I only keep in touch with the endo a couple of times per year, mainly for pump/CGM prescription purposes. My PCP writes all my insulin, test strips, and non pump scrips. I pretty much tell him what I need. I have only used a CDE once in my life. I have had problems, but generally find the medical professionals are not the answer for me.
Here is my SOP: I either keep painstaking record on a spread sheet (my favorite way to track because I am aware of everything on a daily basis) or I use CareLink. I have been having overnight and morning highs, so I downloaded today, read reports and made adjustments. Then I wait and see. I do it a little at a time and I play around with it until I find a winning combo...then everything goes haywire again and start the process again.
It is my body and I understand it better than any doctor, endo, CDE. I also know diabetes better and what works for me. I totally believe in being in charge.
that's great. i don't think we should, however, discourage anyone from seeking advice, guidance, whatever from a health care professional or a DTeam helping with an insulin pump start, especially since this poster has only had T1 for 5 months, probably in or maybe coming out of honeymoon, etc...Type 1 is much easier to manage when one still has some beta - alpha cells on board. As time goes on, this disease becomes much more difficult to manage with or without a pump and for a newbie, that can be both frustrating and overwhelming, just my opinion.
She said "So, now that I'm approved by the doc to do my own thing..." !!
I say YAY - go for it. And get the books suggested, and prepare for change.
As time goes on it is easier to manage because we have the know how, or at least for me.
I am currently working on figuring out new basal rates for increased insulin sensitivity, season change(?), and more fun outdoors. My doctor can't guide me on these changes, she expects me to do it myself. And my I:C ratio is needing some adjustment, but I just bolus less until I get the basal figured. Pumpers should become their own health care professional and for that matter so should anyone using insulin.
Like Spock, I need my docs for rx's, test ordering, and to help me if I am sick.
I haven't been sure which person at the last two docs was actually the CDE. I'd sort of like it if they were a bit more fond of flashing their "antlers" and letting me know "hey, I'm not just the nurse, I'm the CDE!" as I'd perhaps pay more attention to them if I knew they had some sort of credentials.
At the same time, I went through a very brief (2 weeks?) fine-tuning period with my pump and haven't really gotten any advice from a doc since then. I just run my own show. If my BG i low, I turn my pump down and try less insulin. If it's high, I figure it's not enough and play around until it settles down. After meals= bolus, fasting/ before meals= basal and that's about it. Whatever your doctor and/ or CDE suggests should go along those lines. The only thing that makes me a bit nervous about that is are the increments too small but I get pretty nice changes out of .025 U/ hr!
for me it's been much more difficult, during my honeymoon period I rarely ever went above 130's and I thought that was 'high'..now, with no beta-alpha cells, cpeptide left, etc...I can easily go to 300's and down to 40's, numbers I've never seen before. I think eventually it gets easier but IDK, still feels rather ambiguous and uncertain to me. I'm always grateful for any guidance or suggestions my health care providers give me..the more help the better (at least for me), that's why many of us come on here, for guidance, suggestions and help...what's the difference, really? If there was no need for any of us to ask for help (either novice or rookie), support, etc...there wouldn't be many posts on this site or any other T1 site. For those who come on here never seeking or needing advice or have management issues - questions, we're all grateful for the suggestions provided.
possibly, no one knows t1 better then other t1's. there have been many, i would imagine, who have and had very knowledgeable endos, CDE's, etc..at least i hope so. they can't all be bad, can they? tudiabetes tends to be a bit 'cheaper' then going to the docs. :) Many novice, experienced T1's have sought out additional help at Joslin, hiring Gary S. as a 1-on-1 consultant, etc...sometimes it does take other eyes to get a better perspective.
And a lot faster. I had a couple of "oh, we need to see you quickly..." appointments but usually, they are booking months in advance. I'll have changed my pump settings a bunch in that timeframe.
As said earlier, I never had a CDE and won't bother. My endo who got me pumping is long gone (I tried to get him to move with me when we relocated but he said no - LOL)! I would recommend him in a heartbeat. So I moved on and found an excellent IM doc who has my back. She does not mind referring if/when necessary but trusts me to manage my diabetes, and provides the tools and insulin and other necessities as requested or needed. I never heard of a CDE until I got hooked on the DOC. I think we should train them to receive the credential!!
And at acidrock23...those .025 U/hr are the best improvement on pumps ever. When I started you could basal 1 unit an hour, and bolus as needed (the insulin was not rapid though so maybe that was the saving grace). 1 unit an hour today would have me in hypo la la land.
"Think like a Pancreas", or "Pumping Insulin", both excellent books, both can be found on Amazon. If you don't already have it, "Calorie King" for the carb counts on about a zillion foods.
This was not meant to discourage her from seeking assistance from medical professionals. It was merely my SOP.
That said, I went to the Joslin Clinic in Boston last fall for a "tune-up." I needed to talk to the top folks, get caught up on new things, get some suggestions, etc. In the long run, it was helpful. But it was a four day intensive training program, not just a visit to a doctor.
"Training" the pump was frustrating. We'd get the basal rate for one part of the day worked out but then I'd get massive hypos at another part of the day. We'd make adjustments and then some other part of the day would go out of whack. I have no interest in long term complications so I walk the tight rope between 70 and 140.
