Insulinoma support network
Sharing knowledge and experiences of insulinomas

 Welcome to Insulinoma UK


      Real stories, from real people - eInsulinoma Book

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This book will provide a greater understanding of insulinomas and it contains information about symptoms, diagnosis and treatment. The book is written by real people with an insulinoma who want to share their story about having the condition. It is written in their own words and in their own voice. It is dedicated to the memory of Te Rina Lyttle who died at the age of 15 years old from a malignant insulinoma in April 2012. 

Welcome, to the insulinoma support  network. The overall aim of the site is to create an insulinoma community, raise awareness and  to provide up to date, easily accessible information. To date, most of the information on insulinomas is grouped with other rare neuroendocrine tumours. This site will provide a unique platform by bringing together  information on this rare condition in one place.

We recognise that because of the rare instance of insulinomas many visitors to the site will not be from the UK. Everyone, wherever you are from, are welcome to share your views and experience of living with an insulinoma.

The more we share the more we learn.

 What are insulinomas?

Insulinomas are a rare type of functional neuroendocrine tumour usually found in the pancreas. They are called functional because they produce insulin and cause blood sugar levels to drop, quite often dramatically and in 'episodes.'

Even the smallest tumours can cause symptoms connected to hypoglycemia (the medical term for low blood glucose levels).

The vast majority are benign (with no spread beyond the pancreas). However, 10% are malignant and by the time of diagnosis will have spread elsewhere in the body, usually the liver. The tumours are generally diagnosed in middle age and slightly more women are affected. If an insulinoma is suspected you may also be screened for a genetic condition called MEN1.





 Copyright and Content: Content on this site has been sourced from the NET Patient Foundation that supports people diagnosed with neuroendocrine tumours and their families. For further information visit :