DSOK Spotlight: Secretly Disconnecting

By Heather Lackey, MS, RD/LD, CDE, BC-ADM… and PWD

This month, our Diabetes Spotlight in not shinning bright on a person who has diabetes, but instead, a problem that is often under-reported, overlooked and even ignored.

To begin, I observed the 34 year old female in my office secretly disconnect from her insulin pump and then bolus after just testing her 271 mg/dL blood sugar. I was stumped. How could I have not questioned this behavior before?

Now everything was falling into place: A1C of 9.9%, small but consistent weight loss over the last 6 weeks, dry lips, and frequent yeast infections to name a few symptoms. She always had a cup of ice water handy. Her pump downloads were always rather typical as what I would expect to see from just about anyone… not perfect; normal. She rarely missed boluses, correction and food insulin looked to be consistent with what she was eating, not many temporary basal decreases were programmed into her pump, and her infusion site changes looked to be every three to four days.

Nothing was out of the ordinary except that every change to her pump settings over the past 6 weeks of follow up visits was not improving her glucose control. For example, increases to her basal rate and increasing the correction insulin were the first changes to the pump settings resulting in little improvement on her glucose control.

She had previously expressed to me that she would do almost anything to avoid hypoglycemia. I was under the assumption that she hated lows and how lousy they can make us feel. The real reason she didn’t like lows, I later found out, was the fact that she would stop burning fat.

The only reason I was able to observe her disconnecting from her pump that day, was I had stepped out of the room to gather some supplies and she wanted to prove to me that she was indeed bolusing to correct her high blood sugar, but she did not think I would see her easily disconnect from her pump. If I had not observed this, I would have believed that the bolus entered into her body as it should have. This is a female who has reduced or omitted insulin for years and it has now become a way of life for her. She no longer is dropping weight drastically to fit into a smaller dress size, rather she manipulates her insulin to manage her weight and exert some form of control of her life.

Diabulimia refers to an eating disorder in which people with type 1 diabetes (T1D) deliberately give themselves less insulin than they need, for the purpose of weight loss.

Why do some people with T1D dabble with this type of weight loss? Is it because their restrictive and regimented disease is controlling them and they are craving to control it? Is it that every gram of carbohydrate is counted, weighed, measured and this much focus on food can lead to an eating disorder? Is it the more they exercise without decreasing their insulin, the more they go low, the more they eat to treat a low, the more they gain weight that leads to “just stay in a high range and avoid the lows” thinking?

Some research has shown that 30% of those with T1D 15-30 years of age engage in this behavior to some degree (1). Other research states that females with T1D are 2.5 times more likely to develop an eating disorder that other females.

Is it plain, easy weight loss? It would logically seem easy… the more one eats without insulin, the higher the glucose becomes, the more glucose spills in their urine, the cells need more energy, the brain is told to eat more, the more one eats, the higher the glucose rises, the more glycogen stores are used, the more water molecules are released, the more fat is burned…the more weight is lossed. Rest assured, the patients that have diabulimia tell me that it isn’t an easy eating disorder to manage. The side effects of the persistent high blood sugar, the hiding of the mismanagement of their disease, and the guilt of the long term damage that goes along with most eating disorders is ever present. It can be a dangerous and deadly situation.

One tool that has been used to uncover eating disorders in people with T1D is the Diabetes Eating Problem Survey-Revised (DEPS-R). This is a 16 item diabetes specific screening tool for disordered eating in contemporary youth with T1D (2). The tool uses a Likert scale for the individual to answer each of the 16 questions: 0=never, 1=rarely, 2=sometimes, 3=often, 4=usually, 5=always. It has been extrapolated from the study that when an individual scored > 20, he or she could be at a higher risk for insulin restricting or omission.

Questions included in the DEPS-R (2):

  • Losing weight is an important goal to me
  • I skip meals and/or snacks
  • Other people have told me that my eating is out of control
  • When I overeat, I don’t take enough insulin to cover the food
  • I eat more when I am alone than when I am with others
  • I feel that it’s difficult to lose weight and control my diabetes at the same time
  • I avoid checking my blood sugar when I feel like it is out of range
  • I make myself vomit
  • I try to keep my blood sugar high so that I will lose weight
  • I try to eat to the point of spilling ketones in my urine
  • I feel fat when I take all of my insulin
  • Other people tell me to take better care of my diabetes
  • After I overeat, I skip my next insulin dose
  • I feel that my eating is out of control
  • I alternate between eating very little and eating huge amounts
  • I would rather be thin than to have control of my diabetes

*Reverse-scored items.
†Items are answered on a 6-point Likert scale: 0=never, 1=rarely, 2=sometimes, 3= often, 4= usually, 5= always.

As for the 34 year who disconnects from her pump and proceeds with entering her blood sugar and carbs into her pump and then bolusing so as to not raise any red flags on her pump download, she now must hold herself accountable to others in her family by allowing them to observe her bolusing and staying connected to her pump. She was tearful in the office admitting the guilt she carries with her insulin manipulation. This has taught me not underestimate the prevalence of diabulimia with people with diabetes, especially in younger females. There are many, many reasons for an elevated Hemoglobin A1c and poor glycemic control. So as not to judge, it might be clever to ask questions such as the ones referenced above. These questions might lead to an open discussion about diabulimia and thoughts and feelings about diabetes in general.

If diabulimia is suspected with you or someone you love, please contact your healthcare provider for additional help and guidance to a multi-disciplinary team approach.

1. Effects of gender, age, and diabetes duration on dietary self-care in adolescents with type 1 diabetes: A Self-Determination Theory perspective. Journal of Health Psychology September 1, 2011 16:917-928.
2. Brief Screening Tool for Disordered Eating in Diabetes. Diabetes Care March 2010 33: 495-500.