T1 mortality rates

I’m currently on my phablet, so it makes editing and providing citations a bit difficult. I’ll provide some counterpoints as time allows throughout the day.

Let’s start w/ “Myth: As far as diseases go, Diabetes isn’t that serious!”

Nobody dies of well-managed diabetes.

One might die from diabetic complications – but not from diabetes per se. (Ex: Autonomic dysfunction compounded by overinsulination might lead to dead-in-bed syndrome or an amputation might lead to sepsis…)

It may have been about 90 years ago, but my grandfather was said to have died from diabetes at age 28. Of course it was under insulination, because insulin was not yet available!

I know, I know…it was certainly not well managed😉

1 Like

The conclusion of several recent studies, though, is that 5 to 10% of diabetics (gasp) die of hypoglycemia before age 40. To me, that is a shocking number.

EDIT: I was wrong in writing “of hypoglycemia.” It is for all reasons combined. And, as @britt_j mentions below, the data is starting to be dated.

1 Like


That number seems a bit high… Citation(s), please?*

Please note that I’m not doubting you. I specifically noted dead-in-bed syndrome.

Tragically, when I see the blue candle, I invariably see a child/YA w/ a history of roller-coaster numbers – very high variability w/ moderate to severe hypoglycemia.

Since I don’t wish to appear unsympathetic, I will share a bit… I live alone most of the time and I have autonomic neuropathy – including central sleep apnea, hypo unawareness and cardiac neuropathy. (Why? Living on the roller-coaster w/ bad genes.)

At this point in time, I can’t do anything about my genes. But, I can control my variability. As Dr. Bernstein says, “Big inputs make big mistakes; small inputs make small mistakes.”

Please note that I’m also not saying that all diabetics should eat 6-12-12. I don’t. You’ve seen how I’ve tweaked Dr. Bernstein’s rules. I’m not even suggesting that kids/YAs should eat low carb. What I suggest is that we focus on keeping glycemic variability as low as possible.

I’d also suggest that if a PWD wishes to enjoy (non-low carb versions) pizza, cake, cookies, etc. experiments, they plan for it. Time it earlier in the day and bolus accordingly. Test frequently, apply corrections liberally and don’t overtreat hypos. I’d also suggest following such an experiment w/ lower carb meals, snacks and dessert for the remainder of the day. (Tacos made w/ a parm frico shell, buffalo wings, almond shortbread cookies, etc.)


“Sudden nocturnal deaths also known as “dead in bed” syndrome has been attributed to nocturnal hypoglycemia, which account for 5%-6% of all deaths among young people with type 1 diabetes.”


I am on the road but will post your ref when home. I just read my 2-liner above btw- I sounded like a certain person who advised you on friendships:( I’ll have to be more careful when I write quickly :slight_smile:

I have a hard time quoting on my phone too. I wanted to reference your list of personal challenges. Britt, you are quite amazing! I hope my son shows as much spunk as you do!

This forum gives me daily lessons in humility.


Humility? Yep, you’ve come to the right place! Ha!


OK, as usual I can’t quite find just the studies I wanted in the limited amount of time I have btw meetings, but this is close:

1 Like

@Michel, @ClaudnDaye and other parents of children w/ diabetes –

First, hats off to all parents of children with diabetes. Seriously. IMO, living with it is much easier than loving someone who has it.

Taken w/o context, the PDF posted by Michel is positively frightening. So, I’d like to put things in perspective. The stats we see about early mortality are driven by data that is decades old. Even newer data is driven by PWDs w/ high glycemic variability.

We now have better meters, faster insulin and the ability to analyze our own data. Via forums like this, we’re becoming informed. Knowledge truly is power.


“This forum gives me daily lessons in humility.” – I think living with any chronic condition will do that.

Thanks for the fix.


Amen to that. I often cite my grandfather, from whom I inherited diabetes within two generations, and the state of treatment at the time he was diagnosed. He died in a few years because there was no insulin yet available.

When I was diagnosed there were inferior insulins and no means to monitor glucose at home. I was told I would probably be dead in less than thirty years.

Fast forward a generation and we have fast insulins, continuous meters, data management and analysis at our fingertips, and unlimited support. In such a short period of time I’ve been given the opportunity to live a long and healthy life, despite only having had the tools for good control for the last twenty five years.

When I look at my situation through the lens of a hundred years of history, I can’t believe how truly lucky I am.


Totally true.

Here is an interesting set of stats from Finland, where treatment is universal and high quality: http://www.bmj.com/content/343/bmj.d5364

More than likely, death rate in Finland is lower than here - but these are the results for cumulative death rate of early onset T1Ds (in this study, up to the age of 15):
“In the early onset cohort, the 20 year cumulative mortality in the groups diagnosed in 1970-4, 1975-9, 1980-4, and 1985-9 was 4.7% (3.7% to 5.8%), 4.3% (3.3% to 5.2%), 3.6% (2.8% to 4.5%), and 2.7% (1.9% to 3.4%) … However, the follow-up time of the last group had not yet reached 20 years,” which means that the 2.7% is not valid - but the 3.6% is (for people diagnosed on 1985-1989).

1 Like

Here is the latest NIH report on diabetes: https://report.nih.gov/NIHfactsheets/ViewFactSheet.aspx?csid=120

“For people born between 1975 and 1980, about 3.5 percent die within 20 years of diagnosis, and 7 percent die within 25 years of diagnosis. These death rates are much lower than those of patients born in the 1950s, but are still significantly increased compared to the general population.”

This US number compares to 4.3% for Finland in the same timeframe (see my last post above), but specifically for early onset diagnosis.

This doesn’t seem like a happy thread…:worried:

Be careful with statistics everybody.

For example this one:
“For people born between 1975 and 1980, about 3.5 percent die within 20 years of diagnosis, and 7 percent die within 25 years of diagnosis.”

But there is no causation referenced in that statistic. How many of those that died actually died as a result of the disease, either directly or indirectly? Children die from car accidents, drowning, accidental poisoning, etc. Are those deaths counted in the percentages? A much more useful figure would be a comparison between diabetic and non-diabetic during those time-frames, or at least a number that says how many actually died from the disease.

I am not disputing the numbers, but I just hope they are being read in the correct way.

There are many papers that discuss SMRs, i.e. standardized mortality rates, which are essentially a way to compare the actual mortality of a cohort vs the expected mortality based on the overall population and the composition of the cohort.

In general, it seems that SMR varies along the life of a T1 (if we talk about T1s), peaking after a certain number of years, then dropping late. In many early parts of the curve, T1D SMR is typically 3-4, which means 3 to 4 times more than what would be expected in the general population.

For instance, in this sample from Sweden diagnosed before 1973, this study found a combined SMR of 3.4 across the whole sample, meaning that this sample of diabetics, all diagnosed before 1973, died 3.4 more often than expected based on general population stats.

This survey paper identifies multiple sources of SMR data, ranging from 2.0 (average across 12 European countries) to 3.7 in Finland, 4.0 in Norway and 12.9 (?!) in Japan for specific cohorts.

I think, like @britt_j, that participating in this forum, and being aggressive in controlling your A1c, would significantly decrease your chances to die early.


I feel the same about my son.

1 Like

Every person is different physically and mentally. Some are not capable of taking control of diabetes, or their body will not let them control it despite their best efforts. Some are too poor and can’t find help (this disease is expensive!). Those variables can not be accounted for in the clinical studies and cause my eyes to glaze over when I see those statistics.

1 Like

On a happier note…

Glycemic Control, Renal Complications, and Current Smoking in Relation to Excess Risk of Mortality in Persons With Type 1 Diabetes; by Elsa Ahlén, MSc et al; Journal of Diabetes Science and Technology; 14 June 2016

Conclusions: If currently recommended HbA1c targets can be reached, renal complications and smoking avoided in persons with type 1 diabetes, the excess risk of mortality will likely converge substantially to that of the general population. :slight_smile:


Amazing and wonderfully cheering result!

What they are doing:

  • Taking A1c <=6.9%

  • removing everyone with renal complications, e.g. assuming normoalbuminuria and eGFR ≥ 60 ml/min

That’s when they get converging mortality numbers. We know what it takes to get A1c down – that’s what we work on every day. So the next question is – what do we do to avoid renal complications?

1 Like

The most important thing is good BG management.

Then of course, doing the things they recommend for everyone - have a healthy diet, get plenty of water, lower your salt intake, plenty of exercise, good blood pressure, don’t smoke. All that applies to everyone!

And the other thing to do is start using an ACE inhibitor like Lisinopril as a preventative measure. Not sure how old you want to be when you start, but it’s a good thing to do. A low dose is all you would need.


Reducing A1C certainly reduces renal complications but I think a large fraction of complication risk is attributable to unknown or unconfirmed factors, and renal complications are tightly related to cardiovascular risk. Basically, it is still a huge puzzle.
Here are a few interesting articles on that:

1 Like

My guess:

  • Minimizing variability

  • Lowering A1C to near-nondiabetic numbers without serious hypos

  • Genetics – I’ll be posting some links to videos from The Broad Institute (Harvard/MIT) and TUM soon.