what they don't say (enough)

Distortions and omissions in the diabetes discourse are a recurring theme here - usually how:

• Medical research is dominated and distorted by deep-pocketed industrial interests.
• Standards for self care and even for diagnosis are shockingly - it is no exaggeration to say fatally - inadequate.

My top-of-mind short list for the biggest diabetes information gaps* includes: 

• Diabetes is complicated. Volumes of research produce inconclusive and contradictory results.
• Diabetes-related research may be badly reported, or just plain bad.
• Evaluating research, assessing risks and benefits, and devising a working strategy for self care are not helped by the cognitive deficits, depression, and fatigue associated with blood sugar highs and lows.
• Drugs used to treat diabetes and/or its comorbidities may increase the risk of death or morbidity, including onset of diabetes itself and incidence of comorbidities. 
• Blacks, Hispanics, American Indians, and Pacific Islanders are known to be at higher risk for developing diabetes. Less discussed are the risks conferred by a range of circumstances: socioeconomic status, stress, sleep, inadequate health literacy and education, location, and exposure to plastics and to environmental pollution. These factors often trump genetics; they can increase diabetes incidence and/or worsen outcomes.
• Lack of professional consensus, balky insurance plans, and physicians' disregard of patient-reported data may all interfere with getting adequate testing supplies to carry out tight glucose control.

In short, diabetes usually cannot be resolved by, as one pharmaceutical company shamelessly touts, "simple changes."

Of course, those of us with type 2 diabetes have it "easy." Those with type 1 can match all of the above point for point (with some variation) besides being burdened with:

• fewer treatment options 
• a more painstaking, invasive, and wearying—and typically decades longer—self-care routine
• immediate and potentially mortal risks that can come from monitoring and treatment errors

Cheery thoughts for a sunny winter's day! Well, they asked.*

Good heath and good luck,

M.

* This theme was suggested by an online survey for people affected by diabetes to gather "missing" information—"gaps" in what we hear and read—to incorporate into educational videos. WEGO Health, a platform for online health activists, made donations to diabetes organizations as part of their survey promotion. I didn't know much about the sponsors at the time, but thought they were asking the right questions. Edited from the original post: 2012-02-03.

normal? really?

Here's a secret. When it comes to blood glucose levels, nobody knows what "normal" means.

As noted before, medical research finds increased incidence and risk of diabetic comorbidities or "complications" (late-stage symptoms) correlating with blood sugar levels currently deemed "pre-diabetic" or even normal.

We know this more precisely now, yet it's nothing new. The correlation of elevated blood glucose with morbidity and mortality is long-established; it informs our current definition of normal as fasting blood glucose under 100 mg/dL, although in an entirely inadequate way.

As long ago as 1980, impaired glucose tolerance (defined as blood sugar levels of 96 mg/dL or greater after a clinically-administered "challenge" of 50 g oral glucose), roughly doubled risk of death due to coronary heart disease.

In short, that level of post-challenge glucose intolerance, several points within today's "normal" fasting range, kills people. Quibbling over the additional 25 mg/dL that distinguish the "pre-diabetic" from the diabetic seems as useful as speculating over how many angels can dance on the head of a pin.

more on the risks of current norms

p.s. I was recently surprised to find an untapped prescription for glucose test strips, and was able to get it extended. I'm gathering new data on my own progress and setbacks, and should be able to publish them soon. I shall also finally incorporate into the data the standards for normoglycemia that have been tightened - obviously to my mind not enough - since my original intervention in 2003.

eye risk before diagnosis

A recent study proposes new thresholds for predicting risk of diabetic retinopathy. Using more precise gradation in the "good control" or "prediabetic" range than comparable earlier research, Massin et al. found the following correlations among 700 French volunteers studied for ten years, and were confident in proposing them as predictive:

HbA1c %	fasting plasma glucose mg/dL	predicted retinopathy
6.0	—	6.0%
—	108	8.4%
—	116	14.0%
6.5	—	14.8%

The takeaway? A difference in the range of half a percentage point of HbA1c, or 8 mg/dL of fasting plasma glucose, roughly doubles one's risk of potentially blinding retinopathy, from about one in 15 to one in 7. This risk correlation held even among subjects who did not develop diabetes, as currently defined, over the course of the study, retaining their diagnosis of "impaired fasting glucose".
The current diagnostic threshold for diabetes is an HbA1c of 6.5, the highest value in the proposed predictive model. Since the diagnostic threshold in terms of fasting blood glucose is 126 mg/dL, the remaining values are well below the threshold, in the so-called "prediabetic" range. Normoglycemic, neither diabetic nor prediabetic, is currently defined (at the upper end) as under 100 mg/dL fasting glucose or under 5.7% HbA1c.
I have two reasons for highlighting this study:

• Absent a risk of going hypoglycemic—into dangerously low blood glucose levels—there is a compelling argument for driving blood glucose levels down even if you are being told, as people in the "prediabetic" range often are, that they have "good control". A level of control that may double my risk of blindness doesn't seem to me to have much good about it. (Type 1 diabetics or others considered to be at higher risk for "going hypo" may want to check with their care team about the extent to which tight control might mitigate both short- and long-term risks.)
• If diabetes is a progressive, degenerative, debilitating, and potentially fatal disease with multiple comorbidities—it is—and if "prediabetes" is an independent mortality risk whose defining numbers successfully predict so-called "complications", or more precisely late-stage symptoms, of diabetes—it is and they do—why on Earth is the diabetic establishment still sugar-coating the reality of this disease by mucking around with terms like "prediabetes"? When will medicine catch up with science and lower the diagnostic threshold? It has done so before, and can do so again. Come the day!

source: Massin P et al. Archives of Ophthalmology, 2011: 129(2): 188-195

medicine's blind spots

When I was hospitalized with a MRSA infection, I was seeing doctors and other health specialists, not counting the ward nurses, literally by the dozen. I needed surgery on my foot to clear out an infection there, and my lungs were also infected, showing “cavitary lesions” (basically holes, which for the most part filled in again after treatment). It was not clear at first that the infections were the same, since the necessary intervening pathways—the blood and the heart—showed no infection by the time the lung damage was found. So I was talking to orthopedic surgeons, cardio and infectious specialists, pulmonologists, practitioners from my primary care team, and doubtless others I can’t remember; San Francisco General Hospital seemed to stint no resources in a multidisciplinary approach to figuring out what was wrong with me and how to fix it.
Among all these doctors, one stands out: Dr. X checked in with me regularly, often several times a day. He made sure I was getting all the information that I needed from the various teams. He explained how the thinking of the teams was progressing, where there was consensus and where uncertainty. Uniquely among the doctors, he repeatedly encouraged me to sit, stand, and walk in order to avoid the pneumonia, blood clots, and other ills that can come from being too horizontal and too passive for too long. He gave me tips on finessing a refractory pharmacy that wouldn’t provide some of my drugs in the low doses that long experience and careful observation have proven to be right for me. He followed investigative paths that others overlooked. In short, Dr. X was smart, curious, analytical, investigative, practical, empathetic, and clearly committed to the best outcomes for his patients.
So what does the infection, and what do the virtues of Dr. X, have to do with my diabetes?
The infection entered through an ulcer on my foot. For a long time, we have been considering these ulcers to be “diabetic”. Based in part on what we learned through the hospitalization, and in part on my history, and in part on the fact that I have well-advanced peripheral neuropathy that does not correspond to the level of blood glucose control I exhibit, it is probably more accurate to think of the ulcers as neuropathic, and the neuropathy itself as idiopathic—meaning we don’t know what causes it. It is possible that the diabetes may be complicating or exacerbating any neuropathic effects. The hospitalization also taught me, indirectly, that I have stance and gait issues that definitely intensify any damaging effects of the neuropathy.
Dr. X, because he seems to share them, illustrates the pervasiveness of two blind spots in medicine:

• Like my primary provider, Dr. X refers to glucose levels for good diabetic control as "normal", when in fact normoglycemia differs from "good control" levels by a significant 25 mg/dL (or so) of blood glucose: roughly half a percentage point on the Hb A1c scale. In my case, the distinction may mark the difference between my feet being ulcerous, or subject to Charcot collapses, or healthy. (To be fair to Dr. X, we never had a conversation in which I tried to pin him down on this distinction.)
• Faced with well-controlled diabetes, Dr. X. says it is “not unreasonable to question the diagnosis”.

Well, yes, it is unreasonable:
I’ve been diagnosed for seven years, and was arguably symptomatic for at least four years before that. I have measurable insulin resistance. I can readily show you that my blood glucose level will respond to a half cup of white rice dramatically differently than would that of a non-diabetic. If my blood sugar levels are allowed to rise unchecked, my weight zooms out of control and I get lethargic and stupid. My skin is fragile, will break under mild pressure, and once broken is slow to heal. I’ve lived for eleven years with spates of ulcers, including weeks of visible meat (my own) and most recently a slow-healing but consistently “clean” ulcer that suddenly erupted with a life-threatening infection. And yet the medical mind—absent a drug, absent a medical “magic bullet” that it can point to and congratulate itself on for “fixing” me—questions the diagnosis before it expresses any curiosity about what I’m doing right to keep my numbers as good as they are.
Consider two other conditions I have:

• High blood pressure—Even when sick, hospitalized and under severe stress, my blood pressure readings were virtually all normal, controlled by an ACE inhibitor.
• Dyslipidemia (unhealthy levels of blood fats, loosely termed “high cholesterol”)—This is was [at the time of this post] controlled with statins, and my current numbers are actually pretty good, in some cases better than the standard targets.

If I were to propose to a doctor, based on these numbers, that I was no longer hypertensive or dyslipidemic, or never had been, I’d be quickly corrected: I have the conditions, they’re just under control.
So why should the medical mind, seeing diabetes under control, leap toward wishing it retroactively away? Why are the precise calculations I perform each day as I manage my diet of less interest to my caregivers than finding and adjusting the correct dose of my ACE inhibitors and my statins?
This must change.

remission? cure? control?

2003/12/16 "Looks to me like you're not diabetic anymore."
—my Kaiser Permanente doctor

Wow. I didn't think they were allowed to say that. Nor that any doctor would ever say, as mine did later in the same conversation, "You've cured yourself."

As I've learned since, only the first of these statements is true. Being "not diabetic anymore" can serve, with certain caveats, as an attainable goal in diabetes control. This is what I, along with more and more lay people and professionals, call remission.
The technical term is normoglycemia: normal, or non-diabetic, levels of blood glucose (blood sugar).

I was diagnosed as a type 2 diabetic in December of 2002, after at least three frustrating years of debilitating, bloody, scary symptoms. In January, 2003, I started an aggressive, measured program of self-treatment through diet and exercise. My health improved dramatically. Over the course of a year, I lost about a hundred pounds. Since June of that year, my blood sugar readings were consistently good enough that I began to have vague hopes that I might someday hear the word "remission"—so vague that as I made up my list of things to take up with the doctor a year after my diagnosis, that question literally didn't even enter my mind.

Suddenly I was hearing "cured yourself" and "not diabetic anymore". Sweet Jesus!

2009/01/14 "[Y]ou are not diabetic, but you aren't cured of diabetes either. It could be said that you have diabetes but you're not diabetic—but that sounds too ridiculous."
—Tom Ross, of Not Medicated Yet

After years of backsliding and recurring symptoms, I've learned that the question of cure, remission, and control is more complicated than I or my doctor had thought. As Tom Ross points out, a person can have diabetes and be "not diabetic". In the same dLife.com forum discussion, "nomorecarbs" writes:

I've had blood sugars in excess of 400, today they are usually in the seventies or eighties. If I ate a loaf of bread, I'd wind up closer to 200 than 100. Am I cured? As far as I'm concerned, it's just semantics, as long as I maintain normal blood sugars, I believe I'll avoid complications. I've been diabetic for 30 years, did develop complications, they've been reversed. There are people who've been diabetic for over 50 years, and they're complications free. There are people in their 60s who are not yet diabetic, but will be and who will develop complications. It's all in how you manage your life after diagnosis. As far as I'm concerned, it's just a word, "cure". If you mean can you live a normal life expectancy with no complications, yes, diabetes can be cured. If you mean, can you eat whatever you want, stop being physically active, and still remain healthy, no, diabetes is not "curable".

The feeds and links on this page, along with some additional information on diet and exercise, are the chief online resources I used to put myself into remission, or use to this day in the hope of returning to that state.