I know that several studies, including the often cited DCCT have linked tight control, and lower A1C's to decreased risks for neuropathy, retinopathy, kidney disease, etc. In fact, risk factors seem to increase exponentially as values rise. This all seems perfectly logical on paper, but I believe it doesn't paint the whole picture.
I hear of many T2s and 1.5s diagnosed relatively late in life, pretty good A1C's (5-7) that develop serious complications.
Then, there are T1's myself that have had decades of poor control (myself 7-11) that have been lucky enough not to develop serious complications. I know T2s that completely ignore D. HA1c several consecutive years < 14, but still seem OK.
I've noticed many examples here of both. Any explainations? Theories?
On a brighter note, I was always told that complications were irreversible, but am now hearing the opposite. Has anyone experienced this?
well, if one's kidneys fail, or other organs, I don't know how that can be reversed..dialysis, transplant is the only alternative. If one loses a limb..not sure how that can be reversed, has a heart attack, stroke, or the tons of other stuff which can happen...some neuropathies can get better with improved BG's.
Diagnosed 38 years ago, I haven't taken good care of myself over the years. My HBa1C hasn't always been the best. But I have zero complications. Yet I hear of people diagnosed for 4 or 5 years and already have problems. I don't have a theory, except a degree of luck (God?) on our side.
It is like gambling and some people beat the odds and some people don't. I want to do everything possible to stack the odds.
I was certain I was having somethig going on in my eyes and the doc said "your eyes are shot..." which made me go "holy %$&*" in my head and then he continued "...you need bifocals" which I probably should have figured out myself.
I wonder if your D started at an early age, with elevated BG, maybe your body adapted to it and somehow became more resistant to it? I'm glad you're doing fine. Take care of yourself.
I agree with that. I think there's several key components that would be "easy fixes":
1) goals: 140 is in "the danger zone" to me and is not an appropriate long-term goal. If your current status is above that, which I gather can be the case, it may be an appropriate initial goal but I think that for long-term complication-free living, your goal should be lower?
2) food: I think doctors need to seriously engage with food. If you have diabetes, and you are balancing food/ activity/ insulin, it shouldn't be appropriate to refer food questions to dieticians, which has been my experience.
3) approach based on expecting change? This part may be a bit more nebulous but it seems like a lot of people's reported encounters with doctors lead to the doctor "setting" rates and ratios and scheduling a follow-up visit in 3 or 6 months. I don't engage my doc a lot and haven't ever tried calling and saying "hey, X number is a bit off, can I change it" or "what do I do" and I've seen people do this or reporting asking questions but I think that if you have diabetes, you have to be able to figure out how to adjust stuff yourself? A lot of people here do but a lot of people "arrive" reporting "how do I fix this, I don't have a doctor's appointment for 3 months..." too? I think that expectations should be set that we will encounter change and that we should all be equipped to deal with that?
The only "cost" involved in these things would be to be certain that test strips are available but, other than that (and I believe that test strips need to be available anyway...), the only cost is in talking and, as they say, talk is cheap?
Among the Joslin medalists, HbA1c was about the only factor that didn't correlate with complications at a statistically significant level.
It seems to me that HbA1c is a very small part of what goes into who gets complications, and is a much larger part of how quickly they develop.
It also seems to me that certain complications show a stronger link to HbA1c- particularly kidney disease. In the DCCT, it's worth noting that not just complications, but risk of death, was lower in the intervention group. And it's also worth noting that the intervention group had lower rates of complications even when the HbA1cs were different. The intervention group was getting more shots and probably had more stable bgs even when HbA1cs were the same.
I think many people diagnosed later in life develop complications because they had many years of undiagnosed diabetes or impaired glucose tolerance. Some complications- particularly kidney disease- are also very much affected by other factors. In the case of kidney disease, that other major factor is high blood pressure. People with type 2 diabetes may be more likely to have hypertension and other risk factors for kidney and heart disease. And age may matter too. Also people dx t1 at young ages seem to have some level of protection from kidney disease.
I'm mostly curious about these things for my own information. Almost every major step I have taken with my D has come when I had no insurance and no doctor. I have a lot of firsthand experience with the disease, but a lot to learn. I hope people a lot smarter than me can figure some of it out.
I think that many problems with treatment stem from problems with research. And it is very difficult to do good research on diabetics. There are infinite variables. So, doctors having nothing nothing else to go on, must rely on past speculation, misinformation, and advertising. For example, the Mayo Clinic recommends exchange lists to this day!
Also, if you are taking "lab rats" who are directed to maintain BG levels that are basically bad for them, they will be predisposed to complications anyway? I think that to be a CDE you have to have some type of nursing/ scientific background. One of my friends just turned into one but I don't know her through D, just a coincidence, and I haven't asked her about it.
According to the followup from the DCCT study, most of the intervention group drifted closer to the control group after the study, but still managed to avoid complications compared to them. Raises a lot more questions than it answers. I imagine that T2s are even harder to study.
According to the CDE I met with first--- they have to be an RN, a Dietician, or a pharmacist plus complete the CDE program to become CDEs. I suspect that means that most are RNs or Dieticians.
I think that there are so many variables( age of onset, c-pepetide levles, are there still some residual beta cells in some Type 1's Many after onset that ofer a protective effects? I have had type one for 43 years and my only complication,so far,is mild neuropathy in my back, legs and feet, which improves when I am in better control.. My a1c's have always swung between 5.7 and 7.7,depending on my stress level the aforementioned variables. My father passed away about a month ago, a big stressor; and I was down south eating everything the visitors brought over for the family, so I Know my A1c will be a tad on the high side.... when I visit my docot in /august, or maybe it wont:been in control since I came back home to GA. My heart, eyes, kidneys and cholesterol are fine. I exercise, use a CGM on occaion, and do moderatley low carbs. I also do my own adjusting of basals and bolussing, ISF. I do not visit the land of DKA nor pass out lows, hardly ever....
I am just grateful to God that I am helathy and hoope to stay there.
What I'm curious about is the curriculum of the CDE program. I've had mixed experiences with CDEs. All were very nice, helpful, etc. But never able to answer specific questions or offer any useful advice, beyond 15g carbs in a slice of bread. I'm sure is a very difficult, frustrating job. I get the feeling that they don't have much to work with.
A lot of it has to do with pure luck. Maybe genetic make up has a lot to do with things. D aside some folk are just healther than others.
As for T2's diagnosed late in life with complications it has a lot to do with the fact that they may have had the disease for many years before being diagnosed with damage occuring all the while.
Hi Sam Iam: I think that the "1.5s" as you call them (I call them adult-onset Type 1s) develop complications at a greater rate because so many of them are initially misdiagnosed as having Type 2, when they really have Type 1. So they are not given exogenous insulin initially, go for a period of time misdiagnosed and mistreated, and develop complications much more rapidly (even if they get things under control once they get on insulin). I was misdiagnosed as having Type 2 diabetes 17 years ago (I was hospitalized in DKA but diagnosed as Type 2 because I was 35 years old). I was only misdiagnosed for one week, given the correct diagnosis of Type 1 diabetes and have been on intensive insulin therapy since then. I know a number of people (mis)diagnosed around the same time I was, and all of them went for many months or even years misdiagnosed and undertreated. And tragically, all of them have complications, and I do not. I think that those lucky adult-onset Type 1s who are correctly diagnosed and immediately put on intensive insulin therapy have an extremely good chance of having a complication-free life, but a correct diagnosis is a rare thing based on what we see here at TuD and in the scientific literature.
Melitta, would you say this is also true for those of us who were slow onset (LADA)and though misdiagnosed as Type 2, were able to maintain good numbers for months or even a couple years on oral meds before getting correctly diagnosed and put on insulin?
In my own case I waited too long (maybe five months) as my numbers slowly but steadily rose, which is what motivated me to do the research to understand my correct diagnosis. So of course I have concern about those 5 months. But what about those who do well on the oral meds and then are put right on insulin? Do we know if damage is done during that time on oral meds even if blood sugars are good?
