I don’t think it is a case of more adults getting Dx’d as much as more adults getting Dx’d correctly. As was said in the other replies, the age of onset as a determining factor in what is Dx’d makes no sense. I was 30 years old. Recently retired as a ballet dancer (so active and only used food as fuel). I rapidly lost weight - without trying to - went from 115 lbs (my working weight, I am 5’6") to 100 lbs. Yet, I was Dx’d with T2 (this was 1985) despite no t2 (or any type of D) in my family. I didn’t know anything at all about D - why would I? So I didn’t challenge the Dx. There was no internet and forums like TuD, so I had no one to talk to, to describe my symptoms and my new Dx. If the great forums that out there existed I am sure someone would have told me to see an Endo. It took being found by a neighbor in a coma from DKA to get the correct Dx. And now, I get angry at all the scolding I got for “not doing the right things” when my bg wouldn’t go down. I was being treated with diet and exercise (and I didn’t know enough to ask about what additional things I could do) I was also told to watch my weight, and maybe lose some! I should have thrown off the exam gown and asked where I was supposed to lose the weight!
I think I read somewhere that adult onset of T1 is about 10% of new Dx for T1.
I think I mentioned this above, but for another data point: my dx in 1983 was for “diabetes mellitus (juvenile type)” though I was 28. Still reads that way on my medical record.
One of my all-time favorite books. I assume you mean the chapter about memorizing the river as a riverboat pilot and never being able to see it the same way again (maybe not totally irrelevant to living with T1). Truly astonishing what the mind can accomplish. I’m reminded of it driving a small car in a northern city and having to learn all the potholes.
Except you can see potholes… I have drawn many parallels in my own mind between what I do for a living and managing diabetes but do not know how I could explain them here
Well, Gales Creek has been around much longer than that. My brother, who was diagnosed at age 5, attended Gales Creek prior to 1968. I think Gales Creek has been around since the early 60’s if not sooner!
Hi Lisa, indeed studying the genetics about diabetes evolution is quite fascinating. I believe it’s only a matter of time before a cure is found. Stem cell research is promising!
I don’t know if you remember me but I was diagnosed at 50 with type 2 even though I had the Gad 65 test with way high numbers! My doctor refused to acknowledge possibility of type 1. Well I was with that doctor for 5 years getting worse and he still didn’t believe me! He ended up refusing to see me Again. He referred me to a doctor he knows across the street. I never went there! I went to Vanderbilt in Nashville. Funny how they told me I am a type 1 not 2! I do still produce some insulin. They put me on low dose of long and short acting insulin. I was starving before. I’ve gained about 8-10 pounds. I’m back to almost normal weight! You encouraged me to get a different doctor, so I want to thank you for that!
[quote=“artwoman, post:61, topic:58025”]
I think I read somewhere that adult onset of T1 is about 10% of new Dx for T1.
[/quote]I actually read a study not that long ago that showed that among total people with T1, around 52% had onset below age 30 and 48% at 30 or over (I believe, quoting the numbers from memory). The majority of those over 30 were at least initially diagnosed a T2, however. They said that the reason onset of T1 seems more commonly in younger patients is because the percentage of patients with T1 vs. T2 is higher in younger patients. Among older patients with diabetes, the vast majority are T2, so ever though around the same number of those patients are in fact T1 as in younger patients, their numbers are so dwarfed by the number of T2s as to appear insignificant. They did say that among those people identified in the study, 100% were on insulin by the end of the first year – so people were not medically falling through the cracks – at least not in terms of needed treatment.
I think I read the same study @Thas, and another interesting stat was that a full 20% of those diagnosed Type 2 are later re-diagnosed as Type 1. They were initially diagnosed due to age (like me), obesity, or family history. Or because many GPs just don’t know that adults get Type 1 rather frequently (well, in terms of those that get Type 1 at all).
I think this is clear from the scientific evidence, and I agree with your conclusion. Here is the best summary of evidence I have read so far about the rising incidence of T1, from Diabetes Journals. The source is hard to impeach.
Yes–there’s an asymmetry there that skews perceptions I think. Of course we know that T2 is disturbingly rising among the young, but as a rule it’s still something you’re much more likely to get in middle age or older, and so it actually makes almost as much sense to call T2 “mature onset” as in the old days, whereas referring to Type 1 as “juvenile” makes almost no sense given that nearly 50% of cases aren’t juvenile at all. The fact that Type 2 accounts for the great majority of diabetes cases overall tends to lock in the perception that “adults get T2 and kids get T1,” even if only the first half that proposition is more or less accurate.
This is a great irony to me. I was dx’d in my 20s with “juvenile type” when the old terminology still held sway, and I was very keenly aware of the new designations coming in and very hopeful they would clarify some of the misperceptions that drove me crazy. But what seems to have happened is the exact opposite. Instead of replacing the old Juvenile vs Mature onset concept, the T1/T2 terms seem to have just been mapped onto it as if they were just another way of referring to the same thing, even among physicians. The nomenclature has been warped to fit the misperceptions instead of correcting them.
It seems to me that calling Type 1 “autoimmune diabetes” and Type 2 “[something else that’s accurate] diabetes” would solve most of these problems. I’m sort of baffled why they would pick Type 1 and Type 2 as names rather than describing the actual underlying disease process with a term like “autoimmune” that’s perfectly accurate but implies nothing about age. Maybe part of the problem is that they don’t really know what causes a lot of Type 2 diabetes. Like some have said on these forums, it’s what you get diagnosed with when you don’t have Type 1…
There was a period back there when they were trying to use “insulin-dependent” instead of “juvenile.” Of course that’s not much better because T2’s frequently become insulin dependent, but I actually still find myself using it when talking to non-D people because there’s so much confusion out there and it at least fits the frame of reference they do have. “Autoimmune” is much more accurate medically as you say, but again, when you’re talking to lay people it isn’t going to be a lot more meaningful to them than Type 1/Type 2, which doesn’t really suggest anything if they’re not already familiar with what it refers to. “Yes I have the kind where you have to take insulin right off the bat” is usually the answer to what they’re actually asking, however inarticulately, so “insulin-dependent” does the job, or at least moves on to the next question (“I though only kids get that?”) in an efficient way.
Yeah, my first Medic Alert bracelet said “insulin dependent diabetes mellitus” in 1991, later bracelets changed to “Type 1 diabetes”. I also still use “insulin-dependent” and occasionally “juvenile diabetes” when talking to people who know nothing about diabetes, only to clarify that my diabetes needs insulin, won’t ever not need insulin, and high and low blood sugars are just “normal”. At least I don’t have the problem of trying to explain why I was diagnosed as an adult…
Though it seems like for a lot of people you may have to explain why you still have it even though you are an adult. “I thought only kids got that!” Yes, but guess what happens to kids. THEY GROW UP!
I may be wrong here, but the oldest scientific discussion or description of Types of diabetes mellitus that I’m aware of come from the 40s. What they separate the cases into is two types: insulin sensitive and insulin resistant. In some ways, I think this makes a certain amount of sense, because it gets at the underlying difference (in treatment terms) among all varieties of the disease (including the even more rare strictly genetic or physical varieties):
Is a particular case of DM caused by a deficiency in the amount of insulin produced by the body (and thus must be treated with exogenous insulin or an insulin promotor)?
Is a particular case of DM caused by a disorder in the body’s ability to utilize insulin that is produced in sufficient quantities by the body (thus treated with different kinds of medications)?
Incidentally, the reason they don’t use “autoimmune type” DM as a description is that there are several Type 1 varieties that don’t present with auto-antibodies but are otherwise similar in presentation and treatment (in both children and adults). Physical damage to the pancreas that results in damage to the beta cells; type 1b where beta cells are progressively damaged but not by any known auto-immune attack; and MIDD and some MODY’s where there is progressive beta-cell dysfunction that is genetically based. MODY and MIDD are classified separately (neither Type 1 nor Type 2), but idiopathic diabetes (1b) and physical Type 1 are not autoimmune based but are Type 1 (at least considered so).
I’m still of the belief that the classification system should be treatment-based, rather than based on cause or presentation, as Dr. Stanley Schwartz has suggested (see: The Time Is Right for a New Classification System for Diabetes: Rationale and Implications of the β-Cell-Centric Classification Schema - PubMed). It would of course be difficult to get the payers (insurance, Medicare/Medicaid), to go along with it, but would ultimately eliminate the confusion, at least from the physician perspective, and maybe somehow that would trickle out to the general public… (I know, wishful thinking! )
I think that makes sense to @Thas. There would be a “tier” of treatment descriptions, from diet and exercise controlled (probably what we now call “Pre-D”) to orals + diet + exercise (many Type 2 and some early LADA) to insulin-dependent. Or just back to good, old-fashioned “insulin-dependent” and “non-insulin dependent,” IDD and NIDD. There are definitely still variations in such classifications, but I suspect it would be more useful overall.
When not talking with a doctor, I call myself insulin-dependent because it conveys what people “need to know”, i.e. I need insulin. What caused the problem has never been important to anyone I’ve run into…
Exactly. People focused on “what caused the problem” seem to me to fall into two categories:
people that want to blame diabetics for their own illnesses;
and other diabetics who are trying to figure out what is going on with themselves or someone else.
The only people I’ve really ever gotten into the weeds with about my diabetes are very close friends and family, my bosses (who have a right to know what is going on with me), and other diabetics
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