Type 2 diabetic misdiagnosis may happen to one in five people who have been told they have adult-onset diabetes. That's 20% of new diabetics.
Doctors look at high blood sugar, age and being overweight as the top defining factors for diabetes.
Vast numbers of us are becoming type 2 diabetics. In the U.S. the number grew from 8 million in 1995 to 25.8 million in 2010.
If you are normal or underweight but develop high blood sugar, your doctor should suspect latent autoimmune diabetes in adults (LADA).
But you will probably get the type 2 diabetic misdiagnosis, because we think of type 1 as a children's disease.
Experience has taught us to expect age to be a factor in type 2 diabetes. So if you develop diabetes as an adult, doctors will assume you are one of the 90% of diabetics who are type 2.
There are stories on the LADA websites of diabetics who found out they were type 1 after ending up in the hospital.
Believe it or not, some doctors do not suspect that type 1 diabetes has developed in a grownup.
Mary Tyler Moore was diagnosed with type 1 diabetes when she was 33. That was years ago, so doctors ought to be looking for latent autoimmune diabetes in adults.
So how can 20% of patients with high blood sugar have type 2 diabetic misdiagnosis?
Some have developed ketoacidosis before someone caught the mistake.
In adult onset type 1 diabetes the beta
cells are being slowly destroyed by the person's own T-cells. It is an autoimmune disorder.
To see this attack in action, go to your web browser and type in "T cells attack pancreatic islets."
You will be directed to a video made with a proton camera at the La Jolla Institute for Allergy and Immunology.
It captures the T cells attacking a beta cell in a mouse, the first live proof of what happens in a type 1 diabetic.
Latent autoimmune diabetes in adults (LADA) presents the same way type 2 does, as high blood sugar.
After type 2 diabetic misdiagnosis, doctors usually put their new diabetic on an oral medication.
But a type 1 diabetic needs to be on insulin injections from the moment of diagnosis. Since insulin resistance is not the cause, type 1 does not improve with oral meds.
With type 2 diabetic misdiagnosis, doctors assume that if you are over 20 and have high blood sugar, you must have type 2 diabetes. They equate type 1 with infants and children, not adults.
So they give you oral medications. At first these seem to work for latent autoimmune type 1 diabetics.
Why? Because it takes a long time for antibodies to completely destroy every beta cell in the pancreas. Some call this the honeymoon period in LADA, when blood sugars are slowly rising.
It might take years for those T cells to finish off every healthy beta cell in an adult.
Why should you care about type 2 diabetic misdiagnosis?
If you are an adult onset type 1 diabetic you will continue to lose beta cells. You can change dietary habits and exercise but you will not stop this process.
Your body literally has an allergy to the beta cells, and there is no way science knows of to make it stop.
Some cases of ketoacidosis and death or near death have been reported because doctors were treating LADA patients as type 2 diabetics. They did not realize these patients needed insulin, not a better diet.
Later those patients found out that their doctors did not consider adult onset type 1 diabetes at all. That meant they were not doing tests to clear up the mistake.
Those tests are necessary because judging by symptoms is what leads to type 2 diabetic misdiagnosis. In its early stages, LADA acts like diabetes mellitus.
Part of the problem is that type 1 diabetes is a rapid onset disease in children. It can happen in days. But in adults it can take years.
Even though LADA is genetically linked and hereditary, that is not enough to help correct type 2 diabetic misdiagnosis.
Because nearly 90% of patients with high blood sugar have type 2 diabetes, doctors may not know when to separate type 1 from type 2 that begins in adults.
Besides, once an adult onset type 1 diabetic is put on insulin and gets a hemoglobin A1C below 7, the treatment for type 1 and type 2 diabetes looks the same.
Exercise and a healthy diet help both, although most type 1's do not need to lose weight.
There is another problem, though. Diabetics who find out they have LADA have a higher incidence of depression and eating disorders. No one seems to know why type 2 diabetic misdiagnosis leads to this.
Perhaps there is a fear that type 1 is a death sentence. There is no hope for remission as there is with type 2. So these diabetics need good support and diabetes education to help them adjust.
There are things doctors can look for that do not fit the type 2 diabetic diagnosis. One is a normal or low BMI.
Some type 2 diabetics do have a normal BMI but most are overweight. It is also true that some adult onset type 1 diabetics are also overweight.
So doctors need other things to look for, and cholesterol is one. Type 2 diabetes goes along with elevated bad cholesterol and triglycerides, and if yours is not high you may have type 1 diabetes.
If you are on oral medications and have a low BMI and yet your hemoglobin A1C stays high, you might be an adult onset type 1 diabetic, and it is time to get some testing done to find out what's going on.
Your doctor might perform the C-peptide test that measures insulin secretion. Numbers are higher in type 2 diabetics due to overproduction of insulin.
They are usually lower in adult onset type 1 diabetics since you are losing islet beta cells.
The GAD antibody test reveals antibodies that are found in type 1 diabetics whose beta cells are being distroyed by an autoimmune reaction.
The ICA or islet cell antibodies tests will often come up positive in LADA diabetics, but type 2 diabetics seldom test positive for the antibodies.
Another test is the IAA or insulin antibodies test. It will help distinguish between LADA and type 2 diabetes.
All of these tests will help clarify your diagnosis and separate type 1 from type 2, but the tests are not given routinely. There has to be a good reason to give them.
If you are not satisfied that the doctors have diagnosed you correctly as a type 2 diabetic, talk to them about what you have learned. If you do not get your concerns met, go to an endocrinologist who will do the tests that settle it for you.
Of course, if you are already on insulin it may not matter to you as long as your A1C is in a good range and you are not being plagued by complications. This is your journey and it is up to you. Please take care.
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