All he stuff I have read here about type 1.5 does not tell me what is the difference really.
I mean Is it just the age you were diagnosed or is it also some pancreatic function?
I was diagnosed at 21. I don't think the type 1.5 was even used back then.
I see a lot of people here have been typed and the retyped.
It makes me think that the typing is not so clear even to the experts who are typing us.
Does anyone know what the defining issues are? It seems to me that the treatment would be the same.
Assuming that "Type 1.5" is T1 diagnosed past childhood:
I think "Type 1.5" is mostly a social term, not a medical term. It exists, because the mindset (incorrect since the beginning of time but still a prevalent mindset) is still that "Juvenile Diabetes" which then became "T1" is only for kids, so anyone else with the same disease who happens to be older needs a different term.
I think there are very real social implications that mean that T1.5's do form a cohesive group with experiences not exactly like T1's diagnosed as kids.
You'd be surprised how much age-of-patient-at-diagnosis has to do with treatment options and lots of other things.
You'd be surprised how much age-of-patient-currently has to do with the term used to describe them. I have been told many times over the decades, how I don't have "Juvenile diabetes" anymore because at that point I was over 18. (They told that to me in the 1980's when I was in college!). That my juvenile diabetes had turned into adult diabetes when I turned 18. I have been told many times as well that I'm not "Type 1" because kids have that and I'm obviously an over-the-hill grey haried adult. (Told to me as recently as this January at the opthamologist.) It's these preconceptions that make 1.5 a somewhat useful term for the recently diagnosed, because otherwise they do not fit into stereotypes.
How rude for the disease not to recognize the preconceived stereotypes of so many!
Even the JDRF has come around and finally admitted that most T1's are not kids or are not kids anymore, and they now actively support T1's who are adults, even though there's still a little bit of an asterisk on the designation to make it clear that they are "adults with T1" and not just "T1" (presumably meaning kids).
You'd be surprised how much age-of-patient-at-diagnosis has to do with treatment options and lots of other things."
I'm in that situation now. While I was in the hospital being treated ( I was diagnosed with T1 and admitted with a BG over 500 at the age of 38) I noticed that after they removed the insulin drip, the nurses started injecting me with an orange insulin pen shaped device. But when they were ready to discharge me someone came in to show me how to use the "old vial and needles". I was wise enough to ask if I could just use the same pens the nurses used.
But of course, being new to the whole thing I was not wise enough to ask for an insulin pump. Now, because my A1C is between 5.5 and 6.5 my doctor writes me up as "controlled" and the insurance company won't spring for an insulin pump.
Even the JDRF has come around and finally admitted that most T1's are not kids or are not kids anymore,
I tell that to every overly zealous parent who comes asking for a donation to some childrens program.
Type 1.5 is different from Type 1. Though there seems to be a grouping of a number of different types as Type 1.5; MODY, LADA, etc. With LADA (latent autoimmune diabetes in adults), the GAD antibodies of T1's are present, but there is typically a component of the T2 insulin resistance, too. This is why many people are retyped later; from T2 to LADA. And, there seems to be a longer time period from time of dx to depletion of beta cells with LADA compared to T1.
LADA ot T1.5 does not usually come with insulin resistance from my understanding.
I second what Tim already wrote.
In addition I would like to suggest a different name for the disease we have or a different thinking about it. It would be better to call it "Rogue T-cell disease" or "Autoimmune disease". This disease can manifest itself as T1 diabetes. If this takes longer than usual scientists suspect there is some difference in the autoimmune response and call it T1.5. But the driver behind all that is the rogue behaving autoimmune condition we have. This is important because it takes many coincidences to actually develop T1 when we have this autoimmune disease. One important precondition is a higher alertness of the immune system. This makes it very likely that we develop T1 at younger ages. Still there is a high likelyhood that the immune system does not focus on the beta cells. With age the immune system seems to change too. Likely at some point these changes will trigger different manifestations - even the then called T1.5.
Many of us look at their families and think "oh, I am the only T1 in my family". But looking closer you will very likely find a pattern of autoimmune diseases in your family: often thyroid related, sometimes skin conditions like lichen ruber/lichen sclerosus, sometimes digestive conditions like gluten sensitivity and very very rarely T1. These conditions are all manifestations of the same underlying autoimmune condition. Because of this T1 diabetics are also more likely to develop these conditions too. The increase is small but statistically significiant.
It would be better to call it "Rogue T-cell disease" or "Autoimmune disease".
I'm not so sure. I think that diabetes is diabetes. It might be autoimmune caused or maybe something else. For 99% of purposes it doesn't matter how it happened, what matters is our lives going ahead. But to call it anything other than diabetes would probably not help the affected get the treatment they need.
I think that as the number of available diagnostic tests has grown that we now spend way way way too much time inventing terms for the different permutations of tests "passed" and "failed.". To subdivide the categories until we feel we have little in common with other diabetics who share 99% of the same problems (but happen to have been diagnosed at a different age, or with a different combination of tests) is a big problem too. I see T1.5's or T2's who claim up and down that I'm T1 and therefore don't know what they've gone through. They have a point about our social and/or medical pasts, but going into the future I see a lot in common and a lot we can share.
Please be assured that I do not really meant to call it differently. My intention was to change something about the way we see this disease. Perhaps there is no T1 gene at all. It might all be just a statistical experiment with an autoimmune disease / flaw as the root cause and different possibilities for manifestations. This can be considered more unifying than dividing - at least I hope so.
I know it's very easy for me to sit around and do armchair quarterbacking and invent new diagnosis criteria that divides all of us into diagnosis groups of one based on a zillion different factors. I know that I've done such hypothetical division and subdivisions in the past.
But those actions seem kind of self-defeating if the goal of tudiabetes is to unite all of us based on what we have in common. Diabetes! To start calling what I have, other than diabetes... wow, that's really drawing a line in the sand. I'm not sure I really want to see myself as different than any other diabetic (Type 1, Type 1.5, Type 1.734323434, Type 2, Type 3, LADA, MODY whatever) here.
It also seems self-defeating for the medical establishment to subdivide us too finely based on a zillion different tests, if we are to be given access to the useful resources and tools we need to control our diabetes, and most of those tools are the same no matter what tests we've passed or failed or invent in the future.
I was diagnosed with Type 1 at age 49. According to my endo, who was also diagnosed Type 1 as an adult, although younger than me, it was not type 1.5. All of my symptoms were classic Type 1: 20 pound weight loss over about 2 months despite eating as much in one day as I normally would eat in 3, thirst, fatigue, frequent potty breaks. I was also very insulin sensitive, which he said is less likely to be the case with Type 1.5.
I'm also very insulin sensitive. I thought I was the only one. It's been almost six years since my diagnosis and I still can't use more than 6 units of insulin without going hypo.
My understanding is that the term "1.5" is just shorthand for T1 in adults.
Before antibody testing existed, if you were diagnosed with diabetes in childhood, you had "juvenile diabetes" (aka, "the bad kind") and if you were diagnosed as an adult, you had adult-onset diabetes. But once testing got more sophisticated, they were able to differentiate between what we now call T1 and T2.
An endo once told me that when adults develop T1 or any other autoimmune condition, it often comes on more slowly than it does in children, and that different presentation is what leads to many misdiagnoses (we asked because I have a sister who, while not T1, has been told she has as much as a 25 to 50% chance of developing T1D at any point in her life, regardless of age).
There are also a not-insignificant number of people who seem to fall into a "diabetes gray area." They don't have antibodies, but don't fit the general profile of a T2. These folks tell us there is still a lot we don't know about diabetes, and for them, the term 1.5 may be more appropriate.
Type 1.5 is not a medical term, and is not included in the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus's position paper. The problem, as Tim says, is that there has been a "head in the sand" denial by the medical community that Type 1 diabetes occurs at all ages. There really do seem to be different life impacts if you are diagnosed as a child versus an adult, but it is still the same disease. I think it should just be called autoimmune diabetes (autoantibody (GAD, ICA, IA-2, Zn8, and/or T-reactive cell) positive) instead of these silly, meaningless numeric terms. And yes, the treatment is the same: all people with autoimmune diabetes need to be treated with exogenous insulin. As for people being re-typed, if appropriate testing were done at diagnosis to distinguish adults with autoimmune diabetes (autoantibodies, T-reactive cell) from those with Type 2 diabetes, there would not be this re-typing problem (and the problem of mistreatment). Type 1 diabetes/autoimmune diabetes is not a childhood disease!