Age of your type 1 diagnosis

Since some people still refer to type 1 as “juvenile diabetes,” I guess I was a very late bloomer! I was first diagnosed as type 2 at age 70, with a FBG of 289 and an A1c of 11.5. I was low normal weight when diagnosed, but since type 2 drugs weren’t particularly effective, I had to practically starve myself to get and keep my A1c at or slightly below 7.0. When I got down to 106 pounds, I decided I just couldn’t afford to drop any more weight, so I added a few more carbs. That pushed my A1c to 7.6, so my PCP finally decided to refer me to an endo, who diagnosed me as type 1 eighteen months after my original diagnosis.

There are no other members of my very large extended family with type 1, though there are three (two of my five siblings and one of my 14 uncles and aunts) who developed mild (able to easily treat with slightly adjusted diet and/or metformin) type 2 in their 60s or 70s. I have no idea what might have triggered my diabetes, as I don’t think I was ever sick in the year previous to my diagnosis.

I’ve never met another type 1 in person that I’m aware of. Even during the years I taught high school, I don’t recall ever being advised that I had a diabetic child in my class, which I’m sure administration would do if that were the case.

Carol

At 47 I was diagnosed as Type 2. Fast forward 15 years, all the while slowly failing on oral medication and low carb dieting, when I insisted on seeing an Endocrinologist. She found I was positive for GAD antibodies and had a very, very low C-Peptide. Ding, ding, ding. Now on an insulin pump with an A1c of 5.9. My internist was ignorant and so was I. My lesson learned - I must be my own advocate in all things medical and that starts with being extremely well informed and ditching trust.

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First, I don’t usually get upset when someone has a different opinion than myself. It’s always good to have two sides taking. And I know sometimes I open up some difficult topics but I just wonder sometimes.
So yes I know when I was diagnosed it wasn’t type 1 or type 2. Those “labels” came later. And yes now we have such better treatment and testing. That has been talked about plenty, you know the wonderful urine testing, one shot a day and that great exchange diet. And back than, it was a blood test to see what your blood sugar was. There was no tests for insulin production, or genetic testing. Pretty simple, sugar diabetes, juvenile or adult.
That being said, don’t you think there are more and more of us everyday? Like I said before, I knew no one who had diabetes when I was growing up. And maybe I know so many because I go to conferences and workshops and support groups but wow, everytime I go to another support group, there are different people every time. It’s not the same people all the time. And even at work. I work for a large company (ok, I’ll say it I work at Costco!) and in my warehouse a lone there are 4 with type 1, 3 with type 2 and four others who have family members with type 1. That’s a lot, don’t you think?
And yes type 2, many, many more than type 1 but (I’m not a numbers person, I’m a feelings kinda person) don’t you think there is a lot more of us and that number keeps growing. Yes, there was probably many that were misdiagnosed back in the day or never diagnosed at all but I just seem to be seeing more and more of us every day. It really concerns me how many there are and how many are not getting the right diagnosis.
From someone who knew no one growing up with diabetes, I know far to many now. And while I love my fellow PWD, I wish there wasn’t so many of us! Is there an answer for why there is so many of us now? Is it because we as humans have that genetic makeup? Will it be our undoing? And if genetics are the main reason, is it because the genetic pool being on the planet for so long, is finally catching up with us?
I know, I know I am asking questions there is no answer to right now. But I just sit here and wonder how we got into this mess and if there is anyway to get out of it.
And I may not always agree with what some people say or think, I never take it personally and am so glad we live in a time where can voice our opinions and still be nice to everyone!

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You know, part of this is a change in social acceptance of illness. I did know two Type 1s in my youth: my grandmother and great-grandmother. But I didn’t know my grandmother was Type 1 until 15 years after she died, because (like so many people) she thought being on insulin was a moral failing. She was active, very fit, of strong character, and still thought that having any kind of diabetes and being on insulin was some kind of reflection of her moral worth.

We know quite a bit about the numbers when it comes to diagnoses of diabetes of different types (and, for the record, there are a LOT more than two types of diabetes) from a scientific standpoint. We know, at least Type 1, that the numbers are pretty consistent across nations, ethnicities, ages, and lifestyles. While it is possible that (as Jen brought up) there are more environmental contaminants that might trigger autoimmune responses, I’ve never seen anything indicating that there are a lot more Type 1s than there were in generations past. At least not in numbers great enough to be “statistically significant.” One of the reasons we don’t meet a lot of diabetics in “real life” is simply enough because many people don’t talk about such things outside of families (and sometimes not even in families).

I was diagnosed Type 1 at 17. However, if you read about Dr. Elliot Joplins Diabetic Ledger(which documented the age, diagnoses, and date of death )…a lot of them were adults at diagnoses…including his own mother who died from it. So I think it’s always been older then we thought.

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Insulin was only discovered in 1921, the year my late husband was born. So we certainly aren’t talking about ancient history here. Before that, those who acquired type 1 in childhood rarely lived long enough to reproduce and carry on the genes. So it makes sense that there would be more type 1s in the population now than in decades past. Over the years the exogenous insulin has been improved, along with knowledge of appropriate care. While I have no statistics to prove it, it seems reasonable that with each generation the improved care of type 1 diabetics would allow a higher percent of them to live long enough to reproduce.

We don’t seem to know much yet about non-genetic causes or triggers, though I don’t doubt that there may well be some factors there that might also contribute to the increase.

I can’t track down the articles at the moment, but I’ve read that there are definitely more cases of Type 1 diabetes than there were a few decades ago. The same is true of virtually any autoimmune or allergic condition you choose to look up. I think there is little doubt that there really are many more cases of these diseases now than there were 30 years ago. The question is what’s causing such a rise.

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As have I.

In the interest of adding some fact to the anecdotal discussion, I found this in Scientific American from 2012:

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Thanks for that. I knew I’d seen reports like this but couldn’t recall just where.

Here is an interesting article. I live in MA

http://www.bostonmagazine.com/2009/01/diabetes-in-boston/

The article is from 2009 and ends with the CDC getting involved, but nothing beyond that. I tried to find if there was ever any follow up and found this, pub’d 2012:

http://www.mass.gov/eohhs/docs/dph/environmental/investigations/wwn-prevalence-report.pdf

Basically seems to say there was a cluster but it appears to be due to random chance: a higher-than-average concentration of families with genetic risk factors (see p. 25).

I also came across this. Compiler is an independent amateur affected by T1 (herself and her son) so take it with the appropriate amount of salt, but she’s amassed a lot of data on the increased incidence of both T1 & T2 among kids and finds in favor of environmental factors:

Can genes alone explain the increasing incidence?
No.
Essentially all researchers agree that changes of this magnitude cannot be explained by genetic changes alone. In fact, studies are finding that high risk susceptibility genes for type 1 diabetes are becoming less frequent over time in children, while more children with low to moderate risk genes are developing the disease more now than in years past
http://www.diabetesandenvironment.org/home/incidence

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So, I just did a rudimentary search on scholar.google.com for “increase in type 1 diabetes diagnoses” and filtered by “published since 2012.” I take it back: there have been many, independent studies demonstrating that Type 1 diagnoses are more common in youth (by as much as a 2.4% per year) in the last decade than before. Environmental or epidemiological causes are most likely, although the causes haven’t been scientifically determined.

So, I take it back: it’s clear that incidence of Type 1 and Type 2 is increasing. I’m highly skeptical that lifestyle (diet and exercise, anyway) has anything to do with the increase in Type 1 in children, and there doesn’t appear to be any documented increase in Type 1 amongst adults (although there should be in another 10-20 years because of the bump in children). The trends appear consistent in Europe and the US. Haven’t seen large studies from other geographic areas.

Yes, maybe it’s because I am very open and vocal about my diabetes. I wear my life saving equipment proudly and will talk to anyone about it. And yes sometimes, I get upset at what people think about diabetes. We are still very much behind the times with knowledge and diabetes. But as far as many with diabetes, I find most try and hide it. Many still to this day feel the shame and blame. The general public still thinks we caused our diabetes. Like any of us wanted this! So while knowing so many people with diabetes could be because I am so open with it, and I have always been that way. Mainly as a child for safety reason but I never felt ashamed of my diabetes, but from a social interaction I think many still hide it.
So, I have meet oh so many people with diabetes and the number keeps growing. Just this past couple months hiring seasonal employees, there are another 2 with diabetes and another 5 with family members. The numbers are staggering. And it makes me very sad everytime I hear of another person diagnosed with diabetes. We really don’t deserve this and what is the reason for this huge number and why is it still climbing?

I suspect the true reasons are:

  1. No time (there is a nation-wide shortage of primary care physicians) and

  2. The extreme difficulty involved in getting health insurers to cover the cost of auto-antibody testing until after a patient has “failed” treatment with at least a few “conventional” Type 2 medications.

I encourage you to not be so quick to use terms like “lazy”. Yes, I’ve come across more than a few lazy physicians in my 20-some-odd years of practicing medicine. But the vast majority work extremely long, hard hours after putting their lives on hold during their minimum of 12 (depending on specialty) years of post-high school education. And thanks to the excessive documentation required by health insurers, more and more of these hours are not “billable”.

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I found the following article interesting, regarding genetic risks associated with T1D.

Genetic Risk T1D

That may lead to the conclusion that people diagnosed 100 years ago, didn’t live long enough to have children, thus lower numbers of T1Ds. As we started using insulin in 1920’s, T1Ds started to live longer, and to have children. For many years, women with T1D were advised to not have children, which has changed over the years now that newer insulins, insulin pumps, CGMS, etc, allow tighter control.

I have no history in my family of T1D, and many siblings. However, I know that due to breast infection, my mother did stop breast feeding me early. The article mentions some correlation with bread-fed children having lower risk, possibly due to improved development of their immune system. Don’t know the statistics, but I think for a while, breast feeding was a downward trend, maybe resulting in higher trend of T1D.

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This cluster in the Boston area was talked about in a book I read a few years back. The scary thing about these clusters is that the CDC doesn’t really look into diabetes clusters. Maybe with more of them, they might.
But it makes me feel a little better because I can now say, i might not be losing my mind. There are more of us both type 1 and type 2 and as it has always been, we really don’t know why. And yes like most of us, my family a disease told a cure in five years and 46 years later, still waiting. And waiting with millions and millions of us. I know we all have our opinions on why and how diabetes happens. And none of us have the same story but the numbers are scary.
So while there are some numbers to support my belief that diabetes is on a major rise, it really doesn’t make me feel better. Having some really smart people locked into a room and told they need to figure it out would be great. But of course we just can’t do that. But we will continue to poke our fingers many, many times a day, take a medicine that keeps us alive everyday but could also kill us if we miscalculate a bit, wear more equipment than any one person should and have to pack like we were going on a two week trip everytime we go out the door. Life just isn’t fair. But I know, I know at least I have a life unlike those that came before insulin. So I will continue to meet and welcome the ,any that are joining the club and wonder. Everyday, wonder, WHY?

I was 10. 1962.

I have only met one other T1. And I don’t hid my T1. There are a lot fewer of us.

T1 is truly a different disease than other types of diabetes; it just displays the same problems.

It was called Juvenile Diabetes.

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Ugh. SO glad I didn’t have to go into DKA to prove my “eligibility.” I never actually had 'em and am not sure they were even available back then (1983).

I’ve done a fair bit of reading on this topic over the past few years. Reading about how the immune system works, the histories of allergic and autoimmune diseases, and theories as to why things may go wrong. If there’s one thing I’ve gleaned from all those books, it’s that the immune system is extremely complex and utterly awesome. Likely, whatever it is that triggers the immune system to mistakenly attack something that is harmless (whether that be one’s own cells or an external, but harmless, substance) isn’t only different from person to person, but may be differnet within the same person at different times. I think this is why research into causes and cures has seemed to be so slow. And yet, it hasn’t really been slow, when you consider that we understand so much more about all of this than we did a decade ago.