Endos and Type 1.5

Hi there,

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!

Yes, unfortunately, it is common that doctors and even endos miss LADA; more frequently they misdiagnose it as Type 2. You have not been misdiagnosed. You are Type 1! LADA (I don't care for the term 1.5) is a form of Type 1 in which onset is more gradual and which occurs later in life. (I've got you way beat, I was (mis) diagnosed at age 58! Once the initial stages pass and our bodies stop making much insulin, we are, for all intents and purposes, Type 1's. The real differences between us and Type 1's diagnosed as children, is, imho, more psychological. I think there are things people go through when they are diagnosed with a chronic disease so young that we don't.

When I first figured out (myself with the help of this website!) that I was LADA, that distinction meant a lot to me, because I had worked so hard to arrive there. But I quickly learned that very few people knew (or frankly, cared) what it meant! When, after figuring it all out I finally saw an endo and presented her with my list of five things that made me know I was Type 1, not Type 2, she merely checked them all off and said, nodding, "You are Type 1". These days, nearly five years since my first diagnosis and 3 years since my correct one, I just call myself "Type 1". When occasionally, someone, such as m cardiologist made the assumption that I'd been Type 1 since childhood (with the attendant risk factors) I said that I was "adult onset".

Initially you will be managed differently because you are still making some insulin (have you had a c-peptide) but in time it won't make much difference.

Thanks Zoe, this clears it up so much. It has been a frustrating road with doctors largely because of the assumptions they make based on weight. Because I'm quite slight, no one thought I could have diabetes, even though my Mom is Type 1, even after I lost a kidney, even with a celiac diagnosis. No one even ran an A1C because my urine tests never had sugar (I was running 5k every day). It seems that they only have the tools to diagnose when things are really at a crisis level rather than for prevention.

This website is sooo helpful! I've been trying to glean some knowledge from the Type 1 resources but it hasn't helped as much. It's the LADA discussions that really speak to me. That is so great that you challenged your diagnosis!! It really is important, the treatments are so very different between Type 1 and 2. Thanks again for sharing :)

Hi Newbie: Welcome to the club! Yes, you have Type 1 diabetes (not 1.5, that is a "slang" term). You were diagnosed at the same age as Mary Tyler Moore, now the head of JDRF International, so you can consider yourself in good company. The majority of new-onset Type 1 diabetes is actually seen in adults, despite the widespread myth that it is a childhood disease. It's not. I have written multiple blogs about adult-onset Type 1 diabetes. My most recent is my top ten tips for the newly diagnosed adult-onset T1. I hope you find the blog useful. People also like my Bill of Rights blog. TuDiabetes is a great resource, I hope you get the support and answers that you need and want!

Oh, and I was 35 when I was diagnosed with Type 1 diabetes.

Hi Jodi, if you don't mind me asking, what lead to your diagnosis? The reason I ask is that I was diagnosed at the age of 27 and my daughter is now 24. She also runs and I remind her often to be aware of symptoms as she approaches the age at which I was diagnosed.

No worries! It was actually a random physical that my GP decided to run because I wasn't feeling well. It's a standard that he always runs the A1C because he's extra diligent (and a great GP in my opinion).

I thought that I felt better eating low carbs and no processed foods only because they are generally healthier. But it was just my way of coping with extremely high blood sugars. Every time my sugar runs high, I still want to get out and run until I feel better. At least I'm lucky enough to be able to lower it by exercise!

I would recommend getting an A1C test done - there are too many other factors that can interfere with a fasting test or urine test! My fasting test was lower because I never ate after 6pm and always had a nightly run. I don't know why they bother to use it these days as so many people can slip by. My mom would on occasion test my BG whenever I would visit and it still didn't show up. The best to you and your daughter!

Hi Melitta,

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!

Thanks so much Jodi! This is good advice. I've always periodically tested my daughter too and she has had fasting tests done but not an A1c that I know of. I will definitely suggest that to her (strongly..)! :)

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 really doesn't hurt to be careful and it's always better to catch these things earlier rather than later :) Another sign I had was recurrent bladder infections that would not go away - just a sign of my immune system working over time!

My mom was very shocked when she found out I have type 1 as well and it was painful for her. But we understand each other so much better and many things she went through make sense to me now :)

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.

I feel your mother's pain, Jodi, as I pray that my daughter doesn't have to deal with this. Bless you. :)

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.

If I was going to use the term Type 1.5 for ANYONE, it would be the thin, antibody-negative, non-MODY folks, who have no diagnostic criteria, nor any name for their disease, but who are NOT classic obese T2's with metabolic syndrome. There are several people on the Thin T2 list who have mentioned losing weight when they weren't overweight to begin with, but experiencing increasing BGs, and while some have responded to T2 medications, some haven't. Whenever I buzz over to that group, I always recommend antibody testing, especially if they're losing weight, and not responding to oral meds, but some of them HAVE been tested, and are definitely antibody-negative. So, for the moment, I'm welcoming them into my Type Weird category, LOL! But, as Jodi said, diabetes is WAY more complicated than the docs make it out to be, and everyone is different. The ultimate goal is correct treatment, regardless of which box they put you in.

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.

Hi Natalie: But I would say about the thin people you are describing, have they actually done the testing to prove they are not MODY? I know very few people who have actually done the testing--it is very expensive, rarely covered by insurance, and performed by few labs in the entire world. And of course I am total agreement with you about getting the correct treatment.

No, most have not mentioned testing for MODY. But for MODY, there is supposed to be a strong autosomal dominant mode of inheritance, and most do NOT show that.

Of course, it may be that the medical profession is wrongly suggesting that a parent has to have had it -- Anni, who has been proven to have MODY 3, and inherited it through her father, says that her father (or grandfather, I forget) didn't have it, but either the paternal grandmother or greatgrandmother did (hope that makes sense). So that blows that theory as far as I am concerned, but it takes the medical profession a long time to figure things out.

She got me started wondering whether that's what I have, too, but I really don't fit that box, either. And since I'm being resistant about ANY testing at the moment, I'm certainly not going to pay for that! I've got my game plan figured out, and that's the way it's going to be!