Johner, first, hang in there. The learning curve is enormous. I’ve been T1 for over 55 years, since I was eleven, and I’m still learning about myself, about the equipment, always adjusting. It’s the nature of diabetes, no matter whether you’re T1 or T2.
Second, I highly doubt you’re T1 based on the fact that through diet you have brought your blood glucose back close to normal. If I am without insulin for as little as 45 minutes, my blood glucose starts to go off the chart. For instance, I have worn and insulin pump for over twenty years and, recently, when I went to insert a new cannula, the part of the pump that goes into your body and stays there to deliver the insulin, like a teensy hose, it was not inserted correctly and, within an hour, my blood glucose went from 107 to over 200. It took me about five hours to realize the problem was that the cannula was OUTSIDE my body. By that time, my blood glucose was hitting close to the 400 range and that was without eating anything. There’s no way I could live without insulin. I’d be in a diabetic coma in less than a day without insulin, probably. Of course, only a C-peptide test will tell you for sure. (A silly fact about going on Medicare is that it requires every diabetic to have a C-peptide test before covering diabetes-related charges. Crazy for people like me who’ve been diabetic for most of my life. Taxpayers are footing this ridiculous policy. Anyway . . . .)
Third, I understand your fear of undoing all the good work by going off the diet you’ve constructed for yourself. But I encourage you to try some of the ideas others have suggested. It’s the only way you learn how your body will react. What might work for me might not work for you. For instance, another online diabetes support website and newsletter has a columnist who suggests people eat lots of nuts for snacks. But for me, too many nuts causes my blood glucose to rise because fats interfere with my body’s ability to absorb insulin. So, what works for that guy would not work for me. Another example of learning as you go what works for you: I am fine with apricot or strawberry jam–all fruit, of course, but blueberry causes a much higher rise in my blood glucose. If you go slow and record your body’s reaction, you will learn what happens. There really is no other way.
One other piece of advice: read the labels on food and measure. Even after all these decades as T1, I still use a scale to weigh my food when I’m at home. When I’m out, I can pretty much guesstimate fairly accurately what I’m eating using some of the tools dietitians will give you, i.e. the palm of your hand is about 3 oz. of protein, your thumb is about the size of a tablespoon. Try to be very careful because, as you’re finding out, you get very invested in trying to maintain blood glucose. But, again, you have to try, you have to experiment. Otherwise, what qualify of life will you have? I hear that’s your frustration, besides with the poor quality of care the PCP has provided.
Finally, I too urge you to find a good endocrinologist. A diabetologist is best. I know you have to wait until you get a referral from your PCP, but, another thing you’ll learn, you have to be your own advocate. it may be in the PCP’s best interest to keep you as a patient, but that doesn’t mean that’s best for you.
Hang in there. Just like life in general, diabetes is a journey.