Living with ketotic hypoglycemia

What is ketotic hypoglycemia?

In a normal person, fuel for the brain and the general cell metabolism primarily comes from the burning of sugar deposits (glycogen). When the glycogen stores are depleted, the body will switch to burn fat deposits. The fat burn leads to two fuels for the brain, both glucose (sugar) and ketone bodies. However, ketones in the blood will lead to nausea and eventually vomiting. This will lead to a vicious circle, where you cannot eat or drink sugar-rich items, which again leads to further fat burn and production of ketone bodies.

In a KH-patient, the glycogen stores are somehow insufficient. This leads to decreased fasting tolerance with earlier onset of fat burn and hence ketone bodies. In most patients, the hypoglycemia is relatively mild, and the ketone bodies helps to provide fuel to the brain, which prevents loss of consciousness and convulsions. However, in relatively few patients, the condition is more severe, but still without an identified cause despite intense investigations in hormones and cell metabolism. Such patients are said having “idiopathic” KH, or IKH, which simply means KH without any known cause.

Source: Danielle Drachmann and professor Henrik Christesen, Odense University Hospital, Danmark


  • Pale Skin
  • Breathing problems
  • Irritability or listleness
  • Loose muscles
  • Poor feeding or vomiting 
  • Body temperature irregularity
  • Tremors, sweating or seizures
  • Abdominal pain
  • Memory issues
  • Acetone-scented breath
  • Some severe KH patients have also shown to not to have any of the symptoms at all.

We are greater than our highs and lows

testimonials from real families with ketotic hypoglycemia

What drives our organisation?

KHI is driven through voluntary work by clinicians, patients and experts

Ketotic Hypoglycemia is the only organisation connecting the experts with all patient-groups affected by ketotic hypoglycemia.

Real people. Real stories.

Ketotic Hypoglycemia International

Thank you to our partners!

Partners, Affiliates, Donors and Supporters.

KHI: Latest Updates

See what's new in the world of ketotic hypoglycemia