Monday, March 12, 2012

Odd ducks, indeed

I wrote to a prominent endocrinologist about the need to consider the issue of differences in glycation, and this is what he replied:

that is true not only for diabetes or medicine, it's true for everything

the advantage of a doctor with experience is that she/he should be able to
look at most of the factors in a treatment and give an opinion

there are some differences in the glycation process from person to person but in reality
they tend to be small and outliers are rare 

 OK, so I'm rare! But you already knew that anyway -- just don't eat me that way. :-)

The difficulty in being rare, and this is not the only characteristic in which I fall off the curve, is that too many doctors then don't know what to do with you. Like I said before, my (former) endo ignored an A1c of 10.7 and FBG of 302 and liver enzymes above 100 and let me slip into a coma; my current APN had all kinds of excuses when I tried to tell her that I'm a low glycator, and can't be judged according to ordinary frameworks. So I end up feeling that I am the only one who can take care of my diabetes, and heaven forbid there is ever any kind of emergency.

Another characteristic I have is that one of my cardiac enzymes is permanently elevated, and can't be used to determine whether I have had a heart attack or not. When I had the spasm in 1992, my own cardiologist took me seriously, but another one who was covering simply told me that I had a panic attack. Huh? Wakened out of a deep sleep with incredible chest pain, cold sweating, rapid heartbeat, lightheadedness, shortness of breath, and nausea, and actually passing out, is a panic attack, when I never had one before and have never had one since?

I guess the point I must be trying to make is that docs need to watch out for us odd ducks because we DO exist, and if there is any doubt, then insurance bureaucrats be damned, go ahead and order the extra tests, just to be sure. If, when I first started showing elevated FBGs, an OGTT had been done, it would probably have shown that I was indeed developing diabetes, even though my A1c was low (4.8). It may or may not have made any difference in my treatment, but could have lifted a lot of worry and distress off my shoulders.

Medicine has been called an art and a science, but I'm concerned that all the emphasis on Evidence Based Medicine is robbing doctors of the chance to practice the art!


  1. I get a little annoyed with the "it doesn't happen very often" line from doctors. I think there are more people out there that this stuff happens to but doctors don't want to admit it or they just haven't met them before. At least with the internet, people can discover each other and teach some doctors a lesson. But yes, you need to watch out for yourself.

  2. I agree. We are all odd ducks. Cheers! Joanne