Misdiagnosis of Adult-Onset Type 1 Diabetes: Root Cause Analysis

Good question and I think the medical profession should be embarrassed that they, at this late date, have not yet adopted a clear commitment to this in their standards of care.

You’ve been living with T1D for 19 years longer than me. We know it’s never been easy and the new tools, especially CGM, have made things better, but still a struggle.

I was diagnosed at age 19, in 1987, and I was overweight. After getting progressively sicker over the course of a month I went to a doctor who asked me to pee in a cup and then said I had to get to the hospital immediately. Once I was admitted the adolescent endo who was in charge of my care in the hospital mentioned several times that “it wasn’t my fault and there was nothing I could have done to prevent it”. I had no clue why she was saying that until much later because I knew NOTHING about diabetes or the different types. She told me I must take insulin shots for the rest of my life. I wonder if I had been 5 years older at the time if I would have been misdiagnosed.

18 years later I was finally seeing an endo after having basically no medical care due to lack of insurance, and still overweight. The endo recommended a pump and had me meet with the NP in the office who handled that. She took one look at me and asked who told me I had Type 1. She seemed very sure I was misdiagnosed and had Type 2. She ordered tests for the antibodies and a c-peptide test. They came back showing massive amounts of antibodies and that I was making zero insulin. She never brought up Type 2 again after that.

Maybe 8 years ago my sister was diagnosed in her 40s. She has always been skinny and over the course of a month, since I had seen her last, she lost 9 pounds and looked like death. In the ER there was a doctor saying they would have to decide what medications to prescribe. I looked at him and said, “She needs insulin. She obviously has Type 1”. He didn’t think so. Fortunately whatever doctor was in change once she was admitted and in a room made the correct diagnosis.

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These stories make me so sad and also a little angry. A simple c-peptide with each person with diabetes could avoid this. Those should certainly be run along with antibodies is a person has symptoms or DKA. It’s so dangerous if a person is type 1 and you treat them as a type 2. Even the Endo’s make assumptions. I thought that is why you go to an Endo!!! I have a few auto immune diseases and didn’t do well on some of the oral meds, I had to ask for the antibody tests and c-peptide. While it seems I am type 2, they still should have ordered these tests without my asking for them.

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Thank you!!!

@Liz, I am glad that your sister was correctly diagnosed. As for your situation, weight is irrelevant! That is another myth that doctors cling to. Time to dispel these myths!

@Melitta, your persistence with this topic is so admirable, and many likely owe their current care to being armed with the information you’ve provided. Thank you!

@Colleen15, I can attest to the racialization piece, being of Asian ancestry and having a majority of family members diagnosed Type 2 (including my only sibling who is one year older), and no other Type 1s.

@taniwaki, thank you! Yes, I have had to persist for some time, it has been decades, why is misdiagnosis still a thing???!!! I only made slight mention in my blog of race, but it is definitely a myth that Type 1 only happens to white people, and thus anyone who is non-white is more likely to be misdiagnosed. And if you are non-white and overweight (or “no longer at fighting weight” as I like to say) your chances of getting a correct Type 1 diagnosis/treatment are highly unlikely.