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[IP] endocrinologists

This posting was made by, Klausen a person with IDDM, and I thought it was

Whenever I visit a specialist, the doctor always wants to know what
endocrinologist is managing (or, more politely, 'following') my blood sugar,
to which I reply, "Me," which always evokes exclamations of surprise and
concern that I am not being better supervised. But what good is a doctor in
managing a diabetic's blood sugar?

First, the actual techniques of dosing the various types of insulin can be
learned by a fifth grader in about a week, so the doctor's 'expertise' is
wasted there for the experienced patient. But even in this area, the doctor,
unless he or she has type 1 diabetes, is more of a hindrance than a help,
because it is impossible to understand how difficult blood sugar control is
unless you have the disease. Since doctors are trained to think they know
best and yet in fact have no understanding or appreciation of the complexity
of blood sugar management in the real world, their contribution to this
effort can be positively dangerous.

Second, blood sugar management depends on the particular patient's
lifestyle, and that is something the patient understands infinitely better
than any doctor. If I am living at home writing a novel while in the
constant presence of other people to guard against my having severe
hypoglycemia, I can control the blood sugar level quite well, since it is no
great inconvenience to be constantly testing blood sugar, injecting insulin,
and counting calories, and no great danger to be skirting the edge of
hypoglycemia. But if I am working in the outside world under intense
pressure in a job requiring a lot of travel, involving unexpected
challenges, as well as great time constraints, such that the boss might
require me to work through lunch or such that I cannot afford to lose a half
an hour dealing with hypoglycemia, then blood sugar control will be very
different. Given these variations according to how I am living, the
management of the disease can only be done by me, since only I know how
insulin treatment interacts with the particular kind of work and schedule I

Third, only I can know how I feel with different styles of blood sugar
management, and my doctor can only have a dim, second-hand awaremess of this
reality. If approaching, experiencing, and coming out of hypoglycemia takes
up three hours of my time with exhaustion, confusion, and recouperation,
then I can't afford to keep the blood sugar low in the way that a person who
can go in and out of that process in 20 minutes could. If I feel shakey,
confused, and tired with a near-normal blood sugar, then that is not normal
for me. If I have diminished awareness of the onset of low blood sugar, that
is another factor to consider. Recently I find that I become intolerably
sleeply if my blood sugar sinks from high to normal too quickly, so this is
a new idiosyncratic factor in my physiology, which I understand better than
any doctor treating me, so I have to be the one to manage the blood sugar
around this phenomenon.

Fourth, there is the psychological dimension. Different people handle stress
in different ways, and while some people can stand the stress of living
every minute of their lives on the edge of a hypoglycemic coma, others
cannot. Some people are depressed and frightened about severe hypoglycemic
episodes; others are not. Depending on how the patient subjectively reacts
to low or normal blood sugar will determine how control has to be managed,
and this the patient alone understands, not the doctor.

Fifth, there is the philosophical dimension. How I want to balance my desire
to enjoy a normal, productive lifestyle now, against my interest in avoiding
complications in the future by keeping blood sugar perpetually on the brink
of hypoglycemia, is a profoundly personal, existential choice. Some people
would rather live twenty enjoyable, productive, free and spontaneous years
with high blood sugar even if that meant dying at the end of that period
from complications, while others are content to live in diabetic misery,
testing, injecting, calculating, fainting all day and half the night, so
that they can die of complications after thirty rather than after just
twenty years. How to deal with the possibility that the patient may be
genetically protected against complications and so may be just ruining his
life unnecessarily by intensive blood sugar management, or how to respond to
the chance that the disease may be cured or treatment may be improved in the
future so that complications will not arise no matter what the blood sugar
control has been up to that point, are also purely subjective decisions
which the patient alone can make, not his or her doctor.

So for all these reasons, the legitimate role of the endocrinologist in
'managing' the patient's blood sugar is much smaller than the medical
profession likes to think.
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