FUDiabetes

Good, bad, or indifferent

What would you say to a patient who achieved an A1 C of 4.7 looking like this?

As you might imagine, I was roundly scolded by my nurse practitioner today. The main concern was insulin stacking, resulting in too many lows.

Well if you’re going to have an a1c of 4.7 you’re going to have mild lows. I don’t see anything terribly alarming there, but you have to understand that in general the medical establishment doesn’t really believe that anything below about 6 is beneficial (I don’t necessarily agree with them)… bur yes with an a1c of 4.7 and documented lows every day, they’re going to scold you

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Congrats on a GREAT A1c!!!

I would not be worried at all abt your numbers if you were wearing a Dexcom. But they worry me when you are not getting alarms. You did not get any serious low, but you could have.

Remind me why you don’t wear a Dexcom?

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Oh, I absolutely do. Couldn’t do it without it. Thanks, guys.

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Then why show your provider this stuff instead of just the Dexcom report? Which might show a lot better big picture than these individual snapshots?

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I didn’t show them. They asked for my meter and synched it with clarity.

Here’s the thing. When I was in the office today, I was completely ill-equipped to defend my individual decisions. After several rounds of “why’d you stack here 10 days ago or here 7 days ago?”, i just broke down crying. In the moment it felt like I had completely failed. And through his perspective, I realized how hyperexic I am (for lack of a better word). My whole life is geared toward avoiding highs. I blame that mostly on you guys. But I also credit you guys for that. I would never have an upper bound set at 120 if it hadn’t been for you all.

I don’t log. I was a meticulous logger during our last pregnancy. Logged, logged, logged, and excelled, excelled, excelled. Since our 4th, I’ve barely taken a single note. I’ve been winging it and making decisions based on gut feelings and quick calcs. Nothing that would hold muster in the endo’s office when asked pointedly about why I made a specific decision in a certain situation. So, I totally folded in the appointment. And was completely ill-prepared for the onslaught. I walked out of the office totally dazed trying to remember whose phone number I had to call but decided to write openly instead. The haze is lifting to some degree, but there was real shame there for a while.

Thank you for this perspective. Still hashing through the visit to see if any of his suggestions I might keep. The real bummer for me is that he wouldn’t even prescribe metformin for increased insulin resistance. So having lost that battle, I declined to ask about afrezza until my next visit.

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Do you guys have access to glooko? I’d never seen this report before.

Rule number one is always forget your meter at the doctors appointment… or show up with a meter that they can’t actually download… if they want to write me a script for one to save me money I suppose they have a reasonable expectation that I use it… short of that, they work for you/me… not the other way around

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This made me laugh out loud!

Of course!

I don’t understand how they generated all this data from your meter? Is this from the Omnipod pdm that is both your meter and your pump controller?

Absolutely though I’m serious,don’t ever let a healthcare providers interrogation put you on the defensive like that… do they actually expect you to log every decision you make countless times each day for the rest of your life? Does a truck driver have to log and justify every time they shift gears? That said, the underlying message may be valid, that you don’t need to treat this agresssively to get an a1c this low and have low bg frequently…

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Irish, I would be interested in understanding what the lows vs A1c tradeoff is in your case. So, if you went to 1-2 lows per week, what do you think you could keep your A1c at? If it were me, I would be willing to trade a little A1c for less lows, not because you aren’t able to handle them, but, the more often you have to reverse a low the more often something could go wrong. Nice job by the way.

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@Irish, I am so ticked off at your Endo! And not surprised at all! You had an amazing trimester. How many T1s can do what you did? The sorry fact is that today’s endos are largely seeing the world with 1990s glasses. So don’t stress. You had a GREAT 3 months and you should be very proud.

For most people with diabetes, every 3 months they get a bit closer to complications. But YOU did not!

In the next FUD retreat, I will bring a celebration cake for you! You deserve it!

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Right…the omnipod pdm, although I don’t use that as my meter. And my one touch verio meter. And clarity from my dexcom. It was a perfect trifecta. Somehow I don’t think I could forget all 3 at my next appointment.

@chris, Thanks for this. Really. There’s a lot to be said for lows requiring immediate management. I do think easing up a bit would be in order, though I have no idea what life with 1-2 lows per week would look like. This is where children and adults must be really different. Maybe 1-2 every other day? I should start a new thread on how many lows each week people have. Maybe that will inspire me toward tighter low control.

Thanks for this! He really is pretty decent. He’s even willing to let my friend with diabetes (refugee) come with me on my next appointment since his wait is so long. I give him major props for that. but the other was kind of making me second guess all I’ve worked for over these last months. And that’s never a good feeling. I don’t do well with direct accusation in the moment. I either crumble like I did today, or if I feel safe with someone (like Josh), I’ll bite back–and with gusto.

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@Irish

Awesome awesome job. Nobody should walk out of an appointment feeling defeated or scolded. Sometimes you just gotta say eff 'em.

This is the problem with a nurse practitioner who isn’t a T1 diabetic (and if she is it’s even worse). I know he is trying to help, but it’s based off books etc. It’s not based on LIVING with diabetes. He doesn’t give you enough credit for knowing and being responsible for your own numbers. You shouldn’t need to explain the stacking.

You are the boss of your D, he should help and support, even if he doesn’t understand why you stack or if it isn’t “by the book.”

Keep it up!!! You are rocking it!!!

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I am sorry about your bad experience, but your A1C is great and your Glooko report looks fine. Trust me on this, you should not change a thing.

There is no damage to your body if you are immediately correcting a low. Dropping down to 50 and popping back up does not hurt you. The only danger is if a) it is extended, or b) if you are driving a car or operating dangerous equipment. If you are awake, and you handle it yourself, it is not a “severe” low.

A severe low is not a “number”. A severe low is one you could not handle yourself and needed help with, or one that lasted a long time, or one that caused you a car accident.


Let’s get you prepared for the next one. When you start quoting research led by Joslin Diabetes Center and published by the New England Journal of Medicine, it will put that silly little nurse practitioner in her place.

From the article:
"After adjusting for age, sex, education, length of follow-up, and number of cognitive tests taken through the years, the researchers found that episodes of severe hypoglycemia did not have any effect on participants’ cognitive abilities. "

“These results show that consistently higher blood glucose levels appear to be more of a threat to long-term brain function than occasional episodes of severe hypoglycemia.”
(Please see:
low-blood-glucose-doesnt-affect-long-term-brain-function )


You will always do better working on instinct. When you drive a car, do you mentally process each traffic light and run through the list of colors in your mind before making a decision? Logging so you can make adjustments is great, but instinct will always beat a formulaic approach. Do not change that.


Here is what my response would be. Having a few sentences like this in your arsenal are helpful.

"I realize that without having to deal with the disease on a personal level, but only on a clinical level, some of these ideas are ones you may not be familiar with. But bolus calculators are extremely elementary. The calculator on the PDM only considers current blood sugar, IOB, and carbs about to be consumed. Only 3 things!

When I make a decision, I look at 12 things.

I consider my current BG, IOB, and how much I am going to eat, just like the PDM does. But I also factor in which way my BG is going, how rapidly it is moving, how rapidly the food I am eating will be metabolized, how my body has been responding to insulin on this day, which day I am on with my pump infusion (for people using any pump!), how much exercise I have had in the past 24 hours, how much exercise or activity I will have later today, whether I am planning on following up the meal with a snack or if I will have access to food in a few hours, and how this same meal affected me last time I ate it.

I think the 12 things I consider, along with my personal experience with how my body responds are a little bit more advanced and precise than the 3 things you are looking at…"
[awkward silence!!]


Here is another thing to say. If they are talking about values on your meter they did not like. Say this:

"You know, looking at values on the BG meter are extremely deceptive. Consider this - when are diabetics most likely to test? When they have a bad value. If my CGM is sitting flat at 80 or 90, you won’t ever see those values on my BG meter, because why would I test then? Other than a calibration, it is rare that anybody would test under those conditions. But when I am high or low, rising or dropping, correcting a high or low…THAT is when I will test.

And I will also test more frequently after getting a bad result than when the result is good, because I want to make sure the correction is working. So you are simply looking at a collection of all my worst results, nothing else."
[awkward silence!!]


Nobody should be held hostage by an Endo or insurance company for what insulin they use. I have a bunch of new unopened boxed of Afrezza in my fridge. Let me send you some to try.

My refrigerator is like a toy store for any APWUI (awesome person who uses insulin).
(I thought of that term for you because of your post:


:wink: )

If you want some Afrezza to try, I can send it to you.

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If die to have my son even two points higher than that… And he still has more lows than that. :(. Great job with the control.

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@Irish Sorry to be late here. Been a busy morning…

This makes me extremely upset. Your endo/Educator are way off base. The only time I saw a Diabetes Educator she told me something very sage: “you learn to live where you are at”. This is what most endo professionals fail to realize.

You are fine at 80, or 70, or 60, or 55 if that’s where you live!

Ask your endo how many of his patients have an A1c of 4.7. You’re probably the only one. He’s busy all day managing patients trying to get them to a 7 with just marginal success. His emergencies are all hypoglycemia, I’ll bet with patients at 65. These patients live at 200 and feel crappy at 65. On the other hand, you can live fine at 65 and you probably feel crappy at 200.

It’s like you are an honors student in a remedial class. I can imagine the frustration is palpable.

I would have a heart to heart talk with your endo/DE to discuss with them what YOUR goals are, and what they can do to help you reach and maintain them. If they cannot understand that this is their role in the management of YOUR diabetes then I would suggest you leave them with their out of control patients and find someone who shares YOUR vision.

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Hey, @Irish –

Have you compared your Verio with a lab draw? OneTouch meters ran really low for me.

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