Question from Farmington, New York, USA:

My son was recently thought to have type 1 diabetes, but then, after being observed for 24 hours at a local children’s hospital, his endocrinologist is just as confused as we are. He’s not your typical type 1, in that his laboratory tests don’t match what his blood sugars are. For example, he had a two hour postprandial, after eating pancakes, eggs, and milk of which he didn’t eat more than 20% of his meal, venipuncture reading of 165 mg/dl [9.2 mmol/L]. Upon further testing, they did a two hour Glucose Tolerance Test (GTT) and got 55 mg/dl [3.1 mmol/L], 109 mg/dl [6.1 mmol/L] and 139 mg/dl [7.7 mmol/L]. That same day, they drew a serum insulin level and got less than 2. I was told by the endocrinologist that less than 2 is not normal, that normal levels are 6 to 27.

At home, we get anywhere from 120s to 160s mg/dl [6.7 to 9.3 mmol/L] with a few readings that were 193 mg/dl [10.7 mmol/L], 216 mg/dl [12.0 mmol/L] and HIGH. What I don’t understand is, while we were at the hospital, they first put him on a pediatric diabetic diet and still got 124 mg/dl [6.9 mmol/L], which isn’t bad at all, but also isn’t normal, based on the normal range of 80 to 110 mg/dl [4.4 to 6.1 mmol/L] I was given.

I showed the endocrinologist all the readings that we were getting at home and he had received all the laboratory results. He’s confused because with almost no insulin production is my son’s body, he should’ve been well into 400s mg/dl [22.2 mmol/L]. The blood work is a send out and goes to a pretty reputable facility. He’s thinking the results are a mistake, but, come on, how often does a mistake like that happen? I’m thinking his pancreas is just malfunctioning, kind of like a car engine… when he has sugar, it jump starts his pancreas, but it slowly produces insulin, giving us the abnormal results but not the high. And overnight, when he doesn’t eat from about 7 p.m. to 7 a.m., the insulin production, though small as it is, will eventually bring the glucose back to normal.

My son had an antibody test done to see if there are antibodies in his system that are attacking his pancreas thus causing the insulin levels to be abnormal. They won’t diagnose him with type 1 yet because he isn’t over the 200 mg/dl [11.1 mmol/L] mark for his blood sugars, but they haven’t dismissed it because his blood sugars are abnormal. Basically, I was told this may be a waiting game. We are to wait until they get high and that eventually that’s what will happen. Is his endocrinologist right? He seemed like a sincere, but concerned guy. He’s dismissing the insulin level because he doesn’t believe the result. As for me, I’m totally confused. I’m going through so many emotions about what’s going on with my son. I’m worried, scared, depressed, angry, confused…. what’s going on?