Why a "mere blogger" knows more about new treatments that her doctor

It all comes down to time. I have it, my busy endocrinologist does not.

So I read weekly newsletters like "Diabetes in Control", I scan health news posted in online edition of the NYtimes and on the Google News site every day, and when I see something about a new diabetes treatment or drug, I check the newsgroups and bulletin boards to see what people who are using the drug have to say.

That's why I'd noticed, months before my endocrinologist did, that the people reporting the biggest weight loss successes with Byetta were those who had been having problems controlling their eating (a problem I don't have.)

When she suggested that I try Byetta 6 months ago, I'd pointed out that I don't eat very much and certainly didn't want to lose weight and that the people who were happiest with Byetta were those who were eating a lot less now that they were taking the drug. Just yesterday at my appointment, when I asked the endo how her patients were doing on Byetta, she said, "I'm finding it's working best for the people who had problems with overeating."

When Levemir came out in the U.S., I looked to see what people in the U.K. who had been using it for years had to say. I also read the prescribing information very carefully. As a result I knew that it was not the 24 hour basal that the manufacturers would like you to believe it is. And, for that matter, that neither is Lantus for people taking type 1 rather than type 2 sized doses!

When I was looking to improve my control last year and checked out Avandia, I read the prescribing information, and then posted online asking people about their experiences with it. I got an earful! Dozens of people reported that it had caused edema and weight gain. I read an article online about an eye doctor who gave a speech at a conference linking Avandia to macular edema almost a YEAR before that news finally made it to mainstream medical news organs. I gave it a try, but when I swelled up like a tic and started having daily headaches, I ditched it immediately, though my family doctor who had prescribed it insisted that his other patients who took it had no problem with edema!

Most recently, when I was looking at Amaryl I checked out the whole story behind the increased incidence of heart attacks in people taking sulonylurea drugs. This is cited in a bold print warning in the Amaryl prescribing information. When I mentioned this to my endocrinologist, she told me she was not aware that there was a link between sulfonylureas and increased heart attacks nor did she know about the warning in the Amaryl prescribing information.

These are just a few examples of how the educated patient, who has the time to study up on their condition may be way ahead of the busy doctor whose continuing education consists of occasional drug-company sponsored junkets.

Fortunately, I'm not alone in doing this. Scan alt.support.diabetes via Google Groups, or read http://www.diabetes-book.com/cgi-bin/yabb2/YaBB.pl and you'll find lots of other people with diabetes doing the same thing. That's because with diabetes, the consequences of settling for average care instead of the right care can be early death, lost limbs, dead kidneys, and blindness.

If busy professionals would have more respect for the experience and knowledge of educated patients, the rest of their patients would probably be better off!

Study: Exercise decreases Insulin Resistance but does not improve blood sugar control

The "study of the day" reported by Diabtes in Control involved two groups of people with "mild" type 2 diabetes. One group exercised, the other exercised and took a drug, Acarbose, which is sold in the U.S. as Precose.

What it found was this: while exercise reduced insulin resistance in the group using exercise alone, as measured by various laboratory techniques, it made no difference in blood sugar control as measured by the A1c. Adding Acarbose improved both IR and blood sugar control.

Lost in the way the article is presented is the more important message here: that the usual advice to exercise your way out of diabetes is not going to do much for you unless you cut way down on your carb intake. I took Acarbose for years and as long as I had some second phase insulin response left, it pretty much acted like cutting 15 grams of carb out of a meal. Unfortunately, as my second phase weakened, Acarbose started to simply postpone the blood sugar spike, not eliminate it. This sounds great, but it's main side effect which is socially catastrophic gas for anyone who eats anything near a "normal" amount of carbs, make it unlikely to ever gain much public acceptance.

But getting back to the study: Since 99.5% of doctors will tell anyone with diabetes that if they only exercised more they'd get better control, this is an extremely important finding. Reducing your Insulin Resistance in a way that makes lab instruments happy but doesn't lower A1c is not going to do much for your health.

My feeling has long been that exercise is oversold as a diabetes remedy. My blood sugar deteriorated significantly during the year when I went to the gym almost every day. I ended up with pretty muscles, lousy blood sugar and repetitive stress injury in my feet from the treadmill which eventually made it harder to do any exercise at all.

There certainly are reasons to do exercise--improving strength, endurance, and cardiac capacity--but exercise is not the miracle cure for diabetes people think it is. Studies also show it doesn't do much for obesity unless it accompanies a rigid, long-term diet.

Try telling that to the people selling gym memberships!