Know Your Numbers, Outlive Your Diabetes

by James S. Hirsch

Some years ago, as part of a routine physical exam, my endocrinologist instructed me to provide a 24-hour urine sample. I don’t recall that he told me why, but I assumed it was important. Then a funny thing happened – no one told me the results. So after about two months, I called the office and asked one of the assistants.

To my surprise, we had a problem.

The test showed trace amounts of albumin in my urine. I had no idea what that meant, and the assistant didn’t say much, except to note that I needed to speak with the doctor. (Thanks.) Fortunately, my brother is a diabetologist, so I promptly called him; and he explained that microalbumin is a protein, and its presence in urine indicates early damage to the kidneys. No need to panic, he said: if caught early and treated, the problem can be reversed.

I went on an ACE inhibitor, moved to a new city, got a new endo. Subsequent urine tests revealed no microalbumin, and my current doctor believes the original result was a false positive. (Improved testing has also eliminated the need for 24-hour urine samples.)

The episode is a reminder why patients will benefit from a new book, “Know Your Numbers, Outlive Your Diabetes,” which provides a wonderful framework for tracking your care. It describes five essential tests that patients need to take on an ongoing basis – what the exams measure, what the numbers mean, and what to do if the results indicate a problem.

The book is co-written by Dr. Richard Jackson, Director of Outreach at the Joslin Clinic and Senior Investigator in the Research Division at the Center, and Amy Tenderich, a journalist who, after developing type 1 diabetes in 2003, launched a successful diabetes blog (www.DiabetesMine.com). Part of the book’s strength is the blending of authoritative medical information with the real-world experience of living with the disease. The authors, for example, emphasize the need for patients to be realistic in their care – eschewing the Platonic ideal of glycemic perfection that some authors advocate. Breaking new ground in a diabetes book isn’t easy. As the epidemic has spiraled, dozens of “how-to” books have been published in recent years – how to maintain normal blood sugars, how to eat properly, how to care for your eyes, your feet, and your heart; how to exercise or, for that matter, how not to exercise and still maintain good control.

“Know Your Numbers, Outlive Your Diabetes” is also a how-to book. In straight-forward prose, the last two-thirds cover the usual bases (exercise, food, medications, hypos, complications, travel tips, etc.) It’s a good primer for newcomers to diabetes and a solid, if overly long, refresher for diabetic veterans. But the book’s real value is its first 100 pages, in which the authors isolate the five key areas, or “health factors,” that patients need to monitor to ensure a long and full life. My guess is that most patients know about some if not all of these areas, but the book lays them out in a clear, accessible fashion. You should know your numbers for these five areas:

• A1c, which measures average blood sugar levels over a three-month period.

• Blood pressure, which predicts cardiovascular risk and should be taken at least every six months.

• Lipids, which refer to different types of fat in your blood and have been linked to increased risk of heart disease and stroke; should be tested annually.

• Microalbumin, which, as noted, refers to protein in the urine and is a sign of kidney damage; should be tested annually.

• Eye exams, which screen for retinopathy, or changes on the retina; should be tested annually.

Dr. Jackson and Tenderich recommend creating a “Diabetes Health Account,” in which you add or subtract “money” based on your scores. But the real value of the chart, at least initially, is not what the numbers say but simply that you know what they are. I have to admit that while I have my blood pressure taken once a quarter and my lipids tested once a year, I have no idea what my actual results are. I trust that my doctor would tell me if they were too high, but not every patient, myself included, should be that trusting.

The good news is that if any of these tests reveal problems, patients can do something about it – as long as the problem is caught early enough. In this sense, the authors not only create a coherent framework for your health but also deliver a message of empowerment. The burden falls to the patient to act and act now.

The book is actually written for patients with type 2 diabetes, though most of the material is relevant to all types of diabetes, and type 1 patients will appreciate the overview of insulins, pens, and pumps. The text also might have been better shorter – fewer “real people” sidebars and less repetitive. In describing rewards for good outcomes, the authors write on page 55: “Rewards shouldn’t be edible.” On page 72, they write: “Remember: rewards shouldn’t be edible.” Yes, we remembered.

I’m not exactly sure how you “outlive your diabetes,” as the title says. I suspect that my diabetes will end on the day that I end. But I salute the authors’ intentions: they don’t want your diabetes to cut your life short. Knowing your numbers – and having this book – will help you do that.