Is this new information, or generally known?
It has been recognized for the last 20 years or so that type 1 diabetes in young children often occurs rapidly. In older ages it can present with a slow onset. The term latent autoimmune diabetes in adults or LADA has been used for many years to describe slow onset T1D.
Looking back, I can see that my T1D was a slow onset with symptoms presenting up to a year before my diagnosis at the age of 30. Iām aware that there are other T1Ds who participate here who were diagnosed as adults but say that their diabetes came on rapidly and led to DKA.
It will be interesting to see if this new analysis using these new classification subtypes will lead to any breakthroughs in the search for a cure.
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So what about the 7+ to 12 year old?
I see value in understanding different root causes, but think introduce new sub-types just makes more confusion !!! There is already too much confusion.
It could lead to finding different preventive treatments, but beyond medical folks, I donāt think the distinction is helpful.
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Well I was 57 when I got sick with something that a month later led me to DKA with a blood sugar of 1141. Only by Godās grace am I alive
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As someone who was diagnosed at age 10, I had the same question. If you read the article, it clarifies that this group is split and can belong to either category and needs testing to determine.
Well I was diagnosed at 14. For me definitely super-rapid onset with DKA like the younger group, not at all like LADA slow onset is commonly described today.
For myself, diagnosed at 17, but took 3 to 5 years to loose all my insulin function, by the end of which I lost 30 lbs. and was hospitalized to be put on insulin.
I had read years ago that it take about 3 years to go from having 100% beta cells to 25% at which time it would start showing. This bit of (mis)information sounds like the later onset version of Type I.
Interesting! I was diagnosed at 15, and just got these test results about 15 years later:
c-peptide of insulin: <.1 (which I guess means Iām making basically no insulin)
GAD-65 autoantibodies: 48.5 (positive for these autoantibodies which means Iām definitely type 1/the disease is autoimmune derived)
zinc transporter 8 autoantibodies: negative
islet cell autoantibodies: negative
Wonder where that leaves me? My onset seemed kind of in the middle of what has been described. About two months of progressive symptoms followed by a one week stint in the pediatric ICU with DKA, 700+ blood sugar, weight loss putting me at 5ā3" and 87 pounds. Iād bet they find more than two kinds of type 1 down the line.
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All we need is more confusion,
Type 1 Diabetes Endotype 1 (T1DE1)
Type 1 Diabetes Endotype 2 (T1DE2)
That nice little type 2 thrown in there when we are already so often misdiagnosed?
If they are going forward with this, they definitely need a different name.
I can hear it nowā¦
Look, youāre a type 2 of a type 1, lets try this medication and then just lose some weight and youāll be fine.
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I imagine it would relate to 2 different disease processes, both autoimmune, but with different strategies for testing, delaying, and preventing. The fact that the second one is a slower onset might mean there is an opportunity to slow the process down or stop it. I donāt know enough about the very early onset variety, for those under 7 to hypothesize.
I remember a while back there was something about type 1s who had been diagnosed before the age of 1 or 2 years, it was discovered that they could have a type 1 that could be treated with metformin only (I know it goes against everything youāve ever heard). It was a very limited number of patients (and they were type 1). I donāt remember the details and I havenāt heard anything about it in a while so I donāt know if science determined otherwise or, if it is just so rare that you donāt hear about it.
Just really rare. In fact it is even rarer since the amount of children diagnosed before 1 year of age is minuscule. BTW, the cut-off for the testing for that particular form is one year or younger at diagnosis. I tried to get my Dr.s to test me for it but they wouldnāt because I was diagnosed at 18 months.
On the subject of the OP, I fit perfectly into the under 7 super fast onset. It took 3 days from the time I started showing symptoms to the onset of DKA and coma with a BG of over a 1,000mg/dl. However trying to lump older children or even adults who are diagnosed into the older category isnāt a one size fits all.
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Juvenile diabetes vs LADA, seem to me, have the same endgame of no insulin production and both fit into Type-1 diagnosis. Both are eventually treated with the same protocol. .
Sort of, but it always seems to me like people with LADA on the whole (with significant variability around both means of course) have a much easier time maintaining tight control than people whose diabetes started in childhood and came on quickly. If my perception is accurate, I donāt know if thatās due to residual insulin production, autoimmune processes that cause different degrees of damage otherwise, or less time with the disease and a lower degree of complications (e.g., autonomic nervous system dysfunction) that are common in longtime diabetics and could make management more complex.
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This study would subdivide further the earlier Type 1ās into 2 groups, and for the list below, I did some quick searching to clarify I had my numbers right, but certainly debatable.
- Type 1, <7 yrs, rapid onset
- Type 1, >13, slower onset
- MODY, teens and early adult (new for me, but exists on WebMD)
- LADA, >30, slower onset
- Type 2, > 50, generally functioning pancreas, but other causes
Iām a Type 1, >13 (diagnosed at 17, on insulin at 22 because initially mistreated), c-peptide was .3% 10 years ago. As you said, generally not brittle.
Iāve had these thoughts myself, but never really tried to find a polite way to voice that opinion.
I honestly donāt know where I fall on the spectrum, because my diagnosis was long neglected. A school nurse finally figured it out when I was 8 because at 32 lbs, I weighed less than when I started pre-school there. She had me pee on a stick, then sent me to the hospital. I feel like I was always sick before that, though. I became a bookworm because I didnāt have the energy to be active and went home sick ever day after lunch. I figure now they just thought I was lazy or a tiny hypochondriac. I remember my mother yelling at the church ladies who would try to fatten me up, ādonāt feed her, sheāll just throw it up!ā, like I was choosing to be difficult. Nobody seemed to process that I was actually sick, like they didnāt know these things existed before the internet, despite my grandmother having died from complications of it. None of the living family knew her pre-diagnosis, so didnāt recognize it.
By the time I was diagnosed, my sugar was 1,300+, and while Iām sure I was in ketoacidosis, it wasnāt a diabetic crisis. Iād apparently become very resistant it and tolerated my ketones well.
It didnāt get REALLY bad till they gave me my first insulin dose. My body broke then, and I spent the next month in the ICU barely holding on.
I definitely feel like I struggle more than a lot of other people, though. I hate that term ābrittleā doctors throw at me. Not that I think other people have it easy, by any means, but it does seem like the stars align better for some than others. I feel like every day since diagnosis Iāve been wrestling with lions trying, to tame them. What I would give for just one single day where theyād roll over and show me their belly!
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I was dx at age 8 in 1959. I was comatose when my urine was finally tested, even though I had been to the doctor a couple of times before that. I was in the hospital 3 days.
My care wasnāt good until at home blood testing became available when I was 30.
I donāt think of my diabetes as especially difficult to control although I havenāt made any insulin in decades. I do work extremely hard at control though. I stick to a strict way of eating, take multiple shots daily and test many times a day and night when I am not wearing my CGM. It also exercise a lot in order to keep my insulin use low.
I find taking care of myself tiring, but not especially difficult.
I was diagnosed T2 at age 52. Five years later I became insulin dependent with a c-peptide of <0.01. I still show signs of insulin resistance so my Endo considers me a T2; however, I consider myself a T1. Now T1DE2 or maybe LADA. Not even my Endo knows for sure. Or, for that mater, really cares now that Iām on a pump and CGM.
I think this is an interesting study but for most of us, not very relevant. This kind of study would be used for researchers trying to find an answer why and how the system goes haywire.
I really donāt care which type I have. I just know I need insulin for the rest of my life.
And back in 1970, all these tests were not available. I didnāt discover I make no insulin until I took part in a stem cell study. If you produced any insulin , you couldnāt be part. No insulin, I got in.
But does the fact I produce no insulin change my treatment? Nope. So this is something I think could get researchers excite, not me so much.
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Diagnosed at 62. Type One. No family history.