If you are a person living with T1DM you must regularly check your blood glucose levels. Based on these levels and what you plan to eat, you must give yourself insulin. If you either fail to do so, or under-dose, your body cannot absorb glucose and it accumulates in your blood, a condition known as ‘hyperglycaemia’, in which case, your body attempts to compensate for the excess glucose, goes into starvation mode and starts to break down muscle and fat, releasing acids called ketones. The ketones build up, leading to diabetic ketoacidosis (DKA), which can be fatal.
Data from large global epidemiological studies of T1DM reported in a paper published in the February 2014 edition of Diabetes Research and Clinical Practice, suggest that there are 0.5m children aged
It is estimated that as many as 11% of adolescent women with T1DM meet the criteria for a full-syndrome eating disorder. This is significant when compared to the incidence of eating disorders among women in general. It is estimated that between 0.5% and 3.7% of women suffer from anorexia nervosa, and an estimated 1.1% to 4.2% of women have bulimia in their lifetime. A paper in the June 2000 edition of the British Medical Journal, suggests that adolescent females with T1DM are 2.4 times more likely to develop eating disorders than peers of the same age without diabetes, and 1.9 times more likely to display symptoms of an eating disorder that does not meet the full diagnostic criteria. Other studies show that about 35% of females with T1DM have diabulimia.
Signs and symptoms
Diabulimia is challenging to diagnose and many primary care doctors and endocrinologists who treat people with T1DM may not recognize diabulimia among their patient population. This is partly because diabulimia is not an officially recognised disease state, partly because eating disorders and diabetes tend to be treated separately by different specialists, and partly because people with diabulimia may be ashamed and reluctant to seek help.
The most obvious sign of diabulimia is weight loss. Another common sign is poor blood-glucose control, as measured by elevated A1c levels, particularly if the person has a prior history of good control. Health professionals may wish to attune themselves to the classic signs of diabetes and the common symptoms of eating disorders. The former includes excessive urination, extreme thirst, constant hunger and fatigue. The latter includes dietary restrictions and heightened concerns about weight and body image.
Manipulating insulin to control weight
At the time of diagnosis with T1DM people have often lost a significant amount of weight. Regular doses of insulin are essential for controlling blood sugar levels and successfully managing the condition. However, a common side effect of such treatment is weight gain, and this can lead to a vicious circle. Insulin therapy can lead to weight gain; increasing weight may require increasing dosages of insulin to control blood glucose, which can lead to increased hunger and dietary intake, which can increase weight and enhanced concerns about body image.
Deliberately not taking or misusing insulin to cause weight loss is a purging behaviour that is uniquely available to individuals with T1DM. Weight loss can be achieved by decreasing the prescribed dose of insulin, omitting insulin entirely, delaying the appropriate dose, or manipulating the insulin itself to render it inactive. But when you have T1DM, you need insulin to live. Without it, you may lose weight, but more significantly you can lose your sight, harm your kidneys, damage the nerves in your feet and threaten your life.
Diets, social media and the thin ideal
The management of T1DM is further complicated because it also entails the careful selection of food, eating precise portions and the constant monitoring of carbohydrates. Because of the early onset of T1DM and the ubiquitous use of social media among children and adolescents, which often propagate the “thin ideal”; it seems reasonable to suggest that children and adolescents with T1DM are inherently more prone to issues revolving around food. Thus, in addition to manipulating insulin many people with T1DM commonly restrict their food intake, engage in bingeing and purging, misuse laxatives and adhere to overly strict exercise regimens to overcome body dissatisfaction.
In the US the cost of insulin results in rationing dosages
It seems worth mentioning that a significant proportion of people with T1DM in the US appear to be forced into a similar state of diabulimia because of the high cost of insulin, lack of medical insurance cover (about 10% of the US population [33m] do not have healthcare insurance), and relatively high levels of co-payments for medical insurance. These aspects of the American healthcare ecosystem tend to drive a percentage of people with T1DM to reduce or ration their prescribed dosage of insulin, and their disease state then assumes similar manifestations to diabulimia.
According to research findings published in the June 2018 edition of Diabetes Care, about 27% of the 1.25m people in the US with T1DM say that affording insulin has impacted their daily life. For people with T1DM, “access to insulin is literally a matter of life and death. The average list price of insulin has skyrocketed in recent years, nearly tripling between 2002 and 2013 . . . . [and] . . . individuals with diabetes are often forced to choose between purchasing their medications or paying for other necessities, exposing them to serious short- and long-term health consequences,” say the authors.
According to T1International, a charity which advocates affordable and accessible diabetes care, "People (in the US) spend most of their life in fear of losing their insurance, of running out of insulin and the cost going up, or of having to stay in terrible jobs or relationships to ensure they keep their health insurance coverage. . . . In the worst case, folks are rationing insulin which has led to many reported deaths and excruciating complications."
Research aimed at improve treatment
Given the extent of diabulimia and the significant medical risks associated with the condition, more clinical and technological research aimed to improve its treatment is critical to the future health of this at-risk population. Stadler’s research referred in the opening paragraph of this Commentary is significant. Interestingly, the National Institute for Health Research only supports projects which potentially have a, "clear benefit to patients and the public". Stadler’s research is expected to take five years, aims to provide a better understanding of diabulimia and devise a 12-module treatment plan for people with the condition.
Clinic for people with diabulimia
People with diabulimia could only seek professional help for their eating disorder and T1DM separately, but never together: that was until January 2017 when an out-patients’ clinic opened in London specifically for people with T1DM and eating disorders. The clinic is led by Khalida Ismail, Professor of Psychiatry and Medicine at King's College, London and the lead psychiatrist for diabetes at King's Health Partners, London, which is comprised of King's College London, Guy's and St Thomas' NHS Foundation Trust, King's College Hospital NHS Foundation Trust and South London and Maudsley NHS Foundation Trust. Ismail wants to unite psychiatrists and diabetes experts. "They never meet patients together and it's an inefficient use of current resources . . . . we'd actually be saving money by joining up services," she says.
Diabulimia represents one of the most complex patient problems to be treated both medically and psychologically. Standard treatments for eating disorders are not usually appropriate for cases of diabulimia. Treatment for eating disorders tend to involve removing the focus on food, which is contrary to best practice for the management of T1DM. It is important for clinicians and researchers to better understand risk factors, screening tools and treatment options for diabulimia. Also, there needs to be better access to diabetes specialist psychological services that can provide the integrated support that people with diabulimia need. The London clinic for diabetes and eating disorders and Stadler’s research are a good start.