Fear of hypoglycemia

It is a persistent dread of having hypoglycemia, especially severe hypoglycemia, in which you need someone else's help. It is not a weakness, but a natural reaction to an unpleasant and sometimes dangerous experience [1]. Fear becomes a problem when it starts to change your treatment decisions, for example your insulin doses [2].

Fear has two sides. On the one hand there are the worries, and on the other the behaviors. A well-designed questionnaire can assess both [3]. Worries are thoughts about a hypoglycemic episode during sleep, at the wheel or in public. Behaviors are the things you do to avoid a hypoglycemic episode, for example keeping your blood glucose deliberately higher or eating preventive snacks [3]. Fear is usually greater in people who have had severe hypoglycemia in the past year [3]. The questionnaire also has versions for children, for adolescents and for parents of young children [4].

Fear of hypoglycemia is common, but the figures vary quite a lot depending on how it is assessed. Almost one in three adults with type 1 diabetes has a high score on a short screening questionnaire for fear [5]. By other criteria, fear of hypoglycemia affects up to 10% of adults with type 1 diabetes, especially those with repeated severe hypoglycemia [2]. Fear often occurs together with impaired awareness of hypoglycemia, which means losing the warning signs [6].

Fear also affects the patient's relatives. Almost two thirds of the relatives of patients treated with insulin or with other medicines that can cause hypoglycemia are worried about this risk [7]. In patients at high risk of hypoglycemia or with severe or frequent hypoglycemia, fear is assessed at least once a year [6]. In children and adolescents, fear of hypoglycemia is assessed regularly, both in them and in their parents [4].

The main red flag is that you feel safe only when your blood glucose is high, for example above 180 mg/dL (10.0 mmol/L) [2] [8]. Other signs are rare corrections of high blood glucose, insulin doses smaller than the calculated ones and the wish to have higher blood glucose at bedtime. Glycated hemoglobin (HbA1c) rises, even though in theory you know how to adjust your insulin doses [2] [8].

This avoidance behavior leads to high blood glucose that persists for a long time, as the figure below shows [2]. In children, parents' fear can lead to mealtime insulin doses that are too low, and the family and even doctors may gradually accept blood glucose that is too high [4] [9]. Ask yourself whether you choose your insulin dose based on your blood glucose value or based on fear.

Yes, mainly through preventive snacks. These are snacks you eat to keep your blood glucose from falling, not because you are hungry. Such small "defensive" snacks are eaten, for example, at bedtime, before a journey or at the slightest tremor. They add calories and raise blood glucose, and over time they contribute to weight gain [10]. In adults with type 1 diabetes and eating disorders, greater fear of hypoglycemia is associated with more episodes of overeating [11].

The alternative, as with the insulin dose, is to decide based on your blood glucose value, not on fear. Blood glucose tested with a glucometer or estimated by a good sensor can replace the snack eaten "just in case". If your sensor has a predictive alarm, it warns you in advance when you need carbohydrates. A snack after treating hypoglycemia is still necessary, but a preventive snack, eaten without testing your blood glucose, is a fear behavior [3].

Yes. In adults with type 1 diabetes, fear of hypoglycemia is the strongest barrier to regular physical activity [12]. Fear of hypoglycemia during or after exercise can make you put off exercising or even give it up completely. People who face such problems usually have a higher HbA1c and feel less well [12].

Access to correct information reduces fear of hypoglycemia. Patients who know how their insulin works and how insulin doses are adjusted before exercise face fewer barriers [12]. The practical plan is on the page about exercise and hypoglycemia. Start with a short session, at times when you have little active insulin, watch your sensor and keep glucose within reach.

At night fear is greater, because during sleep you may not feel the signs of hypoglycemia [13]. Many patients deliberately go to bed with higher blood glucose or wake up at night to test their blood glucose, and their sleep becomes broken and unrefreshing [13]. In addition, nighttime hypoglycemia that you notice, through symptoms or through the sensor alarm, lowers sleep quality and energy the next day [14].

Partners and other family members may also sleep badly, for fear of missing a hypoglycemic episode [15]. Parents of young children fear nighttime hypoglycemia most of all [9]. Automated insulin delivery (AID) systems can reduce how often parents wake up at night and their fear of hypoglycemia [9]. Keeping blood glucose deliberately high is not a solution. Sensor alarms are safer, and you can share them with someone close to you if your sensor has this feature [2]. Pumps that automatically stop basal rates when blood glucose falls also help, as described on the page about nocturnal hypoglycemia.

Yes, and the relatives' fear can strain family life. Most relatives of adults with diabetes are, at least from time to time, very worried about the risk of hypoglycemia [16]. Strong worry is associated with more family arguments about diabetes and with frustration for the relative who wants to help [16]. Relatives of patients who no longer feel hypoglycemia may restrict their own lives to watch over them and sometimes neglect their own health as a result [17]. In parents of children with type 1 diabetes, fear is greatest after a severe hypoglycemic episode experienced together with the child and can affect their well-being [4] [18].

Family members describe broken sleep, strained relationships and a need for information and support that no one meets [15]. A partner who has found you confused or unconscious may live with this fear for a long time [17]. So talk openly with them, bring them with you to your next appointment and teach them how to use glucagon. Conversations about hypoglycemia, held together with the care team, can reduce the burden on the family [7].

Fear of hypoglycemia can be treated, and psychological therapy helps. Cognitive behavioral therapy and training to recognize blood glucose levels, especially hypoglycemia, can reduce fear and help you take better care of your diabetes [1]. Some approaches help patients who no longer feel hypoglycemia to change the beliefs that stop them from avoiding hypoglycemia [19]. For children, programs are still being developed, but for their parents a group program can reduce fear and stress [4] [18].

If the questionnaire shows high fear, your doctor refers you to a specialist trained for this problem [6]. Fear and impaired awareness of hypoglycemia often occur together, so what helps one often helps the other as well [6] [20]. The page on the psychological impact of type 1 diabetes also describes the other forms of support.

Yes, but the effect is small to moderate. A real-time sensor, a sensor-connected pump and an AID pump mainly reduce worries about hypoglycemia [21]. A sensor increases your confidence that you can cope with hypoglycemia and lowers diabetes-related emotional distress [22]. Patients who are satisfied with their sensor have less fear of hypoglycemia [22].

Technology does not replace psychological therapy. About one in five adults with type 1 diabetes still has at least one severe hypoglycemic episode a year, even though almost all of them use a sensor [23]. If severe hypoglycemia continues, the fear is justified, but the solution is a prevention plan made with your care team, not blood glucose kept deliberately high.

The conversation helps more if it is direct and includes examples. Say what you do out of fear, not just that you are afraid. For example, say whether you deliberately go to bed with high blood glucose or whether you have given up evening corrections or running [8]. If you are not offered it, ask for the fear of hypoglycemia questionnaire [5].

In patients at high risk of hypoglycemia, assessing fear is part of the routine check-up, at least once a year [6]. Your care team does not blame you, but helps you adjust your glycemic targets and your technology. If needed, it can refer you to a psychologist experienced in diabetes [6] [8]. Come to your appointment with your partner too, because their fear matters as well [7].