I'm ignoring my CDEs!

A week or two ago I went to the endo and confessed -- I had completely stopped turning in my omnipod/dexcom data to my CDEs and been making adjustments to my rates and ratios all on my own.

He got the A1C results back and... 6.0! He says I'm doing fine and if doing my own thing is getting results like this, to keep it up and just to not forget a healthy dose of common sense.


So, now that I'm approved by the doc to do my own thing... what are resources I can use to find out how to change my basal/I:C? I have a decent A1C, but I keep having big spikes (up to 200-250) that make me feel horrible. I tried to google up ways to fix this, but I'm only finding MDI stuff.

I'm more than willing to pay for a book, but I want to hear that it's worth the money and going to help me learn how to set my own ratios before I shell out the dough.

Thank you! :)

I'm posting a reply so that I can see the responses. I'm not happy at all with pumping.

Pumping Insulin by John Walsh is the way to go! Congrats on your great A1C and your declaration of independence!

So often the medical professionals wish we would take ownership of our diabetes but when we do and start calling the shots, they make not like it. Congrats to you for taking things into your own hands. And congrats to your doc for being reasonable.

As far as book resources go, I like Think Like a Pancreas by Scheiner. Once you master the concepts in this book, you'll be well on your way toward cutting dependency on the medical staff. There are other references that are equally solid, like the Walsh books. You may want to sample the writing styles to see what holds your attention the best.

An A1c of 6.0% is great but you also need to lower glucose variability to be safe. You already know this with your mention of post meal spikes. Post meal spikes may be controlled with several tactics like pre-bolusing, super-bolusing, lower carb consumption, and well-timed exercise. A solid basal profile also supports good post-prandial BGs. There are a lot of moving pieces to this puzzle and none of them exist in a vacuum.

Are you familiar with the concept, "eat to your meter"? You basically let your post meal BG readings identify what foods are safe, BG-wise, to eat. It also identifies foods you may need to give up.

I've noticed that when BGs start to oscillate, they tend to want to keep oscillating. The converse is true also: when BGs are less variable they tend to want to stay less variable. In other words, I find that there's a "stickiness" to BG trends.

Now that you're in the driver's seat, don't give it up! Discover and refine your bag of tricks. Never stop learning. You are the one with the most to gain/lose. I love the title of this post!

I'm gonna have to agree with my more recent experience with getting my pump, my CDE normally is a very good cde who is pretty okay with letting me managing my own disease, as it's my own disease. But I got restricted to one brand of pump due to the event capture involved with a minimed pump. She wants EVERY SINGLE detail but doesn't want me to keep all of this data for myself like I HAVE BEEN since I started MDI. Granted, I'm okay with the minimed pump I just wanted to try the ping and t-slim for the heck of it (and was leaning towards the ping, so I'm a bit disappointed). But I figured if i show her I can handle my control completely once I have the tools maybe she'd let me try other pumps in the future. I really hate to prove further that I know how to control my diabetes but really. I don't want to switch providers because I do like these people other than this issue. I honestly don't know why my cde worries about me since I'm kind of anally retentive as far as it comes to my diabetes and it's like I have an obsession with recording EVERYTHING possible about it to the detail and if I had a fax machine I'd fax her the results when she needed them (I'd even get a fax for this, why not?) but that wouldn't work for now so I'm just gonna take what I can get and prove myself until I can tell her to just let me go do what I want for myself. I'm still really new to diabetes so maybe that's why she doesn't let me just fully have my own reign.

I'd agree that this is a good thing for you, read the book that Zoe suggested, I've heard wonderful things about it (and will be getting it when my pump is ordered) . If you haven't read the book (Think Like a Pancreas) that Terry suggested that is a great book as well! (I like it, I read it when I was really new to diabetes and helped a lot and I remember a good chunk of it being about how to handle both mdi and pumping?) .


Just FYI -- you don't need to post a reply in order to follow a discussion. You can also do it by clicking the "follow" link.

Nothing wrong with posting a reply -- just pointing out another option!


Just a philosophical reflection . . .

I do NOT permit my medical team to dictate to me. I'm the one who has to live with this 7x24, not them, and while I solicit and highly value their information and opinions, the responsibility to act is mine. Therefore I require all the information myself, and the final decision making rests with me.

When I have someone on my medical team who insists on treating me as a subordinate rather than a partner, I replace them. I'm the one with everything at stake, not them. And the stakes are just too high to do anything else.


Eloquently put, David.

100%. I'm glad the writer has taken the ownership. We are the ones who are high, low not the provider.

Hey Khurt. Say it isn't so. What is going on with pumping not working? you can't have had better success with mdi. how long have you been on the pump?

how long have you been pumping?

Oh. Thanks David.

Almost two weeks. The trial and error is infuriating. I feel like I'm back in diabetes school after 8 years of being T1.

I wrote a blog post about my experience so far.


Bravo! I do the same.

You know, you don't need your CDE's permission to download Carelink for yourself once you have your Minimed pump. You don't even have to tell her. There is a lot of information there that you shouldn't have to wait weeks to see for yourself. Good luck.

Hi Khurt, I just read your blog. Sorry you're having so much trouble..but, as many have said, starting a pump is a journey and not a panacea to anything, it does indeed take a lot of time and adjusting. Some, very few, are lucky to get things right quickly. Folks on pumps continue to adjust their basal rates, etc.. There's posts on here about mom's starting their children on pump and couldn't get BG's below 300's. It's a lot of trial and error. I too haven't had a good experience, either double arrows down on my CGM dropping at night, or days of highs with no relief. I always go back to MDI, although I have a very hard time with my levemir. I think you're right, you shouldn't have to adjust your meals around the pump, that sounds ridiculous. Are you still trying? What was your reason for starting the pump, DP, etc...?

IMO, it's not about permitting your medical team to dictate to you. We, most of us, look for guidance when starting an insulin pump. We're hiring whomever to guide us through this. Putting someone on an insulin is a huge undertaking for all involved, the D Team as well. It's again a lot of trial and error and a lot of time put in on their end, too. Crap, they have NO idea what someone is going to do independent of them, in terms of programming the pump, over bolusing - correcting, nor do they 'know' how pumping insulin will effect their patient, either too much, not enough, etc... A pump is a very different experience to MDI, most T1's are rather insulin sensitive and become MORE so on a pump. The Endo Team basically becomes responsible for that patient on the pump, you follow their rules at first. If you don't like it, you have the option of going somewhere else.

Do your thing mcfc1987!! I don't even have a CDE to ignore but would do the same if I did. When I started pumping (in 1990), we did not have CDEs and we learned how to manage our ever changing needs without calling for advice. Things have sure changed. I never call my doc for pump setting advice and never will. With the new and improved pumps and data collection ability of them, the pumper has what they need at their fingertips. I am waiting for my pump to learn how to fold the laundry soon.

It is a really good idea to learn how to set and figure your ratios because they will change from time to time. The books suggested are pretty good and I think they are worth the dough, but really the best resource (IMO) is your meter.

well, that's the thing...many D Teams and Clinics require diabetic to follow their pump protocol. I saw one endo who required all diabetics starting a pump to have a 'pump buddy', they required it and this so called 'pump buddy' had to sign something stating he/she would indeed be responsible for checking on me (or whomever) and checking my blood sugars..huh? I declined that office but I would imagine it may be generated from negative, past experiences of putting someone on an insulin pump.

Well, I am glad that the OP is taking control of her pump and making way to manage her diabetes with it. I support that effort! No D Team or Clinc with requirements for this girl. LOL - when I get a new improved pump the only "requirement" that I have to fulfill is passing the on line pump schooling before the mfg will fill my supply orders. Easy and quick and no trainer, cde, doc, team, or anyone needed. Just me and my pump! A pump buddy requirement? What the?? Sarah, I thought you were MDI - did you slap your pump(s) back on???

that is right, david i will listen to advice, take some, leave some.!