Follow /visit the " Question for low carbers " discussion and one can read it all there .
As in most discussions , we all seem to go " off track " like this one may too …just the nature of the beast …and things get taken out of context .
Natalie can tell me if I’m misreading something, Kelly, but my understanding was what she was upset with was the comment about adult onset type 1’s. But that she felt the opposite about LADA’s being bonafide “members of the type 1 community” that’s what I find ironic. If you follow around three people, let’s say all 50 years old, one diagnosed as a child, one diagnosed as rapid onset adult and one diagnosed (a few years previously) as slow onset, (LADA) I challenge you to find any difference in their management or in their official diagnosis in their medical records: They are all three “Type 1’s.”
I’m sorry I wasn’t clear, Zoe. I was actually quoting a person on another thread who said that if you had weight problems or had difficulty with carbs, you weren’t a “true Type 1”. It wasn’t in reference to LADA at all. The LADA part was an entirely different person in an entirely different environment. No connection between the 2 parts of my post at all, except that they occurred on the same day.
I reacted to the LADA person, because she criticized me for differentiating between LADA and classic Type 1 simply in terms of rate of onset and age. Of course LADA is a form of Type 1, but as you well know, they DO have problems getting diagnosed properly and getting proper treatment before they actually go into DKA. Nothing second class about them, except in the minds of doctors who don’t know they exist.
And I WASN’T joking about the quote about “true” Type 1’s. I had steam coming out of my ears! I was quite offended by it, because I know too many Type 1’s who DO have problems with weight and carbs, and while I acknowledge that some people, diabetic or not, can eat to their heart’s content and never gain an ounce, there are probably more who do have to pay attention to how much they’re eating and how much their TDD of insulin is, in order to control their weight. So I guess I was being sarcastic about the usage because I was really pissed.
I hope this makes it clearer!
OK, I didn’t read your second message before replying. So let me tell you about the interaction in more detail. In a blog, someone called a man with LADA a Type 1, and I wanted to clarify that the difficulties he faced in diagnosis was because he was slow onset. That’s the only time a LADA has problems – once they’re identified as Type 1, you’re right, there’s no difference.
This person told me that she was a sudden-onset adult diagnosis, and that she had received no acceptance from the Type 1 community, and that she had been miserable for years because she had been made to feel that as an adult-onset, she was not part of the community. So she decided to consider herself a LADA, but that, increasingly, as more medical professionals and academics are coming to recognize the real differences between LADA and classic Type 1, she felt that she was being pushed out of that community as well.
I don’t really think ANYONE should be pushed out of the overarching diabetes community at all, but I was focusing more on Melitta’s unflagging advocacy of recognizing LADA’s before DKA and possibly years of poor control, because they are so often diagnosed as Type 2’s and not treated appropriately. So my reason for bringing it up was educational, and not meant to put anyone down, nor minimize the rough road anyone with diabetes travels.
Does that explain it better?
Thanks for the clarification, Natalie. It was a little hard to tell what were quotes of another person. I’m perhaps too sensitive as well because there are people who imply and believe that both adult sudden onset and adult slow onset (LADA’s) are not “true” Type 1’s. While I certainly take my hat off to people who had to deal with all of it as children and adolescents, and adult onsets of both kinds had to deal with dangerous ignorance around diagnosis in the end we are all Type 1’s and are similar in our daily challenges whenever and however we arrived there.
I hadn’t read that thread before, Nel, and did skim a bit of it. I grow quickly bored/irritated with threads that say in effect “what’s true/works for me must be true/work for you”.
I think there is an emotional difference between a T1 diagnosed as a kid and a T1 diagnosed as an adult. I think I missed out on some emotional pain by being diagnosed as a kid, that the LADA folks get encumbered with as an adult.
At the same time I look at the troubles many LADA T1’s have getting treatment from the medical community, and I compare with my troubles in my 20’s finding a health care provider, and I think there’s a lot in common.
There’s still a substantial medical professional population who would regard neither me nor a LADA T1 as a “true type 1” because the JDRF poster child is, well, a child. For a long time now I’ve been looking at Mary Tyler Moore in the background and connecting much more with her, than with the kids. Today it may officially be “type 1” but it was only a few years ago it was “juvenile diabetes”.
Thanks, Natalie, it helps to have the context. The second paragraph of your explanation above makes me really sad, though maybe I should laugh about how absurd it all is! I really admire Melitta’s advocacy. I must say that as time has passed since my (mis)diagnosis I refer to myself much more often just as “type 1” in part because my issues are the same as any other type 1 (and that is driven home to me when I attend my monthly type 1 women’s group), in part in reaction to the implication by some people (and I’m sorry for coloring you with that crayon) that we are not “true” type 1’s.
Two interesting experiences on that topic: Periodically in the last couple years I’ve noticed a “drift” in my numbers over a period of days or weeks.I had heard about “LADA spurts” and wondered if it could be that, even though given my c-peptide of .38 two years ago I doubted I was making much or any at all now. Each and every time I posted my experience on here, “classic” type 1’s responded and said they had the same experience and it was just normal type 1 variations.
Second experience based on just saying “Type 1”. I was discussing issues with my cardiologist and he was saying things about my “risk factors” - I thought he was referring at first to my brother’s heart conditions. But then he clarified “because you’ve had type 1 diabetes all your life” and had to quickly explain that I had only been type 1 (and accumulating cardiac risks) for 4 years, not 50!
Interesting, Tim, because I feel the opposite. I think it was much easier to have been diagnosed type 1 at age 58 than it would have been if I’d been let’s say 8. Growing up, going through adolescence with all the stress and questing for identity and peer approval that entails, then all the life changes of young adulthood, seems like it would be extremely difficult while dealing with type 1. But maybe my view of that is colored because I was extremely volatile and lost as an adolescent and I am grateful to have the maturity and emotional stability I have today to meet the type 1 challenges.
Maybe I’m overgeneralizing, but it seems that at least some of the later onset T1’s have some difficulty accepting the “T1 diabetes” term. Maybe because of the gradual onset. Isn’t that what this whole thread is about, that maybe LADA’s don’t see themselves as T1?
I look at some of the internet discussion sites and see folks worrying and working hard on “preserving beta cell function” when that was something I certainly never worried about. I never felt that I was responsible for keeping parts of my pancreas working.
I see lots of LADA’s having to jump through hoops with C-peptide and antibody tests - there are a couple of prolific posters here who have written to great lengths with their continuing sagas - and then I look back at my diagnosis (pee on the testape, have it turn jet black, not even a blood test) and it seems like a much longer path for them than it was for me. Possibly it’s a longer path to them because of their age at onset or maybe it’s just that we have all these fancy blood tests available today. I didn’t have to prove anything to anybody much less to myself, and that was good, because I was barely conscious as a result of DKA.
At the other end of the spectrum I’ve been told by a few people in the past couple years, that I’m “not really T1” because I’ve never had a C-peptide test or antibody test. It’s surprising how much the definition of diabetes has changed over time. 30 years ago, by definition diabetes was sugar in urine. Today it’s so much more complicated in between A1C (that’s another thing that throws the young docs - that A1C’s didn’t exist 30+ years ago!) and bg and C-peptide and antibodies. Sometimes I wonder how many of the complicated classification rules I see are actual real rules that real doctors use, vs rules that we are imposing on ourselves as we subdivide all our classifications and try to figure out exactly who we are!
Seeing all the sub-types of T1 being discovered or defined or self-classified is interesting, because at my current age I’m starting to feel that maybe I have more in common with the typical T2, than the kids or LADA T1’s.
With regards to weight gain from insulin therapy - this is not a “new thing”. My docs knew about this more than 30 years ago, back when it wasn’t T1, it was “juvenile diabetes”. Diabulimia didn’t have that name back then but the docs knew about it and it happened. I think it’s been known since the first insulin use - contrast and compare with the emaciated T1’s in the pictures of The Discovery of Insulin with the same people just a year after being on insulin. If you go googling for the pics I gotta warn you: The “before insulin” pictures sometimes are put up with disclaimers because of their disturbing content.
I think there is a stereotype that LADA’s are by definition skinny but I honestly feel that is just a stereotype and falling into that stereotype would be losing the battle for recognition that all LADA’s deserve.
I don’t know that LADA’s don’t think of themselves as Type 1’s, Tim, so much as some type 1’s don’t see LADA’s as “one of us”. For me, I’d accepted that I was type 2 and what that meant and when my numbers starting climbing and climbing first I was confused as hell. Then after reading and learning I figured it out and knew I was a Type 1/LADA, so the first time an endo said, “yes, you are type 1” it was very validating. (It wasn’t till later that I thought, "I’m glad to be Type 1?? What am I nuts? LOL).
Yeah the whole diagnosis thing was a pain, though I’m hoping that will start to change as the medical profession learns about the variations in type 1 presentation. But I still don’t think those issues come anywhere near the difficulties of dealing with it as a kid and adolescent!
I don’t feel I have much in common with type 2’s myself even though they are more my generation. (No, don’t anyone take that as a negative to type 2’s!). Their management and issues are too different. Even though a couple acquaintances are type 2’s for many years and now on insulin, our outlook seems quite different. I have lots of compassion for the kids but of course don’t relate to them. Who I do relate to are other adult type 1’s of all ages and etiologies. That’s just me. Being a part of an amazing type 1 women’s group definitely contributes to that outlook. I have noticed that some of the younger adult type 1’s don’t seem to relate to us older folks, but then it’s always been that way, hasn’t it? I was a part of the “don’t trust anyone over 30” generation, but now am comfortable with a variety of age groups.
I think the reason that the distinctions between the different types of diabetes continue to be useful, is that there are likely to be very different cures for the different types of diabetes (assuming we live long enough to see any form of diabetes cured). I don’t think a cure for classic Type1 is likely to work for classic Type2, and visa versa.
I read that Finland has the highest incidence of Type 1 of any country in the world?
Tim, the person who set me off was upset because she WANTED to be considered LADA rather than Type 1. Even though she had sudden onset. Because she felt that the childhood-onset Type 1 community did not accept her.
The longer I go with this stupid disease, the less I want to divide people into types, and the less I want ANYONE to be eyeballed or aged into a certain type. We’re truly all in it together.
Good point, Jag1. There are so many variations in the same types, so much overlap between the types, I expect we will need more than one cure.
A type 1 diabetic is simply someone whose pancreas is undergoing an autoimmune attack resulting in beta cell destruction. How this acts itself out in diagnosis, when it’s diagnosed, or the totally unrelated ‘will I gain/won’t I gain’ with insulin has nothing at all to do with it. That’s my 2 cents.
This is an interesting point. Funny thing for me is, when I was diagnosed at 18 years of age, I only knew it as type 1, and did not even realize that it was common amongst children. For some reason I even believed I was very young to get this disease. It was a big surprise for me to learn that kids as young as toddlers have diabetes - if it was hard for me to deal with, especially in the beginning, I couldn’t even imagine what their parents have to go through.
As for the JDRF - personally, I think they have bigger things to change than their name. They are one of the top diabetes organizations and do a lot of good, but they can do even more when it comes to putting the donated money into research.
I had never heard of LADA or anything but T1 and T2 until I started hanging around on message boards (2008?). I am still not sure what the exact difference is.
The difference, AR, is in rate of onset. “Classic” type 1 happens all of a sudden. The beta cells are destroyed by an autoimmune attack and the person experiences sudden and severe symptoms sometimes resulting in DKA and presenting in crisis at the ER or necessitating hospital admission. LADA is a variation of Type 1 that involves a more gradual destruction of beta cells. The person may experience symptoms for weeks even months before them becoming concerning enough to seek help, and then they can be treated with diet and exercise or oral meds for a period of time from a few months up to about 4 years. That and their older average age often leads to misdiagnosis as Type 2. This misdiagnosis can be avoided by testing for antibodies. LADA’s like all Type 1’s have antibodies (most often GAD), where Type 2 does not. LADA is a subset of Type 1 that differs only in rate of onset. Once beta cells have been destroyed it is identical in presentation and management to any other Type 1. Hope this helps!