At this mornings doctor appt I asked my Dr. what my insulin levels were and he said 9 months ago it was 2.6 and since my numbers have become progressively worse and harder to control it is probably even lower than that and that I AM LADA. I broke down...I am FREAKING OUT!! My biggest fear since diagnosis is the thought of ever going on insulin it is just a huge fear of mine. Looks like all of you were correct. I will get my new insulin levels back along with my islet results in 2-3 weeks but my Endo said the sooner we start insulin the better and when I asked about a pump he pointed to my blood sugar log and said "Well we are not there yet" so I am assuming I will have a little more time before being forced into insulin which is a blessing because I want to know everything that there is to know before I start. I can't imagine going on insulin right now though, I already have low blood sugar without insulin! Wondering how much longer I have... do some LADAs go on meds first?
Very well said Zoe! I am also someone that is very independent. Like you said, there is no doctor or CDE that will be looking over your shoulder 24/. There are so many things that can screw up your BS, the sooner you learn to grab the bull by the horns, the better. I was very fortunate because back when I was diagnosed (27 years ago next month!), doctors were more into the fixed insulin amounts way of doing things. I had a very progressive doctor for the times and he wanted me to be able to adjust insulin on my own.
There is a lot of conflicting information out there and there is also a lot of wrong information being put out there. Lil MaMa, like Zoe, you also seem like someone that is good with going with your gut, so you will be fine!
I benefit from more information, too. When I was first diagnosed, I almost ran to the internet, and found misc.health.diabetes, a very feisty, but informative group! I made friends with some experienced people, including a CDE, who patiently answered all my questions, like you are doing for LiL MaMa and Lynne.
As far as independence, I discovered that it only goes so far -- you need to know when to ask for help if you need it. My independence led me to try to fight increasingly high BGs for months, until I was constantly in the 500's and over, no matter how much insulin I took. My usual dosage had been 20 - 30 units a day, and I couldn't figure out why I wasn't responding to as much as 150 units. My endo was no help -- he had nothing to say about it, so I went into a coma a week after I saw him. (I've since fired him, and have a new one). So now I know that if my BG goes over 300 and won't come down, I need help. Neither I, nor my new endo know why it happened -- I'm now down to 30 - 40 units a day, but I suspect it may have been a form of auto-immune insulin resistance, which I didn't help by eating carbs. This particular condition usually lasts about a year, which mine did, and is a BEAR to deal with!
I agree with Tom, in a perfect world, your basal should not be covering food. Real life then steps in and you exercise more than planned and you have to cover that basal with food. Most people take about 2 shots of Lantus or Levemir. Even though they are supposed to be flat, your body has other ideas about what it may or may not need.
One thing that you should do is learn how to do basal testing. Most doctors don’t teach you how to do that. That is really the best way to figure out if you are taking the right amount or how long it is lasting for you. Technically, you should be able to skip meals or eat late if you want without worrying about your BS crashing because you have too much basal in you.
It's really hard with LADA because your needs will be changing constantly over the next couple of months or years. And yes, you and your endo need to agree on using insulin the way YOUR body needs it, regardless of what anyone else does.
Please do read some of the books that are available -- one that I liked was Stop the Rollercoaster, by John Walsh and I think someone else whose name I can't remember. It won't be entirely appropriate because it's written for well-established Type 1's and Type 2's on insulin, and doesn't take into account how much a LADA's needs can change, but it does give you a good picture of insulin use, and a peek into your future!
How do I learn basal testing?
Here are some instructions that Gary Scheiner has.