Female doctor explaining diagnosis to her female patient

One problem that can occur in diabetes is if you get misdiagnosed with the wrong type of diabetes. The two main types of diabetes are type 1 and type 2 diabetes, and both have similar symptoms as they share high blood sugar as the main presenting factor.

At Diabetes.co.uk, we are used to seeing people on the Diabetes Forum talking about a misdiagnosis they’ve been through or asking about the possibility that a misdiagnosis may have occurred. To mark Diabetes Awareness Month, we’re exploring the mistakes of misdiagnoses and what you could do if you feel like you have been misdiagnosed.

Diabetes types are not always clear

Currently diabetes in adults is diagnosed largely by blood sugar levels, which is an effective way of telling if someone has diabetes but does not provide a good indication of the type of diabetes. Unless blood sugar levels are very high, and sometimes even when they are, the type of diabetes is often determined by a degree of deduction rather than with specific additional tests to assess the correct type.

For example, someone presenting with high blood sugar levels and symptoms of metabolic syndrome, such as being over 40 years old, overweight and having high blood pressure and/or cholesterol levels, are likely to receive a diagnosis of type 2 diabetes.

The trouble is that mistakes can happen. It is certainly possible to be over 40, overweight, have high blood pressure and to develop type 1 diabetes. In such a case, an initial diagnosis of type 2 diabetes could see the person struggle to control their blood sugar for months or even years before being diagnosed with the correct type of diabetes.

There are a number of grey areas when it comes to diagnoses of diabetes. Whilst type 2 diabetes is significantly more common in adults than type 1 diabetes, it should not be assumed that an adult with diabetes must have type 2 diabetes.

It was once commonly thought that type 1 diabetes was a young person’s condition. We now know that half the cases of type 1 diabetes develop after the age of 30. Cases of type 1 diabetes in people over the age of 30 are often referred to as latent autoimmune diabetes of adulthood, or LADA for short.

The problem with misdiagnosis

The problems with misdiagnosis relate to the fact that people are put onto an inadequate treatment plan. If someone with type 1 diabetes is diagnosed with type 2 diabetes, it can take a long time for the person to go onto the insulin they need.

If an adult with type 1 diabetes is misdiagnosed and is not prescribed insulin, they will struggle to achieve healthy blood sugar levels. This can increase the risk of diabetes complications occurring and can negatively affect quality of life.

Misdiagnoses can also occur whereby someone with type 2 diabetes is diagnosed with type 1 diabetes. In such a situation, this can lead to an inappropriate treatment being given as intensive insulin therapy could lead to problems such as hypoglycemia and increase the risk of weight gain.

Should more tests be carried out to determine the right type?

Ideally, tests would be carried at diagnosis to ensure people are being diagnosed with the correct type of diabetes. The trouble is that these additional tests would add significant cost to the NHS, given that around 280,000 people are diagnosed with diabetes each year.

The flip side of the argument is that if people do not receive the correct diagnosis, this could lead to additional long-term costs if health problems develop through inadequate treatment.

There is certainly a case for more tests to distinguish between the different types when someone’s diabetes type is not clear cut.

If you are in doubt about your diabetes type, arrange an appointment with your doctor. It will help to list in advance the reasons why you believe your diabetes type needs checking so you can discuss these during your consultation.

A team of researchers believe that as many as around one in six young adults may be initially misdiagnosed with the wrong diabetes type. As a result, they have developed a new test to reduce the likelihood of a misdiagnosis. Such a test could be a positive step forwards for people newly diagnosed if the NHS feel it is cost-effective.

Type 1 diabetes diagnoses being missed in children

Sadly, misdiagnoses can sometimes be tragic. Diabetes.co.uk is aware of a number of cases in which a child with the symptoms of type 1 diabetes has been misdiagnosed as having another condition such as a virus.

This can be dangerous as type 1 diabetes can develop quickly in children. If a child with type 1 diabetes is misdiagnosed it can lead to that child going extra days or even weeks without receiving the insulin they desperately need.

In January 2015, Beth Baldwin received the heartbreaking news that her 13-year-old son, Peter, had died of short-term complications because his type 1 diabetes had not been diagnosed in time.

Beth responded in the moment caring way she could and started campaigning to increase awareness of the symptoms of type 1 diabetes to prevent other families going through the tragedy her family had to.

The most recognisable signs of type 1 diabetes are the 4Ts: tiredness – being more tired than usual, toilet – needing to urinate more often than normal, thirst – being abnormally thirsty, and thinness – losing weight for no clear reason.

Beth has campaigned in Wales for doctors to routinely assess the risks of type 1 diabetes in a child or young person appearing unwell.

If in doubt, ask

In general, the NHS is good at diagnosing diabetes and most diagnoses are of the correct type. However, as this blog shows, it helps to be aware that mistakes can sometimes happen.

If you have reason to doubt your diagnosis, ask your doctor and they should be happy to help you.

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