May 9, 2005

How I got here, part 2

The day I got my diagnosis was a Thursday. Had I received it from a doctor familiar with adult-onset type 1, I would have likely been advised to get treatment immediately, in case I was heading for a serious crisis. This doctor, however, was a gynecologist who also does well-woman care for healthy patients. I respected her then and still do now; it was hardly her fault that I'd come to her with a serious health problem. But as she told me herself, she wasn’t intimately familiar with diabetes. She probably pegged me as a type 2 because I was 32 years old and my fasting BG, while clearly diabetic, was nowhere near an emergency number. Type 2 ain’t no picnic, but in its early stages it’s unlikely to put people in the hospital. So instead of rushing me into treatment, she referred me to a physician in the same clinic with, she said, more diabetes experience. The new doctor, it turned out, couldn’t see me until Monday.

I spent the weekend reading everything I could find about diabetes, obsessing about the grim future that I believed awaited me, cutting back on carbs, and feeling ever more nauseated. I read enough to learn that I might indeed have type 1, and that if I did I might be in danger of a life-threatening condition called DKA. But as long as I wasn’t throwing up or exhaling breath that smelled like Juicy Fruit, I probably didn’t have it yet. (Whee, good news!) Still, I came to feel a deep conviction that whatever type I had, I desperately needed insulin as soon as possible. This was my first real lesson in listening to my body. Now all I wanted was for the doctor to take me seriously on Monday.

It didn’t start out that way. When she came into the examining room, she didn’t know why I was there, not yet having looked at my file or, apparently, spoken with the intake nurse (who also hadn’t known why I was there, again not having looked at my file). I explained the results of the blood test. I described all my symptoms, the horrible thirst, the growing nausea, the weight loss. She said she would have some blood work done. I asked about testing for ketones. The books I had read over the weekend said that evaluation of a newly diagnosed diabetic should always include a check for this poison, a byproduct of the body’s attempts to convert fat into energy, which occurs in the absence of insulin. Ketones are what lead to DKA.

Not necessary, the doctor said, adding that in the early stages of type 2 ketone production is highly unlikely. I pointed out the reasons that I might have type 1 and mentioned the nausea again. She shrugged me off. I’m ashamed to say that I was too ill and exhausted to protest further. Okay, I thought, whatever, just give me the insulin. Please.

Then I donated my blood and waited, a long long time, for the results. At least they didn’t send me home; I sat in a succession of hard plastic chairs in various waiting areas. Then they put me in another examining room, where I slumped against a countertop.

Finally, the doctor came in. “I don’t think I can let you go home today,” she said. Not go home? I made, I think, a confused babbling sound. “Your blood glucose is 395,” she continued, “and you have large ketones.” Guess she changed her mind about running that test. Ahem.

She went on to explain that I might have type 1 after all. I would need to go to a hospital, or to a diabetes center if they could find one that would take me, so that I could be placed on an immediate regimen of insulin.

Aha. NOW I was being taken seriously.


  1. Violet

    Your story sounds familiar! I went to a community clinic three times in 1.5 weeks and they kept diagnosing me with random things - stomach lining problem, sinus infection etc. Finally my boss sent me to her doctor and they immediately took a blood sample to run tests. It sounds like you did a great job expressing your concerns to your doctor, and even with a high blood sugar!


  2. Violet, that's a frightening story.

    At 15, I managed to figure out that I had diabetes (this was the fal of 1973), but I avoided telling my family, I guess because I was in a denial stage. When I finally went to the doctor, after several months of illness, I was an hour away from a DKA coma that lasted three days. At least my symptoms were plain to see, and there was no doubt in my pediatrician's mind that I had developed what was then called juvenile diabetes.

    Your story is more helpful than mine, I think, because you acted on your research and tried to do something about it. Glad you got to the doctor before you suffered any serious harm.

  3. Our son was misdiagnosed with intestinal parasites (?!) and STRESS from too much summer school (!@#$%^). He ended up presenting at the ER with serious DKA, close to coma.

    Oh, God, Violet, your story rings so many familiar bells. So many diagnosis stories are floating about these days. I'll post our someday, but it's still so painful and scary to think about.

    It was the most frightening experience of my life.

  4. Violet - um, could I ask you a question, please? I have been having a terrible thirst and sip water constantly. I don't know what my breath smells like, but my mouth tastes awful and my tongue looks horrible. I don't have nausea but I do have diarrhoea. I don't have polyuria but I have been having a kind of anorexia where I am just not into food and don't eat very much at all. Dr. tested for diabetes insipidus but lab asked for test to be repeated, Dr. refused (!). Am I blowing off ketones because of improper diet or is it a form of diabetes do you think? I appreciate that it is just your informal opinion and that I have to see a medical practitioner.