Women with type 1 diabetes are most at risk—but they may not know this dangerous habit can be deadly.

If you have type 1 diabetes, you know how essential insulin is to your health. In fact, it’s life-saving. But some people with the condition are manipulating their insulin in order to purge after a large or high-carb meal. The condition is called diabulimia.

While it’s not a formal diagnosis, the term refers to the “unique eating disorder symptom of insulin restriction for the purposes of calorie purging,” says Ann Goebel-Fabbri, PhD, a former assistant professor of psychiatry at Harvard Medical School and author of Prevention and Recovery From Eating Disorders in Type 1 Diabetes: Injecting Hope. While you may have heard of people purging through self-induced vomiting or diuretic or laxative use, it can be done by misusing necessary medications like insulin as well. “This is a very dangerous behavior that can lead to diabetes complications and increase the likelihood of early death,” Goebel-Fabbri says.

People with type 1 diabetes don’t produce insulin. “Insulin acts like a key to allow glucose to enter into cells,” explains Susan Herzlinger, MD, a specialist in eating disorders in people with diabetes at the Joslin Diabetes Center in Boston. Glucose is the fuel your body runs on, but without insulin, your body can’t utilize the glucose in your blood. Normally, your pancreas does this automatically. With type 1 diabetes, you need to give yourself insulin either through injections or an insulin pump.

Those with diabulimia may underdose their insulin or skip it altogether. Then, blood sugar rises and the kidneys dispose of the excess glucose in urine. “This is a way to purge what’s been eaten because the sugar you ingested isn’t absorbed and instead is eliminated,” says Dr. Herzlinger. What’s more, limiting insulin forces your body to digest fat (and some muscle) to support the brain’s functioning, she says.

Doing this can leave people feeling irritable and fatigued at best. Worst, it can be deadly. “The most severe consequences when blood sugar is allowed to become so high and insulin so low is a risk of developing diabetic ketoacidosis,” says Dr. Herzlinger. This is an emergency medical condition where fat is broken down too quickly into ketones, making the blood acidic (which is different from what happens in the popular ketogenic diet). Diabetic ketoacidosis usually requires an ER visit “at minimum” and often admission to intensive care, she says.

The long-term consequences are serious, too. That can include damage to smaller blood vessels, leading to vision loss, kidney failure, and dialysis. It’s also possible to develop peripheral neuropathy that causes pain and loss of sensation that increases risk of wounds and ulcers in the feet. Plus, overtime, misusing insulin can damage large blood vessels that supply the heart and brain. “We’ve had women with a history of eating disorders getting heart bypass surgery in their 30s,” says Dr. Herzlinger.

Diabetes and eating disorder risk

People with type 1 diabetes, particularly women, have a unique risk for eating disorders or EDs, research shows, and that includes manipulating insulin dosage to avoid the consequences of a large meal. Goebel-Fabbri notes that women with type 1 are approximately 2.5 times more likely than women without the condition to develop an ED of any kind. In one study of 126 girls with type 1 diabetes, nearly one-third could have been diagnosed with an ED as young women, according to a 2015 study in the journal Diabetes Care.

Thirty to 40% of women with type 1 will say they’ve restricted their insulin for weight loss at some point in their lives,” says Goebel-Fabbri. It doesn’t mean they all have eating disorders, she says, but it is part of a larger fabric of doing dangerous things to lose weight.

One reason women with type 1 are more at risk? You have to be hyper aware of your food intake—counting carb grams, planning out meals, estimating insulin requirements. Couple that with the general societal pressures to be thin, and the practice of food vigilance can take a turn, says Goebel-Fabbri. What’s more, some patients have even told her that they’ve learned to do this from health care materials that are intended to be cautionary against underdosing or skipping insulin.

While the development of EDs is multifactorial, there is a weight component, too. “What’s underappreciated is that it’s more difficult for people with type 1 to manage their weight, despite maintaining moderate habits,” says Dr. Herzlinger. With a tool like insulin, the discovery that weight manipulation is possible can become a dangerous habit for some.

However, it’s also important to know that underdosing insulin may not give someone the weight loss results they’re after. “Weight loss really does happen early on but is seriously dangerous and may not last,” says Goebel-Fabbri. In her research on women who were manipulating their insulin for weight loss, she followed up with study participants 11 years later. Those who stopped restricting insulin were at a healthy body mass index, while those who continued to do it were at an elevated BMI. “I speculate that it’s probably because eating becomes more and more out of control. People with high glucose are much hungrier than those with healthier levels,” she says.

How to seek help

Unfortunately, the first clue that someone may be suffering from diabulimia could be admission to the hospital with diabetic ketoacidosis. Routine blood tests to monitor blood glucose levels may also tip doctors off that there’s a problem. Hemoglobin A1c levels (the average blood sugar over three months) may rise without explanation, says Dr. Herzlinger. Certainly, A1c can be elevated for a variety of reasons, but doctors will want to investigate the underlying cause. (People may also be underdosing or skipping insulin for other reasons, including the exorbitant cost of the medication, as one New York Times story outlined.)

Diabulimia treatment often requires a team approach to address diabetes management, eating disorder recovery, and mental health support, as a person may be dealing with depression and anxiety as well, says Goebel-Fabbri. Here's what it might entail.

Talk to a trusted provider. “The struggle [can be] very shaming, so it’s hard to disclose this to a doctor. A patient needs to feel safe from judgment and lectures,” says Goebel-Fabbri.

Foster team communication. The challenge, says Goebel-Fabbri is that many mental health providers, including eating disorder experts, are not trained in type 1 diabetes management, and it should not be the responsibility of the patient to teach them, either. Your diabetes provider should work closely with the mental health professional to learn about eating disorders from them. Similarly, your doctor should be willing to teach the ED expert about type 1.

Reestablish good habits. Often, someone with diabulimia has uncontrolled blood glucose. Rather than trying to recover “great” glucose management quickly, Dr. Herzlinger recommends aiming for “good.” She has patients begin taking insulin at meals but in a lower dose than appropriate. This will reestablish the habit of taking insulin. As recovery progresses, the amount taken can gradually increase.

Revamp your diet. With other eating disorders, putting someone on a “diet” can be dangerous. However, in this case, working with a knowledgeable dietitian to develop a healthy, moderate-carbohydrate diet, focusing on lower glycemic index carbs, can be helpful. Why? A patient then does not have to take large amounts of insulin, something that isn’t palatable in the beginning stages of recovery.

But don’t get strict. Focusing on eating regularly in a non-depriving way can help someone bring back the flexibility to their diet that they need, says Goebel-Fabbri.

Prepare for (possible) gain. It’s natural to have a fear of weight gain, and weight gain may or may not happen in recovery. Goebel-Fabbri says that one issue is that high blood sugar levels cause dehydration, and once someone starts taking insulin appropriately, they can gain water weight, which may be distressing. “This is completely normal and will resolve, but no one can promise how long that will take. I warn patients that this happens in the beginning so that they don’t drop out of treatment,” she says. Decreasing glucose levels gradually can help lessen this side effect.

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