I'm a little confused about the 1.5 type - my endo says I'm Type 1 because my antibody test was positive. But I'm also 33, and my Mom was 30 when she was diagnosed with type 1 as well. I've heart that Type 1.5 is relatively new and I'm wondering if it's common that endos aren't yet making the distinction.
Thanks so much!
Oh, and I was 35 when I was diagnosed with Type 1 diabetes.
Thank you SO much for these resources! I especially like tip #5 - I did not give myself enough time for this - instead diving into school and work full force. This had some benefit as I learned a lot about what I'm capable of but I truly could have used some time and space. I'll be looking more into this, thank you so much!
Mary Tyler Moore is fantastic!
When I was first (mis)diagnosed at age 46 and knew the doctor was wrong, I did a lot of research on the internet. I would sit on my bed at night with the tV on and the computer in my lap. I was scared and depressed and unsure what I had. Every night, for about two weeks, the same commercial would come on. It was a PSA with Mary Tyler Moore for the JDRF. She would start by saying "did you know that adults can get Type 1 diabetes too?" I would hide under my covers because it was like Mary was telling me what I had. And in the end my gut instinct about my diabetes was correct. Now it is over three years later and I can laugh about Mary talking to me. But funny thing, after that two weeks of seeing the same commercial every night, I have never seen it again.
I think it was wrong in the first place to invent a new term like LADA or 1.5 for this condition. If you distribute the likelihood to develop T1 over the lifetime of a human being you will see that: 50% is distributed from 0-17 and the other 50% is distributed from 18-100. Clearly it is wrong to think about it as a child disease. The later developing diabetics show a different autoimmune response that is true. Usually it takes longer for them to develop T1 and it seems that more residual beta cells will survive. But even some of the rapid developing T1s can preserve some of their beta cells - one facet why we all need individual treatments. At the end the fact remains that full grown T1 is T1 - even if the way to develop it was slower than usual. There is no difference in cause or treatment and the endo is just focusing on the correct treatment in my opinion. If he has already found the correct mix of insulins and treatment options is another question but the diagnosis is correct.
It is very confusing and I find the effort to group people together kind of pointless, since everyone's treatments seem so very different. They sent me on my way after a half hour training session on how to inject because they thought my mother would be able to help me, since we're both type 1. But her treatments are completely different than mine! She takes 10 times the amount of insulin as me! It didn't seem quite scientific enough for me :) I've learned a lot by trial and lots of error! Thanks for the info, it's much appreciated!
Holger, I am in total agreement, I believe it has been harmful to invent the term LADA (and especially 1.5) for what is in fact adult-onset Type 1 autoimmune diabetes. I will disagree with you on your % distribution of T1s across ages (respectfully, of course). In the U.S., the latest Type 1 stats from the CDC have 44% diagnosed between 0 to 20 years and 56% greater than or equal to 20 years of age. But the CDC quite specifically states that those percentages DO NOT include the slow-onset Type 1s. If you throw in the slow onset Type 1s, who actually outnumber the rapid onset Type 1s, you have the vast majority of new onset Type 1 diabetes seen in adults.
Thanks, Melitta. The 50:50 was my best guess on the numbers and statistics I have seen. I wonder how they have managed to not count the slow-onset Type 1s in the official 44:56? I mean what is the definition used here? Late but not slow - how strange is that? How many endos taking part in the statistic collections are willing to make a difference here? Where would you put the real relation in your best guestimation? 40:60?
Hi Holger: Almost everywhere, people with LADA are not counted or are included in the stats for Type 2 diabetes, despite the fact that LADA is Type 1 diabetes by definition. I cover those skewed statistics in an older blog of mine. My best guess is that about 75% of new onset Type 1 is seen in people older than age 20. I base that on the 44:56, then throw in the LADAs (who far outnumber all the rest). But nobody is counting: in the U.S., Type 1 diabetes is not a reportable disease, and most LADAs are misdiagnosed as having Type 2 diabetes. I think Europe is ahead of us in this regard; there is ActionLADA, etc.
Interestingly at the moment of my question I still thought that T1 and T2 can not be confused for a longer period of time. But that is the problem and danger here. The professional field can make the same mistake easily. A T1 with high levels of residual beta cells will have a glucose control similar to a T2: higher mean, less spikes. Gradually the quality of control will degrade and this can lead to a long period of suffering - with DKA even death. So we have a relation of 44:56 in the identified group of T1 diabetics and many T1 diabetics in the class from 20-100 are not counted for because they are misdiagnosed as T2. Like you I think this can really mess up the statistics - even for T2. It would be really important to count and classify all diagnosed cases of diabetes and to establish protocols for the identification of these diseases. In Germany we have the same problem for the statistics: Diabetes is no reportable disease. At least we have Europe-wide Disease Management Programs (DMP). The patients are asked if they are willing to participate if they qualify for a DMP and I think most will do that. In the DMP specific standards for statistics and disease management are followed. These numbers can then be used as early warning indicators and for burden charing between health insurance companies.
Well actually, T1 and T2 can be confused forever. Think about it, the only definitive diagnosis of T1 occurs either from
(a) You arrive in the ER with sudden onset
(b) You get proper testing a full antibody panel and c-peptide
But from the studies I have seen, only 85-90% of T1s test positive for one or more antibodies, so 10-15% of T1s can be readily confused for T2s.
My P refused me all antibody tests and only granted me a single c-peptide after two years of pleading (it came in low). My GP believed that all T1s were sudden onset (and she was a recent grad). Today, I am still diagnosed T2. I've never been granted a full antibody panel (I was GAD negative) and I still have no confidence in my actual diagnosis.
And while we think that someone with slow onset won't respond to oral medications, they in fact often do respond pretty well. And T2 progresses, just like LADA will. There is good evidence that early application of insulin therapy for LADA preserves remaining beta cell function and has better outcomes. I actually believe the same principle applies to T2.
If only 85-90% of T1s test positive then
a) what is the standard error for these tests - the likelihood of false negatives?
b) I would suppose that there is a timeframe with high autoimmune activity that should not be missed. If I would have these test now I very likely would be negative because my beta cells are totally gone. I do not see any sign of beta cell activity in my numbers. So antibody tests need to be done in the early stages for diagnosis not later in life I think.
c) perhaps the missing 10-15% are in the mody subgroup?