Long term prognosis for controlled type 1s?

So, I'm now into my 6th year of membership in the T1 club. Late onset at 39 years old. I'm 6'1" and 165lbs.

Most of the time I have been keeping my A1c under 6.2, generally around 5.8-6.0, which I'd like to lower a bit more but have been testing out eating MORE carbs the last few months (I'd been staying 50-60g/day before that with better A1c results, but I am always hungry so have been trying to eat more to see if I can alter that at all).

Anyway...I've been getting back to my reading up on long term issues for T1s and (much like for T2s) 99% of what is out there appears to be speaking about uncontrolled diabetes, or doesn't make it clear.

In a class of mine on internal medicine, we got a slide that stated that after ~20 years 100% of T1 patients develop retinopathy. That took me back a bit. 100% is a serious statement to make. 99% implies some don't, but 100% is...well.everyone.

So I started poking around the google again and found it almost stated elsewhere as well:

During the first two decades of disease, nearly all patients with type 1 diabetes and >60% of patients with type 2 diabetes have retinopathy.

So my questions to you are as follows:

  1. Is that true for retinopathy?
  2. Are any of you longer term controlled T1s not impacted by retinopathy?
  3. How about insulin resistance? Is it inevitable as well despite good control, physical activity, etc?

I certainly get that better control = better prognosis, and I'm not thinking of abandoning control, but I will be upset to learn that it is just a delay, not an avoidance of complications. Obviously every body is a different case, but am I just lying to myself by believing that good control means avoiding retinopathy, neuropathy, insulin resistance, etc?

Thanks for listening!


I'm a T1D for 30 years. My opthamologist performs a dilated eye exam every year. I've always been told, "no diabetic retinopathy." My BG control has been good overall but I've had some serious lapses where my A1c went to 8.5%. Most of my 30 years was spent in sub-7% range with my last A1c at 6.1%.

I'm skeptical of the 100% retinopathy rate for T1Ds > 20 years since I don't think my experience is exceptional. How old was the data on the slide you saw in class? I read recently that the landmark Diabetes Complication and Control Trial and its follow-up study has also found that retinopathy rates among the better controlled group (I think < 7.5% A1c) were very low.

My philosophy on motivation for BG management is this: play the hand you're dealt. You can't control your genetic makeup but you can control what you eat, your exercise, and how you manage BGs. There is no guarantee that you will avoid diabetic complications but I like my chances much better with a closer-to-normal BG profile. Non-diabetics have incredibly tight BG fluctuations, something that few persons with diabetes can reproduce.

It looks like you're maintaining excellent control. I would encourage you to continue on that path but realize that life has no guarantees and none of us gets out of here alive!

I forget who first coined this phrase, but I like it. "Well controlled diabetes is the leading cause of nothing!"

When my A1c drifted up to 8.5%, I became insulin resistant. When I cut my carbs, lost weight, and exercised every day, I cut my total daily insulin in half. At this point my insulin sensitivity was restored.

Working from memory here but I think the text-book formula for insulin sensitivity is <= 1/2 unit of insulin per day for every kilogram of body weight.

Hi Chris,

I have no complications related to being diabetic for 30+ years, so you are not lying to yourself. I had a good many of those years without all of the advantages we have today, so my bg's were not exactly well controlled. I don't like stats like you have found...that 100% one is simply not true. I can prove it!

Do the best you can, and don't let the statistics freak you out. I agree with Terry who shared "Well controlled diabetes is the leading cause of nothing!" It's true. I am always on the look out for a looming bus ;)

I'm with you 100%, Terry! And congrats on good long term control--and results!

I appreciate the feedback, as it helps set my mind at ease. The class notes don't include citations (in many ways it is a cursory overview of internal med). The linked article is based off of a 2002 study.

Love the quote by the way, and it appears to be attributed to Dr. William Polonsky, co-founder and president of the behavioral diabetes instituteinstitute.org/.

"Well-controlled... Nothing" comes from Bill Polonsky's Diabetes Behavioral Institute. In fact I have the T-shirt.(I was lucky enough to meet him while living in San Diego).
To the original poster. I firmly believe that the T-shirt is right. Blanket statements like the one you came across regarding retinopathy is most like very out of date. So much has happened - and it happens fast - in terms of knowledge about diabetes (altho there still isn't a cure) that there is more reason (in my opinion) for optimism. We have the technology, access to home monitoring etc to do right by ourselves and our health. There are still medical practitioners who will insist that you are guaranteed to have complications by such and such a date. Don't listen to them. Find all the reliable sources of info that you can, (a good start is DiaTribe - a monthly newsletter with info from all over the world and includes the research and scientific breakthroughs).
I also think that as people with type 1, since our Dx - once correctly made - gives us the opportunity and reasons to take action. I often see people with type 2 who had it for years, but their symptoms are so sneaky, and insidious, that it isn't until they have complications =- like retinopathy - that they even get a Dx.

Full disclosure: I am a T2, approximately 20 years, insulin dependent. (The insulin was added at my insistence, not suggested by a doctor.)

That said, retinopathy is a major risk for all diabetics. It may be that the risk is higher for T1s, I am not qualified to say. But poorly controlled blood sugar places you at much greater risk no matter what your type. Definitely to be avoided however possible.

There was a live interview with TuDiabetes member and retina specialist Randy Wong here on tuD some months back. He also stated flatly that within 20 years every diabetic will have some retinopathy. For whatever that's worth.

But he also recommended having a test called fluorescin angiogram. It's pretty simple. They inject some dye in a vein and then examine the back of your eye. Similar to what your opthalmologist does but more detailed and definitive. However, you must normally go to a retina specialist to have it done; general practice opthalmologists don't offer it. I had that done and they found nothing worthy of note. But, now it's on record as a benchmark to compare against in the future.

So my questions to you are as follows:
1.Is that true for retinopathy?
Not in my case. I was diagnosed at 11 and developed retinopathy at 38--lots longer than the above numbers. WHERE did those statistics come from? More on this below..

3.How about insulin resistance? Is it inevitable as well despite good control, physical activity, etc? My sensitivity to insulin (after 51 years) is dramatically better. At first I took 150 units (or more) per day. Now I take 20.

On retinopathy...
I have good control--actually loosening up with a bit higher A1C. When I was diagnosed with R, I thought it was over for me. Mine was pretty severe when discovered, 23 years ago. I had a great doctor and multiple laser treatments. At 61, I use only reading glasses. The technology is SO evolved. I have not had any other problems or lasers in over 20 years.

Sorry, Chris, but control is key. Each of us is very different and our bodies react to D in very distinctive ways. The only tool we have for survival is control, but do not obsess over it. You don't have to be perfect all the time.

I've always wondered about this, will I face nephropathy, retinopathy, and neuropathy no matter what I do? Because I'm in a class with medical terminology and my professor works at a dialysis clinic, we talked about patient education last night and there was a big emphasis on diabetes and kidney disease in the dvd. It did not mention control however, it did say that high blood sugar might lead to it more but it did not necessarily say that uncontrolled diabetes is the only way to it other than just having diabetes yourself. Both my diabetic classmate and I wondered if it means even if we control it well, we'll have it? We're both very new diabetics (She was diagnosed right before me last year) still learning about it so that part is a mystery to both of us.

I really can't answer your question but I'm always curious about it too.

T1D for 29 years and no retinopathy.

"Uncontrolled diabetes is the leading cause of..."

Actually ANY sweeping "100%" type statement about diabetes from any source should be treated with suspicion and skepticism. The variability from patient to patient and situation to situation is just too great. Speaking in absolutes is just gobbledygook. And irresponsible.

For a long time it was widely believed that once you had diabetes, it didn't matter very much whether you controlled your blood sugar or not, you were done for. You can laugh, but a lot of highly qualified and very serious people believed that to be true for a great many years. When the preliminary results of the DCCT study were announced, clearly refuting it, the story is that the Joslin staff were all going around wearing buttons that said, "We told you so".

The Polonsky quote says it all. Control is the key. Period, full stop.

David - I remember when I was diagnosed 30 years ago. The young doctor told me that there was a considerable group of medical practitioners for diabetes that held that complications followed diabetes as surely as day follows night. He told me, however, that he felt that good control would better my chances. Maybe he was just trying to make me feel better since this was 10 years before the DCCT findings.

He didn't know that good control mattered. But it appears that his optimistic encouragement was also right!

This is one of those things that makes me believe that having type 1is a bit better than having type 2. And that is because most of the time, our Dx is early and fast. Our symptoms are very noticeable, we pretty much know right away that something's not right. And upon Dx, being told that it is insulin injections for the rest of our lives, well we kinda gotta take it seriously. So many of my friends with type 2 had such a slow onset of symptoms that they most likely had type 2 for years prior to Dx. And, often the MD's instructions are merely : "lose weight, eat better get more exercise". Whose MD doesn't tell them that - having diabetes or not. I agree with one MD who suggests starting people newly Dx'd with type 2 on insulin right away. They can eventually get off it if things turn around, but it makes for recognition that nay type of diabetes is serious business. And having the benefit of type 1 early Dx, lessens the chances that we're "working on developing" the complications.
At least thinking like that helps me to stay motivated and lets me believe that all of my hard work is paying off.

Terry and artwoman, I couldn't agree more strongly. There have always been doctors who parroted the standard doom-and-gloom line, BUT -- there have always been the other kind, too. For a textbook example, read this blog about my friend Bob.

As for insulin . . . Joslin now starts newly diagnosed T2s on insulin right away. Hmmm. Maybe they know something???

I'm not T2D but this fuzzy line that doctors have drawn between good metabolic health and T2D, I believe, is a disservice to their patients. Add to that the euphemism of "prediabetes," and you get a whole generation of people thinking that they "just have a touch of sugar."

Consequently it feeds into their human coping mechanism called denial and years pass and damage is done before the patient finally receives a cold dose of reality. Others here have said this and I agree, prediabetes should be renamed as stage 1, type 2 diabetes. Medical practitioners are not doing their patients any favors with this script.

Yes. Emphatically yes. I loathe and despise the term "pre diabetic". There ain't no such thing! Either your body can regulate BG properly, or it can't. Like being a little bit pregnant. Your blood sugar is either controlled, or it's not. The differences of degree don't alter that.

IMHO, the term "pre diabetic" is a linguistic deception and a terrible disservice, for exactly the reasons Terry gives.

the term "pre diabetic" is a linguistic deception and a terrible disservice

I know that the ADA has a book of standards that they publish once per year. I suspect that "pre-diabetes" is an included standard defined as exceeding certain thresholds of various medical tests. I suspect that this bit of linguistic chicanery is embedded in the very structure of the medical establishment. I know that these organizations want to help people. I hope that they realize how the term "pre-diabetes" does a lot more harm than good.

Hi Chris,

I think that the retinopathy information may be old/outdated as is much of the education process for medical professional on diabetes(very upsetting to see). Otherwise I wouldn't have ended up in the hospital in dka and I would have been properly diagnosed much earlier. I have only been diagnosed for almost 2 years(type1 adult onset) but I believe that I was having high bg on and off for at least 2 years. There was some damage to my eyes during dka treatment. I only needed 1.25 reading glasses for reading only prior to dka and then my vision went totally blurry after being put on insulin. It took 3 months to improve and it improved a bit more after that but it has not gone back to what it was. There is no sign of retinopathy at this point fortunately but something happened to my eyes for sure. Now I need 2.75 for any close vision to see clearly and I sometimes use 1.25 for distance. I have found a good retinologist who finally photographed my eyes and wondered why no one else had done this after everything that happened. She wants me to go every 6 months which is fine with me. I recommend finding a good eye doc/retinologist preferably and to continue your good control because that is the best chance not to have all these complications and to lessen their severity if you do get them. I also take losartan which I recommend also(one of the drugs recommended for this), I have good blood pressure but it can help prevent kidney damage.

I believe this type of damage in the eyes and kidneys happens slowly and often isn't visible in tests/pics until it gets worse, so it could be happening anyway.

I eat low carb, around 50-70 per day and I eat more fat, this can help with feeling hungry if you lower your carbs.

I would also recommend that you recommend to your school that they improve all of their diabetes information and education because this is so important since millions of people have diabetes and they are being misdiagnosed and given faulty treatments.


The second wikipedia link says the research you may have been told about was done on people who were diagnosed in the 70's I think and therefore didn't have access to better treatments so they may have had worse control. It seems like plenty of people at tudiabetes with long time type 1 have no or minor complications.

Hope this helps!

Here's the Randy Wong, retina specialist, video link.

When I was diagnosed as a "juvenile diabetic" in 1963--at 11--my pediatrician told me flat out: "you will not live to be fifty." Pretty devastating as a child/teen/young adult.... OH and my folks...

I had a big celebration when I made it to 51. Sort of a in your face to that doctor. Plus a huge weight off of me.

That pronouncement had a huge affect on my life.

1 Like