STUDY: More Advances Are Needed for the Type 1 Diabetes Community


#21

I think that using only the A1c metric for studies is flawed. Time-in-range and glucose variability are critical factors that affect metabolic quality of life.

The same value A1c can contain markedly different glucose exposure. The same A1c in two people can include a standard deviation of 30 mg/dL (1.7) in one person and a SD of 60 (3.4) in another person.

Did you know that people with a 6.0% A1c can range in average blood glucose from 100 mg/dL (5.6) to 152 mg/dL (8.4)? The A1c is imprecise, misleading, and doesn’t really communicate glucose metabolism quality of life very well.

This diaTribe graph makes my point.


#22

I don’t think it would be. You must take insulin when you take Symlin.


#23

Well, we haven’t found anything that completely replaces insulin in a T1. But there are commercial drugs including Symlin and Metformin that seem to smooth out bg spikes and reduce insulin needs (and possibly help with weight management?) in T1.

(And that’s ignoring other experimental treatments like Faustman’s BCG mix).

Maybe I just don’t know what a “non-insulin pathway” is. I half suspect the folks who put together that poll and that webpage and posted the link here, are all the same people, and could help answer this. They don’t really seem to engage into my questions and discussions and that can be a little frustrating. At same time I suspect they have their own agendas that I don’t fully understand.


#24

You don’t say what the cause of your poor kidney function was. While there is a correlation between hyperglycemia and diabetic renal failure, diabetic kidney failure is the most heavily genetically determined complication there is. People with the genes for this complication typically develop renal failure after 17 years of diabetes, and the incidence of this complication appearing fades away dramatically after that. If you haven’t yet developed diabetic nephropathy after all these years of diabetes, that is probably not going to be the cause of your possible renal failure.


#25

It’s important to note that A1c was the only variable that was different in this study, which makes it much more likely to be the cause accounting for the correlation.


#26

I don’t have a lot of details about my congenital kidney disease. I was incorrectly Dx’d with T2 at 30 years old (using only the age criteria - I was a ballet dancer weighing 100 lbs - down from my working weight of 110 lbs) at 5’6", and no T2 in my family medical history) The time with untreated T1 did worsen my kidney function, and it has gotten worse over the years due to the congenital issues. I’ve had T1 (dx’d after being found in a coma from DKA). for close to 35 years and keeping my numbers in the nnon-D range to the best of my ability has helped me avoid dialysis (for which I am grateful).


#27

If you don’t have the genes for diabetic nephropathy that may well mean that your hyperglycemia won’t cause it. If you had had the genes for diabetic nephropathy you probably would have gone on dialysis sometime around 17 years after onset of the diabetes, or otherwise not. If you look at the statistics on how many years after diagnosis of type 1 diabetes patients have to start dialysis, the numbers are quite low until a very sharp peak around 17 years post-onset, and then the bell curve distribution rapidly falls away, with fewer and fewer patients diagnosed after that, even though their accumulated hyperglycemic-hours burden continues to increase. This points to some genes coming to expression a set time after the initial autoimmune attack on the pancreatic beta cells, rather than the result of a continual accumulation of hyperglycemic stress.


#28

Your statement is simply not true. Below are the variables that are different for the people that died in this study.


#29

I was referring to the variable studied. Interestingly, when the DCCT came up with similar correlations between A1c values and complications everyone jumped on that result to justify the imposition of strict control of blood sugar values, with the result that severe hypoglycemia rates tripled and the deaths from hypoglycemia increased. But now that a result emerges suggesting that the medical profession let up on type 1 diabetics, there is resistance.

Anthropologists might be interested to note that witchdoctors in third world contexts punish patients who can’t be cured but befriend those who do recover from the treatments employed, or seem to. I wonder often is the same inclination to burn with radiotherapy and poison with chemotherapy essentially incurable cancer patients and impose punishing strictures on diabetics comes from the same subconscious instinct among western physicians. If you look at the pre-insulin history of diabetes, diabetics were tormented with anal suppositories, forced to run up and down stairs even though exercise is bad for diabetics in the pre-insulin era, and subjected to lethal starvation diets, and I wonder how much of that approach persists through the modern era. I remember being forbidden to drink diet soft drinks when I was first diagnosed on the theory that this would “just keep alive the taste for sweets,” and we were never allowed to take more insulin in order to eat more food or something sweet, even though today both of those usages are recognized as harmless. What was it that induced those doctors back in 1966 to adopt an excessively punishing attitude? Perhaps the same thing that makes them not want to accept that now that the same thing that was discovered in 2008 for type 2 diabetics, that lowering A1c too close to normal was harmful, has now been discovered for type 1 diabetics.


#30

It sounds to me that you’ll find whatever study supports the theory that the medical profession has a vendetta against people with diabetes.

The study did not conclude that severe hypoglycemia was the primary cause of death actually. In fact, the lowest quintile did not have a higher incidence rate than the second quintile (which also had the lowest mortality risk). The study stated the following:

“In our study, severe hypoglycemia events more often occurred in the lower compared with the higher HbA1c quintiles (P for trend < 0001); however, additional adjustment for severe hypoglycemia events did not attenuate the association between low or high HbA1c with all-cause mortality…
Also, Gruden et al (30) did not find an association between severe hypoglycemia and cardiovascular events or an increase in the markers of inflammation and endothelial injury in the EURODIAB PCS. Additional adjustment for nephropathy in our study indicated a stronger magnitude of the association for HbA1c below the reference, whereas the association for HbA1c greater than the reference was slightly attenuated. This could indicate that the positive association between low HbA1c and all-cause mortality risk might be stronger in those with nephropathy.”

In your prior comments, you stated that nephropathy tends to be genetic.

I find it frustrating that you insist upon diabetics being healthier at higher A1cs, but you yourself have chosen to obtain an incredibly low A1c. It seems that perhaps you may be to blame for making your life more difficult rather than the medical profession.


#31

In addition to looking beyond HbA1C (hypo’s and hyper’s don’t cancel), treatment and targets need to be more flexible so the patient has more say in BG targets, especially for those looking for tighter control and consider inter individual variation. Part of it is being more balanced and not extremely averse to hypos. It is also paying more attention to the post-prandial BG contributions to long term damage and considering quality of life over mortality. (I would much prefer death caused by a hypo over blindness and/or amputations.)

My neuropathy and retinopathy showed up 20 years after diagnosis (as T2). With tools we have now and an earlier diagnosis of T1, I could easily have gone 40 years without either. My highest HbA1C was 6.8 at diagnosis. I mostly ran 6.2-6.5 on oral meds. I’ve been told my BG must have been lower sometime for my HbA1C to be good, even after testing at all times of day and night. And today looking at ADA Standards of Care, I found that I might be obsessive. So that experience informs my opinion above.


#32

I suspect that the smaller correlations the study noted, such as the higher death rates associated with cigarette smoking and male gender, are just expressions of the usual phenomenon found when you administer something toxic to a varied group of subjects: those who are already weaker tend to die first. It does not mean that the toxin being delivered is not toxic!

Medicine’s motto since Antiquity has been ‘primum non noscere,’ or ‘first do no harm,’ so a medical regimen thought to help patients actually causing a higher death rate excites alarm. If strict blood sugar control were a drug rather than a medical regimen, it would have been taken off the market or at the very least marked with a black box warning on the basis of this study. In type 2 patients the results found in 2008 were so dramatic that the study had to be stopped before it was finished since it was deemed unethical to continue, in view of the higher death rate being caused among those with much more normal blood sugar. Since I have always felt better – stronger, healthier, more energetic and alert – when my blood sugar was higher rather than lower, I wonder whether along with the large complex of genes causing both the autoimmune attack and the complications of type 1 diabetes there are also some that induce us to need higher than normal blood sugar levels to function normally, such as is found in some animals, usually birds like chickens and hummingbirds, which naturally need hyperglycemia to operate.

In response to the demonstration in 2008 that type 2 diabetics had a higher death rate in response to ‘better’ blood sugar control, there was an editorial in the New York Times suggesting that the patients were dying at a higher rate because the rigors of strict control had exhausted them and stressed them to death. Whether that was true or not, it was a useful reminder to endocrinologists and diabetologists that there is a real cost in quality of life associated with strict control.


#33

Scientifically, a single study means basically nothing except that further follow-up studies should be done. It should be noted that the DCCT was not the first study done on blood sugar control and complications; it was the big follow-up study done in response to earlier research to confirm whether diabetes control had any impact on the development of complications.

But all that aside: today most patients with T1D are already achieving the goals that, acording to you, reduce mortality. According to T1D Exchange data, more than 70% of the 26,000+ patients in their database have an A1c between 7.0% and 10.0%. That’s far greater than the 14% of patients who have an A1c of 6.9% or lower. So changing guidelines would not change much in reality. And, ultimately, guidelines are just guidelines. Patients have a legal right to choose their own treatment as long as they are aware of the medical consequences and are able to cognitively make such a decision. Even a patient with terminal cancer can choose not to have chemotherapy.

And I do wonder, since you seem to feel so strongly about this issue (and have posted many similar posts about the negative impacts of tight control), why do you maintain such an extremely low A1c yourself? I’ll admit, this baffles me. If you believe tight control is so harmful, why not loosen control? Like any medical treatment, your level of control is ultimately up to you. And, while you continually describe medical professionals forcing, tormenting, and punishing people with diabetes, I really can’t picture any doctor “forcing” you to have such a low A1c. Even with current guidelines, most doctors would be perfectly happy with an A1c of 7%.


#34

This individual has an agenda and cannot be reasoned with. It will just go on and on until someone closes the thread!


#35

Although this is just a single study, it covered a huge number of patients for a very long time (more than 20,000 for 7 years), so its statistical strength is significant. Although most patients are out of the dangerous range as things now are, the study does raise important questions about the pressure put on people to go ever lower and to try to normalize blood sugar levels as much as possible. Medically, it is certainly a fascinating question why a certain group of patients would not benefit from having blood sugar values nearer to normal, but would actually suffer a worse fate because of it. This puts into question the whole existing theory of diabetes management. Practically as well, even if this study applies only to a minority of patients, no one should be neglected in medicine, and with the constant improvement in blood sugar control technology, the group falling in this danger zone will only increase. Also, those researchers working on improving blood sugar control may take a valuable lesson from this study about what the goals of their technology should be.

Although I am personally able to maintain an A1c in the four range, others are pressured by their doctors to go ever lower on the basis of the traditional theory that the more normal the blood sugar the better, even though their social functioning may decline as a result and the risk of severe hypoglycemia may be too high for them. Whatever happens to apply to my own case, it is important to think of others as well.


#36

But, if you look at official diabetes guidelines in the US, Canada, and the UK (which I just did), all of them provide provisions for aiming for an A1c level >7.0% for specific populations and/or based on individual patient needs. None of the current guidelines advocate pressuring every patient to get an A1c as low as they possibly can; and, in particular, all guidelines mention taking hypoglycemia into account when considering individual A1c targets.


#37

There are many strict control fanatics among the medical profession. One French doctor at the hospital where I work wanted all diabetics to maintain an A1c of four, for example. But what is important is knowing that the range between 7% and 5% should be regarded as a danger zone, when previously it was not. It is also worth noting that hospital admissions for diabetic hypoglycemia greatly increased after the DCCT and the general rate of severe hypoglycemia incidents triples on strict control. So while in theory doctors should avoid leading their patients into hypoglycemia territory, they do, largely because they don’t understand the intrinsic variability of the disease.


#38

That’s pretty arrogant of you to think that you should be entitled to normal blood sugar levels but others are simply incapable of attaining them and benefiting from the lower risk of complications.


#39

It sounds like a lot of your experiences with the medical profession and with diabetes differ quite a bit from what others on this forum have experienced. I just cannot relate to so much of what you write. Medical professionals absolutely are aware of hypoglycemia risk, many of them are more afraid of lows than highs, and I just cannot imagine a doctor suggesting that a patient struggling with lows work on lowering their A1c further. I also don’t understand how any of this relates to guidelines. If doctors are following current guidelines, then they are already supposed to individualize A1c targets. Changing guidelines, even if it were appropriate to do so based on the results of a single study, would not eliminate doctors who choose to disregard guidelines in favour of their own opinions.

I think it’s important to remember that everyone with diabetes differs in their experiences, and making blanket assumptions about what others must experience based on your own situation is sort of ridiculous. You are comparing yourself with a 4% A1c to the rest of us who have A1c levels 2-3% higher than that and, most likely, have never had an A1c anywhere near that low. I wonder if your opinions and feelings, especially about the burden and risk of hypoglycemia, would be different if your A1c was more in line with where most others on this site are at.


#40

Maybe the definition of “many” is different in French than English. I’ve never had any doctor suggest an A1c of 4 or read any medical guidelines that suggested such a thing.