It can take a long time to lose total insulin production. In my case, over 8 years. I spotted the first time I started having higher BG levels in the am. I would test off and on just because I could and as soon as my level was higher a few times (after a stress event, my mom died) I went into the doctor and told him I had tested several times waking up to around 120 and I had had an uncle that had type 1, so I was concerned. He did an A1C and it was 5.1 so he told me it was just a fluctuation don’t worry about it. Keep exercising, losing weight etc. Then the next year I was waking to 130’s plus. Doctor again, A1C 5.5. Don’t worry about it.
The thing is, it didn’t make sense to me. I ate extremely healthy, a vegan diet. Not a junk vegan diet, lots of salads, bowls of veggies, whole grains. I swam 75 laps a day in a gym pool. I had no issues at all. Why was my blood sugar climbing? I was overweight but in great shape.
It took about 3-4 years? and I started waking to 180’s plus. You are a type 2, lets try drugs, they worked some, but didn’t stop it. Are you sure I’m not a type 1, I had an uncle that had type 1??? Nope, type 2, but they never tested me. I didn’t even know there was a test to ask for. She sent me to an endo who wanted to repeat the drugs that had made me sick, I asked him a couple of times are you sure I’m not a type 1? Nope, type 2 and he never tested me. I refused to go back to him after a couple of visits. Probably because I have always been overweight and they automatically assumed type 2.
In essence 12 years after my first fluctuations, 9 years after I was diagnosed as a type 2 is when I was finally diagnosed right as a type 1.
It’s a little hard to tell when I stopped or even when I stopped making enough to keep me from getting major sick. The drugs kept giving me side effects, made me sick and only worked so so. So they put me on a long acting insulin, which helped a lot and made me feel better. The first endo wanted to try the drugs that made me sick again. I switched pcp doctors and she put me on a fast acting insulin too and when the group hired a new endo, she sent me to her right away and that doctor did the type 1 testing without me even asking and I was finally diagnosed right.
When did I totally stop making insulin? That’s harder because I was put on insulin. I can tell you when I was finally tested I was making 0 insulin. So somewhere between 8-12 years from the first signs. 8 years from the very first “fluctuations” and I was put on long acting, but still making some and 12 years is when I was tested after that first fluctuation and I was making 0. But 8 years was too long as long acting insulin helped control it but didn’t bring my sugars into more normal levels. I really should have been started on insulin 3-5 years after those first fluctuations.
Some have the theory that less carbs help keep the pancreas functioning longer. I’m not sure whether it makes a difference. I have seen people try it and still end up on insulin within the “normal” 1-2 years that seems to be a rule of thumb of diagnosis. I have seen people they think that it has delayed it too. Since I readily ate carbs and lasted 5 years without taking any insulin and then it was just a long acting one. I know someone else that was misdiagnosed and cleaned up how she ate and lasted 12 years without insulin before getting sick. She was older and finally diagnosed at 78. I’m just not sure carbs matter. Another potentially stronger theory that taking insulin earlier might help protect the pancreas. But I really don’t think they know. Type 1 is still highly misdiagnosed (35%) so knowing when and what delays it really hasn’t been researched enough yet. They do definitely know that it can take over 8 years to totally stop making insulin. But you will get sick before you totally stop when you reach the point you are not making enough.
BTW. Rarely do they use the 1.5 to label you medically. It’s not an official label. Too many people, doctors included, don’t have a clue what it actually means. There is a doctor that recently told someone since you are a type 1.5 you won’t need to take insulin. Sigh, it’s just a problem getting information out there. But the label LADA is used and it just explains you got it as an adult. So Type 1 or Type 1 LADA is much more explanatory. But even LADA is confusing to people, doctors included in what it means. 50% of people get type 1 after the age of 30 and there are differences in that as an adult it is a slower process. There might be some other nuances getting it as an adult versus a kid which they are exploring, but you are considered a type 1 as the official medical label.
A book, I’m good at writing books, but I hope it helps!
