Age of your type 1 diagnosis

My father was diagnosed in his late 30s (type 1).
I was diagnosed at the age of 46 – initially as type 2 (despite my father’s history), because they felt I would have ended up in the ER if I had type 1. Then a few months later, they tested, and I was “officially” diagnosed as type 1. My grandfather also had type 1 in his 30s, although it’s unclear if they even specifically distinguished it as that “way back then”.

Hi Sally. I was diagnosed at age 8 in 1968 and my father and my brother also had type 1 diabetes. My brother was diagnosed at age five, but my dad was aged 27 and they both were diagnosed within six months of each other. I think the reasons for these changes that you described are just because of better detection and much more awareness. If you remember back in those days, there was no internet and I remember my mother going crazy trying to find out information about diabetes from the doctor, who provided very little. All they gave her was a little blue book and that was it!

At that time, my dad was on oral medications and he took something called “DBI.” But since he was not doing so well with it, he switched himself over to U40 insulin. And he did this without medical supervision. Back in those days, we were far more independent. But today, with more awareness and education around diet, insulin requirements, blood glucose testing (remember Test Tape?), insulin pumps, pens, etc., the story has become more complex because more people are sharing their stories. I believe that type 1 diagnoses was just as prevalent among adults back then (again, my dad was in his late 20s’), but many did not know it. Whether this can be proven genetically or not, I am not sure, but since natural selection takes time (i.e., “survival of the fittest”), I don’t think so. I teach genetics in Physical Anthropology courses and I am up to date on the research, and only future research will tell us if there is a statistical increase in type 1 among adults over the last 50 years. So now, you are not crazy! Hope this helps!

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I echo what RGCainMD says, and add a bit that sometimes the insurance won’t pay for tests. I had to switch Endos to find one that would order the tests, which I had to pay for out of pocket. If I had known that the reason the tests were not ordered from the prior Dr -because she knew it wasn’t covered (we didn’t communicate well, one of the reasons for the change in Dr) I would have said do it anyway, I’ll Pay.

We are our own advocates, we must both UNDERSTAND the reasoning of our Dr and also WORK with them to obtain the best care we can…the day’s of being sheep and taking a single opinion of a single Dr. are long over…to the point that most of my Dr. ask ME what medications I need…

FYI - the change in Dx is and has been life altering both in coverages from the insurance, treatments and understanding of co-morbidity… I had it done for my 50th birthday - better than a DNA test for my ancestry…

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Actually, in the 1970’s, “Type 1” and “Type 2” weren’t the terms in use.

There was “Juvenile Diabetes” and “Adult-Onset Diabetes”.

For a while in the 1980’s the terms were “Insulin-Dependent Diabetes” and “Non Insulin Dependent Diabetes”.

I don’t think “Type 1” and “Type 2” came into use until the very late 80’s or maybe even the 1990’s.

The mapping between Juvenile Diabetes and Insulin Dependent and Type 1 is not a straight line one-to-one mapping. I think the terms are a little better today. At same time many in their head map “Type 1” to “Juvenile Diabetes” so misconceptions still exist.

The initials for Juvenile Diabetes still live on today in the JDRF acronym. It is like a breath of fresh air, having seen the JDRF refocus their goal from “cure juvenile diabetes before it kills and it will kill” to “effectively treat T1 diabetes so folks can live long happy lives with it”.

I always found the concept of “Juvenile Diabetes” just so utterly poorly defined. So if I’m diagnosed as a kid then become an adult am I an adult with “Juvenile Diabetes”? That might’ve worked when us kids with Juvenile Diabetes never lived to adulthood but it’s been a long time, baby! And I have the grey hair now to prove it!

I think the Type 1/Type 2 language came about in the mid to late '90s. I was diagnosed in 1991 and at that time my Medic Alert bracelet had “insulin dependent diabetes mellitus” on it.

Guy-
I also remember that blue book. And I remember my Mom’s look on her face. It was a look of terror, fear and hopelessness. (Oh yeah and that dreaded exchange list. The one page of things you could eat!) and I remember she went to the ADA office and started her quest to help find a cure. Board member, events, begging for money, stuffing envelopes. She and all of us were all in. The JDF had just started that year which is probably why she went ADA back than but that was her only resource.
And I know my survival of the fitest is a statement that will take a very, very, very long time but if we all have the genetic makeup to be predisposed to diabetes, it could be a very scary future. Whether it is type 1 or type 2 or both running through your genes. And I do understand that the testing is so much better now than back in 1970 but (my “feelings” here) there are so many, many more of us. And yes, testing maybe a lot better, there are a lot of us. And yes, we are living a lot longer than we use to. I mean, we were told I’d be lucky to make it to 30. So yes again, maybe another reason there are so many of us.
But as I said before, I read the stories of so many of us that were older and thought to be type 2 when really type 1. What has changed in the way the diesase presents itself. Is it environmental? Is it viral/bacterial? Is it our genetics catching up with us?
Thank you for saying I’m not crazy and even if I am a little crazy, I do feel there are more and more of us everyday. And I meet them at work, at the dog park, at the beach, in restaurants. We are indeed everywhere! And I just wish we could figure it out. 46 years and still waiting for the answers.
You must have the coolest job! And if someone would pay my way, I’d go back to school to take classes just for fun! Thanks for all you do,

So funny! I think all parents had Medic Alert brackets for there kids back than. Mine said juvenile diabetes in 1970. My current one says just diabetes and insulin pump. How times have changed.

Dx in '95 and was told I was T2 at that time.

By some estimates the number is much, much higher— a recent study of adults in California concluded that 46% of that population met diagnostic criteria for diabetes— actually if you read the fine print it was 55% and the difference is the 9% that already have the formal diagnosis

I was diagnosed as type 2 at age 29… re diagnosed about 2 hours later as type 1

So, I’m not really quibbling with your point, but there is an interesting phenomenon here that was made famous by Annie Dillard in an essay called “Seeing” from her collection Pilgrim at Tinker Creek. She explains how when looking into the eponymous Tinker Creek when first moving into a house, she saw nothing: a sterile, lifeless stream. After thinking about the nature of “seeing” itself, she pays attention and starts to notice that there are fish in the stream. And frogs. And insects. And plants. And all kinds of things that she didn’t notice when she was just looking at “a stream.”

The point being, because we notice something more doesn’t mean that it is actually more common. Sometimes it’s a matter of seeing more clearly what we’ve learned to pay attention to. I think there are independent lines of evidence to indicate that Type 1 and 2 are becoming more prevalent in some areas of the world, but I also think what you’re describing is that your awareness of how many people have diabetes is changing. And I suspect your awareness is running far ahead of the “natural increase.”

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It’s really kind of a tangent in that it has nothing to do with diabetes, but if this subject interests you (how we perceive things), read chapter IX of Mark Twain’s Life On The Mississippi. It will permanently change the way you interpret your own perceptions.

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Well, I’m just talking official diagnoses, which is the only way to compare between nations or areas. All kinds of estimates are out there. But according to the CDC, the ADA, and other organizations, it’s about 9% of Americans. And about 9% of Canadians. And then the number varies quite a bit by country.

If 50% of Californians are actual diabetics, then somebody somewhere is doing math in a pretty horrifyingly poor fashion. Now, perhaps they are estimating the number of people that have some level of glucose impairment (fasting over 100mg/dL)? That would lump all prediabetics into the category “diabetic,” and that would also be an estimate that would be completely unsupported by actual data. Or maybe the study used some other measure? We don’t do consistent enough testing of metabolic panels in this country to get solid numbers on the number of citizens with impaired fasting numbers (since it doesn’t lead to a diagnosis).

Anyways, I’d love to see that study if you can dig it up. If 50% of Californians are diabetic, it supports one of my medical crusades quite nicely: to let people know that obesity does not equal diabetes :slight_smile: That kind of percentage, and the increase in diabetes diagnoses necessary to support that percentage, far outsrips the absolute number and increase in those who are obese in California.

That’s a point that a lot of people try to argue on this forum. I don’t have a particular opinion on the matter but a lot of very firm ones insist that there is no such thing as “prediabetes” and it’s either diabetes or not. Just google “half of California has diabetes” it was a ucla study and I read the highlights in the la times. It wasn’t discussed much on this forum because it was framed and discussed by the press in ways we don’t take too kindly to around these parts such as preventability and obesity and such.

I actually tend to agree that an actual diagnosis of prediabetes is clinically the same as “early Type 2.” However, failing a fasting glucose test isn’t how prediabetes (or diabetes for that matter) is diagnosed. How did the authors of the study in question estimate that the number was that high?

So, I dug up the paper. It’s a policy brief, not a peer-reviewed paper (so it’s basically a position statement), and the estimate is based on a modeling exercise rather than any kind of survey or medical data. The numbers they state are pretty clear: 9% of Californians diagnosed diabetic; 46% of adult Californians estimated to have prediabetes.

The important thing might be to ask why the estimated rate of prediabetes has raised so much in California in the last couple of decades. Obesity rates in California have stayed fairly stable in the last half decade, and have risen only a bit on the last decade (sharply before that). The population is aging and experiencing a rapid ethnic makeup change. That may have something to do with the estimated levels of prediabetes (or, more accurately, it may have something to do with how the model predicted California would have such a high prediabetes rate).

But if 70% of those diagnosed with prediabetes will go on to have real diabetes… you see what I mean

I just meant to show that by some estimates the 9% figure is way too low… so I guess it depends on whether we consider prediabetes to be the real thing or not… if so then clearly the number is much higher than 9% whether the particular models of that study (or whatever it is) are right on or way off… and if prediabetes doesn’t count then it’s maybe somewhere near 9%

I do, but by the time 70% of those prediabetics have diabetes, many of the actual diagnosed diabetics will be dead. It’s not a simple matter of “x number of prediabetics means we’ll have y number of diabetics total down the road.”

You can probably do a safe conversion from the 30% of prediabetics who are likely to be diagnosed as Type 2 within five years. If you trust the modeled number of prediabetics in the first place. But also, consider that treatment of prediabetes is coming along quite rapidly in the US (thanks to the focus on diabetes in general and obesity), and it’s likely that the number of prediabetics that will become “full-blown,” diagnosed Type 2s (or 1s) will likely be going down. The only place where it makes a lot of sense to me to talk about “prevention of diabetes” is in those diagnosed with prediabetes. And I’m pretty sure that class of people (if they know they’re prediabetic) is getting inundated with messaging about how to halt or slow the progression to Type 2.

Thanks for the post Sally. Others have responded so eloquently, I’ll be brief with one thought. T1D, as you should know, has nothing to do with diet or excercise. None of us were diagnosed because of lifestyle choices. Too much misinformation out there, that when I read a fellow T1D perpetuate it I gently need to call it out. Thanks!

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Type 1 at 30, 30 years ago. What confused me ATT was the numerous mentions of Juvenile - my son was a Juvenile not Me. No symptoms until 4 days before hospital - started with blurred far vision, constant thirst and resulting constant urination and highlighted with weight loss, bad breath and lack of energy.
Heavy after work alcohol consumption was minimized 2 years earlier - may have been a contributor.
IMO our heavily processed store foods loaded with white poison and syrups is hazardous to health.
I’ve met half a dozen T1Ds and many T2Ds several on insulin.

I was 19 in 1978…almost 40 years ago. Never thought of myself as average.

When I was diagnosed, age 6, in 1945, there were no T1 and T2 designations. Every person diagnosed with diabetes used animal insulin. That insulin worked rather well for all diabetics, even the ones that would be diagnosed as T2 at the present time. I had a next door neighbor who was a grandmother. She was obese and using the animal insulin. She did very well with insulin, and no oral medications.
It was several years after my diagnosis that the types T1 and T2 appeared, but the animal insulin was still the prescribed treatment for all diabetics, until insulin resistance was known, and an oral med was introduced.
Dr Joslin’s publications showed that most T1 people had a very short life span in the 1940s when i was diagnosed Some of those people diagnosed in the 1930s and 1940s are still alive, and do not have any serious diabetes related complications. I am now 77 years old, with T1 for 71 years, and my only complication is neuropathy. No medication needed for that at the present time.
I suspect that some of the adults diagnosed in my era were T1, but it was not known that adults could be T1, so they.were diagnosed T2 because of their age. That makes it seem like there were very few T1 diagnoses back then.

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