Misdiagnosis

Misdiagnosis

Juvenile Diabetes myth puts Australian adults at serious risk of disease New research about Australians who are diagnosed with Type 1 Diabetes as adults

Widespread misdiagnosis of Type 1 diabetes in adults is resulting in serious, life threatening but avoidable complications including hyperglycemia or high blood sugar levels, blackouts and even diabetic coma, according to a recent national survey by diabetes charity The Type 1 Diabetes Network.

The national survey of over 850 people with Type 1 diabetes who were diagnosed as adults, found that one in three adults were diagnosed with a condition other than Type 1 diabetes when they first visited their healthcare professional.

The findings come as the national diabetes not-for-profit group marks the 5th anniversary of their Starter Kit, a resource created especially for newly diagnosed adults with Type 1 diabetes and supported by Abbott Diabetes Care.

70 percent of misdiagnosed adults surveyed experienced hyperglycemia (high blood sugar) as a result of their incorrect diagnosis, which commonly presents as fatigue, weight loss and blurred vision, but can also lead to severe dehydration resulting in coma or death. One in ten reported a blackout, while five percent said they went into a diabetic coma as a result of the misdiagnosis.

Two thirds or 65 percent then had to go back to a healthcare professional three or more times before they were correctly diagnosed with Type 1 diabetes.

Type 1 diabetes or ‘juvenile diabetes’ as it is sometimes called, is a serious, life-long autoimmune condition which cannot be prevented and can appear at any age, with more than 50 per cent first developing the condition in adulthood .

The disease requires injections of insulin and finger prick blood tests several times every day and can have a major impact on life expectancy and quality of life, especially if poorly controlled. The disease causes a major health, social and economic burden for individuals with the disease, their families and the community .

1,260 Australian adults are diagnosed with Type 1 each year, or more than 3 new cases per day. One third are people aged 15–24 years, another third are 25–39 year olds and the remaining third are people over 40 .

Founder and President of The Type 1 Diabetes Network, Kate Gilbert, said:

“Healthcare professionals need to consider Type 1 diabetes when adults present with relevant symptoms rather than dismiss the possibility due to the patient’s age. The myth of juvenile diabetes means adults are being misdiagnosed and put in unnecessary danger.” “Australia has a forgotten group of Type 1 diabetics, those who are first diagnosed as adults and often receive little support or given support that is geared towards children and don’t necessarily fit their needs.

“The Starter Kit fills this information gap and is specifically tailored for newly diagnosed adults. It is designed to help adults overcome the anxiety of their diagnosis with this life-long condition and improves their quality of life through information about living with Type 1 diabetes such as diet, insulin adjustment, emotional support and personal stories from others with diabetes”, she said.

The Type 1 Diabetes Network’s Starter Kit was created in 2003 by people with Type 1 diabetes using a grant from the Australian government. Healthcare professionals and patients from all over Australia contributed to the Starter Kit which is printed and distributed with the ongoing support of Abbott Diabetes Care.

40-year-old Amanda McNaught from Queensland was told she was two days away from diabetic coma due to her Type 1 diabetes being misdiagnosis as Type 2 diabetes. She first approached her doctor three years ago with symptoms of dramatic weight loss and severe thirst.

Amanda said, “The doctor did some blood tests and called me two days later to say I had Type 2 diabetes and prescribed me some tablets. He said it was a result of my lifestyle and weight and the tablets would make me feel better. I did not have much confidence in the doctor’s verdict but I accepted it.”

Amanda’s symptoms persisted as she lost a further 38kg in weight over the next five months. She also suffered anxiety, depression and blurred vision that was affecting her work.

“My family encouraged me to go and see our family doctor and he did more blood tests and sent me to an endocrinologist. I had numerous tests and was diagnosed with Type 1 diabetes straight away. I was admitted into hospital, put on insulin and within 48 hours I felt like a new person. I was told by the doctors that if I had waited another two days I would have ended up in a diabetic coma.”

Amanda was in hospital for one week recovering from the implications of her misdiagnosis.

“I received The Starter Kit from my diabetes educator when I was in hospital and it was brilliant as it provided me with information I could not find anywhere else. It tells you the basics and really helps you gain control of the situation when you are diagnosed with a lifelong chronic condition.”

Kate Gilbert agrees Type 1 diabetes is a very complex disease and requires a daily regime and constant monitoring. “Patients have to be diligent and properly informed to be able to manage the condition. The Starter Kit is there to support people with Type 1 diabetes and answer many of the questions they have when first given this often devastating diagnosis”, said Kate.

The Starter Kit is available free of charge from your Diabetes Nurse Educator or Healthcare Professional and also online at www.d1.org.au/starterkit/

About The Type 1 Diabetes Network The Type 1 Diabetes Network is a not for profit organisation of people with Type 1 diabetes founded in 1997. It is the largest organisation in Australia run entirely by people with Diabetes, all of whose involvement is voluntary. The Reality Check website is run by The Type 1 Diabetes Network Inc., and receives more than 50,000 hits a day. The organisation is run by a dedicated team of volunteers: all people with Type 1 diabetes ourselves. More...

Published 22 April 2009