Misdiagnosed

One of the best things about being connected to the Diabetes Online Community (aka the DOC) is that they stumble across things that I might not stumble across and are then nice enough to share it. Which means that I learn more, read more, appreciate more than I would if left to my own devices.

Like yesterday. When my friend Scott shared a link to a position paper posted on a blog I had never heard of before.

The paper was about adults diagnosed with Type 1 diabetes. As in they were diagnosed when they were adults. Not when they were kids as T1's alter ego, Juvenile diabetes, would suggest.

The paper talked about the high number of adults who are misdiagnosed with having Type 2 diabetes. Who are put on exercise regimes and diet restrictions and pills and who are then judged when things don't improve. They not only don't improve but they get worse.

People have ended up in comas because of being misdiagnosed.

People have died.

I was misdiagnosed. It was November 1st, 2002. It was probably about 10am at the time and I was sitting in my doctor's office. She took one look at my blood sugar of 30+ and told me I had Type 2. She told me I would be put on a pill, that I would have to watch what I ate and that I would be fine. She sent me for bloodwork and sent me home.

She called me a few hours later to say that I had to go to the hospital immediately because I had diabetic ketoacidosis. According to her I still had Type 2 diabetes.

The endocrinologist who appeared in my hospital room promptly announced that I had Type 1 diabetes, not Type 2, and transferred me to the Intensive Care Unit where I stayed for four days.

I was misdiagnosed but it didn't even take 12 hours for someone to figure it out. I was on insulin in no time and feeling better by the minute as my blood sugar went down for the first time in...weeks? I never really think much of that day other than to use it in presentations when I tell my diagnosis story.

Then I read that blog post yesterday. I read other people's stories, one after the other. I read about people who were judged for not being able to get their blood sugar down on their own. People who didn't find out for months and months what the problem really was and who came dangerously close to death before they do.

We. Don't. Make. Insulin.

No amount of encouragement, berating, pill prescriptions and exercise regimes will help.

Without insulin. We. Will. Die.

I was down to a vial and a half of insulin in my fridge on the weekend. Enough to get me through almost two weeks as long as I didn't gorge on baklava for breakfast. Enough to certainly survive one statutory holiday. And yet a tiny part of me was freaked out at how low my supply was.

What. If. Something. Happens?

I have come to expect that people who have no experience with something, be it Type 1 diabetes, disabilities or whatever, will often have preconceived notions that can be quite far off from reality. I do my best to help clear those up but I try not to judge people for not knowing when there is really no way they could have known.

Reading about how many people with Type 1 have been misdiagnosed by doctors (doctors!!) frightens me. Type 1, in the big scheme of medical conditions, is not a very hard one to diagnose. Take a blood test. Check for insulin sensitivity. Ask a few questions. Bingo.

And yet when you combine the fact that many more adults are being diagnosed with Type 2 AND Type 1 has that 'juvenile' label attached to it and suddenly it's a problem.

From the sounds of it, it's a big one.