Symptoms of Type 1 Diabetes
Type 1 diabetes starts most commonly when people are young - that is anytime between the age of 2 and 20. With Type 1 diabetes - also called insulin-dependent or juvenile diabetes - the pancreas is no longer able to produce insulin because the body's immune system destroys, or attempts to destroy, the cells in the pancreas that produce insulin. Insulin is the hormone that allows glucose to enter the cells of the body to provide fuel. When glucose cannot enter the cells, it builds up in the blood and the body's cells literally starve to death. Everyone with Type 1 diabetes must take daily insulin injections and regularly monitor their blood sugar levels. The cause of diabetes type 1 is unknown, but it is believed that people inherit a tendency to develop diabetes, and that viruses may be involved.
We have talked to a range of young people who have lived with Type 1 diabetes from those who were very young when they were first diagnosed to those who were diagnosed when they were teenagers. We have also talked to some young people only recently diagnosed. In this section young people talk about the signs and symptoms that prompted them to seek medical help.
Most people remembered that the first symptoms of diabetes had crept up on them over weeks or even months- most had felt thirsty all the time and said that they started to drink more and more and found that they were unable to quench their thirst. Lots of people described realising something must be wrong with them because they needed to go to the loo all the time; some mentioned that they had started to wet the bed. Rapid weight loss was another sign to some young people that something might be wrong, while others had noticed feeling unusually tired and thought they must be 'run down' Other symptoms could be more dramatic - several people said that they had experienced blurred vision.
Some of the young people were too young when diagnosed to remember much about their early symptoms.
Other less common symptoms included fainting, headaches, nose bleeds and mouth ulcers. In one case a young woman thought she had no symptoms, other than feeling extremely tired all the time, and it was just by chance that her diabetes was diagnosed.
Most young people reported that once they had gone to their doctor they had been diagnosed fairly quickly following a simple urine or blood test. In one case the diagnosis was delayed by a few months because the GP thought it was stress - and in fact several teenagers interpreted their tiredness as stress due to school work and so didn't immediately seek help. One girl, diagnosed when she was seven, said that her father (also diabetic) spotted her symptoms, used his own blood glucose meter to test her blood glucose level and took her straight to hospital. One woman needed a more complex test called oral glucose tolerance test because her blood glucose level was borderline.
In the case of twin brothers, one of them was diagnosed with Type 1 diabetes three months after his brother. Both twins knew about symptoms but only the one diagnosed earlier experienced them. Doctors told the parents that there was a 60 per cent chance that the other twin would developed diabetes and tested him for it.
Young people were told about their diabetes by the GP, by the diabetes nurse or the hospital doctor. On hearing the diagnosis most young people described their first reaction 'as a shock'. Many felt upset and sad, and some remembered bursting into tears when they first heard the diagnosis. Others asked themselves 'why me' and felt it was unfair. Those who were diagnosed as children do not remember any reaction and said that they have grown up with diabetes, that it is part of their lives. Some young people indicated that to be diagnosed in your early teens could affect your confidence, that it could make you a 'bit quiet' for a while.
Many said they felt reassured to be told straightaway that the diabetes was not their fault, that they hadn't done anything wrong. For other young people the diagnosis came as a relief because they said that at last they understood what was making them feel so poorly.
Most of the young people we talked to said that they hadn't known what diabetes was and that they didn't know anyone else who had it. One seventeen-year-old teenager said, “I didn't know what the hell was happening at first”. A young woman said that because she did not know anything about diabetes she had plenty of questions that needed answering, like 'Will I be able to have children?' and 'How is it going to affect my life?' (See also: 'Talking about - Information about diabetes'.)