseases. In fact, only 30% of medical schools in the U.S. even require doctors to take a nutrition course! How did respondents describe the patient experience?

ROBERTA

We knew patients are frustrated, but we didn’t know the degree to which they are frustrated…until now! Only 40% feel as if they understand the condition well enough to satisfactorily manage their symptoms. And it’s amazing that that figure is as high as it is, because only 17% believe their health care team understands their condition! Further, only one in four feels like their condition is taken seriously by their health care team. That’s sad. We can and should do better for the patient.

WOLFRAM

Where this is misery, there is also opportunity. Did the questionnaire reveal any areas where the HSF can make a difference?

ROBERTA

Opportunities abound. If clinicians understand hypoglycemia better, they can educate patients to think of it as a red flag that diabetes could develop. By providing a little information and diet education (and NOT providing counterproductive information), we have the potential to prevent type 2 diabetes in this population. What a blessing! An early red flag that, if we notice it, can inform our behavior and prevent disease!  How empowering! The HSF is developing high quality educational programs for health care professionals that provide CME (Continuing Medical Education) credit.

WOLFRAM

Is the questionnaire still ongoing?

ROBERTA

To continue this study for future references, the questionnaire remains open for responses. If you would like to participate, you can access it by visiting www.hypoglycemia.org and clicking on “Take our Hypoglycemia Questionnaire.” Questionnaire results are posted on the HSF website (https://hypoglycemia.org/learn-about-hypoglycemia/questionnaire/).