I’ve adjusted my own doses since day 1. Endo’s don’t know you as well as you know yourself.
For me, this has been a big issue, and the reason I’m interviewing endos right now and trying to find a new one. Little background: I have pre-diabetes/diabetes secondary to something called congenital hyperinsulinism (a genetic disorder). For years I overproduced insulin, but now it seems my beta cells are giving out.
What I have trouble with is that, having been checking my blood sugar all my life, I know when the patterns change and when there is trouble on the horizon. Sometimes, I really do just want to be able to go into my endos office and say, “This is what I need.” I know my body fairly well and because I’m dealing with the long-term effects of a rare condition, I sometimes have to do a little trial and error to find what works. So, it’s really important that doctors let me just try something and see if that brings my blood sugars back into a generally accepted “normal” range.
The hard part is that docs are often very rushed and don’t have the time to listen and assist with these kinds of personal decisions. To be honest, I’ve made so many med/insulin changes all on my own at this point that I almost feel like doctors are just people to write a prescription. Frankly, if I could get everything OTC, I probably would.
I’d like to see a change in medicine that is more patient-centered. For example, most of the time, I really don’t need to physically SEE an endo. But it would be nice if I could shoot him/her an email with my BSL logs to show them what I’m seeing and to see if my decision for changing something makes sense. Does such a thing exist?
For you it’s even more important, because if your condition is rare, they may not really know all that much about it. Good luck! 
That’s what I do with most of my docs, Terry, endo included among them; and they tend to work with me as a member of a team, not as a "do this do that , just like I said to!"kind o"f approach. bBt then I have been a diabetic 43 yrars and I do Know my body… If I was newly diagnosed, I would need a lot more support from a lot of poeple besides the doctor; a dietician, CDE, Nuese practitai\oner to helpo\ wit h the daly dosage adjustments. That is exactly what I had when I first startd the pump, and it really helped!!! Now I can talk to my Tufriends and get your wonderful input as well.
God Bless,
Brunetta
I became diabetic at 15 (39 years ago). I have adjusted insulin, food, etc all since the beginning. At that point, there was not a lot of information available. Generally I was chastized for not wearing shoes, needing eyes checked, etc. By the time there was more structure, I was just independent enough to resent the doctor getting overly involved! However, only one doctor I went to was ever controlling enough to want to change my insulin and diet and I dropped him immediately. A Type 2 diabetic friends really likes him for a doctor because he is more involved. My vote remains for hands-off!
I have had diabetes for over 40 years now and have had no problems with docs. until starting with an endo. Truly I believe I was dealing with an ego instead of a person. I have been adjusting my insulin for the past 6 months now and have my A1c down to 5.8%. Up until six months ago my A1c was 7.4%, with listening to the endo. Since trying it on my own I have seen a vast improvement in my energy and interest in varies activities.
From what I have been reading you appear to have your goals mapped out. So stick with them, after all medicine is not a true science. Just hang in there…Chele