Meanness in the Management of Diabetics


#1

Throughout my 52 years with type 1 diabetes, I have found a disposition to unnecessary meanness in the treatment of the disease. When I was first diagnosed, doctors at the renowned Joslin Clinic in Boston would forbid patients to use any of the new artificial sweeteners or diet soft drinks, since these would “just keep the taste for sweet things alive,” even though this is now known not to be a problem. There were many medical journal articles published in which you could literally hear the authors shouting at you about how foolish it was to think that you could just increase the insulin dose and eat high carbohydrate items like cake or ice cream, and yet today that is standard practice. Similarly, strict blood sugar control is often insisted upon for patient groups for whom it may cause more harm than benefit, such as type 2 patients who were found to have a higher death rate from strict control than without it in the Accord Study and other investigations, or for people with dangerous hypoglycemia unawareness, or for those who were diagnosed so long ago that strict control was not possible for the first 20 or 30 years they had the disease, so now, because of hyperglycemic memory, they are automatically going to develop further complications over time regardless of their present blood sugar levels. There is also the constant mistreatment that occurs at countless office visits, where a doctor who has zero understanding of the difficulties in managing the disease blames the patient for achieving less than perfect numbers.

Perhaps the same phenomenon is operative in modern western medicine as occurs with witchdoctors studied in the undeveloped world, who are gentle with patients who are curable, but viciously reject and condemn those who are incurable. Incurable disease turns the patient into the embodiment of illness and death, and no healthy person likes to be reminded of the inevitable decline of the body. The incurable patient also defies medicine, showing its inadequacies.

I have read countless journal articles discussing hyperglycemic memory, and after finding that in patients having it, complications will continue to develop automatically no matter what their blood sugar now is, they draw the conclusion of how important it is to put the patient through the rigors of strict control from the very outset of the disease to prevent hyperglycemic memory from coming into operation, but there is never a word about the fact that older patients with hyperglycemic memory should relax about strict control. Not only do older patients have less time to live in which complications can develop, but their fate is pre-determined, so what is the use of punishing themselves with strict control, which can lead to hypoglycemic episodes causing social disruption, accidents too serious for an old person to recover from, or even death?

Consider this excerpt from S. Venugopal, “Hyperglycemic Memory and Its Long Term Effects in Diabetes,” Biomedical Research, S354-S361 (2016):

“Impaired fasting glucose and impaired glucose tolerance predisposes to development of vascular complications and the hyperglycemia that develops as a consequence of poor metabolic control, at the early stages of diabetes releases excess superoxide radicals that impairs the mitochondria . Advanced glycation end products and elevated RAGE expression activates a series of signal at the cellular level that increases the risk of microvascular and macrovascular complications. The metabolic memory established in the initial phase cannot be reversed by good glycemic control in the later stages of the disease by therapeutic measures. Hence a severe intensive treatment in the early stages of IFG/IGT after suitable diagnosis is essential to prevent the progression to diabetic state and the metabolic disturbances which develop further in the course of the disease.”

If the mechanism of spontaneous further damage “cannot be reversed by good glycemic control in the later stages of the disease by therapeutic measures,” then why not lighten up on the patient? Instead, all we hear about is “a severe intensive treatment in the early stages.”


#2

I’m sorry you’ve had such negative experiences. I’ve definitely seen endocrinologists that did not understand how to manage the disease, but overall my experience with endocrinologists has not been THAT negative. I’d probably never use the word mean to describe them, but I might use the terms dismissive or inattentive. I’d say that ER doctors are the least educated and least willing to listen. People with insulin-dependent diabetes should avoid the hospital like the plague.

It’s unfortunate that your perception of diabetes and experiences with the medical profession have cast such a shadow on your life. I’ve read many of your posts on here. I can tell that you’re intelligent and well-educated. It appears that the anxiety induced by the risk of complications has had a profound impact on your life.

I agree that it might be better for you to not aim for an intense treatment if you’re going to continue feeling this level of anxiety and anger about the disease. I think life for PWDs is this delicate balance where we try our best to be healthy, but we realize that we must allow for the joys in life too. If that means that we’re not always in perfect range and we shave a year off of our lives… at least we got the opportunity to truly live while we were alive.


#3

#4

Ditto. After 53 years T1D, with some complications but stable, I still manage to live to the fullest, and expect to enjoy many more years to come.

I don’t agree with the idea of meanness in diabetes management. Every day I do what is my best FOR THAT DAY.


#5

Perhaps. However, the undefined term here is “later stages” - at what point does this process truly become irreversible. Dr. Richard K. Bernstein, for example, was, by his own account, well on the way to an early death with many complications already advancing, yet, by aiming for and achieving “normal blood sugars” he managed to reverse all the serious complications and has been healthy into his eighties. Despite many years of poorly controlled diabetes, he reversed the process and sis not succumb to “Hyperglycemic Memory.”


#6

Well, my A1c has been in the four range for the past decade, and yet I’ve had to have four laser photocoagulation treatments during that period. In my earlier days, the level of blood sugar control was nowhere near as good, but I had to have retinopathy treatments only every twenty years or so. I suspect what is happening here is that hyperglycemic memory is operating, so no matter what I do now, the complications are going to get worse, because they are determined not by my present control, but by the accumulated effects of the first twenty years of my diabetes before home glucometers were invented and blood sugar control became possible.

And yet still, members of the medical profession pester me all the time about strict control. I wonder when they’ll start to translate the concept of hyperglycemic memory into clinical practice? Certainly not as quickly and easily as they transposed into clinical practice every research result requiring more discipline, more danger, and more struggle into clinical practice. I have to think the reason why they are so fast to bring punishments into their treatment plans and so slow to let up on patients is more sociological or psychological than medical.


#7

I am fortunate that I’ve only rarely had doctors criticize my control, and never have I experienced one being “mean” about it. But these days my control is great, and most doctors are rather in awe at the “dedication” I put towards control (compared to their average patient, I think).

It’s interesting, because I used to hate and loathe diabetes. Every day, every test was a frustration for me. And in addition to frustration, almost daily diabetes was also scary or sad or overwhelming. You can look back on my posts from ten years ago and see it in how I wrote about diabetes and my experiences. Gaining tight control (through a very low-carb diet, use of the pump and CGM, “sugar surfing” techniques, and daily review and adjustment of basal rates and ratios) has taken all the frustration out of diabetes for me. It’s still annoying at time, but it doesn’t cause the emotional turmoil that it did for about the first 23 years of my diabetes life.

The other night I ate a higher-carb meal for me (about 20 grams at once), and I was surprisingly stressed out giving a big (relatively speaking) bolus and going to class. Studies have shown that insulin potency varies widely, and I felt like I’d just injected a big dose of “unknown” into my system. Sure enough, my BG went up to 14 mmol/L and then, when I corrected that, the correction sent me to 2.5 mmol/L. That brief glimpse of what life used to be like on a daily basis, and is rarely like now, is enough to keep me on track.

So for me, the answer has not been to loosen control and live with the consequences but to try out all available techniques to find what works for me to tighten control and stick with them. I resisted low-carb for years because I insisted my BG was too variable and it wouldn’t work for me. And, indeed, low-carb has not been the “only” answer for me. My BG is still highly variable compared to many I see. I still need to monitor closely and adjust frequently, often by large amounts. Even with all that, my control is not nearly as tight as what some people post. But I am so glad I gave all techniques a shot, even those that I really didn’t want to try, because it’s had a profound impact on my life and attitude towards diabetes.

You’ve said in many other posts that your blood sugar swings wildly. There is some thought that glycemic variability is just as important, or maybe even more important than, high blood sugar in causing complications. While A1c may be important, A1c alone doesn’t really indicate whether someone has good control or not (I’d say average blood sugar, standard deviation, and time in range are better measures). And, while hyperglycemic memory may be true, there are also studies like the follow-up to the DCCT that show even temporary periods of good control have benefits in reduced complications decades down the road.


#8

I have trouble finding these studies. I mostly find studies that look at this but don’t find any difference in regards to complications.

I do agree that variability heavily impacts quality of life, but I was wondering if you had any specific studies you’ve referenced that definitively showed that the probability of developing complications is reduced with lower glycemic variability?


#9

I unfortunately don’t. I’ve read the information in books and articles, but no direct studies. I’ll re-word my post above to reflect that. And in fact, I think you’re right that there may not be a lot of direct research on this issue (it seems sort of in the stage of “high blood glucose causes complications” before the DCCT was done; some believed it, some didn’t).


#10

I agree, I think there are positive psychological benefits to understanding what is going on and feeling in control. I also feel better when my blood sugar is within normal range. It’s not all just about preventing complications.


#11

I agree with some of the things you say, but it isn’t really my experience that doctors are pushing for tight control at the expense of quality of life. I don’t think many doctors would expect or want their patients to have A1Cs in the 4s. For years mine was around 7 and my doctor told me that was just fine. Lowering it was my decision alone and I’m glad I did because I feel a lot better most of the time. I have no idea if hyperglycemic memory is real. It could be, but I’m sure there are always benefits to trying to do better. I’m sure a 30-year smoker has done irreversible damage, but that doesn’t mean he shouldn’t still quit. It’s your body though, if you would feel better loosening your control then why not do it? Who cares what any doctor says?!


#12

I know that Dr. Irl Hirsch has written about the negative effects of increased glycemic variability. Here are a few pieces from the medical literature. I have not read this work closely but I offer it here for those who want to read some on glycemic variability.

Anecdotally, I have felt a much better quality of life now that my standard deviation on my CGM data is below 25 mg/dL (1.4 mmol/L).

Here’s an older diaTribe column for background on Dr. Hirsch and his long interest on glycemic variability. Dr. Hirsch is also a T1D.


#13

I’m looking through his articles. He doesn’t actually conduct any studies himself, but he compiles an article to argue his point. So far most of the studies he uses to back-up his points don’t actually list the conclusions in their results that he attempts to use as a reference for his articles.

I tend to be quite dubious of people who create articles listing studies to argue a point. They tend to bend the results of studies in the direction that suits them.


#14

Is this what epidemiology studies are?


#15

Is he an epidemiologist?

I’m not sure about what constitutes an epidemiological study. A quick google search defines the difference between a research study and a review article.

https://apus.libanswers.com/faq/2324


#16

I’m really enjoying the last link you posted though. He has some interesting responses to the questions.


#17

Here’s some resume items for him. I’m not sure how to characterize his academic and medical pursuits but I do see him as a professional person who has devoted many years to the study of glycemic variability. In addition to seeing patients and medical teaching, his status as a T1D gives his comments extra gravity for me.

I’m not here to defend him, simply to offer fellow members a resource.


#18

Hi Jen: The latest review of research suggests that glycemic variability may have a role in causing the complications for type 2 patients, but not for type 1 patients:

Diabetes Res Clin Pract. 2014 Sep;105(3):273-84. doi: 10.1016/j.diabres.2014.06.007. Epub 2014 Jun 23.
Assessment of the association between glycemic variability and diabetes-related complications in type 1 and type 2 diabetes.
Smith-Palmer J1, Brändle M2, Trevisan R3, Orsini Federici M4, Liabat S5, Valentine W6.

Abstract
Chronic hyperglycemia is the main risk factor for the development of diabetes-related complications in both type 1 and type 2 diabetes, but it is thought that frequent or large glucose fluctuations may contribute independently to diabetes-related complications. A systematic literature review was performed using the PubMed, EMBASE and Cochrane Library databases with searches limited to studies published from June 2002 to March 2014, in English and including ≥50 patients. Twenty eight articles were included in the final review. Eighteen studies reported the association between glucose variability and diabetes-related complications exclusively in type 2 diabetes. A positive association between increased variability and microvascular complications and coronary artery disease was consistently reported. Associations between glucose variability and other macrovascular complications were inconsistent in type 2 diabetes. Seven studies examined the association between glucose variability and complications exclusively in type 1 diabetes. Increased glucose variability appears to play a minimal role in the development of micro- and macrovascular complications in type 1 diabetes. Consistent findings suggest that in type 2 diabetes glucose variability is associated with development of microvascular complications. The role of increased glucose variability in terms of microvascular and macrovascular complications in type 1 diabetes is less clear; more data in are needed.

Why glucose variability would make a difference to type 2 patients but not to type 1 patients seems difficult to explain, since why would it be a causative mechanism for some people with diabetes and not for others depending on how they developed the disease? This is similar to the question why strict control seems to have a net negative effect on type 2 patients according to the Accord and numerous other studies, causing a higher death rate which outweighs any theoretical benefit from ‘better’ blood sugar levels and little impact on lower rates of complications but somehow strict control is still good for type 1 patients? If hyperglycemia is the agent of damage, why does the type 1 diabetes body respond negatively to this but not the type 2 body, at least within certain ranges of hyperglycemia reduction?


#19

I remember the triumphal look on my Dr’s face when the DCCT came out back in the 80s. I wouldn’t say it was “meanness,” but there was definitely a kind of vehement militancy about tight control. But I think that kind of You need to take better care of this! attitude is built into medical culture toward a lot of health issues where the patient’s behavior is a factor. Cardio-vascular stuff, for instance.

I certainly see a lot of “meanness” among the general public toward PWD though. View the comment threads or LTE pages when there’s an article about “Diabetes” and you’ll see plenty of vitriolic comments along the lines of It’s your own fault for being a lazy couch potato and eating too much sugar!

Mostly targeted at T2, or would be if these people even knew about the different types and causes, which they mostly don’t.


#20

Interesting point about whether it makes sense to impose strict discipline as people approach the end of life, though. I remember we used to have to sneak a bottle of single malt into my dad’s room during his last few years when he was in elder care. Cripesake, he enjoyed the stuff and it wasn’t like it was going to hurt his chances qualifying for the Boston Marathon. Let him have it if it makes him feel a little better in his last days on the planet.

Not quite the Alan Arkin character in Little Miss Sunshine, an outrageous old geezer who takes up heroin in his dotage because why not. But there’s definitely a need to question priorities when you’re obsessing about long-term consequences at a point where long-term isn’t really a thing any more.