Now and again, THCB stands back and takes a look at actual medical care delivery.  Today we have a new contributor, Pamela E. Mack, who explains some of the difficulties she has had being a very involved patient with diabetes, but one who may not be suitable to the "bullying" that I have described as integral to disease management.

I want to tell my own story, to illustrate the limitations of the standard approaches to diabetes pushed by the health care system. I have found a way of managing my diabetes that works wonderfully for me. I don’t think it would work for most people. But what bothers me is that the people who might benefit from this approach will probably never learn about it. I wish that doctors and diabetes educators had a way of offering patients choices to help them find the approach that works best for them. If you want to skip my personal story and go straight to learning about the approach I use, go to What they don’t tell you about Diabetes. Jenny tells it better than I can, and has done some fascinating research on the history of the current system of American Diabetes Association guidelines (those of us who follow the very tight control approach think those guidelines are misleading at best and probably harmful).

I was 48 when I was diagnosed with diabetes, about 60 pounds overweight but somewhat fit (I walked regularly). I didn’t know much about diabetes because there is none in my family, but I had had a 10 lb. baby and one random high blood sugar (I was tested when I went to the local urgent care center with a yeast infection). So I kept insisting to my doctor that I be tested for diabetes every year, though my fasting blood glucose numbers were in the 90s and he would tell me not to worry. Finally I did have a high fasting blood glucose test result and my doctor told me I had diabetes. He told me to lose weight by eating less and suggested I start testing 3 or 4 times a week at different times. He said I would need medication if my numbers kept getting worse.

I was in shock for a few days and then started looking for information on the internet. I quickly learned of Gretchen Becker’s excellent book: The First Year: Type 2 Diabetes, which helped me particularly with my feelings that the diabetes was my fault. I didn’t want to go on a diet because I had struggled for years to get out of a selfpunishing attitude towards food (I have some issues about that left over from childhood abuse).

I decided that rather than trying to lose weight, I would make my first goal to control my blood glucose. I came upon someone on the internet who used the line "My body, my science experiment," and I knew I had found the approach that would work for me. I decided to use a set of goals I found on the Internet. I was convinced by the argument that the best way to avoid complications was to get blood glucose down into the normal range. My goals were A1c under 6, fasting blood glucose under 110, blood glucose one hour after eating under 140, bg two hours after eating under 120. (These recommendations are only for people who are not prone to hypos.)

These are much tighter goals than those recommended by the American Diabetes Association. The justification for such tight goals comes from studies of at what A1c level complication rates begin to rise–actually 5.5 for heart disease. To meet these goals I did not follow any standard diet, but rather tested 7 times a day (first thing in the morning and one and two hours after every meal) and adjusted my food choices according to the results. If my bg was higher than my goals, I didn’t eat that food again or ate it in smaller quantity the next time. I found I had to limit my diet to about 75-100 grams of carbohydrate a day. I try to use carbohydrates with lower glycemic index, but for me glycemic index doesn’t make that much difference, low g.i. carbohydrates still send my blood glucose high if I’m not careful about the total amount of carbohydrate I eat.

I didn’t count calories or restrict how much I ate, although obviously my choices were much restricted. If I was hungry I ate a snack, usually of nuts or cheese. What was amazing was how much less hungry I was. My blood glucose must have been going high after meals for years, and when it came back down a couple of hours later I felt very hungry. Controlling my blood glucose but not restricting how much I ate, I lost five pounds a month for six months. Despite the doctors who say "just lose weight," losing weight didn’t make my diabetes easier to control—I had to eat just as carefully to keep my bg under control.

I knew I would be doing this for the rest of my life, so I looked for ways not feel deprived. For example, as an occasional treat I can eat cheesecake for dessert, and it won’t send my bg high. I try to be careful about saturated fat but I have always had excellent cholesterol numbers (HDL higher than triglycerides in U.S. numbers), so I don’t worry too much. I’m clearly an atypical diabetic but all I get from the medical establishment is the assumption that all type 2 diabetics are the same.

One thing I discovered is that if I craved something that I thought would spike my bg, I could prevent the spike by going for a long walk. I began to think of exercise as a way of burning up the glucose my body was having trouble handling, and upped the intensity by walking more steep hills in my neighborhood. Then six months after diagnosis I tried running. I loved it, much to my surprise, but I started to have hip problems, so I switched to bicycling. Knowing that to help my bg it was important to exercise regularly, I bought a good bicycle and set myself a training goal—to ride a 60 mile organized ride four months later. I studied carefully how to fuel myself—at one point I took a 7 hour bike ride testing my bg every 30 minutes. I found I needed to eat more carbohydrates during but not after a long ride (that is unusual–most people do need to eat more after).

I did the 60 mile bike ride without pushing myself, so I got more ambitious. I rode a 100 mile organized ride two months after that, and then decided my next goal would be a sprint (short) triathlon about a year after I started biking. I’m currently (February) biking for at least an hour at least three times a week, swimming for over an hour in a masters workout twice a week, and running one and a half miles three times a week (building up very slowly to avoid joint problems). In seven months of more intense exercise I have lost another 25 pounds. Five pounds more and I won’t be overweight any more. My latest A1c was 5.4.

Diabetics like to quote the line that the best way to a long and healthy life is to be diagnosed with a chronic disease and take good care of it. I am healthier than I have been in years, more selfconfident, and having a lot of fun turning myself into an athlete. At the center of that for me are two things. One is the sense of control I get from treating my body as a science experiment and testing my bg to see the impact of what I eat (now usually just fasting and once after each meal). The other is the idea that it is possible to control my diabetes so well that I can postpone complications, hopefully indefinitely.

The medical establishment has been unsupportive of my approach. I’ve talked to diabetes educators at two different local hospitals. One told me that she had to teach the American Diabetes Association recommendations in order to get insurance reimbursement. The other claimed to be supportive of my approach, but kept insisting to me that complications were inevitable. (Nobody had done studies of complication rates in diabetics who kept their A1c under 6.) My new doctor was reluctant to prescribe me so many test strips, saying that sounded awfully compulsive. Her nurse kept asking weren’t my fingers sore (no). My doctor has become more supportive–she can’t argue with the results.

On Feb. 2, The Health Care Blog included a mention of the importance of: "making sure that diabetics and other chronically ill patients actually get the routine care and routine bullying that they require to stay healthier." The point is correct—many doctors don’t push regular monitoring and care of diabetics. I get an A1c every 3 months because I buy a home test—my doctor is happy with annual testing. But even at their best, doctors can only respond to routine changes on an every three month basis. I can do a lot more by adjusting my behavior according to my blood glucose several times a day. I realize that a lot of patients aren’t interested in being so proactive. But some, at least, are going to respond better to being offered control of their own health instead of bullying.

I’ve seen people who already have complications who respond to the very tight control approach, for example one person on the internet who says she has neuropathy pain whenever her bg goes about 140. But I think it is particularly valuable for people like me who got diagnosed before they had complications. Whether or not we succeed in putting off complications until we are 95 years old, we surely are putting them off for years and reducing our future health care costs. Yet many health plans refuse to pay for so many test strips. Doctors necessarily focus on sicker people, but it is discouraging not to get support. I haven’t been told yet that I don’t really have diabetes, but I’m expecting it. I do–it takes steady hard work in managing food and exercise to keep my bg in the normal range.

There aren’t any one-size fits all solutions for diabetes, even at a given stage. Any formal program has to push the recommendations of the American Diabetes Association, which are harmfully out of date in their goals and their blanket opposition to low carbohydrate diets. Research is mostly on medication. So the system ends up discouraging those people who might be able to take control of their diabetes and get healthy.