Hi Lindsey: Many women here on TuD were first diagnosed with Type 1 diabetes during pregnancy (although sadly many initially were misdiagnosed). Manny (founder of TuD, himself a LADA) re-posted this February 2010 blog of mine as part of LADA Awareness Week. Regarding your mother and her brother, my question would be are they truly Type 2s or were they misdiagnosed? Most LADAs are misdiagnosed as having Type 2, even today (2010). Anyhow, sounds like you are doing really well, and that is what is important!
I read Kelly’s comment of Feb 18, 2010 and wonder , if she included lobbying the Canadian Medical Association and the Alberta Medical Association ( her home province ) ???
Hi Nel: Kelly did contact the CDA, with an excellent letter and compilation of misdiagnosis stories, and she received a personalized and specific reply from the Chair of the National Diabetes Management Strategy. I am not sure if she ever contacted the Alberta Medical Association–you will want to check in with Kelly for sure. She did an awesome job!
Melitta, I am off to the CDA’s NAGM , Edmonton tomorrow am as the Regional Chair , Interior Region of BC . I have touched on the same subject with CDA Staff( I am one of those as I think you know , who was misdiagnosed many moons ago ) . I will message Kelly after this message , as I cannot find any follow ups relating to her discussion and replies from the CDA …but then I am not too computer savvy . Not only that , I should have taken care of this much sooner .
Hi Melitta!
I’m very late adding this comment, but I feel it’s important. I was misdiagnosed for 30 years, as you know.
LADA can still look like T2!
I’ve been overweight since my early 20s (on and off) and even at 57, I have very little insulin resistance - probably just appropriate for my age, not weight. My TDD of insulin is not at all high, which it would be if there was insulin resistance. Yet, I still looked like a type 2 with the extra weight on. My c-peptide was normal when first tested and then slowly dropped down to nothing. It still didn’t alert my doctors because T2 can progress this way too.
It’s easy enough to get doctors to test for autoimmune diabetes when there are obvious signs of people not fitting the T2 mould, but when they aren’t like that? What then?
It took me 2 years of asking to get tested, and both my family doctor and my endo swore that it would be impossible I’m T1, because I present like a T2, except I was on insulin by then - normal considering how long I’ve been diagnosed. The other autoimmune thing I have, Lupus, was just a coincidence, according to them. Of course they both apologised to me when my GADA came back (their words) “strongly positive”, twice over the course of 3 months. It didn’t help. I’d been called non-compliant several times by another doctor when the tablets just weren’t working. It actually made me give up for a while. That wasn’t a good thing. I should have been on insulin about 2 years before I eventually was, and according to my new endo, probably way earlier than that. Had I known I was slow-onset T1, the whole ballgame would have changed for me (physically and psychologically) and with the treatment I was offered.
Goes to show you, this whole business isn’t an exact science. Thin AND overweight people can be T1, misdiagnosed as T2.
I say that ANY suspicion of diabetes, the battery of autoimmune tests should be run, and repeated sometime later. It would save people’s lives in so many more ways than is obvious.
If an adult is diagnosed with diabetes and does not appear to fit a more typical profile for Type 2 diabetes (i.e., the adult is not overweight, does not have abdominal obesity, is not insulin resistant, does not have a family history of Type 2 diabetes, and does not have metabolic syndrome), the person should be tested to see if he/she has Type 1 autoimmune diabetes.
Apologies, I am even later adding this comment but I just wanted to say that I agree 100% with Susi.
I tick all the boxes you mention for a T2 typical profile. Except for being normal weight at dx but with significant belly fat. Also they thought I was severely insulin resistant but further tests 6 months later showed I am not. However I have a history of severe insulin resistance.
On the other hand, I also presented in DKA, have virtually zero C-peptide, and, here’s the clincher, tested off-the-scale for GAD antibodies. Which on paper ticks all the key T1 boxes right?
But all the docs saw was a fat-looking adult and conveniently ignored the antibody tests. They tick the boxes they want to tick based on their pigeonholing, and ignore the inconvenient boxes.
Hi Susi and Lila: Very good points! On some of my other blogs I mention that the suspect-Type 1 PWD may “no longer be at fighting weight” (sorry, I just hate the term overweight, so I use a boxing analogy) and that adult-onset Type 1 diabetes can happen to people of any weight and ethnicity and athletic ability. Sadly, it’s easier to “spot” the thin Caucasian ones. It’s a case for giving antibody tests to ALL newly diagnosed people with diabetes. That of course would only identify the people with autoimmune diabetes, not MODY or other types.
Melitta, it’s becoming very clear to me that the “test if they are old and thin” really doesn’t apply. I’m very happy to see that you acknowledge that. I can understand why I wasn’t diagnosed 30 years go, but in the last 10 years, I wasn’t diagnosed either. Lots of damage done when I should have been on insulin a long time ago. It was only 2 years ago that I finally got tested, after asking for 2 years before that! Yet I have other autoimmune conditions and they knew it.
The bias, and in some ways prejudice, “oh she’s fat she must have T2 and that’s because she has a bad lifestyle” sometimes takes so much of my energy to explain that it’s not always the case. First we’ve got the T2 prejudice, then the LADA, that a lot of medical people have still not heard of or will not consider.
It’s an uphill battle! I’m very glad you’re being so out there about it!
I almost believe that the c-peptide and GADA test should be done. I fit all the points of a type 2. Overweight with a tummy (Not a lot though), Mid aged (43 when diagnosed), family history of Type2 (Mom) any normal Doc would have said I was a Type 2. And even an Endo with just looking at me and asking some questions along with my latest blood test said I was Type 2. But my Primary Doc got it right. Type1. He took the time to ask how it progressed. Did a c-peptide test. And since then on Insulin and feel much better. A recent redo of the c-peptide shows a further decrease in my insulin production. So I'm for sure LADA as far as I'm concerned. Doc is happy to just call it Type1. And for now I'm not worried about finding an Endo unless other metabolic issues happen to arise.
Jimmy: Glad your primary doc was on top of things! LADA is of course Type 1 diabetes, so fine to say, "I have Type 1 diabetes."