Type 2 Diabetes Misdiagnosis: 3 Things That I’ve Learned

Last year, it was confirmed that after 8 years of living with type 2 diabetes, that I don’t have type 2 diabetes. This article will focus on what I learned from that experience.

Testing and diabetes

The first thing I learned was that I needed to ask for further testing. When I was diagnosed with diabetes in 2011, I was in the hospital for six days and upon being discharged, I had to see a long list of specialists. I saw a cardiologist for my heart, an ophthalmologist for the blurred vision I had developed, I saw a nutritionist for food education, and an endocrinologist for my diabetes treatment. I assumed that I had every test known to mankind. I was wrong.

Learning about LADA and a possible misdiagnosis

Since my diagnosis, I have had the privilege of traveling the globe as a diabetes advocate and on World Diabetes Day 2018, I was one of the “patient voices” at an event for medical physicians in the MENA region. I shared my diagnosis story as a part of my talk and during the Q&A, I was asked if I knew anything about LADA (latent autoimmune diabetes in adults) because my story sounded like a LADA case rather than a case of type 2 diabetes. I answered truthfully, I heard about LADA, also known as type 1.5, in passing but didn’t know much about it. At lunch, one of the attendees told me that I needed to find out if I have LADA and don’t stop until I get an answer. I said, “okay,” thinking this was a simple task. After all, I had been under the care of a few different endos and in two different countries since my diagnosis. I was certain that it would be easy to find out. I was wrong.

Requesting type 1 antibody testing

The second thing that I learned was that asking for further testing wouldn’t be as simple as I thought. A week after the conference, while at my scheduled appointment with the endo, I asked if I could be tested for type 1 antibodies. I specifically asked for the GAD 65, but I have since learned that there are others. When she asked why, I explained what happened at the World Diabetes Day event and I wanted to know for sure that I had type 2 diabetes. My endo scrolled through my records dating back 6 years and said that there was no need to get tested for antibodies.

At the next visit, I was prepared to ask for testing again, but this time I approached it differently. I asked, “Can you tell me if I have ever been tested for type 1 antibodies?” When my endo replied “No” after scrolling through all my records, I thought this is my chance. “Can I be tested for them now that we know that I have never had the tests?” Again, I was told there was no need for additional testing. Three months later, I asked another endocrinologist in the same clinic when it was time for my A1c check-up. Armed with the facts that I have never been tested, I politely asked to be tested. Surely, this new endo would run the tests seeing that I am an “informed patient.” I was wrong. Again, the answer was “No.”

My misdiagnosis of type 2 diabetes

The third thing I learned was that I was right to keep asking for testing. Shortly after being refused antibody testing the third time, I got very ill. My blood sugar levels wouldn’t go down and I ended up seeing my OB/GYN and explaining to her what the past year had been like for me. She agreed to test me and when the results came back, I was extremely positive for type 1 antibodies.

Over the last few months, I’ve been experiencing a myriad of emotions about learning that I fall within the category of people misdiagnosed with type 2 diabetes. The percentage of LADA patients who were misdiagnosed with type 2 diabetes, ranges from 6-50% depending on the population.¹ By sharing my story, I hope to encourage others living with type 2 diabetes to inquiry about type 1 antibody testing, because at least you’ll know if you’ve been correctly diagnosed.