It’s possible to be misdiagnosed with type 2 diabetes, if you actually have type 1 diabetes or another form of the condition. You may take these actions, including requesting specific diagnostic tests, to help obtain an accurate diagnosis.
Being diagnosed with diabetes can be a shocking development that may mean life changes and getting used to a “new normal.”
But for those who receive a type 2 diabetes (T2D) diagnosis, there may sometimes be a concern about misdiagnosis. Some estimates put that number
This is because certain symptoms may be similar between different diabetes types, and it’s not always as clear as a blood test result which type of diabetes you may have.
Obtaining an accurate diagnosis is crucial for getting the correct treatment and preventing complications. Here is a step-by-step guide on what to do if you believe you’ve been misdiagnosed with T2D.
You are the expert on how you’re feeling and what symptoms you may be experiencing, in all the moments away from your doctor’s office or any clinical setting.
Ensure that your doctor has the most up-to-date and thorough information to review when diagnosing your medical condition and determining your diabetes diagnosis, as well as any care plan.
Make a list of all your symptoms and your complete medical history to share with the doctor, paying close attention to factors that may point away from a typical T2D diagnosis:
- Weight: People with latent autoimmune diabetes in adults (LADA) or MODY (maturity onset diabetes of the young) are often at a healthy weight when diagnosed, which is less common for type 2 diabetes.
- Speed of onset: If your symptoms came on quickly, or if you initially lost a lot of weight, it may point toward type 1 or LADA.
- Autoimmune history: A personal or family history of other autoimmune conditions (like thyroid disease or celiac disease) is a stronger indicator of LADA or type 1.
- Treatment effectiveness: If oral medications initially worked but quickly stopped being effective, it could indicate a form of diabetes that requires insulin, such as LADA.
A misdiagnosis typically occurs when the actual condition is initially mistaken for T2D. Getting tested for these other types can provide a more definitive diagnosis.
- Autoantibody tests: These may include GAD antibodies and a C-peptide test, which measures the amount of insulin your body produces. A positive antibody test and a low C-peptide level could suggest LADA or type 1 diabetes, not T2D.
- Genetic testing: This is often used to determine if you have MODY, a rare form of diabetes caused by a genetic mutation. It may be mistaken for T2D because it often presents without autoantibodies and can initially be managed without insulin. Some research indicates that more than half of people with MODY may initially be misdiagnosed with type 2.
These tests would be in addition tyo the standard lab work and testing typically performed when diagnosing diabetes:
| A1C (glycated hemoglobin) | Your average blood sugar level over the past 2 to 3 months. |
| Fasting plasma glucose (FPG) | Your blood sugar after an overnight fast. |
| Oral Glucose Tolerance Test (OGTT) | How your body processes glucose two hours after drinking a sugary liquid. |
| Random plasma glucose | Your blood sugar at any time of day (often used with symptoms). |
If you current doctor does not change the diagnosis or agree to additional testing, you may choose to consider another healthcare professional to help you properly diagnose and manage your condition.
- Consult an endocrinologist: This is a doctor who specializes in the endocrine system, including diabetes. They have the highest level of expertise in diagnosing and managing all types of diabetes.
- Ask for a referral: You can ask your current doctor for a referral to a specialist for a second opinion. Good doctors should be comfortable with this request.
- Gather your medical records: Ask your current doctor to send all relevant medical information, including office notes and the results of your initial blood tests (like A1C, fasting plasma glucose, and oral glucose tolerance test) to the new specialist.
No, you should not change or stop any specific diabetes treatment if you believe you’ve been misdiagnosed.
Always consult your healthcare team first, to discuss any symptoms or concerns and get guidance before making any changes to your treatment plan.
They may order new diagnostic testing or change medications or dosages to help better diagnose your condition and revise your care plan.
You are the best expert when it comes to your health and diabetes. If you believe you may have been misdiagnosed with type 2 diabetes, you can discuss this more with your doctor or endocrinologist.
They may want to know more about your symptoms or how medications may not be working as effectively as you believe they should. This can also mean logging blood sugar data to share with your healthcare team.
You can also request specific diagnostic tests, including bloodwork and genetic testing, to determine if you might have another type of diabetes. Don’t be afraid to consult a new doctor if you don’t believe a current healthcare professional is listening or providing the care you need.