Study finds that 1/3 of people who died due to DKA had not previously been diagnosed with Type 1 diabetes

Here is a link to a study that found that of people who died of DKA over a 6 year period in Maryland, about one-third of them died from type 1 diabetes that had not been diagnosed or treated. And of those that had not been diagnosed/treated, about half were in their 40s (adults).

Some significant statements and findings that came from the study:

(1) While type 1 diabetes has long been referred to as “juvenile diabetes,” physicians are now growing aware of the possibility that the disease may develop in adult patients as well.
(2) As for why such a significant portion of the Maryland cases were undiagnosed, the likely explanation is a general lack of awareness of the possibility of type 1 diabetes in adults, combined with a population that has no regular access to medical care.
(3) “This study should be a wake-up call to physicians and the public alike that type 1 diabetes is not necessarily restricted to children,” notes ACSH's Dr. Ruth Kava. “While it’s true that the number of adults dying of this disease is relatively small, there’s no reason that this should be happening at all. Type 1 diabetes is not that difficult to diagnose."

I would say that, although Type 1 diabetes is not difficult to diagnose, the myth that Type 1 diabetes is a childhood disease keeps adults from getting appropriately diagnosed and treated.

Yep, if they don't expect to see Type 1 in adults....they don't see it! "Must be the flu, a urinary tract infection, anemia, etc". Makes you wonder about the whole system. I know doctors read journals, but they choose the journals to read. Are they, like nurses, required to get CEU's? (I don't think so and if they do they can choose those too). Should there be a listserve for doctors that they are required to sign off on with all updated information re diagnosis or treatment? Not sure what the answer is to effectively update doctors' information but diabetes being as common as its become should be on the very top of that list. (At least distinguishing between Types which seems like Diabetes 101).

I shudder to think what these statistics would be in developing countries!

In my hometown, several years after I was diagnosed, a junior high school kid died of DKA from undiagnosed T1 diabetes. Ironically, his mother was a nurse at the local hospital and his family was very well off.

Even in kids, the sudden onset and progress of DKA can take even trained medical professionals by surprise, even in situations where there is no poverty or lack of access medical care.

T1 diabetes was not at all difficult to diagnose back then (OK no instant bg tests but urine tests were readily available) either.

I must admit when I was diagnosed at 50 years old, I was surprised that the doctors were saying Type 1. I was about 50 pounds overweight (before I started to get symptoms), didn't eat right, no exercise, all the right things for Type 2. The 1st time seeing new doctors, diabetes educators, etc, they all ask me how long I have had T1, when I tell them just a couple years, I still hear a speech about how unusual it is to be dx'd at that age. I read a lot of studies, and articles like this one, that say it is not so uncommon to find older people developing Type 1, but it just don't seem to trickle down to the primary care givers. I guess that I can be an example for everyone that I meet, that it is just not young people anymore that can be dx'd with T1. :)

Chilling to realize the danger I was in before dx at age 38. It is as much an adult disease as a juvenile disease. I read somewhere that half of T1 diagnoses occur above the age of 18.

We sound similar, Eric. I was 40 pounds overweight prior to diagnosis and then started to lose weight before and after diagnosis and lost that exact 40 pounds. When I was overweight I had high blood pressure and high cholesterol so yep, I sounded like Type 2 bound. I was diagnosed at age 58 but I was misdiagnosed as Type 2 and did ok on oral meds for 15 months as I was LADA.

Don: It is actually way more than half of T1 diagnoses occur over the age of 18. The U.S. Centers for Disease Control and Prevention’s (CDC’s) most current information on the prevalence and incidence of Type 1 diabetes comes from Diabetes in America, Chapter 3, “Prevalence and Incidence of Insulin-Dependent Diabetes” (Diabetes in America, Second Edition, 1995). That source states that children (<20 years of age) account for 13,171 cases and adults (>20 years of age) account for 16,542 cases, for a total of 29,713 new cases of Type 1 diabetes per year, 56% seen in adults. Furthermore, that source states that there is an unknown number of adults identified as having Type 2 diabetes who have slowly progressive Type 1 diabetes. About 10% of Type 2s are misdiagnosed and have Type 1, and that is truly a massive number. So the VAST majority of new onset T1 is seen in adults. But it is the myth that T1 is a childhood disease that means that adults die of DKA without ever getting appropriate treatment. It is tragic and avoidable.

Another finding in this study of deaths due to DKA was that, in addition to the fact that nearly half of those who died of DKA with no history of diabetes were in their 40s, the researchers also found that 84 percent of these cases were men, and 53 percent were African-American. Another myth is that Type 1 diabetes only affects Caucasians, but the result in my opinion is that Type 1 gets overlooked amongst African-Americans.

I am not surprised about this statistic. I remember one GP lecturing me that I didn't need tests to see if I was T1 (medications were not working) because T1 was only diagnosed in the ER. When I asked for antibody testing, she admitted she did not know how to interpret them (how hard can it be?). I just think doctors are not wll trained and suffer from cognitive dissonance. They categorize every diabetic as T2 and then explain away any evidence to the contrary until it is almost too late.

I find it disturbing that the precis states that "physicians are now growing aware of the possibility that the disease may develop in adult patients as well" which suggests to me that "the manual" needs to be rewritten so that instead of them "growing aware" they will know or be guilty of malpractice, if they find someone presenting with symptoms and don't do the proper tests.

I'd consider too that perhaps some adults who are sick, even w/ the rather noticeable symptoms of undx'ed T1, are less likely to go do the doctor, which would lead to an unpleasant ending.

Very scary indeed. I think that the bigger issue is, from what I've read on this listserv, docs seem very willing to push oral meds for both T2s and people who may be T1 but don't fit neatly into either category. What I don't understand is why treatment isn't considered simply based on what helps the patient achieve normal blood sugar levels, regardless of the "type." And why isn't BG testing standard, like taking your blood pressure each time you visit the doc or an ER? Such a simple, cheap test that could easily save lives.

I agree with you. I still have doubts about my own diagnosis as a T2, but I long ago stopped caring. All I really care about is getting treatment that works to help me achieve normal blood sugars.

These are really public health questions that should be aimed at the regulating bodies. There is article after article about "Diabetes Growth" but very little aimed at curing it, other than the suggestion to eat less and exercise more which goes for just about everyone facing various challenges, not all of whom have diabetes. It's almost like the burden to test for this is moving to patients, since you can go get (buy) a BG tet or an A1C at Walgreens on your own. Although whether your doctor will do anything or choose the correct test to differentiate between the two varieties of diabetes seems questionable.

I do so agree, Melitta. In the African-American community,I hate that I am continuing to see despair, dismemberment from complications, dialysis, and slow death that comes from this misdagnosis. So sad, so enraging. And so absolutely avoidable.
God bless,

Yes, Acid; QUITE unpleasant. "Growing Aware" is NOT good enough. BTW and off topic, I like your new "running man" profile pic.:+)
God bless

Treatment simply based on what helps the patient achieve normal blood sugar levels will work for sudden onset Type 1, but will leave LADA/Type 1's taking oral meds instead of the insulin they should have for months, sometimes years because they do initially control the blood sugar. I know I was on oral meds for 15 months (I wince everytime I hear the commercials saying "if you took Actos for more than a year and got bladder cancer"...that would be one hell of a lawsuit.

Wow, I didn't know that, Melitta!

That is exactly what happened to me. My doc said if I was Type 1, I would be in the hospital in DKA. I demanded the antibody testing, which she promptly had to go look up because she had no idea what I was talking about. She seemed a little peeved when the results came back positive for the markers.

I guess I have a different view. I think the reason for moving to insulin when oral medications fail is to avoid glucotoxicity (both for LADA and T2). If oral medications work and you don't have high blood sugars, then a LADA should be fine on oral medications. But I agree, when those blood sugars rise, it is time to move to insulin (for both LADA and T2).

My understanding, Brian, and Melitta can explain this further is that if LADA/Type 1's are started on insulin right away it slows down the beta cell destruction and preserves insulin production for awhile which is the motivation for starting people on insulin right away. Though frankly I wonder about that conventional wisdom as it sounds like some LADA's who are diagnosed and started on insulin right away have trouble with control due to their low insulin needs and periodic "spurts" from their pancreas.