One frustrating subject of discussion in our community is our relationships with our endos and diabetes clinics. I remember, for instance, @Irish telling us about her HORRIBLE experience last time – I felt that calling her practice up and telling them off, I was so T’d off about how they had treated her.
We are no exception. It seems that, every time we go to our endo with good A1c results, the only thing we hear is how terrible we are at managing our kid’s diabetes, and how we can get him to have fewer lows by being higher – why don’t we go for a 7% A1c? The last appointment was really bad – our endo scheduled us with an intern who proceeded to tell us that, when dealing with a puberty peak, we should only dose when the peak reaches its apex, and how do we know it won’t come back down on its own? The discussion went so badly that I purposefully waited longer for the next appointment.
Well, the appointment was this morning, and, as I mentioned in another thread, we had a 5.4% A1c, with a moderate amount of lows (described by Dexcom as “LOW” probability, with 6% time below 70). I was bracing myself for another scolding, when the NP (it was an NP appt this time) asked me, “do you still sugarsurf?” I assented. Her reply left me without words: “well, you can’t argue with success!”
So I am shocked: the practice actually agreed, although somewhat reluctantly I must say, that we are doing a decent job at managing our boy’s BG – first time ever, although our last four A1cs are 5.7, 5.4, 5.3 and 5.4. The caveat is – it is not our endo but the nurse practioner, who is, I think, a lot more in tune with the patients. I suspect that, if the visit at been with the endo herself, we would have been in for another scolding
I’m bracing for a scolding this time. Our son’s main teacher injured her back about two months ago, and then the teacher who was backup but super sharp has been on vacation for a month… as a result, so many preventable lows.
And then when you add in all the phantom lows overnight, I’m pretty sure we’ll get a tongue lashing
i have had this very same experience between my endo and my CDE. the odd thing is that they work together in the same office and act like pilot and co-pilot. my endo is a T1D and my CDE is the wife of a T1D. i have been with my endo for about 30 years now. i have been working with his CDE for the past 5 or so years. he is very strict and lives inside of a specific box. no creativity whatsoever. she, on the other hand, is very experimental and does not abide by hard and strict rules. to her, every D is different and has different needs. he lives by these strict rules that every D should react in the same way to the same foods. after all these years working together, he still thinks i am nuts for bolusing for eggs or other proteins. he doesn’t understand that i need to bolus for things like Splenda. she believes that i am my best educator; i write everything down and we review my notes. she works with me as opposed to me working for him, his rules. ugh.
funny thing is, i saw him today, as she is still off on maternity leave. he was in a more chipper mood and kind of went with the flow of what i had to say. we had a huge discussion about exercise and the pump. (see my swimming thread) finally, after standing my ground, he decided it was best to agree to disagree. we left it at that. and btw, my last A1cs have been 5.8, 6.2. and 6.4.
This must be Endo appt time, I saw mine last Friday. It’s been 9 months since my first appointment with her (A1C was 7.2 then). I got my Dex CGM a week after that visit and was happy that my A1C dropped to 6.4 (the best one since my diagnosis 2 years ago) - my Dex Clarity reports for the last 90 days equated to an A1C of 6.4 as well!
Over the last 30-60 days I’ve had a number of early morning lows (some in the 40-50 range) so I was prepared for a “discussion” with my Endo but I was pleasantly surprised. We discussed adjusting my basal dose as well as my I/C ratio. Ultimately, I decided it was time to try something different…today I placed an order for my first pump. I’m joining the ranks of the POD people. Planning on my next A1C being my first one in the 5’s.
I’m sure I’ll be asking a lot of newbie pump questions in the near future!
They will tell you to wait until you get the training before you use it. I didn’t do that.
But if you get the pump sent to you before training, you can at least go through the setup a few times to get familiar with it. That is very helpful to understand all the settings and stuff. And each time you go through the pump setup, when you are done you can do a reset and return the pump to it’s native state. I also did that several times to get familiar with it.
Thanks @Eric! I will take you up on it. When I was talking to my doc about a few questions I already had she said “I’ll set you up an appointment with our CDE. She answers the more advanced pumping like you’re asking.” I got a chuckle out of that.
Based on what I’ve read here, I’d like to use the pump for a week or so before scheduling any sessions so I’ll have hands on questions to ask.
One starter question - Is there a rule of thumb calculation to use to determine initial basal settings?
The pump trainer may try to base it on your weight, but that’s not really the best way. That’s just a huge guess.
Are you on Lantus now? Do you know how long your basal insulin really lasts? (I don’t mean what they say on the insulin insert in the box with your vial or pen - because it really varies for each person!).
Do you have issues of going higher at night where you need more insulin at night compared to daytime? I need more at night (like 4am), and less during the day.
So a good starting point is this - for example, if you are on Lantus, figure out how long it lasts for you - 24 hours? 20 hours? 18 hours? Just divide the Lantus dose by the hours it lasts, and that would be a starting point for units per hour.
For example, if you took 12 units of Lantus, and it lasts 20 hours for you, 12/20 would be 0.60 units per hour. That would be a good starting point for your initial basal setting. Then test like crazy and adjust for the first few days until you get it dialed in really well. Add more or less for nighttime/daytime as needed…
If you don’t have a clue as to how many hours the Lantus or other long acting lasts, just take your total units of long acting taken each day divided by 24 and multiply this by 0.95. This will give you a conservative units per hour to program into the pump.
That would be a good starting place, which would most likely give you a small safety factor, meaning you will tend to run high while you are dialing things in.
In our case, we have started/stopped long acting while on the pump a few times, and have found that for us, Lantus can be replaced 1:1 with the exact same units/hour of Humalog.
I have the opposite issue from you. Lately I’ve been dropping over night, ending up low in the early morning hours. I’ve dialed back my Tresiba dose to alleviate those lows but then have more highs during the day.
It’s interesting how that works so differently for everyone. I am starting to think that for me, nighttime basal is higher because it’s practically the only time I am still.
Just the idea of a “scolding” makes my skin crawl. I find that the great majority of the medical profession takes a very paternal approach and not only do they approach their patients like parents with young children but very authoritarian parents at that. I’m offended by the very idea of very knowledgeable and proactive T1’s being treated like wayward children. How many of us would comfortably share with our providers that we learned something “online”. I think that godlike demeanor of the medical profession is very threatened by today’s patients who often come in the door armed with information of their own and intelligent questions.
I haven’t been on this website long enough for many of you to know me but my idea of a “good doctor” is one who “writes my prescriptions and leaves me alone.” When I lived in a country where I could get meds without prescription and order and receive my own lab tests I don’t even bother with that. I don’t see an endo because I’d have to travel for an hour to do so but also because I don’t see the point of it. That having been said I’ve heard occasional stories of good ones, even ones available for phone calls or e-mails in the moment when the crisis was happening. Those of you who have one of the “good ones” who are willing to work as a team…consider yourself lucky.
i couldn’t agree with you more. my endo thinks the “on-line” info is some kind of voodoo and he looks at me like i am out of my mind with a very critical and outraged face. he just cannot think outside the box (his box)
Yeah, our diabetes team has figured out we know what we are doing, they extended our appointment to every 4 months, and asked my son to teach part of a class on what he is doing. So I figure there “average” patient isn’t doing that well. At least they are getting us what we need.
The problem is when they bring all patients down to the lowest common denominator of stupidest / worst diabetic, and treat us all like that person.
Diabetic babytalk is a no-go. That crap needs to be shut down. It’s fun to think of a question, and interrupt their story time - “Excuse me, sorry to interrupt your story, but can we talk a bit about the regulatory elements in insulin-responsive glucose transporters?”
Planning on my next A1C being my first one in the 5’s.