Participants Point of View
Week 27 by Brenda (@tmana)
For most people with diabetes, if you asked us to condense our lives into a single number, that number would be our most recent HbA1c. Except perhaps for our most recent (or current) blood glucose number (and trending arrows, if you’re lucky enough to have a CGM), there’s no single number that is so fraught with emotion. We are dictated goals that we are expected to reach by any means necessary, with little practical assistance — resulting for many in unacceptable and dangerous lows, in diets that are difficult — if not impossible — to follow in modern life, and combinations of oral medications that may be as toxic to us as the conditions they were designed to treat. Some would say, we’re set up for failure.
Others would say it is our genes, and our pancreati, that have failed us.
There is little question that a glycosylated hemoglobin level significantly above the range in non-diabetic persons suggests persistently elevated blood glucose levels over the reference period of the reading. Lower readings are not nearly as straightforward — but that may also be because of how the HbA1c has been presented to us. When I was first diagnosed with diabetes, I understood the A1c to be something like the portrait of Dorian Gray: it would record my highs (including any spikes I did not capture on my glucometer) and ignore any lows. In short, the ultimate “Are you a ‘good’ patient or a ‘bad’ patient?” number. Understanding that the HbA1c entails the lows as well as the highs means that it can be, to some degree, manipulated by anyone willing to dose extra insulin and take the risk of dangerous, possibly fatal, lows.
If indeed we were to see glycosylated hemoglobin levels as indicative only of our spikes and persistent highs, then it would be an adequate snapshot of longer-term control. Add to that the 2-3 week range of the serum fructosamine level, and we have a rough “arrow” of where our long-term blood glucose levels have been, and where they are going. (Of course, the readings and analysis possible with a CGM that has been worn 24/7 for the same period would be a lot more indicative and precise, but this opportunity is not available to most people with Type 2 or gestational diabetes.)
That said, what isa reasonable expectation for our periodic HbA1c readings? I might as well ask, what is a reasonable range of minute-to-minute blood glucose readings — or as some of our participants have asked, “What’s the standard deviation (or the variance)?” Our patient-experts suggest, not without cause, that the danger of diabetes comes as much from wild swings in blood glucose levels as from persistently elevated blood glucose levels. We navigate a daily path between the Scylla of DKA and the Charybdis of fatal hypoglycemia. The currents are often rough and rocky, and subject to change with the moods of the gods (and if you remember your Greek mythology, the gods were pretty moody). If we consider the number of people who have achieved their 25-year and 50-year Joslin medals, and the (lack of) technology they had to manage blood glucose excursions, we must perceive that the official targets of the American Diabetes Association (HbA1c < 7.0%, estimated average blood glucose (eAG) 154 mg/dl), the Association of Certified Diabetes Educators (HbA1c < 7.0%), and the American Association of Clinical Endocrinologists (HbA1c < 6.5%, eAG 140 mg/dl) may be artificially low. (For comparison, Stacey Divone recently posted a pictureof a 30-year-old Type 1 self-care handbook for children suggesting an A1c goal of < 10.0%, which corresponds to an eAG of 240 mg/dl.) As a comparison, current standards of care diagnose diabetes at an HbA1c of 6.0%, or eAG 126 mg/dl. Is that — like the current 115/75 mm Hg diagnosis of “prehypertension” with treatment guidelines — artificially low, designed to enrich the pockets of Big Pharma? (Again for comparison, Stacey’s 1981 manual stated that the HbA1c levels of people without diabetes ranged from 5% — eAG 100 mg/dl — to 7.0%.)
On the other hand, there have been studiessuggesting that the microvascular damage behind many complications of diabetes begins any time our blood glucose levels spike above 140 mg/dl — some suggest that damage begins even as low as 100 mg/dl (HbA1c = 5%) — suggesting that an HbA1c goal of even 6.0% may be too high from the standpoint of avoiding complications of diabetes.
So, what is the answer? Is there an answer? Our participants suggest that if we are to accept the idea of an HbA1c goal, it needs to be set based on us as individuals: if you’re subject to wild swings regardless of diet, exercise, and corrected basal insulin delivery, you may not be able to achieve the HbA1c levels set as goals by the ADA or AACE. On the other hand, if you have not considered food — specific foods, types of food, eating patterns — as a component of your care regime, it may be possible to adjust your diet to reduce the variances in your blood glucose levels and at the same time, lower your HbA1c. (This is the component of self-care most often denied by the “I just have to bolus for it” crowd.) The flip side of that argument is one of social participation: do we have, and can we expect ourselves to have, sufficient willpower to notpartake of food at an event if we’re not certain it will fit within our normal limitations and meal plans, or if our blood glucose levels are too high at a given moment? Can we forego the “drinks out with the boys” that builds the informal networks at many places of business without hindering our careers? (Can we go and just not eat or drink? How can we justify that if we’re not willing to “come out of the insulin closet”? Should we come out of the closet to everybody at our places of business — rather than just a select few confidants?) And when we started strong out of the gate, how do we get back on the trail when we’ve strayed off it because of the demands of work, family, friends, and technology? Are we willing to reinforce, or perpetuate, the limited-diet plan of diabetes management when “diabetes diets” are, and need be, so different from patient to patient?
At the end of our hour’s chat, and the following night’s BlogTalkRadio program, we have synthesized the following recommendations for our care teams, and for researchers to consider:
- A low (or “within ADA or AACE target”) HbA1c is not, nor should it be, the only indication of success in controlling or managing diabetes
- If enough data points are available, analyzing the variance of a patient’s highs and lows may help in minimizing blood glucose excursions
- Hypoglycemic excursions need to be controlled before attempting tighter control of all excursions and lowering of acceptable “high” readings
- The goal for a patient’s HbA1c needs to take into consideration the amplitude of a patient’s glycemic excursions, the tools he has available (diet, insulin, meters, pumps and CGMs, other oral and injectable drugs) to minimize those excursions, and his willingness (and/or ability) to use those tools to bring his blood glucose levels in closer alignment with the non-diabetic “normal”
- Based on historical data and current research, one can make cogent arguments for current A1c guidelines to be either too high or too low.
- One cannot expect a patient to put the rest of his life (work, family, friends, organizations) on hold for the express purpose of managing his diabetes.
- Duration-of-life goals should not sacrifice quality-of-life
- Quality-of-life goals need to take into account both the short and long terms
- Psychological support may be needed to create and keep realistic goals
- The diabetes online community (DOC) is a source of emotional and psychological support that is available 24 hours a day, 7 days a week
- Most participants trust the DOC to be supportive without being judgmental
- Most participants who share their current blood glucose numbers and HbA1c results online are honest about their numbers and believe other participants to be equally honest
- Most participants will offer suggestions based on personal real-life experience, qualified by their lack of professional certifications and the understanding that what works for them may not work for others
- The mix of pharmaceuticals prescribed, in conjunction with a patient’s current/pre-existing conditions and complications, may affect both his HbA1c and the advisability of lowering it