July 26, 2001
Question from Dallas, Texas, USA:
I have had severe low glucose incidents for the past 15 years. I do not get much of a warning signal before I start having symptoms of severe low sugar such as confusion (One time at the gym I didn’t know what year it was, how old I was, or where I was, but my friend gave me sugar, I ‘woke up’, and she had to tell me about it. I didn’t even realize I was missing time.), inability to talk (I was at the grocery store and felt bad, I couldn’t talk, and I ended up seizing that time.), fast heart rate (I was walking and my heart just starting pounding. I thought I was imagining it then I went to get groceries and don’t remember the drive. I seized in the parking lot two miles from home.), extreme sleepiness (followed by fainting, seizure, and coma), anger (I was on the phone and again couldn’t talk, and I could hear the fear in my friend’s voice, and I got angry. I can’t remember more, but I seized.) to name a few. I have been to three neurologists to be sure it isn’t a form of epilepsy, and they don’t believe it is. I have also seized in my sleep. Two emergency room nurses have told me I was going to end up killing myself if I didn’t learn how to manage my sugar.
The times I end up seizing, I don’t get enough forewarning. By the time I realize what is happening, I can’t think very well. I seized while on the phone with someone, and they called an ambulance. I cried while the EMT gave me glucose IV, but, then ‘woke up’, I didn’t even remember I had cried. I remember the EMT looking at me saying, “Wow, it really was your glucose.” I wake up with glucose very fast, but without it, it takes hours before I can respond.
Since then, I have been self testing. I stay between 60-90 mg/dl [3.3-5 mmol/L] the vast majority of the time up to 120 mg/dl [6.7 mmol/L] after eating. I have tested 38 mg/dl [2.1 mmol/L] and felt fine as well as 45 mg/dl [2.5 mmol/L]. I ate (potato soup) and hours later I was 52 mg/dl [2.9 mmol/L], and I felt fine. The highest blood sugar I had in a month was 158 mg/dl [8.8 mmol/L].
I feel just fine the vast majority of the time and were it not for the strange behavior, passing out, seizure and coma I would never give my glucose a second thought. I have the glucose emergency kit because I can not feel the glucose when it is down. Can people (as myself) get hypoglycemia unawareness without having diabetes? My doctor said that was what she thought it was and that I was really just used to it being low and didn’t feel it as a result. Could I really just have a low seizure threshold?
Another interesting observation is the further I get away from an incident the better my glucose readings get regardless of food intake. They are getting higher and more stable.
I would suggest you speak with your physician about this. If you are not comfortable with her, I would get a second opinion. If you were to get a second opinion, you would end up having a variety of tests to sort this out. I am afraid I cannot help further with what sounds like a severe situation interfering with your quality of life.
[Editor’s comment: Unless you are already under the care of an endocrinologist, you should ask your doctor for a referral. And if you are, please review the tests that have already been done, and ask if others could also be done.