I saw my endo for the second time and she finally confirmed my diagnosis as Type 1. I asked her if she wasn’t using Type 1.5 because it is not yet an official diagnosis and she agreed. Close enough. She actually copied down my list of reasons why I knew I was LADA (lost 40 pounds, needed insulin after only a year, low c-peptide, have another autoimmune disease and insulin sensative). She told me she wished all her patients were as committed to understanding their disease as I am. How nice to hear!

Nearly two years since I was misdiagnosed as Type 2. Six months since my numbers started climbing on oral meds. Three months since I started insulin and floundered around trying to get stable. I’m using the basal/bolus method and counting carbs and my numbers are starting to look good more often than not! In May before starting bolus my A1C was 7.2. I’m hoping when I re-do it in August it will be under 6! What a long road it’s been but I’m finally getting there!

Hi Zoe: Wow! That is SO fantastic. Your persistence really paid off. Congratulations!


Congratulations! You go girl!!!

Zoe your story is a really good lesson in persistence and education, I hope more members read this. Congrats!

Thanks, guys. I’ve always said that “a little bit” of obsessive compulsive disorder is a good thing!!

True…OCD…Hey, I have that!

Good for you, Zoe! I like your name, by the way. Anyways, I was lucky in my diagnosis. I went in for my annual physical and my blood sugar was elevated and blah, blah, blah took the tests but they could not diagnose me. My internist sent me to an endo and he immediately diagnosed me as a very lucky LADA. He said had I not found it out through my physical I probably would have found out by a diabetic coma. I had a couple of grande mal seizures a few years back that they were never able to figure out why I had them in the first place. Even though my last A1C was around 6.1 (which is great), he has warned me repeatedly that the honeymoon is almost over and I need to be prepared for insulin. Currently I’m on Byetta pen, Actos, and Starlix. He wanted to put me on insulin the last two visits, but I’m resistant. I know that I’ll have to cave, but if I can push it off I will as long as I can. He even told me the reason he was giving me the Byetta is not only to lower my crazy numbers, but to also get me prepared. I’m already a very athletic person, but I have increased my exercise and gotten even better about my healthy eating yet my numbers continue to rise. I tested before I worked out the other day (an intensive 2 and a half hour workout) and my numbers were actually HIGHER after I worked out.

Hi Kelly

Thanks, I actually named myself and changed it legally from what I was born with (I’ll never tell!)

Wow, you are lucky! My original (mis) -diagnosis was nothing so dramatic: I was losing weight, (who loses weight without trying at age 58!), thirsty and peeing a lot and pretty tired. I guessed that it was probably diabetes and asked for a blood sugar test.(fasting 325-high but I’ve heard worse!)

Can I ask, Kelly, what your hesitation towards insulin is? It sounds like you are using some kind of injection already so it isn’t the injections? (What is Byetta anyway, I’ve heard it mentioned before? )My understanding is that for a Type 1.5 it is best for us to be put on insulin right away because it helps preserve our beta cells longer and that is why it’s unfortunate that so many LADA’s are misdiagnosed as Type 2 and struggle on with just diet and exercise or oral meds until their cells die. I’m also surprised you are on Actos as isn’t that for insulin resistance, which LADA’s don’t usually have? I took it for about a year with 2 other meds and when I read it wasn’t useful for LADA’s I moaned because where I live it was costing me $200 a month.

If you are eating healthy, athletic, taking oral meds and your numbers are continuing to rise, please don’t think it is your fault and you just need to “try harder”. It is probably because your body is no longer producing much insulin. Have you had your c-peptide tested to see how much you are actually producing?

My hesitation has mostly to do with my lifestyle. I’m VERY active and I’m an accountant. Like I don’t keep up with enough numbers, you know. That and just insulin. I don’t know the whole stigma attached and all that ridiculous stuff. It’s all in my head and I know that, but it doesn’t help matters.

BYETTA (exenatide) injection is used to improve glucose (blood sugar) control in adults with type 2 diabetes. It can be used with metformin, a sulfonylurea, or a thiazolidinedione. BYETTA (bye-A-tuh) is unique and works in a different way than pills or insulin. By helping your body produce the right amount of insulin at the right time, BYETTA helps take the guesswork out of type 2 diabetes.

As far as the Actos and Byetta for that matter, I’m not really sure why I’m on them. I’ve been on Metformin(not anymore, thank goodness!!) and a couple of others that I can’t think of right now. I go in at the end of the month for my c-peptide test. I can’t remember right off hand what the first one showed, but I do remember that doc wanted to try various methods before insulin since I didn’t want to dive in head first. I’m on all of these type 2 drugs now, but I don’t think it’s going to last much longer. My numbers keep rising, while my body size keeps decreasing. I’m 5 foot 3 inches and weigh 118 lbs. (a lot of it is muscle as I’m in very good shape due to all the working out.) I have all the faith in the world in my endo though. He didn’t hesitate at all. When I walked into his office before he even looked at my chart he asked me why I was seeing him and I said to get a definitive diagnosis as to the type of diabetes I have. He had a puzzled look on his face and said that I was a type 1. I said no, that’s not what I’ve been told. Then he said, well you must be a type 1.5 because there is no way you are type 2.

Dear Kelly

Go on insulin as soon as possible if you let your pancreas die completely the disease is much less fun. your Doctor is quite progressive and wants to save as much of your own insulin prodcuction as possible. In this case it is a very good idea. The more so as you are an atheletic person and will probably need little insulin so weight gain will not be an issue.

It is normal that BG goes up after exercise. If you do a lot it will go down or you can just ignore the problem the benefit of exercise outweight the temporary BG increase.

Sounds like you have a great endo who is willing to work with you.

I don’t think your feelings are ridiculous at all. It’s a hard thing to accept. There are days I just watch myself and think, “how the heck did I get here?” I’m older than you and partially retired as of two years ago. (A month after my diagnosis I left my career and left the U.S. for my next adventure in life here in Central America!) Before that I worked fulltime and taught two classes, saving and investing to retire. I still teach online but have most of my time free to figure all this out. But I know from listening to people on here that it gets easier. It is already starting to get easier for me now that my insulin use is starting to make sense and to control my blood sugar. It was a very steep learning curve but, like most people on here I find that insulin makes it easier because it works!

One thing I find helps with the stigma of INSULIN is the understanding I have that the insulin is doing for me what the pancreas does naturally for non-diabetics. Their pancreas produces the long steady amount of insulin I get from my basal and then spurts of insulin when they eat which I get with my bolus. The basal/bolus system totally replicates the natural process of non-diabetics. John Walsh has an excellent explanation of that in his book Using Insulin. The whole book lays it all out in a very clear manner and I highly recommend it. I’m also good with numbers and think it actually makes all this easier. The numbers make sense; I like when things make sense.

You are also ahead of the game because you are athletic. I never have been and it’s hard to change that at my age. Eating right and getting exercise are all ways of keeping insulin use to the minimum necessary.

By the way, I lost 40 pounds when I was diagnosed. In my case it was needed and I’m at a perfect weight right now, but I was concerned about just going on and on with weight loss. It sounds like you also have the food thing down. Do you count carbs? When I was diagnosed with Type 2 I took the meds and didn’t change very much at all in my diet. I figured I ate healthy enough and didn’t worry about all the carbs I consumed as a vegetarian. Now I am having to learn that at the same time as using insulin because you can’t do one without the other.

The good thing about Type 1.5 as opposed to Type 1 is we have some leeway. We have time to stick our toes in the water and see how cold it is, because our bodies still produce some insulin. I also stand in awe of the young Type 1’s on this board because I think it takes maturity to deal with diabetes. If I’d had it when I was 20 I would have probably died of my bad habits, erratic lifestyle and poor coping skills. When you’re ready you’ll be ready. You might want to get Using Insulin to read up ahead of time, practice counting carbs and oh yeah, don’t forget to breathe!

I’m not quite following. So I should go on insulin right away? I’m a little confused about the “in this case” sentence. In this case meaning my doctor is going the right way or the wrong way about my treatment? Thanks for your comments!!!

Oh, I’m an expert on carbs!!! I’ve got my iPhone apps for restaurants that lets me know what I can and can’t eat. My diet primarily consists of fish, chicken, veggies, and well, just healthy stuff. Thanks for the tip on the book. I’ll pick that up tonight after I go work out.

Hi Kelly,

If you don’t mind me chiming in, your endo is right to suggest insulin. Far too many doctors wait until BG is out of control. Insulin will preserve your remaining beta cells & doesn’t have the side effects of meds. Since you’re already counting carbs, you’re way ahead of most people when they begin insulin. Being an accoutant is also a huge plus:) Good recording skills are criticial to figuring out doses.

Byetta is also given to help curb appetite, but you certainly don’t need it for this.

I’m Type 1 so never had an alternative to insulin, but reading Type 2 stories here & their struggles with meds makes me thankful I haven’t had to deal with that. Injecting doesn’t hurt either (don’t know what injected Byetta feels like), in case this part concerns you. When I was told to inject into my abdomen, I felt ill at the thought. I immediately got over it as soon as I found out with my first shot that I didn’t even feel it with short & narrow needles.

Happy to hear your good news, Zoe!

Thanks, Gerri! I’ve joined the club!

You just reminded me of another “no way” that I’ve turned to “no biggie” in the last two months! “I’ll inject anywhere but not in my tender tummie!” (no big deal, the finger pricks hurt more). “Apidra? No way, no how, I had that scary low on that stuff!” (Yeah I was taking 5 units instead of the 1-3 I take now, and taking it two hours after eating instead of just before…duh). Not eat pasta? “How can I not eat pasta, I’m a vegetarian and love to cook!” I’m off to eat a yummy dinner of chili relleno with cheese and crema sauce.

Welcome to the club, honey. Hate to have another member:(

Oh yea, I turned as white as a ghost when the nurse said shoot into your stomach. Finger pricks are much worse & more frequent.

Good grief–Apidra two hours before meals! Thank heavens you didn’t end up in the hospital, or worse. I remember our early conversations–you’ve come a long way baby (& in a short time!). Hope you’re very proud of yourself because no one could have worked harder or researched more. I think diabetes is easier for those of us with more than a touch of OCD:)

Have a fabulous dinner! Sounds divine.

Gerri, you crack me up! It is so true that we need a little OCD tendencies! Although I have been told by the CDE and endo that I should ease up… That got me to a high A1c!

Thanks, Gerri, that’s really nice to hear! Hard to believe it was just two weeks ago when you (gently) explained things were a bit more complex than I had thought and I looked at your post and realized I was so stressed I couldn’t even make sense of the words. A bit later I was able to come back and say, “hey,what she’s saying makes a lot of sense, I’ll try those things.”

Chime away!!! The more info, the better. I inject the Byetta in to my abdomen now, so that’s not really a concern. As for the adomen shots you just have to get over the mental part. It doesn’t really bother me. Thanks for all the input guys & gals. I think he is going to force the insulin on me anyways this next trip, but you’ve made it a little easier to handle (I think.) Oh, and being an accountant is NOT a huge plus. I do numbers all day and then I have to keep up with my readings, dosages, carbs, and calories. Like I don’t count enough!!!