Does not having complications for a certain amount of time reveal your genetic hand?


#1

For example, I’ve heard it suggested that if you go 20-25 years without kidney problems, you likely aren’t the susceptible type. Or…go a long time without other issues, etc.

Also, the metabolic memory thing…I know this is protective 20-30 years plus, but it might even go beyond that, from what I hear.

Just a question that is on my mind some lately.


#2

I’m really not sure if it’s genetics or luck/blessings. I’ll take it all! I’ve had diabetes for 29 years and I consistently get extremely nervous at doing kidney samples and opthamology exams. I’ve never had a bad result, but I’m waiting for the other shoe to drop.


#3

In addition to years, it greatly depends on your BG control. My first 25 of 50+ years, I had very high BGs, and A1Cs were not even measured. But urine testing consistently showed positive, which meant BGs over 200 much of the time. And it took about 20 years for eye changes that were noted, but not bad enough for treatment.
Ironically, when I switched to better insulin, BG testing and meal choices, my eyes worsened, which studies found to be common. In hindsight, they said maybe doing more gradual reduction may have been better. But I still have pretty decent vision, considering, partly due to advances in laser and vitrectomy treatments.

Current kidney function is considered ok, and stable, but not as good as non diabetic.

If you search this site for DCCT there are discussions related to A1C and risk of complications.


#4

I sure would like to know the answer to this. After urine testing for 22 years and not getting consistently great results, I was dx with a tiny bit of retinopathy. I learned about home glucose testing and cleaned up my act. My eyes cleared up right away. I have done everything thing from eating anything I wanted and giving insulin to very low carbing for 11 yrs to what I am doing now. I have been eating low fat and about 300 carbs a day for 1 and 1/2 yrs. I use only a small amount of insulin and my beta cells were dead a long time ago.
My A1c’s have been consistently good since purchasing a monitor. I don’t use a pump or CGM.

My eyes are perfect, my kidneys are perfect and I am 60 yrs in. I have never had any neuropathy. Did the high LDL cause the need for stents, was it the constant stress?

While low carbing my LDL climbed to 215.
After an extremely stressful 15 yrs, which culminated in 2010, I ended up with 2 heart stents. The 15 yrs of stress were from raising our dear son who was extremely ill for 15 yrs. He couldn’t attend school. 2010 was after my son was finally doing much better, but it had a whole new set of horrible problems.

Anyway, I don’t really think my stents were caused by my diabetes, but I can’t know for sure.

The cardiologists just naturally assumed it was because of diabetes and the LDL numbers but the more I read about stress and the narrowing of arteries, the more I think it wasn’t from diabetes.

I know for sure though that glucose levels matter enormously.


#5

While anecdotally we have many here who quote factors like you mention, I have looked for research results on the topic and find nothing that even hints that the anecdotes are universal.

The way I way the DCCT and follow-on studies, we are all at risk for the complications, much more so for higher A1C’s, and there is never a goalpost beyond which we are “home free”.

It is fascinating reading articles about complication rates that are more than a couple years old, and how many of the “rules of thumb” they quoted then about complication rates, are now COMPLETELY INVALID for those who have been able to achieve tight control through advances like home bg testing. For example if you read the WESDR studies of the 1990’s they say “retinopathy will be present in nearly all persons with type 1 diabetes by 10 years duration and in all persons with diabetes by 20 years duration”. There were similar pronouncements for nephropathy, neuropathy, etc, all doom and gloom. Oh and they gave you a medal for just living 25 years after diagnosis, that was so rare.


#6

Yes, I know that this is true. It is all pretty mysterious since in my first 10 yrs I imagine my numbers were awful. I have been very fortunate. I will continue to keep a low A1c.

I don’t follow Bernstein anymore, but he had all kinds of diabetic complications when he was much younger, and most have cleared up by keeping his a1c very low. He has been a type 1 for well over 70 yrs.


#7

Believe it or not, they once believed the “thing” that attacked beta cells was also attacking eyes, kidneys, etc, leading to complications. So they told us it was just a matter of time.

The DCCT is what found the connection to high BGs.


#8

I had one doctor who told me that insulin caused all the complications. His evidence? People using insulin had the most complications.

STONE KNIVES AND BEARSKINS


#9

Thank you for the great responses. I have had a pretty good 20+ years with the disease without retinopathy or kidney issues. My a1cs have always been in the 6’s and 7’s, with the odd 8 here and there. I’ve been a bit “high” by my standards of late, anywhere from 7.5 to 8 ish, but i’m ok and striving to get back into the 6’s.


#10

Oh my, that doctor was so ignorant.


#11

I think I heard that too. What do you expect when the insulin was from pigs and cows, and maybe some strange other stuff based on what they ate.


#12

We were all so ignorant. I’d get a blood glucose test every 3 or 6 months and when it was done, the doc didn’t tell me or my parents the result. How much can you learn from a single random bg anyway? STONE KNIVES AND BEARSKINS.


#13

Yes, at the time (early 1980’s) genetically produced insulin was still science fiction and I remember being told that they were hoping that all complications would go away with that insulin.

I used animal insulins for a couple decades and they were not a problem for me. I finally transitioned to Humulin only after the animal insulins were largely discontinued in… the late 1990’s? I remember being slightly miffed that the price went from $7 a vial to $12 a vial.


#14

My suggestion is to focus on present, and continue to maintain the best BGs you can. Some studies suggest “time in range” as a better measure of your risk. Trying to be 100% in range can have negative impact to quality of life, so it’s a balance each person has to find for themselves.


#15

I think diabetes complications are hard to determine cause in part because diabetes treatments are improving all the time. Even those of us diabetes 25-30 years ago had access to glucose meters right from the start, which is much better than those diagnosed 30-50+ years ago who didn’t have this technology. I imagine those diagnosed in the 2000s since puma and CGMs have become common will have even lower rates of complications. Though of course, some people even without diabetes can develop things like retinopathy and neuropathy. I have had no diagnosed complications, though I do have neuropathy-like symptoms going on for several years now, it has not been diagnosed as any complication. My endocrinologist does not think it is related to diabetes (symptoms don’t seem to match up to typical diabetes neuropathy) and I haven’t yet brought it up with my GP.


#16

As an example from the opposite perspective, consider the following:

  • I was diagnosed three years ago with T2, then changed to a LADA diagnosis. Tested normal A1c and BG 1 year prior to diagnosis (i.e., no long-term hyperglycemia).

  • I’ve kept an A1c between 4.6-5.2% since three months post-diagnosis.

  • I was diagnosed with “moderate to severe mixed neuropathy” in both legs about six months ago.

Neither my doctor nor I could figure out how this can/should happen. Meanwhile, the consulting/diagnosing neurologist says: “Well, it just happens this way sometimes. We don’t know why.”

Then I find out two weeks ago that my Dad, my older brother, my paternal Grandfather (none diabetic) also have mixed neuropathy in both legs, and my younger brother (prediabetic) and my youngest brother (LADA) both have early symptoms and indications (loss of bloodflow and sensation, etc.) in both legs.

So, this leads me to three conclusions:

A) We often assume that certain conditions are complications of diabetes, when in some (many?) cases they can be not-at-all or loosely correlated.

B) In my family’s case, there is clearly some highly heritable condition that leads to mixed neuropathy in the legs.

C) My family’s genetics freaking suck.


#17

This really gives the lie to the common misconception that doctors are scientists. Doctors have training in some science, but (outside of those with research appointments and usually a PhD in biology or statistics in addition to their MD) they aren’t generally trained in analysis.

Your doctor’s statement is perhaps the best and most ridiculous example of “correlation means causation” I’ve yet seen. Cheers


#18

I have LADA, but at first they told me it was type 2. I had an uncle that was type 1 and have been a vegan and ate a good diet, I exercised but I was overweight. I asked my pcp if I could be a type 1 and this was around 2008 and was told no you can’t be because the medications wouldn’t work at all if you were type 1.


#19

Unfortunately with diabetes, there are no hard facts/rules that fit everyone. I have been at this for over 48 years and have no complications. It sure isn’t because I have done a great job of managing my blood sugars. Who could “manage” blood sugars when you are testing urine and taking one injection a day. It was pretty brutal back than and I remember when A1C’s first came out mine was in the 13’s.
So as bad as my genetic makeup is, I do believe that there are many of those genes that have helped protect me from myself. And I did have an endo once tell me that if you have gotten this far without any major complications and you continue doing as much as you can to maintain the sugars, I should be ok. Again no guarantees but I do keep hoping she was right!