Tight control is HARD! Why do it?

Because blindness, dialysis, amputation, and heart disease is harder!

Results from the DCCT and the longitudinal followup EDIC study:

Note, the DCCT study design defined tight control as A1c 6% or less (NOT how the ADA defines "tight control"). The actual results of the study did not meet this original goal -- the actual A1c achieved was on average 7%. The decreased risk factors cited below are for the 7% group, not participants that achieved 6%.

This 6% figure has caused some controversy here on TuD. While it is simply my own opinion -- so please don't read anything more into it than that -- the 6% figure is important because that's what the study designers thought was a proper target to shoot for (being close to "normal"), and presumably believed was beneficial. As such, it's my view that, despite the study failing to achieve 6%, there is merit nonetheless in assuming the risk reductions seen at 7% will be even greater at 6% (or even lower).

DCCT Study Findings

  • Intensive blood glucose control reduces risk of eye disease: 76% reduced risk
  • kidney disease: 50% reduced risk
  • nerve disease: 60% reduced risk

EDIC Study Findings

  • Intensive blood glucose control reduces risk of any cardiovascular disease event: 42% reduced risk
  • nonfatal heart attack, stroke, or death from cardiovascular causes: 57% reduced risk

Some other epidemiological stats important to diabetics:

  • Diabetic kidney disease is the most common cause of kidney failure in the United States. After having diabetes for 15 years, one-third of people with type 1 diabetes develop kidney disease.
  • According to the National Eye Institute, one of the National Institutes of Health, as many as 24,000 people with diabetes lose their sight each year.
  • Neuropathy is a major contributing factor in foot and leg amputations among people with diabetes.

This is all nicely summarized here. I found this looking around for results from EDIC. Enjoy!

Excellent reminder that there is a reason we do intensive therapy. Just want to clarify, that although the goal for the intensive therapy group was normal A1c of 6.0 or less, that wasn't achieved in the DCCT. As stated in the 1993 DCCT study (New England Journal of Medicine), "Although 44 percent of the patients receiving intensive therapy achieved the goal of a glycosylated hemoglobin value of 6.05 percent or less at least once during the study, less than 5 percent maintained an average value in this range." The average A1c that was achieved was slightly above 7.0.

This is what I read as well. And the DCCT participants had a crazy amount of support compared to the average person, from what I've read.

An apocryphal story says that when the DCCT results were announced, Dr. Bernstein stood up to an ovation since the study vindicated his arguments that normalized blood sugars minimized/healed complications. These days it is hard to believe it, but this relationship between high blood sugars and complications/outcomes become essentially lost knowledge. Eliot Joslin believed it, but with the creation of the ADA mid century, right up to 199 mainstream medicine essentially rejected the "hypothesis." And until the DCCT, that is what we had. Joslin had observations, and those strongly suggested the hypothesis, but it was shown to be causal until the 1993 study. So from mid century to 1993, the medical establishment essentially kept patients away from hypos and DKA as those were the "risks" and didn't really care about control that much.

And with the emergence of the dietary stupidity that advises us to eat a carb based diet it is not surprising that it has been very difficult to demonstrate tight control. I have come to believe that tight control requires meticulous attention to diet and some level of carb restriction. It is very difficult to eat high levels of carbs while on insulin and achieve an A1c of 6% of less. Thus it is not surprising that the DCCT had trouble and that subsequent studies have run into trouble. The ACCORD actually found that trying to achieve tight control on a high carb diet had worse outcomes as patients were overmedicated.

Sadly, most of us see doctors who still believe that 7% is a wonderful goal and that if you take insulin and only have an A1c of 7-9% that you are doing "ok." For a while, the AACE recommended that patients get their A1c as close to normal as possible while still minimizing risks of hypos. The AACE has backed off, I don't know why. My current endo supports my goal of a normalized blood sugar as long as I properly manage the hypo risks, but she is pretty unique.

ps. The DCCT primarily studied intensive therapy (pump or MDI) as opposed to conventional therapy using 1-2 daily injections of mix. More info is available at the original paper.

The main reason I prefer aiming more tightly is that I feel better, sharper, more on the ball, stronger and less concerned about what my BG is because I *know* what it is! I also think that it's actually less work to be where I am than when every BG test was like a slot machine. High, low, in the middle? Hmmmm....

I am not a huge fan of the DCCT as a source because their targets seem to have been a tick higher than what I've been able to do. I'd like to see someone study me or someone who is like me (I've seen several who kick my butt, that Helmut guy, 4.7 or whatever? although I understand that his methodology involves eating steak and lettuce which, while I eat both of those, I'm not gonna do...)

It's hard for me to understand the reluctance of the medical community to fully embrace the main lesson of the DCCT and its follow-up study EDIC. Lower blood glucose is better by any substantive measure.

It would make sense that the medical and dietary establishment, in light of these conclusive study findings, would see that carb intolerance is the central nature of diabetes. While we diabetics may each live with a different carb intolerance threshold, we indeed all experience big BG rises when we eat carbs.

Dietitians still, to this very day, insist that we should eat 45%-65% of our daily calories as carbs. Yet they don't see any trouble with just adding mega-doses of insulin to "cover" the carbs. If you've any doubt about this, just Google, "Hope Warshaw," a registered dietitian, author, and often featured speaker at medical professional meetings.

I had this low carb discussion/disagreement with my doctor and dietitian at my last endocrinologist appointment. The doctor respected my low-carb lifestyle (at least she wasn't about to criticize it with the voluminous BG data from my pump, meter, and CGM that showed very good control) yet the dietitian voiced her concern that I needed more carbs in my diet. I think she felt professionally compelled to warn me about the error of my ways!

I told the doctor and the dietitian that I thought that 50 years from now the medical profession will be aghast at the carb-crazy advice that they endorse today. I hope that 50 years from now, this controversy about carb limitation for diabetics will simply be an interesting footnote due to the discovery of a cure!

One thing I don't understand at all is why people with diabetes are told it's okay to eat carbs, but people with celiac are told to strictly avoid gluten forever. Both conditions are very similar in that eating carbs or gluten causes long-term damage. Why are these conditions handled so differently?

You know, Jen, Terry I just had a very cynical thought in response to this question: I think a lot of the denial many PWD's have is due to the long-term nature of possible complications. When you see a high number on the meter (or don't test and see it at all!) and yet you don't feel sick, it's hard to conceptualize that many such high numbers can add up to an amputated foot or something twenty years down the road. That's just human nature that we think the future is never going to come.

But is it possible that doctors who should know better have that same myopic thinking? Given the state of the health care system (at least in the U.S.) I think it's highly likely they do. It would be pretty hard to sue someone twenty years down the road. And there is next to no emphasis on prevention or healthy living. Hmmm.

I guess by "apocryphal story" you mean "untrue story"? Because very little of what you've said here about the history of the DCCT, ADA, or Joslin or Bernstein is true. To be fair this all happened before you had diabetes, but as someone who lived through it, this simply isn't accurate.

First of all, it was very widely believed everywhere in the diabetes treatment community that good blood sugar control was important to reducing the development of complications. That didn't start with the DCCT (and certainly didn't start with Bernstein). But there was no medical PROOF of this, and that is why the DCCT was important, because it provided irrefutable proof of that long-held belief. Very few (if any) doctors were surprised by the results of the DCCT - and in fact they welcomed them because it gave them a stronger argument to give their patients for why blood sugar control was important.

By the way I heard about the DCCT when it was recruiting volunteers and tried to volunteer to be a participant in DCCT at Joslin in Boston, but was not included because I failed to meet one of the criteria.

The denial might be from the long-term nature of complications but it's also because their doctors tell them "you're fine!" C. 2003 or thereabouts, before I started working out, I'd had a pretty lengthy lapse in going to the doc, b/c Walgreens was awesome at getting my rx's refilled and I just blew the doctor off for a long time. She fired me so I found a new doc, went in and "scored" a 5.8. He was pleased w/ that and gave a <7% pin that some PharmRep had given them to pass out and sort of laughed that they didn't have a <6% pin. When my doc said "your A1C was 6.2 [although it was 5.2...], that's pretty good recently" I was like either she didn't read my chart, a possibility, or she was simply oblivious. Either way, I was not happy and am shopping around. We'll see how that goes. I think that most people are inclined to place more faith in their doctors than in their own data which patients with diabetes can be uniquely equipped to have access to actual data that, given the impossibility of logging *everything*, is likely better than anything the doctor will get.

I think its important to notice more carefully what Mellita pointed out, that your initial statement is not accurate. You said "Note, DCCT defines tight control as A1c 6% or less (NOT how the ADA defines "tight control")."

In fact, the DCCT tight control group achieved an average A1c of about 7.0 (average BG 155 mg/dl). This study was not about a group achieving an A1c of 6.0, because at the time that was an unachievable goal even with the "crazy amount of support" they were given. Remember this was in the time of NPH or early pump, and glucose meters but no CGM.

Now I suspect that if the study were done today that tighter goals could be achieved. And it should absolutely be the goal of everyone with diabetes to get their A1c as low as reasonably possible, without otherwise compromising the quality of their life. But I am bothered by your implication that if you fail to get your A1c under 6, then you are destined to a life of kidney disease, blindness and neuropathy. The data we have today simply don't back that up.

I hear you about the DCCT, and too would like to see a study on "maniacal control" (many of us here :-)) in addition to "intensive therapy".

Still, the actual results of the DCCT, where participants on average achieved A1c's of 7%, produced some dramatic (and that's not exaggerating) results. 76% reduction in eye complications? At 7%?

That's enough for me to feel pretty damn motivated to get it under 6%. What will be the reduction in risk? Who knows? Regardless, it's more than rational to believe it will be more than 76%!

While there's quite a bit of merit in many of the criticisms of the health care industry about the standards they set for this condition, and what doctors both know, and say to their patients, I think it important to point out that doctors have a very hard job in all this too.

Keep in mind that most diabetics are non-compliant. They are given all sorts of direction, advice, and even commandments at times from their medical team, and they just don't follow it. Those of us here are, in fact, a pretty rarified group among the entire diabetic community. Most T2's treat their disease like high blood pressure -- take a pill, it's under control.

The ugly fact about that treatment modality is, "it" is not under control. At all. simply measuring preprandial fasting BG and 3 hour postprandial, popping some pills a few times a day, has neither the data resolution, nor the detail about the inputs (food, actual insulin meeting those carbs) to really say anything diagnostic about a person's control, and therefore risk.

BUT! This is predominantly not Physician's fault. Keep in mind they are dealing all day long with T2's that just won't comply with truly effective treatment. By that I'm talking about what I'm doing, a T2... Pump and CGM, treatment parameters staying between 70-140 24/7, getting A1c under 6%.

It's doable, and it's what every diabetic should be directed to do, and striving for. But, as the discussion title says, "It's HARD!"

So, when 9 out of 10 patients aren't willing to do what's necessary, doctor's shift to getting them do what they will to minimize harm. The rest of us, willing to go to the wall, get lost in the noise. That's human nature.

A couple years ago, I read about a study which found that diabetics with A1cs in the 5s had less risk of kidney disease than those with higher A1cs but still had an elevated risk level. Even with the tightest control we can't pretend that we are "safe".

My first CDE at the Joslin told me when I was first diagnosed that when she started working there about 20 years before, the waiting room was full of people with seeing eye dogs. It was now pretty rare. Some of that good news is the result of better treatments for retinopathy, etc. but some is also a result of the introduction of intensive therapy and more people achieving an A1c of 7.

Maurie

I'm maybe 50% in your camp on this Jen (and I hate to disagree with you -- you're someone I've come to really like here in my short tenure :-))

I've found in my 51 years that denial is a particularly ineffective way to get people to do things. Sure, some are well-disciplined. But reality is, not that many. Most people aren't willing to face denying themselves simple pleasures as a way of life, for the rest of their lives.

So, when a diabetic -- newly DX'd or experienced -- doesn't comply with admonitions to cut carbs for the rest of their life to something that puts a big burden on their quality of life, due in large part to the delayed-effect that Zoe talks about (same problem with smokers, BTW), they go into denial about the need to deny themselves things.

That describes most T2s.

A combination of, "here's a treatment mode that will get you normal, and you do need to make some changes to your diet that you should stick to, but you can indulge now and then, and still be in control" works much more successfully.

As I've shouted here again and again, I believe the best, leading edge tech and treatments should be available to all diabetics from the days they're diagnosed, if they're willing to do the work to use it effectively.

CGMs and pumps for people like me. Pills and amputations for those unwilling to do the work. It should be their choice.

After all, we don't tell people who've lost a leg in a car accident that a pair of crutches is "good enough", when there are really cool, high-tech prostheses available that can enable them to run in the Olympics (think of that South African "Blade Runner" guy [and don't think about what's he's now famous for]). You want that, insurance will pay for it.

Well, I want to have my health and life fully restored too. I can not do that -- no one can, really -- without a CGM and pump. I should (and luckily do) have it.

I was thinking of "denial" more in the sense of "denial of reality" than denying oneself treats. But I actually don't think either form of denial is healthy. I don't think living feeling constantly deprived is pleasant or likely to work long term. But I also think the new philosophy Jen mentions of "eat anything you want and take insulin for it, don't deny yourself anything your little heart desires" is misguided and characteristic of an indulgent society. They don't mention the possibility of weight gain and developing insulin resistance, especially as you age.

So how do I reconcile those two things - denial not being healthy and indulgence worse? By a shift in how you think about it. If I think, I've got to have a poor boring salad for lunch, poor me, I will munch on iceberg lettuce and hothouse tomatoes getting angrier with every bite and may even go out and get a burrito with everything at my local taqueria. If, on the other hand, my fridge is filled with spring greens, cucumbers, jicama,fresh mozzerella and jars of marinated mushrooms and artichokes and my cabinet with balsamic vinegar and walnut oil and sunflower seeds, I'll love my salad and feel satisfied with my 11 grams of carbs as well as the stable blood sugars two hours later. All in how you look at it.

Hmm, I can see your point ... But I also think that people with diabetes were told for years that they would have to live with a restricted diet for the rest of their lives. It's only been in the past 10-15 years that people have begun to be told that they don't need to worry so much about what they eat. In years past, people accepted it without much problem—or at least, if they didn't, they did so knowing that they were ignoring/harming their health. These days people do it and THINK they are being healthy by eating a huge bowl of fruit instead of a piece of cake, even though the fruit may contain twice as many carbohydrates. There are also many conditions where people are told they need to change their diet for the rest of their lives (celiac, food allergies, etc.), and maybe it has partly to do with the way in which conditions are diagnosed and/or the immediate effects of not following such advice.

Many (not all) of us with Type 1 were diagnosed in a somewhat dramatic fashion (emergency visit, hospital stay, etc.) and are faced with lifestyle changes from the start (testing, shots, carb counting, etc.), and I think would be receptive at that point to being told that they have to change their diets forever. If nothing else, the memory of DKA and how they felt before diagnosis would be a strong incentive for what could happen if they disregard medical advice.

I think Type 2 may be different. From what I read here, it sounds like a lot of people are just told they have diabetes, given some pills, meet with a dietitian who just tells them to not change much, and that's it. Maybe doctors need to be a bit more blunt and tell people that if they continue eating high carb foods they will likely experience complications in ten or twenty years. Not what people want to here, but is it even brought up at all these days? Or do people just sort of learn about complications on their own?

I agree with you about the technology. I think that's a huge issue everywhere, not only with diabetes. I'm visually impaired and have spent thousands of dollars of my own money on technology that is not covered by ANY insurance or government health plan (because it's not considered "health" even though my visual limitations were caused by disease). I also work in the field and it's heartbreaking when you show someone a tool that would enable them to read print again and they get so excited, and then have to tell them that it costs $4,000 and there's no funding available unless they fall into some very narrow categories.

I wonder if everyone had CGMs, if this would change people's attitudes about food a bit. I don't have one (and I'm looking at having to pay out of pocket for one when the Vibe gets here), but I think seeing the change in blood sugar caused by certain foods will change the way I eat. It's easy to eat something and just not test afterwards, but if you're wearing a CGM that alarms if your blood sugar exceeds a certain level, I would imagine that would be a bit harder to just ignore without going in and changing the settings.

Hi Shawnmarie. You are correct that the only way to deal with Celiac is to totally avoid gluten. Btw, Type 1 and Celiac often occur together; I'm an example of that fact.

I think you're right about the medication aspect making a difference, IF someone is taking insulin. But, on the other hand people with diabetes are told it's okay to have high blood sugar after meals, and a high A1c, and so on. So insulin is not really treating the problem, it's just preventing even more massive spikes.

I've been to at least two Type 1 diabetes conferences. The first time I didn't even know about low carb and I ate the sandwiches on huge Kaiser buns along with everyone else. Two hours later, I tested and actually said aloud, "Ugh, I'm 16 (which is around 300)!" The girl next to me said, "Yeah, I'm 18, too." The second time was a few years later where I stuck to mostly low carb stuff. Everyone else ate a ton of carbs which were on offer. After, when the group I was with all tested, I was the only one who wasn't high.

If people can eat a high carb diet and maintain good blood sugars, then that's great. But it seems to me that high blood sugars are just accepted by most people as "normal" after meals.

I should probably clarify that when I'm talking "low carb" I'm not talking about Bernstein level. I don't think most people would ever follow that, including me. I should probably say more "moderate carb." Say, around 100 grams a day. I know to people on this site that is not really low carb, but to most people it is. Even 100 grams a day is way less than what it seems most people are advised to eat. I don't think people should be told to stop eating carbs altogether (if that is even possible) or to go on a super restrictive diet, but being told they will have to limit carbs for the rest of their lives would be way better than being told they can just eat anything and take insulin to cover it.

It's not only that patients are non-compliant. As you said, it's freakin' HARD to get really good control. Despite the work I put in, I have yet to maintain an A1c below 7.0%, not even to mention lower. Now, while that may have something to do with my infusion set and allergy troubles, there are many people who have hard-to-control diabetes for any number of reasons, including the fact that they don't even know they should be eating moderately low carb and can't get good control eating 60 grams of carbs per meal.

I think it's a difficult balance. Do you lower the A1c target to truly normal and then have people like me (or hopefully former me!) get so frustrated that we just give up? Or do you keep it higher sot hat more people can achieve "good control" and feel successful? Or do you lower it moderately (like maybe to 6.5%), work intensively with people who are not achieving that goal to find out why (which is currently not really done, I don't think), and advise that patients eat a moderately low carb diet? My vote is for the last choice. :)