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!
July 14, 2006
July 12, 2006
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!
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!
July 11, 2006
Who's She anyway? Who Cares what a Blogger thinks?
It would have been nice if the journalist had identified me correctly as the author of the "What they Don't Tell You about Diabetes" web site and a long-term poster on alt.support.diabetes, not as "a blogger".
I've got an 8 year long record of posting about diabetes-related topics online, and my web site (based on a ridiculous numbers of hours of combing through medical research papers) comes out very high on a lot of Google searches for diabetes-related topics. But like most journalists, she probably things blogs are "in" and web sites and newsgroups are "so old fashioned."
Unfortunately, the net result of the way she presented what I told her is that the reader, quite reasonably says, "Who cares what she thinks." I'd say the same thing myself.
The whole episode is pretty silly. I started the blog about two weeks ago just as an experiment after putting out hundreds of thousands of words on alt.support.diabetes over the years and immediately I end up, complete with awful photograph, in Business Week. This is not really a thrill, since the whole point of talking with the magazine writer was to see if maybe an important point could be gotten across.
Sadly, not a single substantive thing I had to say made it into the article. Too bad she didn't at least quote me as saying that shooting insulin is painless and that an ad campaign that stresses the awfulness of insulin injections will only make life harder for people with Type 2 diabetes who are unnecessarily scared of something that is No Big Deal.
Immunizations hurt. Blood draws hurt. Insulin shots are painless.
End of message!
I've got an 8 year long record of posting about diabetes-related topics online, and my web site (based on a ridiculous numbers of hours of combing through medical research papers) comes out very high on a lot of Google searches for diabetes-related topics. But like most journalists, she probably things blogs are "in" and web sites and newsgroups are "so old fashioned."
Unfortunately, the net result of the way she presented what I told her is that the reader, quite reasonably says, "Who cares what she thinks." I'd say the same thing myself.
The whole episode is pretty silly. I started the blog about two weeks ago just as an experiment after putting out hundreds of thousands of words on alt.support.diabetes over the years and immediately I end up, complete with awful photograph, in Business Week. This is not really a thrill, since the whole point of talking with the magazine writer was to see if maybe an important point could be gotten across.
Sadly, not a single substantive thing I had to say made it into the article. Too bad she didn't at least quote me as saying that shooting insulin is painless and that an ad campaign that stresses the awfulness of insulin injections will only make life harder for people with Type 2 diabetes who are unnecessarily scared of something that is No Big Deal.
Immunizations hurt. Blood draws hurt. Insulin shots are painless.
End of message!
July 10, 2006
Hitmen from Pfizer Next?
The article I mentioned below came out today, in Bu---- W--k Online Magazine and in it yours truly is the Poster Child for "people who don't want to use Exubera." Unfortunately, the interviewer didn't go so far as to actually quote what I'd said in email and a subsequent phone interview. She just boiled it down to a very generic summary, that I'd said it was hard to use and could cause lung damage.
What I'd actually told her , for anyone who cares, is that it sounded like it would be impossible to match it to meals, which is a problem with a bolus insulin. That's because the smallest dose is equivalent to 3 units (probably of Humalog) which is already too much for me , and the concentration does not, apparently, go up in a straight line fashion, so double the starting dose does not give you twice as many unit equivalents.
There's some energetic comment on the magazine's web site, quite a bit of it from employees of the company, shocked and horrified that patients aren't grateful to be spared the horror of injections.
On the plus side, the doctors quoted in the article seem (for once!) to agree with me that this is not a drug they want to give their patients.
But Pfizer is going to spend $50 million dollars a year advertising Exubera directly to customers. Prepare for the worst. If you aren't scared of needles now, you will by the time they're done with you. I wonder if Stephen King is writing their ads.
What I'd actually told her , for anyone who cares, is that it sounded like it would be impossible to match it to meals, which is a problem with a bolus insulin. That's because the smallest dose is equivalent to 3 units (probably of Humalog) which is already too much for me , and the concentration does not, apparently, go up in a straight line fashion, so double the starting dose does not give you twice as many unit equivalents.
There's some energetic comment on the magazine's web site, quite a bit of it from employees of the company, shocked and horrified that patients aren't grateful to be spared the horror of injections.
On the plus side, the doctors quoted in the article seem (for once!) to agree with me that this is not a drug they want to give their patients.
But Pfizer is going to spend $50 million dollars a year advertising Exubera directly to customers. Prepare for the worst. If you aren't scared of needles now, you will by the time they're done with you. I wonder if Stephen King is writing their ads.
July 5, 2006
A Diabetes Gene Found in Type 2 Jews
Lately I've learned that there is one gene that appears to cause both MODY-1 and a kind of Type 2 diabetes. What's important about it, is that when it's broken, it mostly affects post-meal insulin secretion, not your fasting blood sugar. That means if your defect lies in this gene, you're going to have the kind of diabetes that is tougher to diagnose because most doctors just do a fasting test.
Eventually people with this particular kind of diabetes do become fully diabetic, because the elevated postprandial blood sugars will destroy beta cells over time. But, if I am reading the research reports correctly, with this kind of diabetes you are more likely to end up with the cardiovascular complications (i.e. heart attack) which come at lower A1cs, rather than the classic, high A1c, complications of retinopathy and kidney failure.
This might sound great, except that often the first symptom that you have developed a cardiovascular diabetic complication is a fatal heart attack. It's little consolation to know that you're going to die in your 60s with no retinopathy!
The gene is HNF4-a. I originally noticed it because it both the MODY-1 gene AND it several studies have found problems with it occur with some frequency in Jewish Type 2s. It is also found frequently in Finnish type 2s and in several other ethnic groups.
The HNF4-a gene secretes a protein that switches on other genes in the pancreas and liver, and among those genes it affects are those that cause insulin secretion in response to a glucose load and those that produce aldehyde dehydrogenase, the enzyme which breaks down alcohol, and which, if you don't have it, gives you "Asian flush". It also affects prothrombin which helps your blood coagulate, and some of the genes that affect lipid production.
There are dozens of different genetic errors which can affect HNF4-a. How your diabetes will behave depends on what exactly is broken.
This is fascinating stuff and still not much reported on. It is not possible to get screening for this gene outside of studies right now, unless you have severe symptoms of MODY-1.
Just remember that the typical pattern for this kind of diabetes is that for years your post-meal blood sugars will be high--over 200 mg/dl when you eat a meal containing a normal amount of carbohydrate, while your fasting blood sugar and A1c test may be normal or only mildly elevated. If you are Jewish and suspect you might be diabetic. Make sure your doctor tests your post-meal blood sugars, not just the fasting blood sugar or you might be falsely assured you are "just fine" when you aren't.
Eventually people with this particular kind of diabetes do become fully diabetic, because the elevated postprandial blood sugars will destroy beta cells over time. But, if I am reading the research reports correctly, with this kind of diabetes you are more likely to end up with the cardiovascular complications (i.e. heart attack) which come at lower A1cs, rather than the classic, high A1c, complications of retinopathy and kidney failure.
This might sound great, except that often the first symptom that you have developed a cardiovascular diabetic complication is a fatal heart attack. It's little consolation to know that you're going to die in your 60s with no retinopathy!
The gene is HNF4-a. I originally noticed it because it both the MODY-1 gene AND it several studies have found problems with it occur with some frequency in Jewish Type 2s. It is also found frequently in Finnish type 2s and in several other ethnic groups.
The HNF4-a gene secretes a protein that switches on other genes in the pancreas and liver, and among those genes it affects are those that cause insulin secretion in response to a glucose load and those that produce aldehyde dehydrogenase, the enzyme which breaks down alcohol, and which, if you don't have it, gives you "Asian flush". It also affects prothrombin which helps your blood coagulate, and some of the genes that affect lipid production.
There are dozens of different genetic errors which can affect HNF4-a. How your diabetes will behave depends on what exactly is broken.
This is fascinating stuff and still not much reported on. It is not possible to get screening for this gene outside of studies right now, unless you have severe symptoms of MODY-1.
Just remember that the typical pattern for this kind of diabetes is that for years your post-meal blood sugars will be high--over 200 mg/dl when you eat a meal containing a normal amount of carbohydrate, while your fasting blood sugar and A1c test may be normal or only mildly elevated. If you are Jewish and suspect you might be diabetic. Make sure your doctor tests your post-meal blood sugars, not just the fasting blood sugar or you might be falsely assured you are "just fine" when you aren't.
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