Stage 1 PreClinical Type 1

Hi all,
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.

I understand the difficulties, but also think you’re fortunate to know what to look out for. I think there are some clinical trials going related to preventing or delaying onset, so you could check into that. From my point of view, you’re experiencing a dilemma most of us don’t face until after we’re diagnosed - will I live “with” diabetes, or “for” it? In other words, will I try to live my life doing the things I love while managing my diabetes, or will I let diabetes management and worries take over my life? If I was in your shoes, I would focus on living a healthy lifestyle, which you’re probably already doing, and I would not allow myself to focus on the what if’s. People are ignorant and hurtful about T1, and that won’t ever go away. I suggest you test yourself less often, perhaps once a week or once a month. Perhaps stay in touch with diabetes issues through an organization like DiaTribe, evaluate your personal goals, and identify the things in life that really motivate you. You can have a great life with or without TD.

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Hi Anna @Annaosborn11, the information that you have been given actually puts you in a really good position, and in this day and age you have the medicine, other tools, and information to very successfully and easily manage YOUR diabetes - that is, if you actually develop diabetes. There are many people who have “antibodies” who never develop die-a-beat-us, as this condition was called when I was diagnosed - very few young kids diagnosed lived 10 years. Your future is in your hands, live a fully active, healthy lifestyle and as @mikefarley was suggesting, get yourself into a clinical study seeking methods for delaying the onset of TypeOneDiabetes.

You obviously understand TypeOne, and know the know that autoimmune diabetes is caused by the body misidentifying and destroying beta-cells, and is managed differently from the several other conditions called “diabetes mellitus”; don’t become upset by paying attention to the confusion of the general population - that confusion may present you with a “teaching moment”.

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Hi @Annaosborn11 I agree with the above and want to add this: it’s physically better to know what’s coming than it is to blunder (as I did) into weight loss, thirst, exhaustion, critical dehydration, DKA, and the stress that puts on your body. It is mentally better to have joy and freedom without worry and deal with problems that come up, after they come up.

Given that you don’t have a choice about the physical part but absolutely have a choice about worry and anticipation of what people might think someday- my vote and IMO it is better to know.

Don’t try to educate everyone, you’ll end up frustrated and exhausted. You cannot control your reputation, you can control how you experience your own character.

Cheers and good luck :four_leaf_clover:

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Oh yes…if I had a dime for every time I was asked if the keto, or Atkins or this vitamin or that supplement would help, I’d be rich. I went to school to be a dietitian as well…not practicing now, however, fully educated on diabetes and diet. And…now my son was recently diagnosed and the same questions came about. We also had early testing and saw it all coming. Although stressful watching it develop, I was grateful for having the info. As his numbers changed, we were able to react long before DKA.
Hang in there. It’s ok to feel frustrated by people and their comments…I try to be kind and educate…not always easy though!

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Testing once a month is worse than useless. It is dangerous and can easily lead to diabetes related complications. For good control one must test before each meal, take the appropriate does FOR THAT MEAL ONLY, and test again two hours later to confirm proper dosage. Write EVERYTHING down!

This person is not a T1D yet - only testing positive for antibodies - no insulin doses or control needed at this point - simply watching for changes to occur. Please read original post thoroughly.