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Vicki Abbott, a 65-year-old medical transcriptionist from Portland, Oregon, has taken the idea of tight diabetes control to heart. She adheres to a control regimen that is almost militaristic in its method, and her goal is perfect blood glucose.
"I test ten times a day," she says. "I need to, because my blood glucose is pretty labile. I test when I wake up, before all meals, two hours after each meal, before and after exercise, and at bedtime. If I am doing more than my usual half-hour daily walk, I’ll test then too."
Abbott writes down everything she eats and the insulin she takes for each meal, as well as her blood-glucose results before and after each meal. She keeps records of every blood-glucose test and waits exactly five hours between each meal—she likes to be at baseline before she eats her next meal and takes her next shot.
In addition, Abbott never snacks between meals. She has almost the same thing for breakfast and lunch every day. After five years, she knows how much insulin to take for those meals and can thus avoid the complex calculations that go into her dinnertime preparation.
At dinner, Abbott weighs all the ingredients of her meal on a food scale. She figures out carbohydrate, fiber and protein counts for the food as well as its glycemic index. She then puts the information into a computer program a friend wrote for her. The program computes all the information and tells her how much insulin she needs for the meal, based on her current blood-glucose level. Abbott also adheres to a very low-carbohydrate diet, avoiding most grains, fruits and root vegetables. She does not eat pasta, bread or rice.
Is All This Worth It?
The question inevitably arises: Is it really worth it? Are the sacrifices required of a person with diabetes seeking perfect control worth the rewards?
Alan Marcus, FACP, MD, president of South Orange County Endocrinology in Laguna Hills, California, believes that kind of rigor is unnecessary—and possibly negative.
"In order to get an A1C of 7%, you only need to get your blood [glucose] in the target range 49 percent of the time," explains Marcus. "You don’t have to be perfect—you have to be decent."
Being "just okay" is an achievable target, Marcus adds. "Being perfect is not!" He argues that aiming for perfect normalcy is an impossible task and creates frustration.
"It also negates the achievement of getting close."
Marcus, along with many diabetes educators, believes that the strain of attempting perfection may be worse than the effects of living with somewhat elevated glucose levels.
"Having diabetes is like having a part-time job—or a full-time job—in addition to the rest of your life," he says. "If diabetes interferes with your ability to live life, you are doing something really wrong. Having diabetes is not a prison sentence. People should be able to manage it and live well."
Perfect Control Not Only Possible But Necessary
Others, such as Richard K. Bernstein, MD, FACE, FACN, CWS, are convinced that perfect control is not only possible but necessary for a long and healthy life.
Bernstein, who has had type 1 diabetes for more than 50 years, is the low-carb guru of the diabetes community. He recommends an extremely rigorous low-carbohydrate diet for both type 1s and 2s, intensive exercise and frequent glucose monitoring. In addition, he believes that it is both important and easy for people with diabetes to get their A1Cs down into the 4% range—an expectation that most doctors consider unrealistic or impossible. Bernstein recommends that his patients keep their blood glucose within the normal range all the time.
"[People with diabetes] are entitled to the same blood glucose as anyone else," he asserts. "It’s so easy to achieve. It’s much harder to live with roller coasters."
A Quality-of-Life Issue
While no one would argue that tight control is physically unhealthy, there is some debate as to whether tight control adds to or detracts from an individual’s quality of life. Each study, it seems, draws a different conclusion.
Alan Jacobson, MD, the principal investigator of the Diabetes Control and Complications Trial (DCCT) site at the Joslin Diabetes Center in Boston, Massachusetts, and a professor of psychiatry at Harvard University, reports that in the DCCT trials, "intensive control did not demonstrably help or hurt people’s quality of life."
On the other hand, Patrick Lustman, PhD, professor of psychology at Washington University School of Medicine in St. Louis and principal investigator of two National Institutes of Health-supported trials on depression in diabetes, reports different findings.
"Higher A1Cs in people with diabetes were associated with an increased likelihood of being depressed," he says.
Ken Watkins, PhD, who has type 1 diabetes and is an assistant professor in the Department of Health Promotion, Education and Behavior in the School of Public Health at the University of South Carolina, studies the effects of diabetes self- management on quality of life. He finds that blood-glucose control itself may not be the determining factor in quality-of-life outcomes.
"In some studies, blood-glucose control is associated with quality of life, and sometimes it isn’t," he observes. "And sometimes there is an inverse relationship between quality of life and blood-glucose control."
Watkins believes quality of life is related to how people with diabetes perceive the burden of managing the disease.
"The more it is perceived as a burden, the worse the quality of life is," he explains. "If people feel like doing the things they need to do to manage diabetes interferes with their personal and social functioning, they are less likely to do them and more likely to feel burdened."
Watkins concludes that one of the keys to enhancing quality of life might be to reduce the perception that diabetes is a "burden."
"People who perceive diabetes as a serious burden have a lower quality of life. Those who look at it as a challenge or an opportunity for self-development do not see it as burdensome."
What’s the Right Path?
When Anne Short was diagnosed with type 2 diabetes, she went out and bought two books. Each one told her the same thing—that she should get her blood glucose under control.
But one book told her to eat a high-carbohydrate diet based on the food pyramid, and another told her to restrict her carbohydrate intake. She has had heart surgery twice, suffers from gall bladder problems, and has had a stroke. Each doctor she goes to tells her to follow a different diet.
"If somebody would sit down and write out what I should eat, I would follow it," she says. "I am really worried about the complications. My biggest problem is that I really don’t know what to do."
With even the definition of tight control up for debate—the American Diabetes Association is satisfied with an A1C of less than 7%, while the American Association of Clinical Endocrinologists recommends a target A1C of 6.5% or lower—it’s no wonder that people with diabetes are confused about how to reach this elusive goal.
The fact is that the methods of achieving tight control are also subject to great debate.
Jane Seley, RN, GNP, CDEtor and nurse practitioner, believes carb counting is preferable to low-carbing. She spends much time with her patients explaining exactly how to count carbs and adjust their medications to their specific lifestyles.
"The low-carb diet leaves people feeling tired," says Seley. "Eating additional fat doesn’t serve people well. I’d prefer to be smart about carbs, spacing them throughout the day. I’d rather work with a balanced-health meal plan and work medication around it than limit the carbs."
Bernstein, however, argues that carb counting is impractical.
"Labeling laws say that companies have to be within 20 percent-more or less-of the actual content," he explains. "For something that is high in carbohydrates, that 20 percent can be the difference between a blood glucose of 100 and [a reading of] 250. If you are not using a packaged product, you could be 200 or 300 percent off. What is the size of that apple? What kind? How long was it ripening? The degree of sweetness of that apple can vary by hundreds of percents. So whatever the number in the book is, it can’t possibly be really right, and it’s not likely to be nearly right."
A Stickler for Detail
In fact, achieving tight control while eating carbs might be more difficult than simply avoiding them altogether.
Garrick Neal from Vancouver, British Columbia, has type 1 diabetes and manages to maintain tight control on a high-carbohydrate diet. His efforts, however, make even Abbott’s look rather mild. Neal has memorized the entire glycemic index—both the official version and the one that applies to his own body.
Neal also owns 10 glucose meters, which he keeps in every room of his house, his car and his golf bag. A marathon runner, Neal tests his blood glucose 12 times a day—but during allergy season, when his blood glucose tends to go out of whack, he has been known to test as many as 20 times.
Neal keeps his A1C at a respectable 5.8%, and his blood glucose is in his target range of 85-120 mg/dl 85 to 90 percent of the time.
Neal says he doesn’t really mind this routine.
"I spend about an hour and half—maybe two hours a day—actually doing something about my diabetes. It is annoying, but I’m pretty healthy otherwise."
The Insulin Pump — A Step in the Right Direction
Jerry Nairn, who has type 1 and recently went on the insulin pump, tests 8 to 12 times a day and keeps his blood glucose around 100-160 mg/dl. His recent switch to the pump has meant a lot more work for him, but he believes it is really worth the effort.
"Before—with two shots a day and urine testing—it was like trying to sculpt while wearing mittens," says Nairn. "Now the tools enable me to be much more precise—but it does require a lot more work."
Nairn, who runs an A1C of around 7.3%, estimates that he spends about three hours a day dealing with his diabetes.
Because they often still make some of their own insulin, it may be easier for people with type 2 to control their diabetes with less rigor than it is for those with type 1.
Judith Overfield, a 48-year-old with type 2 was diagnosed in January 1997. Diagnosed with an A1C of 13%, she has been able to bring it down to within the 6% range. She has a relatively relaxed attitude toward her diabetes and eats a wide variety of foods—but has cut down her portion size considerably since diagnosis. She follows a standard American Diabetes Association diet and allows herself the occasional indulgence.
"On Saturday night, I sit back with a good book and a 20-ounce bottle of regular Pepsi."
At diagnosis, Overfield saw her doctor every week until her blood glucose stabilized. She now sees him a few times a year. In the morning, she is satisfied with a blood glucose of 125, and in the evenings a 140 will please her. She feels okay with these numbers, though she is on high doses of insulin and Glucophage as well as a series of medications for a variety of other conditions. Because she has lymphedema in her legs and is extremely overweight, her mobility is limited and she does not exercise.
Education Is the Key
So is it possible to attain perfect or near-perfect control of diabetes while maintaining a regular lifestyle? Though Neal and Abbott are content with their regimens, for most people a similar routine would place unreasonable demands on their time and energy.
Jacobson feels it is possible to attain tight control and lead a normal lifestyle.
"Quality of life is not a static state," he says. "If the time you are spending on diabetes is detracting from your life, you can make adjustments to improve the quality of your life. If ignoring your diabetes is detracting from your life, then the quality of your life will obviously be improved if you spend some time managing it."
The amount of energy one dedicates to control is an entirely personal decision. However, you can encourage control in yourself and others in several ways.
The first step is to educate yourself about all the different methods out there and then select one that works best for your lifestyle. Provide yourself with as many treatment options as possible. In fact, just having a full understanding of diabetes minimizes the perception of the condition as a burden.
Watkins believes it is also helpful when the diabetes care provider is not "too hard-nosed" and "works gradually with a person to shape disease understanding until it is more accurate".
And with better control—according to many people with diabetes who seek tight control—comes more freedom.
"[Having diabetes] takes up a lot of time that I would like to not have to spend on it," Jerry Nairn says, "but I don’t resent it too much. I feel like it is a way to take control of my life. The pluses of doing what I am doing outweigh the minuses. I have no complications, a more flexible life and good health. I feel good."
Clinical adviser’s note: In this article, Anne Short’s comments cry out for attention: "If somebody would sit down and write out what I should eat, I would follow it," and "My biggest problem is that I really don’t know what to do."
If you are in this situation, please ask your physician for a referral to a certified diabetes educator (CDE) who is a registered dietitian. An individualized assessment and a meal plan from an experienced dietitian should help you with specific concerns. In addition, a referral to a CDE who is a registered nurse could help with other aspects of your diabetes self-care.
If your physician is not aware of any local CDEs, call your local hospital to ask about diabetes education services, consult your local American Diabetes Association or check the Web site of the American Association of Diabetes Educators (www.aadenet.org).
We’d like to hear from you later about your experience consulting with a CDE.
It might be the current wonderful hot weather here that raised a red flag as I read about Garrick Neal’s 10 glucose meters that he keeps stowed in handy places such as his car. All current blood-glucose testing systems are readily damaged by extremes of temperature. If you have been storing test strips where they may have been exposed to extremes of temperature (check the product insert for the safe temperature range), you should perform a quality check with control solution. In addition, check the outdates (expiration dates) of the test strips that you use less frequently.