I grew up with two siblings with type 1 and because of this I’m a research participant in a TrialNet study for antibody monitoring and T1DM risk assessment. For the past 10 years I’ve tested positive for one auto-antibody (GAD) but had normal BG and was told my risk of developing type 1 was relatively low. One year ago I tested positive for a second auto-antibody (which put me in the “stage 1 preclinical” stage of type 1) and was told that my chances of diagnosis were 50% within 5 years, 70% within 10 years, and 100% within my lifetime. A few weeks ago my PCP called with news that fasting blood sugar was slightly high. I went out and bought a glucometer and my fasting numbers have routinely been between 90-108.
I’m reaching out because of my frustration with the unique situation that I’m in. I haven’t been diagnosed yet but when I received the news that I will eventually get type 1, it carried the emotional weight of a diagnosis. It’s been so frustrating with the amount of people telling me I should eat less sugar or cut back on carbs, including my PCP even after I gave her a detailed report of my impending diagnosis, my own mother who raised two kids with type 1, and best friends asking if I could prevent/cure a dx with diet. The general population’s confusion between type 1 and type 2 is already draining on me. I work as a dietitian and am already worried of people incorrectly assuming that I developed diabetes due to poor food habits and lack of exercise.
Is anyone else in a similar situation? It’s so helpless knowing my beta cells are slowly dying and there’s nothing I can do about it. I suppose the benefit of knowing my current situation is that hopefully DKA can be avoided with an early diagnosis, but I have often wished I could have lived these next few years before my dx in ignorant bliss.