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Change in Age of T1 Diagnosis in Recent Decades

D

david4503

Well-Known Member
Messages
181
Type of diabetes
Type 1
Treatment type
Insulin
“It is now 14 months since my wife was diagnosed with Type 1 at the age of 78.”

It won’t help the OP at all for me to say this, but I am flabbergasted to read statements like this. Granted, I haven’t hung out much in diabetes forums of late, but I can’t tell you how weird it is to see a 78 year-old getting a Type 1 diagnosis. It seems I’ve been transported to an alternate universe. OTOH, I’m getting that feeling a lot lately and not just on diabetes forums. I wouldn’t rule out the possibility.

Mod addition/edit by EllieM
The first sentence is quoted from @grahamrb 's thread about his wife's progress.
Old thread is here
Type1 progress | Diabetes Forum • The Global Diabetes Community
I have moved this discussion to a new thread so as not to take that thread off topic.
 
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Unfortunately, some people still believe the myth that Type 1 is a childhood disease. It is not. More than half the people with Type 1 were diagnosed over the age of 20. I believe the eldest was 91. Despite this, the myth remains and something like 30% of people diagnosed with Type 1 as an adult were first misdiagnosed with type 2. It is sad. It shouldn't be a surprise that someone was correctly diagnosed with Type1 at the age of 78 ... but it is.
 
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It’s “not just a childhood disease” now but my question (which I’ve tried to get an answer to a number of times on this forum) is when did significant numbers of people start developing Type 1 in their 30s, 40s, 50s or later? Unless there was a gigantic conspiracy to cover up this phenomenon or doctors were somehow unaware of patients becoming fully insulin-dependent at these older ages, which I seriously doubt, it just wasn’t happening. Where is the evidence that it was?

What you’re calling a myth wasn’t formerly a myth, it was just what the medical community was seeing in their treatment of different types of diabetes. There were no c-peptide tests, which are indirect and open to interpretation, being used. Diagnosis of Type 1 was only made when the symptoms were severe, unmistakable and fatal if not immediately treated with insulin. Also, Type 1 is an auto-immune disease that doesn’t stop killing beta cells until the patient is fully insulin-dependent. This used to happen very quickly. Any misdiagnosis didn’t go on for long. Now, Type 1 onset sometimes happens slower, taking years from milder symptoms to more severe ones.

So I repeat, something has changed in terms of older people getting type 1. If you have studies or statistics that say otherwise, I’d love to see them. I have asked for anybody with links to post them.

As for 79 year-olds suddenly getting diagnosed Type 1, I can assure you that this would have been front-page news in the 70s, 80s or 90s. It simply wasn’t being reported and I subscribed to various diabetes journals, not just newspapers. Although not the National Enquirer or some of the other supermarket tabloids. They might have run a story like this.
 
@david4503 I don't have statistics and medical papers but my understanding that people in their 30s, 40s, 50s or later were getting Type 1 diabetes in the 1970s, 80s and 90s. The problem was that they were not getting diagnosed with Type 1 and sadly were dying early because of their misdiagnosis.

Sure c-peptide testing has only recently become introduced but people were diagnosed in their 30s, 40s, 50s ... with Type 1 before it became "common". I know this because I was one of those people. I consider myself very lucky.

So, I disagree that something has changed in terms of older people getting Type 1. The only thing that has changed is that more are being diagnosed. And that is a good thing compared to the alternative.
 

Where in the world did you ever get the idea that thousands or tens of thousands of undiagnosed older Types 1s (the same number of older people now diagnosed as Tyoe 1, presumably) were dying BITD because they weren’t diagnosed or put on insulin? I’m sorry, but that’s not even remotely true. It sounds like you’re attempting a bit of revisionism in order to explain something which is, as I indicated, a big question mark.

To be clear, there was, ironically, less misdiagnosis going on before the diagnostic tests arrived than after. A lot less. There’s also apparently a lot more confusion today about who falls into what classification than there was back in the olden days. This may be difficult to understand or accept but it is what it is. Anybody who was first diagnosed as Type 2 and then re-diagnosed as Type 1 ten years later should be able to see for themselves that something in the diagnostic and classification system is very wrong. It’s self-evident.

Now. I’m not looking to rock anyone’s world. I just want to know what’s going on and just as important, why. There is a lot of public discussion about the fact that many more kids and young adults are getting Type 2 — and plenty of good explanations for why this is happening. The same kind of discussion should be happening with Type 1 and older adults but I’m not hearing much about it. My suggestion is not to believe that diabetes has finally arrived at some Age Of Enlightenment where the truth has finally been revealed. Not even close.
 
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@david4503 your insight is interesting.
Can you direct me to some research papers that discuss this so I can become more informed on the matter?
I have read a number of articles about the rise in the number of people being diagnosed with Type 1 around the world with the suggestion that this is caused by environmental factors, However, I have read nothing which suggests the age of diagnosis has changed.
 
Interesting that you asked about the increase in type 1 diabetes rates. I read this article just the other day:
https://jme.bioscientifica.com/view/journals/jme/51/1/R1.xml#:~:text=Abstract-,A series of studies have reported a constant global rise,destruction associated with humoral immunity.
Edited: It's an older publication.
 
This is similar to some of the articles I have read. The only mention of age of diagnosis is that it decreases, not increases as David and I have been discussing.
 
In Response said:
This is similar to some of the articles I have read. The only mention of age of diagnosis is that it decreases, not increases as David and I have been discussing.
Click to expand...
I responded to David's post: 'There is a lot of public discussion about the fact that many more kids and young adults are getting Type 2 — and plenty of good explanations for why this is happening. The same kind of discussion should be happening with Type 1'.
The article discusses reasons why there is an increase in type 1 diagnosis.
 
And should we include querying the numbers and ages of people with gall bladder problems and removal?
I'd never heard of it before about 4 years ago, now my 21 year niece and 65 year old friend has both had theirs removed and there are many others
 

Thanks for the link. This study doesn’t seem to address the age question but they might have some interesting data collected on that aspect. I can see why their first concern would be why but the who part is also important. No doubt whatever the story is here it covers both aspects.
 
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@david4503
I know there has been an increase in type 1's, but I don't agree it's a huge surge of just adults lately getting it or that people get sick enough to eventually get diagnosed right. Type 1’s were and still are rampantly misdiagnosed as type 2’s. I was for over 8 years. It does not necessarily become apparent at any time you are a type 1 because when misdiagnosed as I was, they just think the drugs aren’t working well enough and they put you on insulin. And since that is what you needed as a type 1, it never becomes apparent you are actually a type 1. I never got sick, the drugs weren’t working well and gave me side effects. They ended up putting me on insulin because the drugs weren't working to control my BG levels satisfactorily and I also refused to take them anymore. In my case I had even asked my pcp and my endo if I could be a type 1 as I had an uncle that was a type 1 and was told no, that I was a type 2 and they still never tested me. Being a type 2 never made sense to me. It didn’t run in my family, type 1 did, I swam 75 gym pool laps a day, I ate very healthy as a vegan, but I was overweight, not obese, but overweight and I believe that’s what helped them “assume” I was a type 2. I don’t know if I ever would have been diagnosed right if I hadn’t switched my pcp doctor who sent me to a new endo, who then tested me immediately without me even asking, as at that point I had given up asking. I was positive for the antibodies and I was making 0 insulin. I was surviving and not sick because I had been put on insulin. It turns out that’s a pretty common story.

That is how rampant misdiagnosis is. Because really, I ate healthy, I was highly active and type 1 ran in my family, and I asked if I could be a type 1. And yet I was misdiagnosed for over 8 years until I switched doctors. So yea, a lot of people died, got really sick or maybe survived with insulin still misdiagnosed as a type 2’. And the endo that misdiagnosed me was considered really good. The endo that tested me and diagnosed me right, she was an adult onset type 1 herself and luckily was more likely to spot it.

Just last month a late 20’s person here went to emergency feeling sick with high blood sugars, an active person that asked if he could be a type 1 and was told no, that he was too old, he was a type 2 and sent home. The next day they called him and told him he was a type 1 and to get back there. Luckily they had ran the tests.

So the myth still exists even in the medical field. I just ran into an orthopedic doctor that when I said I was a type 1, he assumed I had gotten it as a kid. I had a chiro just 5 years ago say to try an herb that could work to cure my diabetes , I reminded her I was a type 1 and it wouldn’t work on me. And her reply was but you didn’t get it as a kid you can get rid of it. She had been a neonatal nurse for years before becoming a chiro.

So yes, I can believe tens of thousands died from being misdiagnosed in the past. Right now 64,000 people are diagnosed with type 1 every year in the US alone and 50% of those diagnosed are over the age of 30. There is a lack of research to ever know how many were misdiagnosed in the years past for obvious reasons. But there is no reason to doubt that a lot were and that a high percentage of adults went misdiagnosed since they now know how prevalent it is in adults, and that can be carried to infer that there were a lot of misdiagnosed adult type 1's in the past too.

But no doubt about it, type 1of all ages in increasing.

  • Approximately 1.84 million Americans have type 1 diabetes. (A few years ago it was 1.25 million).
  • By 2050, 5 million people are expected to be diagnosed with type 1 diabetes.
  • An estimated 64,000 people are diagnosed with type 1 diabetes each year.
  • 200,000 people under the age of 20 years old have type 1 diabetes.
  • Between 2011 and 2012, 17,900 children and adolescents under the age of 20 were diagnosed with type 1 diabetes.
  • There was a 21% increase in people diagnosed with type 1 diabetes between 2001 and 2009 under the age of 20.
  • By 2050, 600,000 people under the age of 20 are expected to have type 1 diabetes.

It’s still too common now, and it was obviously more common not that many years ago. And supposedly the medical field is supposed to be more aware of it now and yet there is still a huge lack of information even in the medical field. Somewhere between 30-75% of type 1's are misdiagnosed as type 2's first. Depending what study you read. Generally it is accepted that it is around 35-40% currently. And that is only the known ones. If I had stayed with the same doctors, would I ever have been diagnosed right?

Which is why when I hear a type 2 say they are struggling and not getting the results they think they should, I always say, when things don’t make sense you could be a type 1 instead, to keep it in mind.
 
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I’m working on finding more studies but it would be very odd if none of them addressed the demographics of all these new cases. That’s always a concern anytime a disease is claiming more victims. In any case, it shouldn’t be much of a stretch to accept that if a disease is on the rise, it may be affecting some groups more than others.
 

We agree on a few things and disagree on others. I agree that there’s a lot of misdiagnosis, misinformation and confusion happening. But I think medical researchers will eventually sort out the numbers on what groups are being most affected by the rise in Type 1 cases and explain the why of it. It will be harder to come up with data on the situation decades ago but it’s probably doable. Then you will see the trends clearly in terms of older people somehow being misdiagnosed as Type 2 when they were Type 1.

Type 1s have always had a problem with some kind of misdiagnosis or delayed diagnosis. In the past, however, the misdiagnosis didn’t go on for long. In my case, a few weeks. The part I’m not sure you are grasping is that in the past it didn’t take 10 years to correct any misdiagnosis of a Type 1 — but it can and does now. The older people you think were dying in the past of mistakenly diagnosed Type 2 really had Type 2.. What they didn’t have is all the modern blood sugar testing, insulins, stricter regimens and drugs to prevent and treat complications that we have now.

None of this matters as far as what you’re doing in your case and how it’s working for you. But it matters in terms of the big picture and fighting this disease. That’s why I brought this issue up.
 
I
I see a lot of dismissive comments and assumptions in your posts. The honeymoon period can be years for some type 1 diabetics. Misdiagnoses can be for years. A lot of what you claim has had no back up from you in terms of evidence of your claims. Maybe listen to those who have been there and are sharing their knowledge?
 
Sorry if you feel somehow offended but I think your take on my posts, which you’ve apparently made a point of reading, is unfair. People who read things that challenge their beliefs sometimes react the way you have. If you have a specific disagreement with anything I’ve said, you might want to just state it. Mischaracterizations never do anyone any good.
 
There's a really interesting study here about happened when an outpatients' clinic in Scotland gave a cpeptide test to everyone who had had T1 for at least 3 years, 859 patients.
13% had cpeptide levels high enough to warrant further testing, and in the end 5% got reclassified as T2 and 2% as MODY. 1.5% came off insulin altogether.

https://diabetes.acponline.org/archives/2020/11/13/2.htm

There is also some data about age of diagnosis in the study group. 364 were diagnosed at less than 18, 221 age 18-30 and 374 over 30. 2.5% of the young diagnosis T1s had highish cpeptide, 15% of the 18-30s and 26% of the over 30s, though it doesn't tell us the age breakdown of those who ended up with a non T1 diagnosis.

So people can be misdiagnosed as T1, which was something that really surprised me when I first read this article.

As regards the current rise in diabetes, of all types, I theorise that 30 years ago a lot of people died with T2 (but not necessarily of it) but never knew they had it? Certainly, anecdotally quite a few T2s come to these forums with a diagnosis from a screening blood test, rather than actual symptoms. So that might account for some of the increase, though I suspect only a small part. And people are living longer now, so they are getting more diseases that become more common as you age. As for the rise in T1, is that part of a general rise in autoimmune disorders?

I admit that as a child I absorbed and believed the mantra that if you were going to get T1 you would get it before you were thirty, and you wouldn't get T2 till you were older. However, I certainly wasn't reading papers on diabetic care at the time, so I can't be sure how accurate this belief was.... Plenty of commonly held beliefs about diabetes today are woefully inaccurate if you know much about the subject.
 
I will check out that study. Looks interesting. First reaction to your other points: I can’t say I would be surprised if some people were misdiagnosed as Type 1, although who knows how many. The rise in cases at all ages will be more challenging to figure out than any issues with misdiagnosis I’d expect; they still haven’t nailed down how the whole virus/triggering mechanism works with Type 1.

With T2 deaths, no need to theorize. There’s long-standing evidence of high percentages of the T2 population who were never diagnosed (50% or thereabouts is one figure I recall) and another significant percentage diagnosed and treated very late, as in 10-25 years late. Plenty of time for complications to occur. This has been improving with better screening. Autoimmune disorders: Yes, on the rise generally even accounting for better detection.
 
I can see how all those grown up T1's (especially the LADA's with a much slower progress than the classic childhood T1's) have been and still regularly are misdiagnosed for life.
They get diagnosed with T2, progress to insulin after a while, just like their doctor expects with T2's, and spend their life as a T2 on insulin.

I would have been one of them if it hadn't been for my own curiousity.
Diagnosed at 39, having been fat all my life, nothing to suggest anything other than T2.
Was started on insulin after a month because cutting carbs plus gliclazide didn't get me below 11, ever. Mind, it would have taken a lot longer to start insulin if I'd left things up to the practice nurse, but I was rather pushy, being frustrated by doing all the right things with very little effect.

Treatment worked a charm once mealtime insulin was added to the basal, another month later.
Never did it occur to the practice nurse I could be anything but a T2, she had so many patients progressing to insulin.
I was suspecting T1 but had not much reason to push trying to find out, having brought my hba1c nicely back into the 30's.
I never would have guessed if I hadn't been doing lots of reading on the internet.
If I hadn't, I'd likely have been a well managed T2 on insulin forever, things were going well so no need for extra investigation.

There must be many, many people like me.
All T1's but registered as T2's.
Now more people become aware you can get T1 at any age, more people are tested for it and more T1 diagnoses are made for people who would have been T2 without testing.

The only reason I asked for a referral 2 years later to get tested for C-peptide and antibodies was that it looked like T1's might get the Libre funded, and I'd been self funding for two years by that time.
Practice nurse had no idea you could actually get tests to see if you might be a T1...
 
“Was started on insulin after a month because cutting carbs plus gliclazide didn't get me below 11, ever.”

This is the part that intrigues me. With classic Type 1, the gliclazide would probably not have done a thing for you unless maybe you were diagnosed very early. So then, with this being the 1.5/LADA type, were you and your doctor watching your insulin requirements steadily rise? And were they rising to levels well beyond what the doctor should have known were abnormal for Type 2 — eventually to a point where they should have realized that this patient is now fully insulin-dependent?

Which raises another question for me. How do we know for certain that all 1.5/LADA patients are or become, in fact, fully insulin-dependent? Are we just depending on C-Peptide or other tests to confirm that? The odd thing with classic Type 1 is that some people retain a slight amount of insulin production even years after onset, but not enough to be useful. Could it be that with 1.5/LADA, a useful amount of production remains in some patients, which could help with their control?
 
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