I was just officially diagnosed as LADA about in February of 2009.
Although I’d felt generally crappy for a while, I thought it was just getting older or depression. A random physical with my general practitioner in November of 2008 turned up high fasting blood glucose and an A1c of 6.5. That was the first mention of the word “diabetes” for me, and I pretty much ignored it (denial, possibly?). I told my GP that it must be just an aberration, and I would do better on my food intake and exercise (over the holidays, no less). He diagnosed me as type 2 and prescribed talking to a dietician and a consulting nurse about using a glucose meter, but I didn’t follow up on that rigth away. I also deferred on seeing a specialist until we could do a follow up test on the A1c and clear up what obviously must have been a mistake.
It wasn’t until I went to see the dietician in January that I started to get a bit concerned. I got the apparently classic response of eventual LADAs that “you don’t look like a diabetic”, I guess because I didn’t fit the profile she was expecting for a type 2 at 5’10" and about 180 lbs. She saw my test results and asked how soon I was going back to see my doctor. I was also already eating pretty close to her recommendations (thanks to my wife’s nutritional/culinary skills) and excercised regularly and pretty intensively. The dietician laid out a diet plan that I would soon discover was way too high in carbs for me to able to follow and maintain any sort of control.
Next stop, consulting nurse. She also said that I didn’t look like a type 2 diabetic. She set me up with a meter, and when we did that first test I was at 250! She asked how I was feeling and how soon I was going back to see my doctor.
I did another A1C/fasting glucose test the next morning, and scheduled a follow up with my GP for a week or so later. The results showed that my fabulous holiday diet and exercise plan had led to an increase in fasting BGL to the 150 range, and an A1c of 7.6. That was when I had to face reality that I was certainly diabetic, but I didn’t fit the profile for either type 1 or type 2. I was referred to an endocrinologist, with a month’s wait to get in for an appointment. In the meantime, I tracked every gram of everything I ate and dilligently tested my glucose levels 6-8 times a day. I felt incredibly helpless watching the readings swing wildly without being able to do anything about it. Sometimes I could pin it to something I ate or did, other times it was completely random. I started cutting way back on the carb intake, which helped a lot with the highs, and began to lose weight pretty rapidly since I didn’t want to increase fats and proteins.
I started scouring the web through this time period leading up to my first appointment with the endo (stumbilng across this website too). From everything that I read, I was pretty certain that LADA would be the diagnosis, and I wanted to contact the endo before my appointment to see if he could order the c-peptide and GAD antibody tests to save us all some time. I finally had my first appt. with the endo in early February, and he gave the by now expected response - “you don’t look like a type 2 diabetic.” To my relief the endo also suspected LADA, and after a full hour of exam and discussion, ordered the c-peptide and GAD tests. On February 26, I got the results back that c-peptide levels were at the extreme low end of the “normal” range, and my GAD antibody was over 40. I finally had a name for what was happening.
I’ve been on Lantus once a day for just over a month, and have settled on 12 units as about right for now. My glucose levels are generally ranging from the upper 70s to mid 150s throughout the day on that dose, with my testing average down below 120. I sometimes go higher if I eat too many of those pesky carbs or don’t exercise at least a little bit after a meal, but I haven’t strayed above 200 since starting the Lantus. I am obviously still producing a fair amount of insulin myself, which is sure something that I would love to keep doing. I have not yet had a follow up A1c since starting treatment, but I’ve felt so much better since becoming aware of what was making me feel so low energy and at being able to do something about it. It has been kind of like walking out of a thick fog into bright sunshine.
I have this sense of urgency that there should be something I can do to preserve my remaining beta cell function by fighting the autoimmune response, but that doesn’t seem to be part of the program. It is frustrating to me just to treat the symptoms of type 1 diabetes without any ability to get at the actual autoimmune cause of the disease. I am dreading the full beta cell shutdown that seems inevitable, as for now the diet, exercise, finger sticks and daily Lantus are really not that much of a burden to deal with. I know my life is going to get a lot more challenging when my final beta cell gives up the ghost and I have to start the fast acting insulin boluses at meal times. I am not looking forward to the complexity, but at least I feel that I am getting some really good practice time in before the real type 1 game begins.
So for now, I’ve lost about 10 lbs. altogether, I am eating healthier than ever before, exercising more, and I feel younger, more energetic, and like I can think more clearly than I have at anytime in the past few years. Of course, I didn’t need to get diabetes to make healthy lifestyle choices and changes, but it has certainly served as the motivator that I have needed.
So that’s my diabetes tale so far. I wrote this as self-therapy, but if someone has for some reason read this far, thanks, and I’d love to hear your thoughts!