To Care or Not to Care - "Severe Low %"

ClaudnDaye
Tue, 19 Mar 2019 19:32:20 +0000
Child

I’m finding that I’m becoming increasingly frustrated with trying to attain the elusive .4% Severe Low percentage. Why? Because that percentage is taken from Clarity and is based on the readings from the CGM…which just isn’t accurate more times than it’s not where lows are concerned. I would wager that at least 75% of the time when his CGM reads low, or severe low, he isn’t actually low or severely low. But these are the numbers the Endo use when we have our discussions. This past Endo visit I told them that this severe low % doesn’t mean much to me because it’s just not accurate.

I know there are some apps/tools (such as Tidepool) which supposedly merge the data to get a more holistic picture of what’s happening, but I’ve not found Tidepool personally helpful in figuring out any correct amount of ‘severe lows’ that Liam has actually been.

So the longer we live with this disease the less this number is meaning to me…

I still CARE about preventing ALL severe lows, but to actually come to a true and accurate percentage, in my view, just isn’t possible right now…until technology improves and the accuracy of the CGM are better for us, we have inaccurate CGM readings and only a small number of daily accurate finger-sticks to try to determine the percentage. Right now my percentage reads .8 for the past 90 days, but I would wager it’s more like .3, but I don’t know of a way to determine this for certain.

So, I’m stuck just not caring about that Clarity ‘severe low’ percentage because it’s an unrealistic goal to get that down to .4 or lower due to the nature of the CGM. Anyone else have this mindset? I’ve been trying to get under .4 for 3 years now and, because of the CGM inaccuracies, it’s falsely inflated to appear higher than it actually is.

I’ve started a notebook where I annotate each time he’s not low when the CGM actually reads that he is and I’ll use in the future in conversations, but it’s just depressing and frustrating and I feel like I’m banging my head against the wall trying to meet some percentage that keeps moving out further as the numbers continue being off for us.

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