What was your first reaction when you were told "You have Type 1.5/LADA"

Since Tudiabetes I realize I am not the only person in this world living with “Type 1.5/LADA”. I am curious to know what your first reaction was to the Diagnosis of Type 1.5/LADA.

My first reaction was what? I thought there were only Type 1 and Type 2 diabetic’s. lol How in the heck did I get Type 1.5/LADA when there isn’t anyone in my family with diabetes…lol

I wasn’t surprised as when I was diagnosed, I looked up about diabetes & joined a diabetes group online and that is when I learned about LADA. When I saw the endo, that is when the blood test showed LADA. I think I am honeymooning as my sugar levels are high and I’m transitioning to type 1. But when I mention what type, no one heard of LADA (including the Joslin center here in Boston). That frustrates me a lot because they are well known.

My first reaction was… oh that explains it!

I knew about LADA but I’m also typical in some ways for T2, but in some ways not. I had a hard time getting mys docs to test, despite already having another autoimmune condition.

It was nice to get an explanation on the one hand, but it was a long time coming (30 years).

Cheers…
Sue

My reaction in general was, I have diabetes! But because I joined a community on a journal site, I learned about LADA before hand and thought, oh, maybe thats what I have. And didn’t think it was that scary than type 1 and 2.

I thought, “Oh, ok. Thats why I feel like poo. So where is my insulin already.” My maternal grandmother was the only family member with diabetes, but a “mentor” of mine while I was a kid was a T1 and was on injections back in the 80’s so I knew a little about it.

Honestly when they gave me my diagnosis I was just relieved to know what was wrong with me and the first injection(while still in the hospital) was no big deal.

When I found out I was LADA I was releaved. After the test the doctor didn’t call it 1.5 or LADA.He said you’re going into type 1. He thought it was strang when I said ;"Thank God!"but after almost a year of my GP treating me for T2 and not working.Iwas glad to have a Dx that could be treated right. I never fit in the T2 pattern

Wow I’m surprised they didn’t realize at the Joslin - I was dx’ed type 2 and came to the Joslin because for 2 months none of the meds, diet nor exercise was doing a thing. I mentioned to Endo & he just sort of giggled and said none of that is working because you are type 1 and a half. I was relieved to get my energy etc back but so very overwhelming and consuming.

My reaction to my diagnosis, which finally came yesterday, was similar to yours, Joe. Finally!! Actually my 1.5 diagnosis has been coming about for a couple months from my own process of reading and thinking (and driving myself nuts!). Like many people, I diagnosed myself.

I was stable on oral meds for a bit over a year from my Type II diagnosis when my numbers started climbing. Finally in February my doctor agreed to put me on insulin but only basal (and way too high a dose for me). I boomeranged between frequent lows and still being quite high after meals. I was really frustrated and started trying to figure out what was wrong. I was reading the diabetes book I have one night, a book that is 13 years old and I was reading the list of criteria for Type 1 and Type 2 and I started thinking, “could I be Type 1?” I came online to this and another forum and suddenly started reading about Type 1.5 LADA. The more I learned the more right it seemed. My PCP never heard of it. My new endo looked a bit blank but agreed to order a second c-peptide. It came back low like the first one. Antibody tests are not available here in Guatemala. She put me on Apidra a set dose and I learned carb counting and after crawling up a steep learning curve things started to come together with my numbers.

When I got my copy of Using Insulin delivered I was somewhat shocked to see full clear descriptions of Type 1.5 in a book written in 2003. Yesterday I went to my second visit with my endo and showed her my numbers and the book. I showed her my list of five criteria that I knew meant I was 1.5 (lost 40 pounds, low c-peptide, have another autoimmune disease, sensitive to insulin, and oral meds stopped working in one year). She nodded at each one and actually copied them down. She said I was Type 1. I said “Not 1.5 because that isn’t yet an official diagnosis?” and she nodded. Good enough.

I never fit the T2 pattern, normal weight (OK maybe a little, most of weight gain came in response to oral meds), gestational, diet controlled for about 4 years, oral meds initially worked but in last few years just produced lots of side effects. Internist I was seeing did not do referrals, the one before didn’t do lab work or write prescriptions (lots of samples). I moved on to a family practitioner who was quick to run blood work and recommend I see an endo. In the down time between docs I did a lot of internet research and learned about LADA, before the blood work was back I was sure that’s what it was, the referral to the endo was a thrill, finally after 14 years I had the correct diagnosis.

My story is similar to yours, Jeannene, except that my family practitioner didn’t understand why I wanted to know if I had Type 1 or Type 2 “since the treatment is the same.” I pushed for testing for Type 1 after a few years of metformin, etc., wasn’t doing the trick. I did internet searches, too, and LADA seemed to make the most sense based on my experience.

FInally I saw an endo and got the diagnosis. That felt really, really good. I had the “so that’s why” feeling and some relief.

When I went back to my diabetes educator, she said that she’d suspected LADA all along. I was too young (41) and too thin at the time of my diagnosis for typical Type 2s.

Janet

I was actually relieved to hear I had LADA. My treatment for Type 2 was becoming much less effective over a couple of years and things were getting very out of control. I am glad to have fast acting insulin now. It’s good to know what’s going on.