I had an endo appointment today. It’s the first appointment I’ve had since I started Afrezza.
I showed him my Dexcom Clarity Report, and he was happy about it overall. I prefaced it by saying that I’d been struggling with some highs early in the night, but that I’d increased my Tresiba dose last week and have been seeing better results since then. I’ll put my report below.
I think the Dexcom Clarity Report is a bit deceiving. It only shows between the 15th percentile and 75th percentile in the chart, so even though I had some bad spikes the week before in the early night (hence the increase in my Tresiba dose), it looks like I never go above 200. I realized he didn’t understand that (I hope) when he said that the highs weren’t bad at all.
It’s probably not really worth talking about anything with him. I wrote up a long complainy paragraph about him here, but then I deleted it because I realized you all don’t need to hear my whining
Since it’s probably not worth talking about the numbers outside of the range shown on the Clarity Report, I didn’t mention the fact that it’s only showing percentiles. The report specifies that it only shows percentiles so I don’t think I should have to say it. He’s not interested in discussing the things important to me.
Anyway, I’m wondering what you show your endos at your appointments. Do they understand the Clarity Report well? Or if you show something else, do they understand it? What do you find is the most productive thing to show them? They always want to see something…
Ours tend to only look at data downloaded from the OMNIPOD. This is very incomplete so I have started uploading POD data to GLOOKO so that the data is integrated with DEXCOM data. I will usually print 2-3 weeks worth and just hand it to them. I get way better feedback this way.
Thanks! I’m aiming for an average of 120 and SD of 30 though, so I’m running higher than I’d like. I’m not dealing with all the growth hormones and kid stuff you guys are!
Do you feel like the doctor is able to understand it and provide good suggestions? I’m not familiar with Glooko. It’s cool that it can merge the data from two sources though!
Our endo downloads both our pump and our CGM data – she doesn’t just look at Clarity. That said, she never seems sufficiently alarmed by trends that we see. I guess compared to teenagers Samson’s control is usually pretty good, so she’s happy.
Our Endo starts our conversations with, “You guys are rockstars. Do you have any questions?” lol. I guess that’s a good thing. But, like you, we see things that bother us that our Endo doesn’t. She’s always saying “If you want to pull that A1C 1 or 2 percentage points higher, that would be OK, but as long as you’re keeping the severe low %'s down, I have no complaints.”
ours does not seem concerned about the severe lows that I am concerned about. Maybe this time she’ll finally be distressed by it. We’ve had some problems with our alarms not working at night and it is showing up in our data.
We’re still trying to get under 1%. We have been stuck at 1% severe lows for our 90-day trends for a while now. Can’t seem to get under it. We will have one great week, followed by a week that pushes it up again.
for the last 90 days it is at 4 percent A lot of that is fake low but it’s really awful. I can’t seem to get through to my husband that this is a huge issue – he really just thinks it’s not that bad. I am up all night with the baby so i am not hearing alarms either
So sorry to hear that. We don’t hear them that well either, but setting the alarms to 100 has really saved me the severe lows. I also started doing the trick that someone here mentioned doing and it’s been a great aid…(putting the receiver into a metal bowl of coins). The rattling sound wakes me up much more than any of the alarms. You know, after a while, the alarms just blend in with our dreams! (at least that happens with me.)
I go to the trouble of transcribing each “1 day” average from Clarity into an Excel trending graph (with a 14 day running average). This is what I mostly look at (in addition to the current intra-day graph from Clarity). My endo will also look at this graph, in addition to downloading the data from both the CGM and BG meter.
I also use Afrezza and tend to run high in the evenings. It just means another capsule may be needed. I’ll usually correct again if it gets back up to ~140-150.
I am literally sleeping through an hour or two of constant alarms – ours too is set higher than his low threshold. It’s just we are not hearing them. Some of that is that the apps seem to be malfunctioning somehow, and the other part is just we’re so tired. I am going to do the metal bowl thing.
Yep, this has been a lifesaver for me. Also what has helped me is to MAKE SURE the bowl and receiver are OUTSIDE OF arms reach. You want to be forced to get up to check it…in the middle of the night, it’s too easy; otherwise, to just roll back over.
It’s really hard to know if this is happening or if I’m sleeping through alarms, but I’ve had a couple of instances where I’m pretty sure the alarm did not go off when it should have.
I feel bad doing the metal bowl/coins thing though because I live in an apartment and have neighbors on both sides. My alarms are already pretty loud now when they’re at the highest volume setting… yet I still sleep through the high alarm sometimes. I always wake up to the urgent low one at least because that alarm is incredibly annoying.
I’m pretty sure that for me it’s malfunctioning on my phone – if I’m awake and watching his BG and it’s high or low, I am POSITIVE the Dexcom app is not giving me alarms when it should. Usually it’s not an issue because I’m always on my laptop and that’s where I watch his numbers, on NIghtScout. But at night, I’ve tried keeping the computer open to alarm and a) it goes into sleep mode and doesn’t alarm or b) it wakes up the baby who is still in our room. The NightScout app, meanwhile, has the issue where if it is alarming when it’s open, then when it goes into lock-screen mode I can’t disable it easily at night…
I am guessing we’re going to have to move the baby out of our room soon because there’s no way the alarms won’t wake him up. So this will probably be good motivation. I feel bad for the little one but 8 months is plenty old enough to sleep in his own room I think. And maybe that will help with all the night-wakings.
I know for sure our receiver does NOT alarm as it should. It vibrates very well, but we have it on hyper-repeat, but most nights the only way I know it’s alarming is because it’s shaking like crazy in the metal coin bowl. We have two phones with alarms ringing and the bowl rattling. Between the 3, I’m able to hear them and treat most of the time. Erin never wakes up (well, occasionally), but it’s my job since she’s breastfeeding a 3 month old and also waking up anytime the 2 year old wakes up crying.
Oh, and it’s not just THIS receiver…I just don’t think the receivers alarms work as they intend them to work. None of them ever alarm like they’re supposed too. I make sure my phone volume is all the way up (not only the actual volume button, but also the sound setting), during the nights.
A lot of that is fake low but it’s really awful. I can’t seem to get through to my husband that this is a huge issue – he really just thinks it’s not that bad. I am up all night with the baby so i am not hearing alarms either