14-year-old Charlie was diagnosed with T1DM last year. They present following a collapse during exercise and with an episode of hypoglycaemia. They have been losing weight but report this is due to training for a half-marathon, and you note that they have not been attending recent appointments.
Eating disorders are almost twice as common in young people with Type 1 Diabetes (T1DM) than those without the condition. Sadly, approximately 30% of young people with T1DM have an eating disorder.
Type 1 Diabetes with an eating disorder (T1DE), also called diabulimia, is when young people reduce or stop taking insulin to lose weight. This is because the lack of insulin will lead to rapid weight loss due to the breakdown of the body’s fat stores. Young people may also engage in the other restrictive and purging behaviours associated with eating disorders, such as food restriction or over-exercising, which can indirectly limit the amount of insulin required. This can lead to significant short-term and long-term consequences. Young people may experience life-threatening hypoglycaemia. They can also be at risk of diabetic ketoacidosis, refeeding, and longer-term microvascular complications.
As healthcare professionals, we are in a privileged position to be able to CARE for young people with T1DE. The Medical Emergencies in Eating Disorders (MEED) guidance provides detailed recommendations and a T1DE appendix. Check out our post on MEED guidance here.
Why is T1DE common in young people with T1DM?
The management of T1DM requires a clear focus on food. This involves meal planning, precise reading of food labels, and adjusting insulin doses accordingly. There is also a focus on weight in clinic settings. Moreover, the natural course of T1DM diagnosis involves a period of weight loss which is recovered when treatment is started.
Adolescence is a time of increased risk. This may be related to the metabolic changes of puberty, but it is also a time when young people gain increased independence and often spend more time with their peers than with their families. Young people are strongly influenced by their peer groups, and social media use may worsen perceived pressure related to weight and appearance.
There are also behavioural and mental health risk factors for developing T1DE. Young people with T1DM have almost twice the risk of clinically significant anxiety and depression. Young people may also have perfectionist traits that worsen when they cannot meet their unrealistic expectations in complex diabetes management. This vicious circle is particularly present in the context of hypoglycaemia, where young people must eat to treat the hypo episode, which can cause weight gain, guilt, and reluctance to treat further episodes.
How do we diagnose T1DE?
The diagnosis of T1DE is difficult since eating disorder symptoms and behaviours are often disguised and denied. Moreover, some diabetes-related factors, such as needle phobia, fear of hypo- or hyperglycaemia, and difficulties accepting the T1DM diagnosis, may be mistaken as T1DE.
While some young people omit insulin, others mainly use dietary restrictions and exercise. Therefore, haemoglobin A1c (HBA1c) is not a reliable measure for diagnosis. Although there is no consensus on how to best define young people with T1DE, the proposed diagnostic criterion by MEED is shown below.
What red flags should we look out for?
Given the difficulties in diagnosis and the significant risk of harm to these young people, we must recognise the red flags for T1DE. In particular, the red flags for hypoglycaemia include over-exercising, dietary restriction, and impaired awareness of hypoglycaemia.
Why is managing hypoglycaemia in T1DE a challenge?
The combination of T1DM and an eating disorder makes hypoglycaemia management challenging. Hypoglycaemia can occur for many reasons. In young people with T1DE hypoglycaemia may occur when insulin is being given in the context of low glycogen stores and carbohydrate restriction, BMI is low, exercise is excessive, there is purging, diabetes-related delayed gastric emptying, or overcompensation with insulin following a binge.
Treatment and recognition may also be challenging. Young people may preferentially ask for glucagon to avoid oral hypoglycaemic treatments. However, due to the reduced glycogen stores in young people with T1DE, glucagon treatment is not effective and is not a recommended treatment. Whilst severe and recurrent hypoglycaemia can lead to a loss of awareness of hypoglycaemia episodes, increasing risk and making recognition more challenging.
There are also behaviours which make management challenging. For example, young people may chew or spit out food without eating it, known as “sham feeding”. This may lead to hypoglycaemia due to over-estimation of carbohydrate intake and insulin overdose and may mislead hypoglycaemia treatment. Moreover, young people with T1DM are less likely to follow treatment recommendations and may not engage with outpatient follow-up.
How do we manage hypoglycaemia?
The management of hypoglycaemia in T1DE can be seen above. It is important to note that young people may refuse oral treatments and require intravenous dextrose. Medicalised oral treatments such as Glucose gel may be preferred.
What is pseudohypoglycaemia and how do we manage it?
Young people may also experience pseudo hypoglycaemia. This is when symptoms of hypoglycaemia occur at much higher levels of blood glucose. Pseudo hypoglycaemia can occur when blood glucose levels have been high for a long period of time and is particularly common when insulin is re-introduced. Treatment is symptomatic (rest and reassurance), and if levels of blood glucose are between 4 – 12mmol/L a small dose of rapid release carbohydrate can be offered. When pseudo hypoglycaemia is recurrent, it is important to be careful not to overtreat episodes as this will maintain high blood glucose levels and ketosis which can be used to achieve an ongoing weight-loss state.
Self-harm and suicide attempts
Sadly, self-harm and suicide attempts are more common in young people with eating disorders than the general population. Although the literature is limited on the risk of self-harm and suicide in T1DE (which reflects difficulties in recognition and diagnosis), young people admitted to hospital with DKA have been observed to have increased admissions for a suicide attempt. Self-harm behaviours may also emerge as weight and eating concerns are challenged by treatment.
It is crucial that we consider the risk of suicide in young people with T1DE, particularly since those with T1DE have access to insulin which can be fatal in overdose. Young people should be asked about their mental health, referred early for support, and be screened and monitored for thoughts of suicide and self-harm.
Take home points
- Consider eating disorders in young people with T1DM
- Know the red flags for young people with T1DE
- Consider medicalised hypoglycaemia management, such as Glucose gel, and be aware that glucagon is not recommended
- Be aware of pseudo hypoglycaemia and be careful not to over treat this
- Ask about mental health, self-harm, and suicidal thoughts in all young people with T1DM and T1DE
Charlie’s hypoglycaemia was treated at scene with Glucose gel. You notice that Charlie has been losing weight and when discussing further you identify red flags around eating behaviours and mental health. They disclose suicidal ideation. You refer Charlie for ongoing support and mental health assessment.
Banting R, Randle-Phillips C. A systematic review of psychological interventions for comorbid type 1 diabetes mellitus and eating disorders. Diabetes Management. 2018;8(1):1-18
Beat eating disorders. Type 1 Diabetes and Disordered Eating. 2022. Available at: https://www.beateatingdisorders.org.uk/get-information-and-support/about-eating-disorders/types/type-1-diabetes-with-an-eating-disorder/
Custal N, Arcelus J, Agüera Z, et al. Treatment outcome of patients with comorbid type 1 diabetes and eating disorders. BMC Psychiatry. 2014;14:140. Published 2014 May 16. doi:10.1186/1471-244X-14-140
Diabetes UK. Diabulimia and Diabetes. 2022. Available at: https://www.diabetes.org.uk/guide-to-diabetes/life-with-diabetes/diabulimia
Goebel-Fabbri A, Copeland P, Touyz S, Hay P. EDITORIAL: Eating disorders in diabetes: Discussion on issues relevant to type 1 diabetes and an overview of the Journal’s special issue. J Eat Disord. 2019;7:27. Published 2019 Jul 18. doi:10.1186/s40337-019-0256-0
Hanlan ME, Griffith J, Patel N, Jaser SS. Eating Disorders and Disordered Eating in Type 1 Diabetes: Prevalence, Screening, and Treatment Options [published online ahead of print, 2013 Sep 12]. Curr Diab Rep. 2013;10.1007/s11892-013-0418-4. doi:10.1007/s11892-013-0418-4
Hay, P. Book Review: Prevention and Recovery from Eating Disorders in Type 1 Diabetes: Injecting Hope. J Eat Disord. 2019; 7; 3. Doi: 10.1186/s40337-019-0233-7
Hibberd O, Hall D, Walsh Ó. Take Time to CARE about Young People with Eating Disorders. Don’t Forget the Bubbles. 2022. Available at: https://doi.org/10.31440/DFTB.47515
Hibberd O, Priddis K. Medical Emergencies in Eating Disorders. Don’t Forget The Bubbles. 2022. Available at: https://doi.org/10.31440/DFTB.50368
NICE. Diabetes (type 1 and type 2) in children and young people: diagnosis and management. NICE guideline [NG18]. 2022. Available at: https://www.nice.org.uk/guidance/ng18
Pinhas-Hamiel O, Hamiel U, Levy-Shraga Y. Eating disorders in adolescents with type 1 diabetes: Challenges in diagnosis and treatment. World J Diabetes. 2015;6(3):517-526. doi:10.4239/wjd.v6.i3.517
RCPsych. Guidance on Recognising and Managing Medical Emergencies in Eating Disorders: Annexe 3 – Type 1 Diabetes and Eating Disorders (T1DE). 2022. Available at: https://www.rcpsych.ac.uk/docs/default-source/improving-care/better-mh-policy/college-reports/college-report-cr233—annexe-3.pdf?sfvrsn=c45bd860_14
RCPsych. Medical Emergencies in Eating Disorders: Guidance on Recognition and Management. RCPsych College Report [CR233]. 2022. Available at: https://www.rcpsych.ac.uk/improving-care/campaigning-for-better-mental-health-policy/college-reports/2022-college-reports/cr233
Treasure J. Eating disorders and type 1 diabetes: a challenging combination. The Lancet Diabetes & Endocrinology. 2018;6(4):273. Doi: 10.1016/S2213-8587(18)30072-X.