Post medical tests: crap feeling

[Triskeliongirl]

My colleagues and doctors who are diabetologists tell me that not all type I diabetes is autoimmune. I have been tested, and I do not produce any of the known autoantibodies, but my insulin levels, both fasting, and in response to a glucose challenge are low. I participated in a research study where my insulin sensitivity was measured, and it was found to be very good. Therefore my problem is reduced insulin secretion and not a lack of sensitivity to insulin.

The reason they call me a type I versus type II, is that the underlying defect in type I is insulin undersecretion, while the underlying defect in type II is insulin insensitivity. So, I am more like a type I than a type II (i.e. I do undersecrete insulin, but while I secrete less insulin than a normal person I make more than a full blown type I). I am not a full blown type I, because I make enough insulin to maintain glucose homeostasis as long as I am not challenged with glucose and I exercise. Nevertheless, even though I control it by diet and exercise, I was told that when asked by other health care providers I should tell them I am type I, since this effects how I would be managed in an emergency situation, etc.

I also worried this means I would progress, as you do, but I have been like this for a really long time. Since it doesn't appear to be autoimmune, there is no reason to believe it will progress. For some unknown reason my body makes less insulin than it should. But, thankfully it makes enough for me to control it with diet and exercise. When I say diet, I do have to eat an extremely low carb diet (~30g/day, using my glucose monitor to choose foods).

So, there really can be an in between. How common this is, I don't know. But it is how I am. But my story explains the power of tests. Its one thing to not eat things that make you feel bad, its another to be able to use a glucose monitor to choose what is and isn't safe to eat. It just takes the emotion out of it.

p.s. they used very sensitive radioimmunoassays to quantify the insulin in my blood every 15 minutes following a gluocose challenge, this is much more sensitive than C peptide levels, but was done as part of a research protocol, so its not a standard clinical test that can be ordered.

I don't mean to hyjack this thread, but I am a type 1 diabetic, and I'm not sure I understand at all what you are saying - T1 is an autoimmune disease that results in the eventual destruction of the beta cells in the pancreas (which produce insulin, so no beta cells = no insulin). While it's possible to be a T1 still producing some insulin for a while (often referred to as the "honeymoon phase" which can last anywhere from a few months to a few years) after that point most don't produce any insulin at all.. there really isn't much room for being inbetween..

Simply being insulin deficient does not make someone a type 1.. taking insulin does not automatically make a diabetic a type 1 either. Have you had antibody testing to confirm the T1 diagnosis, or is it an assumption based on a lowish c-peptide test?