I recently wrote some regarding my difficulty being prescribed devices, both [Dexcom] cgm, and now a pump (want Omnipod). I have heard this often, though I am being made to jump through incredible hoops, and along the way, have been told that I am:
- struggling
- cannot drive a Maserati (referring to pump) when I don’t even have the basics down
- not documenting things correctly (even though I am taking more than an hour each day documenting times, bg results, units of which insulin taken, grams of carbs counted (or looked up in a book or labels), quantities and measurements of food eaten every time I open my mouth, even for coffee without sugar or milk.
- reactive, instead of proactive (not sure what that means, given I proact as I go forward, given the test results I am getting eating different and some “new” foods, etc, adjusting Lantus when I need to, etc)
- not using “algorithms” to do my current MDI regimen, which seemed to this [famous institution] MD to be a requirement to get straight before beginning pump therapy (I asked if that meant carb-insulin ratios, no. I asked if that meant insulin sensitivity levels, no. Both of which I [obviously] use on a daily basis already.)
I am not sure I have ever been quite as criticized as this summer, by two sets of physicians and educators, nutritionists, none of whom are Type 1.
I am type 1 for 35 years. My A1Cs are good (high 5s mid 6s), my 30-day bg tester shows good 30-day-averages. My hypos aren’t all that frequent (couple a week, which, it is my understanding a pump can help), yet I get all of this pushback. There is one educator that’s on my side, who is the one who works with you after you get the pump.
I feel so incredibly frustrated. And if I can’t get someone else to work with me here, I need to return to my hometown to start again, I feel relatively certain. [famous institution] wouldn’t acknowledge my education records or labs from another med center, that doctor reviewed only one day of my so-extensive records which I have been keeping for, at this point, about 7 weeks, and, my endo in Chicago has said I need to do education at his place too, regardless of what education I have had elsewhere, also.
Is there a listing here, or anywhere, of Type 1 docs, endos ?
I feel like I am missing something. Your A1C’s are better than average and they are giving you a hard time? And how on earth can they ignore another medical centers tests? Something isn’t right…
Hi Renata, yes… something is not right. That is what I feel so frustrated about, my A1Cs are, I guess?, better than average as you say, and they are giving me a hard time, telling me my control is struggling, etc. The famous institution’s doc I got a referral to from a really quite famous doc / family friend, is who said, after I asked what I’d need to start pump therapy there, said labs, and to learn to learn the “algorithms” of MDI therapy before I could “drive a Maserati.” I noted that I recently (w/in 1 month locally, and w/in 3 months in Chicago) had labs done, and completed education courses, and he replied, “but not here.”
I am about to pull my hair out. It’s been enough, this god-complex thing I think I may be encountering, to make me want to never see a doc again, really.
True, I don’t go in for labs that often, given that whenever I do go, everything is okay.
So… when I do, and try to get devices, I almost feel like these people want to just collect money on me, enforcing me to get labs there, and take education classes again if I have elsewhere. No one gives me credit or an easy test, to ensure I can count carbs, nor acknowledges my levels of control.
It has made me cry several times. I really don’t know what to do, pretty much, at this point.
I don’t really have an endo I see super regularly, though in the past year, I have seen, now 4, all of whom discount things I have done, doubt my … everything, and refuse to prescribe devices or do so grudgingly (the Dexcom), criticize my control, and… yes, they are all giving me a hard time.
I think it’s because yes, I don’t just go yes sir no sir, I tell them my experience, and they all instead use their calculations, yet refuse to acknowledge my experience. I don’t argue with them. In fact at one place I did just say yes sir no sir, followed their advice which raised my 30-day-average bg levels, per my device, by 30 points in 1.5 weeks using that advice. So frustrating! I didn’t complain about it though, and said I can see the use of starting high if starting a pump, so “I am looking forward to working with you as I begin,” and yet… more arguments from them about my not having documented the amounts of food I’d eaten (which I had, and are shown in clear black and white of my records, which I re-visited and spelled out in further detail).
I think that mostly it’s god-complex things / feelings that these people don’t want to acknowledge – they want / need to be the expert in me. I’m just too… stupid, perhaps they think. ??
You definitely need another doc don’t know about one with T1 but you do need someone else. His reference to struggling heck we all at times have to struggle that’s the nature of the disease. Keeping your a1cs under 7% is good I’ve kept mine under for years and hear no complaints…there is something wrong. I have a website that may help in finding another Endo but not necessarily a T1 here you can find an Endo where you life.
http://www.aace.com/