I was having higher and higher blood glucose readings. Exercise was making it worse. I couldn’t really eat anything without it reflecting an even higher number flashing in the meter window. I felt horrible, actually worse than when I was first diagnosed. My head continually felt “thick,” it was hard to concentrate, I was exhausted, thirsty and SO frustrated that I did everything I was supposed to and it didn’t help.
The guilt associated with diabetes can be devastating. When you’re told that following “the plan” will eventually lead to a happy, healthy life; that you’ll eventually be off meds and be able to live “normally” with diet and exercise and that slips away, you question everything you’re doing, eating, etc. You keep looking for that one thing that you’ve missed. Did I miscalculate the carbs? I should’ve exercised just 10 more minutes! Should I drink more water? Should I workout again or sleep it off? It’s maniacal!
That’s the state I was in when my twitter friends jumped in to help. One said that my story sounded very familiar to her. She, too, was diagnosed as a Type II and it was later changed to Type 1.5 LADA. She (along with a few others) suggested I get in right away to see an Endocrinologist. (a Dr. that specializes in diseases of the Endocrine system, a specialist in diabetes) I started searching on the internet only to find that most Endos are either not taking any new diabetes patients, or they’ve got such a large patient load that it takes 3-4 months for the first appointment. Then another friend on twitter jumped in to help. He was going in to see his CDE, and mentioned my story to her. She and I spoke on the phone and she suggested, to get in earlier, that I volunteer for a research study that KU was involved in. I would be able to see an Endo immediately, get free office visits, free lab work, free meds. . it was too good to be true!
I made the appointment and went in to see the CDE in charge of the clinical trial and the Dr. As I explained my symptoms and the journey thus far, they each wrinkled their brow and answered several times with a, “Really?” As he ran the end of the reflex hammer across the bottom of my foot he said, “I’d like your primary physician to run a blood test for you. You’ve got an atypical presentation and I’d like more lab work.” What? What’s atypical about my presentation? Then he said it. . .I don’t think you’re a Type II at all. I pressed him further, asking which symptoms were atypical. Apparently, the fact that it hit rather suddenly, I have no immediate family members with diabetes, the fact that I can feel my blood glucose rise and fall are not typical of Type II.
The test he wanted performed was a GAD-65 Antibody. This test looks for a specific antibody in your blood that shows your body is fighting against the beta cells in your pancreas. A normal test result is 0.05-0.1, mine was 25. This means my body has been building up antibodies to fight my pancreas and my pancreas is shutting down insulin production. Indeed, I am not a Type II, rather I have LADA, or Latent Autoimmune Diabetes in Adults, also knows as Late Onset or Insulin Dependent Diabetes. I was able to get on insulin and start seeing the Endo this week. I feel so much better already and look forward to what fine tuning of my treatment does for my day-to-day life.
I hope my story helps another along the path, if just to let you know I get it, I’ve been there. I know how a high makes you feel like your head is full of Jell-O. You question everything you did that day, what did I eat wrong? Did a miscalculate? Should I exercise? Should I not? AAAGH
I also know how a low can bring on a feeling of panic, fevered, shaking panic. All you know is you MUST eat and you must eat NOW! You feel like you need to just open the fridge and start shoveling it in. Your brain is trying to remain calm and say. .no, I’m ok, and your body is screaming, I’m dying! Eat something NOW!
So, I hope you’ll add me to your regular blog reading, comment, have a conversation.