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Were you misdiagnosed with another condition before you were diagnosed with T1D?
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No, but my GP couldn’t make heads or takes of my annual bloodwork. Sent me to the hospital, where over the course of 4 hours they re-ran the blood work another 4 times, trying to figure out why I was still walking, talking, seemingly normal. I was in DKA and “should have been in a coma”. They admitted me to the ICU, where the resident diagnosed me T1D at age 42.
Our daughter was not misdiagnosed, but was in DKA by the time she was diagnosed, in part because the symptoms that were present were misinterpreted for other things. She was 15 months old, so prone to growth spurts that masked T1D symptoms. For example, she started wetting through her diapers, but was a weight that put her at the cusp of changing from one size to the next. She tinned out, but was an age at which a number of toddlers in our family grew in height but not weight, so looked taller and skinnier. She was asking to drink a lot, but her primary liquid intake was milk/formula, so we thought she was increasing intake due to a growth spurt. Her endo told us in the PICU that she’d likely been emerging as a person with T1D for up to six months at that point, during which time she’d had at least two but likely three well-child checks. It’s why we’re huge proponents of the “Test One Drop” initiative – would have been much nicer to pick it up earlier, before she developed DKA.
I was misdiagnosed as a Type 2 because I was 28. I was sent home with a prescription for Metformin, some pamphlets about Type 2, and told to diet and exercise. I had just lost 12 pounds in 2 weeks with a fasting blood sugar of 245 and A1C of 13.1. I had to advocate for months to get a referral to a CDE, nutritionist, and an endocrinologist. My first endocrinologist said she thought I was a Type 1 but the medication was working fine so she did not order any labs. I switched primary care doctors who said she did not think I had Type 2 and referred me to a new endocrinologist. It took a while to get a new patient visit, but he put me on insulin that day and before the lab results confirmed I was Type 1. This was about 9 months after the Type 2 diagnosis. My body was so relieved to receive insulin; I no longer felt tired all the time.