What is Nesidioblastosis (Congenital Hyperinsulinism)?

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Last updated: February 18, 2025View editorial policy

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From the Guidelines

Nesidioblastosis, also known as Congenital Hyperinsulinism, is a rare condition characterized by an abnormal overgrowth of pancreatic islet cells, leading to excessive insulin production and hypoglycemia [ 1 ].

Key Characteristics

  • It is associated with hypoglycemia and neuroglycopenic symptoms [ 1 ]
  • It may be linked to Roux-en-Y gastric bypass surgery, although the exact relationship is still being researched [ 1 ]

Treatment Options

  • Pancreatic resection and re-resection have been used to manage severe cases, particularly those that are refractory to other treatments [ 1 ]
  • Dietary changes and medications may also be used to manage hypoglycemia, although the specific treatment approach will depend on the individual case

Important Considerations

  • Individualized treatment is essential to balance the risk of hypoglycemia and potential surgical complications [ 1 ]
  • Close monitoring of blood glucose levels and adjustment of treatment as needed is crucial to prevent long-term complications [ 1 ]

From the Research

Definition and Characteristics of Nesidioblastosis

  • Nesidioblastosis is defined as the neoformation of the islets of Langerhans from the pancreatic ductal epithelium 2.
  • It is recognized as the most common cause of hyperinsulinemic hypoglycemia in infants 2.
  • In adults, nesidioblastosis is a rare form of abnormal islet cell proliferation arising from the pancreatic ductal epithelium, usually associated with severe hyperinsulinemic hypoglycemia 3.
  • The condition is characterized by diffuse islet cell hyperplasia arising from the ductal epithelium 4.

Clinical Presentation and Diagnosis

  • Nesidioblastosis can present with symptoms of hyperinsulinemic hypoglycemia, including fasting hypoglycemia 5.
  • The diagnosis of nesidioblastosis can be challenging, as it may mimic insulinoma, and requires a combination of imaging, laboratory examinations, and histopathological analysis 2, 3.
  • Selective arterial calcium stimulation (SACST) can be used to localize the source of insulin production and aid in the diagnosis of nesidioblastosis 5.

Treatment and Management

  • Treatment of nesidioblastosis may involve medical management with diazoxide, although some patients may require pancreatectomy to control hypoglycemia 4.
  • Greater than 90% resection of the pancreas frequently results in insulin dependency and permanent diabetes 4.
  • Subtotal distal pancreatectomy has been shown to be effective in managing nesidioblastosis and preventing further hypoglycemic episodes 5.

Prevalence and Rarity

  • Nesidioblastosis is a rare entity in adults, representing 0.5-5% of cases of organic hyperinsulinemia 6.
  • Only 71 cases of adult-onset nesidioblastosis associated with hyperinsulinemic hypoglycemia have been published since 1981 6.
  • The condition is more commonly associated with infants, where it is the primary cause of persistent hyperinsulinemic hypoglycemia 6.

Professional Medical Disclaimer

This information is intended for healthcare professionals. Any medical decision-making should rely on clinical judgment and independently verified information. The content provided herein does not replace professional discretion and should be considered supplementary to established clinical guidelines. Healthcare providers should verify all information against primary literature and current practice standards before application in patient care. Dr.Oracle assumes no liability for clinical decisions based on this content.

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