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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.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Type2Diabetes.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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