I think you’ll find that it’s down to research. When you were young no one had heard of LADA or MOBY diabetes.no ne thought of it as an autoimmune disease. I have three autoimmune conditions, not diseases. vitiligo, inherited from my grandmother, thyroid failure, identified after a pregnancy but had been ongoing for some years, and last but not least, the LADA. As research progresses I’m sure more will be discovered. All of us know how the advice has changed over the years about how much insulin to take and what food to eat and exercise. We have to be proactive in looking after ourselves. We know that sugar in the bloodstream irritates arterial walls forcing the laying down of cholesterol, so we are prone to neededing bypass surgery, but we are also at risk of mitral valve reflux, tendinitis and its complications like frozen shoulder. We can lead normal, healthy lives if we want to, I have a friend who is in her eighties now and was diagnosed in her twenties!
10 mos in 1966
For myself, I use the term “juvenile-onset diabetes” in defining the disease I’ve had for 50 years. I find the current commonly used terms “Type 1” and “Type 2” to be woefully inadequate. On this site, you have to choose “Type 1 or LADA”. Another very poorly defined group term IMO.
I think we have to call it “Type 1 or LADA” because a lot of folks insist that Type 1 is different than LADA. There may be some justification to that because a lot of the folks who identify strongly with “LADA” are of a certain age group (young adults not kids, not older adults) that is distinct from how we usually think of the age of diagnosis and “adult onset” would be so wrong for them.
Whereas me, I’ve had Type 1 or “juvenile onset” for 35 years now and a lot of grey hair. I certainly identify with the social situation of a lot of T2’s.
Juvenile-onset T1 is definitely different from LADA, Tim. Many commonalities but differences are significant.
I was diagnosed in childhood (at 10) in 1967. Approaching my 50th year with it.
Sometimes people don’t like to identify the differences between the types, and I understand and respect the sensitivities. I don’t however apologize for continuously seeking the input, experience, and advice of other long-term juvenile-onset T1s as a group. It’s a unique one, with specific issues, and in my experience we often get frustrated trying to find one another.
Trust me, as someone with actual LADA (slow-onset autoimmune diabetes Type 1 starting in middle-age), it can also be challenging to find others like myself; there aren’t that many of us. I’m not yet on insulin, but I’m not insulin resistant. I didn’t get diagnosed in DKA, but rather from routine labwork including a metabolic panel (although it did explain some symptoms I was experiencing).
Type 1 is Type 1, although all of us are quite different in presentation, management, etc. The only real difference I see in the medical and scientific literature about why LADA is sometimes given a different label is due to the presentation: slow-onset autoimmune diabetes, most often happening in adulthood, and that doesn’t always require immediate treatment with insulin (even though it is now becoming a best practice in the US to treat LADA with insulin from diagnosis). Ultimately, it’s still autoimmune diabetes, although I strongly suspect there are many types of autoimmune diabetes (i.e., resulting from susceptibility through different genetic sequences, different viral or environmental triggers, and involving different antigen responses).
Diagnosis in childhood of course has its own challenges, but so does Type 1 diabetes in adulthood. My youngest brother was diagnosed at 21, and my grandmother and great-grandmother both were insulin dependent diabetics (and almost certainly “LADA” presentation in adulthood). But that is the entire personal experience I have with real-world, Type 1 diabetics like myself. I have met one colleague with classic rapid-onset adult Type 1, and I’ve met many Type 1s online in this community and some others. But even online, there are very few of us classic LADA types. So it’s always challenging to find people to talk to with experience similar to mine.
Maybe the real takeaway is that classifying diabetics is always problematic. For every “typical” Type 2, there are probably thirty or forty who are not typical. Even two Type 1s diagnosed at 5 will often be very different in presentation and treatment (just read what our parents of diabetic members have to say about helping their children!). Although I’ve got the slow-burn autoimmune type of adult-onset T1, I run into more people here and elsewhere who were diagnosed in DKA. Ultimately speaking, we have very similar sets of symptoms, experiences, and management tools to deal with. We have far more in common with each other than we have that separates us.
so true!
I was dx in 1967 too. I’ve learned so much from friends here of all stripes. When I first came here, I was helped out enormously by some type 2s who knew an awful lot about diabetes and also how to be a helpful support. That was the thing I needed the most, the courage to make changes that would benefit me.
I’ve seen many specialists (including cardios and neurologists at Joslin/Beth Israel in Boston and other centers in Seattle, Chicago, and L.A.) who tell me that the duration of T1 is (unfortunately) a unique discriminator; one that affects complications and many diagnostic and mgt issues. It matters to them in determining the tests and labs they order as well as the research studies. It’s a specific diagnosis. I’ve had tilt-table tests for DAN, which is a complication most often seen in long-term J-Onset T1s (not other sub-sets); a diagnosis for an enlarged heart (determined normal “for the duration of the T1”, ETC ETC ETC.
We all want to engage and dialogue (I think) with others who have the most similar diseases. I’m happy jumping from one lily pad to another in a constantly growing pond – just as compassionate human being and to socialize – but for those reasons exclusively. I think this topic gets more time than it deserves.
The best way to help one another is show mutual respect and compassion for both differences and similarities. The similarities seem to get discussed in pain-staking detail (and stretched-to-fit) while the differences for some reason morph quickly into controversy.
It seems to me that we’re miscommunicating: I’m not suggesting I know what it feels like to have Type 1 diabetes from childhood. I do not. I’m a research scientist, however, and I tend to take the scientific and medical viewpoint: the underlying mechanism in autoimmune Type 1 is the same, and those that live long enough tend to experience similar risks and management strategies.
I’m sure that having Type 1 since childhood has it’s own, special challenges. On the other hand, so does developing Type 1 as a middle-aged man with a family to support. Are they the same challenges? Some of them are and some of them clearly aren’t. There is a reason why we tend to repeat over and over the same mantra here: Your Diabetes May Vary. Two people of the same age who developed Type 1 at five years old still don’t have the same experience: none of us have exactly the same experience. Whether the similarities or differences are more important is largely a matter of attitude or philosophy.
I choose to concentrate on those qualities that make me like other diabetics (of all types, including Type 2), for two reasons: a) I find that I can learn from anyone who is willing to share their experience with diabetes (even if I choose to manage my diabetes in a fundamentally different manner); b) I find that I can be useful to some people by sharing both my experience and knowledge (and in particular my research skills). If you don’t find my experience or research valuable, that’s OK! We all do what works for each of us. I’m awfully glad, though, that I’m not considered a pariah on this site for having a variant presentation of Type 1.
T1D Dxd in 1987 at the age of 28.
T1Dx 1976 at age 3
T1D diagnosed in February 1976, over 41 years ago…hard to believe it’s been that long!
Ding-aling-aling! I was diagnosed in 1967 too, at the age of 18. Ended my hopes of a military career.
I had a physical in April of this year. I expressed to my doc that I wanted to be tested for diabetes because my dad’s type 2 was getting worse. I never had any signs but I pushed for the test. The next day, I was called and told to go to the ER ASAP. My sugar was in the 400’s. I had the flu in January and never seemed to recover from the fatigue. When I got to the ER, my sugar was still in the 400’s and I was told I had DKA. Prior to this diagnosis, I had already been working in diet and exercise for the past 11 months. I was down 47 pounds on my own and then I started to notice I was losing weight with doing less exercise and going to the bathroom quite often. I spent two days in the hospital. The doctor believes that I have type 1 and the flu virus attacked my pancreas. They didn’t do a C-peptide test either. My endo has ordered me to get one before my next appointment to determine what type I am. The more research I do the more I believe I am Type 1. I am on metformin, novolog and tresiba. I am feeling better but really hate waiting to see what type I am. I am learning to adjust my insulin because I seem to go low everyday between breakfast and lunch. I usually dip down in the 60’s. My lowest number was 44. To say the least, turning 40 was an eye opening year for me. I am glad I found this site.
welcome to our community, glad you found us! that really sounds to me like a classic type1. Make sure you’re fasting for the c-pep.
If I were you, I’d be asking for a referral to an endocrinologist, and perhaps a CDE (certified diabetes educator). They can better help you get the dosing right so you don’t go low as often.
welcome again, and let us know how you’re doing
Hi! I already completed my series of diabetes classes with my cde and have been to the endo. I had a hard time when I was first diagnosed but I am learning that I am not alone.
I was diagnosed with LADA at 70, I had a blood sugar of 498 at time of diagnosis (which was morning fasting> and an A1C of 13.9. Fortunately all my organs etc were functioning fine. I have lived with this disease now for 1 year, it has been quite an adjustment. I am an extremely active person, riding horses and working on the farm, and I have been eating healthily for years. Perhaps if I didn’t, I would have been diagnosed much earlier. I am now using the Medronic 630G pump and am waiting for the 670 closed loop system with sensors.
I was 51!
Diagnosed as Type 1 iin May of 1965 at age 16.
Ok, way back when I asked about what age people were diagnosed with type 1. My question or thoughts were that so many more people were being diagnosed as adults. And the discussions have been great and thank you all for sharing.
I did a very informal counting of responses and here is some numbers. Now not everyone gave their age and year and if misdiagnosed, so it very unscientific and just interesting. There is no real pattern. Imagine that with diabetes.
I got around 54 people that gave an answer of age or year & if misdiagnosed. So please don’t beat me up because numbers don’t match, that is due to getting either or on some. But here’s what I pulled together.
22 people diagnosed under age of 20
29 people diagnosed over age of 20 & 11 were over 40
11 people were misdials type 2 first some went years w/ type 2 diagnosis. (Very sad!)
Youngest was 10 months (Dan knows nothing but life with diabetes).
Oldest is 70(Nancy & Uff_Da, sorry you had to join our big club but such a fun welcoming club!)
And longest tenure of course our wonderful Richard since 1945! Such an inspiration to all of us!
And while this doesn’t answer anything or prove my question, are more being diagnosed as adults. It was kind of interesting and sad to see how often that type 2 diagnosis comes in when it really is type 1. I guess we really need to get the word out to our medical professionals that just because your not a child, doesn’t mean it’s not type 1.
So thanks everyone for sharing and very cool to read everyone’s stories and thoughts. Keep on fighting the fight. One day we will find a cure!