During my really bad endo appointment a couple days ago I ran into something I wasn't expecting. Before I go on I would like to mention that I got referred to this clinic through a private medical clinic. They are supposed to be the best in the area. I won't disclose the clinic information because that's not right. I have nothing but good things to say about my CDE that I see there. As my last post stated, through all my hard work and efforts my A1C has gone up, my cholesterol level has gone up, I've gained weight and I'm now suddenly in the very high risk category for heart disease. There was that number on my test result that was bolded** with double asterisks. You KNOW what I mean! Now because I'm connected with the D-OC that comes with news and information from fellow diabetes patients. It comes with fellow diabetic stories first-hand and a lot of credible information from credible sources. Again, no names or blogs mentioned but I'm sure you get what I'm talking about.
I asked my CDE a month ago about her thoughts on Symlin and if it might help me. (Symlin is an injectable medication to help prevent post meal spikes and regulate blood sugar when combined with insulin treatment}. What is the first thing she said? "What is Symlin?" I tried to explain to her what I've learned about it through the Symlin website and the ADA website. I know Symlin is a brand name. She quickly changed the topic. I didn't pester because she's a CDE, I thought I'll ask my endo when I see him next month.
So I brought it up with my endo two days ago and got the very same response. "What is Symlin?" Again, I explained it. As soon as I mentioned its another hormone that helps reduce post meal spikes he knew I was talking about Amylin as Symlin is a brand name. I said I had been researching it on the net. I mentioned how I knew a lot of people using symlin through my connection with other diabetes bloggers. What did he say to me?
"You can't believe everything you read on the Internet or from other bloggers."
Okay fine, you got me there maybe if it was 10 years ago. Wake up and smell the bandaids dude! Think about WHERE I'm getting this information from! The internet has become an intense trusted resource for medical information.
I mentioned the people I know are mostly Americans and maybe that has something to do with it. He responds by telling me he is a member of the ADA and he's never read anything about Symlin as a treatment for Type 1 diabetics. He continued on for a bit but I stopped listening because I was irate. Does it have something to do with Canada? I don't know but he sure made me feel like an idiot. I am composing an email to him with links to the ADA Symlin page as well as the Symlin Website. I know reputable bloggers like Amy at Diabetes Mine has written about it too. What would everybody out there on Symlin say if I said "You're all fooling yourselves there's no such treatment." I mean really, come on. The D-OC isn't just a bunch of random folks posting ideas and imaginary treatments. We are REAL people with a REAL disease living REAL lives with REAL medications.
Why are doctors so quick to pass off information from patients as phony? They are so high and mighty sitting on top of their hefty degrees. They are reluctant to learn anything from a patient. I think us patients who live the disease 24-fucking-7 might know a thing or two about what's available. I'm not full of shit, it's not like Symlin is a magic cure fluff I read about on the Internet. I'm not stupid, but my endo is a mighty know-it-all apparently.
Also, how odd I write this post in the morning ready to post it in the afternoon only minutes after seeing Kerri's post about Symlin. Wow, strange worlds.