Establishing a Diabetes Care Team

Type 1 and LADA
1

Hi,

So this is my first post. Just some quick background about myself. I'm 32 years old. I've been type 1 since I was two years old, so more than three decades. For the first 2/3 of my life, my diabetes was only controlled casually, both by my parents and myself. When I became an adult, I started taking more responsibility. I started on an MDI regimen. However, insurance coverage was off and on. Thanks to the ACA, I can finally rely on consistent coverage hopefully, which starts in a few days.

I haven't seen an endo in almost ten years. I have been relying on a primary care doctor at the local health clinic. He is nice but doesn't really understand my questions. For example, when I told him my Levemir was not lasting 24 hours and my blood sugar was rising, he simply recommended I increase my dosage, which resulted in me getting dangerous lows. After a lot of hard work, I was finally able to get my A1C down to 5.6%, which was a huge achievement for me.

Anyway, my questions were about your respective diabetes care team.

  • Who's on it?
  • How often do you see them?
  • Does your insurance company give you any difficulties regarding your visits?
  • What about switching to pump therapy and CGM? Did you have to fight for those things?

The reason I ask is because I have a number of issues that have gone unresolved over the years, such as neuropathy and possible gastroparesis. I've had two severe hypo episodes that involved an ER visit. Any advice would be helpful and appreciated. Thank you.

2

LOL at "casual control", I did the same thing for a long time and it was more hair-raising, that's for sure!

I am sort of inbetween teams now. I had a doc I liked. I just saw her and that was about it. I had one instance where I had a serious hypo and got an email from Brenda who sounded like she might have been a CDE but didn't have an email signature or anything like that so I'm just guessing. The doc referred to her as the nurse, rather than the CDE. Perhaps I'd have felt better had she been "sold" as the CDE but she wasn't. I'd already made the changes she suggested, or the doc suggested through her so it was sort of a moot point. I never met her, the office didn't take me around to introduce me to the team or anything like that. I know they're busy but maybe adopting a sporting motif ("This is Knuckles, he's the goalie..." LOL...) might be useful.

At any rate, my doc moved so I switched to another partner and, at the first visit, I know my A1C was 5.2 b/c I'd checked online and she came in and said "it was 6.2, which is pretty good" I questioned it and she showed me the tape which was a bit illegible and I thought alright, there's two strikes at once, it goes up 20% and you don't question the result *AND* you say that it's pretty good which, even if it's the case, it's not pretty good were it to have been jacked up that much..." so I switched docs.

The new doc was at a practice that seems to be a bit bigger, longer hours (good!), etc. but is farther away. I liked the doc but this was right before the Enlite was reduced so, when it came out, I called Medtronic, they're like "Enlite w/o 530 pump= off label, your doc has to call it in..." so I called and left a message and didn't hear back for like 10 days, called again (GRRRR...) and left a message. The nurse (?? she didn't identify herself. Of course they can be a nurse and take BP and stuff w/o being a CDE but you can't be a CDE w/o being a nurse. While CDE requires extra instruction and expertise of which they should be proud, why don't these people flash those "antlers" around?) called back and scored some points by being apologetic as they had been swamped but got everything sent to Medtronic and I had the new sensors like 4 days later. She'd said "schedule a class the insertion's different" and there's the whole issue of how long they last. So I called and, again, it was 2 weeks to get a call back and I'd already figured it outmyself so I blew the class off. This degree of responsiveness is not really acceptable. I'm not really having any "problems" but CALL ME BACK!! If I was having a problem (e.g. yesterday when I was quite ill and took about 10U and ran basal at 200% for 6 hours w/o any food and was still > 200 for a while before it finally "broke", perhaps oddly after I dropped a Celebrex b/c my joints were really achy. I just dealt with it myself. What else are they gonna tell me to do?) how would they be? I dunno.

A lady I run with has thyroid problems and loves her endo (I see you're in Westmont, the doc is Mary Ann Emanuel in Burr Ridge I think? She was a top rated endo in Chicago Magazine which intrigues me...what could she do for me? Would she introduce me to her team? hmmm...) but, as I just switched and am not into the hassle of switching again, I'll probably let it ride.

Re your questions about the pump, I was in pretty much exactly the same situation you were, just working with GP, etc. in 2008. My A1C went up when I started trying to lose weight (no direction from doc, just winging it, I didn't know about carb counting, etc...) and working out a lot more. He had recommended a pump before and was like "Great! I have to refer you to an endo for that..." which was ok, same clinic, right next door so no hassles were involved and, perhaps because of the situation, I got right in and had a pump about 4-6 weeks later. It worked really easily. The clinc was like "Do you want Medtronic, we work with them..." and, at the time, I didn't know squat about the various kinds of pumps and was like "uh yeah, sure, whatever..." and got it and have liked it a lot, although I wish it was waterproof as I've fried two with BUTTON ERRORs on runs.

The old endo I fired I was seeing every 3 months, which dated back to the hypos and wasn't really necessary for me but I like knowing what it is and getting patted on the head when it rocks, which is always! LOL. I got the CGM in 2008 as I was starting to run 1/2 marathons and figured it would be very helpful, which it was and pretty much asked the doc, the Medtronic nurse did a test to see if it would work and said "wow, these are really good" although I saw numbers all over the place on the chart. Maybe it was the scale or something. That particular test pissed me off b/c the CGM was the "pro" model that tracked the data but I couldn't see it. The current endo has backed off to every 4 months so I will have a month of "dead time" that isn't accounted for in any A1C which probably isn't that big of a deal although I am going to start another odd workout and start eating more in a week so we'll see how that goes. I could call and see what they say about it but by the time they get back to me, I presume I will have figured it out myself. Bah humdoc.

3

My care team is made up of myself, my endo and my pump nurse. My bibles are Think Like a Pancreas, Using Insulin and when I moved to a pump, Pumping Insulin. I'm currently using a Dexcom G4 and a Tandem Tslim insulin pump. I use myfitnesspal to log food info.

I have used the info provided in the books and from my CGM to get my A1C down to 5.8 and keep it there without going low. I do most/all of my dose adjustments myself and send in my CGM logs to the office periodically. I see my endo and pump nurse alternating every 3-4 months. It's more for an official waving of hands, do I need refills, etc.

I am blessed in my employer and the insurance coverage provided which covers most things D at 100% - which means I will not be retiring until they get Medicare coverage for T1 fixed. If need be I would go back to MDI but will NEVER give up my CGM!

4

I've heard/read about this "team" approach to diabetes for many years. It sounds great and makes sense. Diabetes requires many disciplines, the high level endocrinologist, the nutritional expert dietitian, and the day-to-day certified diabetes expert.

I've yet to see this concept executed anywhere near well. The biggest problem, I think, is the severe time constraints that the US medical system imposes on this approach. Even getting a whole hour across all these disciplines every three months is a generous time allotment. And no one, not even the in-the-trenches moment-to-moment expert, the Certified Diabetes Educator, is ever available for enough time to fix problems and stick with you for many days at a time and willing to communicate via phone, email, or whatever it takes. If they did this with all their patients, they wouldn't have enough time to make a living!

I've been at this for 30 years, too, and have been a patient of many practices that provided a team approach. The biggest gains I've made with diabetes BG control I have made on my own with little to no support from any medical team beyond writing a prescription or letter of medical necessity for a pump or CGM. The upper level strategy and day-to-day execution was all mine. My biggest breakthrough came with switching to a low carb diet, a tactic that was simply tolerated by the team, never endorsed or encouraged!

Now I look to my medical support to keep an eye on my labs and identify any complication concerns. It also can provide a referral network for complications. I also need ongoing support for Rx's. Without those needs, I would not require an endocrinologist, dietitian, or CDE.

Sorry that I am jaded about your plan. I know there must be diabetes medical teams out there that work very well but I haven't found them. I would recommend that in addition to acquiring access to doctors and other professionals, invest in your yourself, your knowledge and expertise. You can become an expert in your own body's needs; you'll never have to wait for that return phone call, authorization, or email. In fact, at a 5.6% A1c, you're already a BG control expert!

5

I totally spaced it but I did try the "team" approach when I got my pump, thinking that a CDE and dietitian might help, I saw them both during the 30 days I was yutzing around getting a log for insurance to determine whether I should get a pump or not. I liked the CDE personally but we were working with what I was doing then (R/NPH, MDI, augmented by a variety of crazy/ dangerous things like running up and down our stairs when my BG was up, IV shots, etc...) at the same time I was starting to investigate the DOC which I liked a lot better as it was pretty much available all the time and had links to lots of useful information. I kind of walked away from the team as, once I got going, I just ran my own show.