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.
I had no idea there was such a fight in the med community about the variant names of diabetes! Granted, I haven't exactly paid a lot of attention over the years,,,
In 1982 at the age of 23 I was diagnosed with what my doctor referred to as late onset juvenile diabetes -- not Type 1, 1.5, 2, etc. Seemed pretty clear to me, and there were no arguments about it. I immediately went on insulin, and that was that.
That is still what I call it, though I've also taken to calling it Type 1 since that is the term that layman tend to know out there.
Just to give my two cents: I prefer the term LADA (Latent autoimmune diabetes in adults) I dislike the popular term "Type 1.5" because it implies it is halfway between Type 1 and Type 2. It is not. LADA is type 1 - it is as the term says "autoimmune diabetes) that occurs in adults. However age is only one difference of LADA from "traditional type 1". The more important difference is the "latent" part. LADA does not come on all of a sudden, landing people in the hospital with DKA. The beta cell destruction is more gradual. So people like me, (I was 58 when I was diagnosed and I did fine on oral meds for 15 months) are frequently misdiagnosed as Type 2.
Now, nearly 5 years in from my intial (mis)diagnosis, and three years since I got my correct diagnosis and started insulin, I just think of myself as a Type 1. My disease looks and acts like any other Type 1. I usually just say "I'm Type 1" unless there is a reason to explain further. So do I think the LADA distinction is important? I absolutely do. For the reasons Melitta suggested. People are still being misdiagnosed. If LADA raises the awareness that a person who is an adult or even middle aged at diagnosis should be tested for antibodies - especially if they have other markers, such as normal weight or extreme weight loss, other autoimmune disease, need for insulin earlier than typical with type 2, and insulin sensitivity.
My understanding is that "type 1.5" or LADA is simply a very slow version of the same dysfunction that leads to type 1. It's an autoimmune attack on the pancreatic beta cells, it just doesn't happen anywhere near as fast as it does in standard garden-variety T1. Which means that the person with type 1.5 has a fair amount of time where they do not need exogenous insulin (or maybe, they don't need as much insulin) to keep BG levels in normal range, but eventually, it becomes T1 in the end. The studies of drugs and therapies intended to reduce the autoimmune activity and quiet the immune response might change that down the line so that individuals with LADA have the ability to stabilize, if not halt, the autoimmune response and maintain functional beta cells. With standard T1, it usually happens so quickly that by the time you figure out what's going on, the beta cells are mostly kaput.
Here this should help confuse the matter even worse. Check out this medical study done about LADA. LADA IN TYPE 2
That they have found 14 LADAs in the group of 74 people diagnosed as T2 is no surprise. For me the surprise is more that they do not conclude that these people have been misdiagnosed. But the functional problem these patients are facing is T1.5 not T2. Some of them may have a combination of T1.5 and T2 (insulin resistance) but the treatment needs to be focused on T1.5 to prevent serious complications like DKA. The study has a strong message: 18% of the people diagnosed as T2 might in reality be T1.5. In respect to the sheer number of T2 this high rate is really concerning. I wish they would have concluded the same.
and then I just found this interesting read about LADA diagnoses.
Dr. Bell's 2005 LADA article has some inaccuracies that make it not really applicable, I think. First, if you just test for GAD in a suspected LADA, you will miss those who are only ICA or IA-2 positive. So the full suite of antibody tests should be run. Then, Dr. Bell does a lot of "backflips" to say that LADA (autoimmune diabetes) is somehow different than Type 1 diabetes (autoimmune diabetes). A bit too much hair-splitting. For example, I never see doctors trying to kick people with idiopathic (not autoimmune) diabetes out of the T1 club, but doctors frequently try to say LADA is somehow not in the T1 club.
True for the antibody testing from what I have read so far and I don't doctor jump so I am not sure about the "frequently try to say LADA is somehow not in the T1 club." but this is still an interesting article.
My problem was convincing my Endo to do the GAD and C-Peptide. That sounds strange but he is just so sure I am LADA that he doesn't need it I guess. But I told him it was for my own knowledge and not to second guess him and he has now ordered the tests.
we could all hope for a day when you just go get the DIABETES TYPE TEST and be done with it. Or even better a CURE so we don't have to know what type we are. But until then all I can tell you is that if I don't use insulin my numbers go up so until I have to prove something to my insurance I guess the testing is just for me to be sure of how my body is working right now. If my C-Peptide and GAD are goofy then it is just proof. If they are "NORMAL" then I will scratch my head and do them again later down the road.... now I am just rambling Sorry.. Anyway, good point Melitta but also it was a 2005 article.
Hi Holger: Very good points. A key problem that I see with misdiagnosis beyond the possibility of DKA is that other diabetes complications (retinopathy, neuropathy, kidney disease) also occur much more rapidly. For example, I was (mis)diagnosed at age 35. I went only one week misdiagnosed, because I figured out what was really going on and (after a bit of head butting) got my endo to correctly diagnose me and put me on exogenous insulin (I had been given insulin when I was hospitalized in critical condition, but then was taken off of insulin). Other adult-onset Type 1s that I know who were (mis)diagnosed at about the same time as me, 17 years ago, went for much longer periods without exogenous insulin. The tragedy is that every single one of those others now have complications, and I do not. Not a scientific study, but experiential.
Thanks for your example of the difference in outcome for you as compared to the other Type 1s and their complications! It's a great "real world" example of why exogenous insulin is so important!
It's especially helpful to the group of us who are recently diagnosed and grappling with the "when to start insulin" question, and also for newly diagnosed Type 1s whose doctors put them on oral medications.
Hi Marty: Yes, there is quite a big group here on TuD of the newly diagnosed adult-onset Type 1s! You have enough to make a big team! And of course to really help each other out, which is so important.