This is an exercise in “peer to peer health advice.” I’m asking for advice, from “the DOC” (diabetes online community) – more on that below.
Here’s a message I received from someone who’s really peeved about a technology for managing his Type 2 diabetes. Does your experience match his? Should his digital device match the results from finger sticks? If not, for heaven’s sake why?
I’ve completely lost confidence in the FreeStyle 14 day and Freestyle Libre readers and sensors I’ve purchased. The readings are all over the board. Most current examples:
- This morning, at 9:17 a.m., the reader alarm went off. I flashed the sensor which read 181. It made no sense why it was so high as I hadn’t even eaten. At 9:18 a.m. (two minutes later) I did a finger stick using the same reader and it read 119!
- Then, at 11:02 a.m., the sensor read 193. Two minutes later at 11:04 a.m., a finger stick showed 128.
I’ve also had the reverse happen, where the sensor showed me being low, while a finger stick showed I was in normal range. On several occasions, when I did not confirm with a finger stick, I’ve taken glucose tablets to correct the lows, likely inappropriately.
I have made medication changes based on these readings. My doctor has made medication changes based on the numbers generated by LibreView. I can’t tell you the number of times I’ve taken meds to normalize an offending number. Looking back, I have no idea if I was correcting an event that either didn’t need to be corrected or not correcting when I should have.
A LOT OF PEOPLE don’t take the time to verify the sensor’s #’s with a finger stick. Particularly in the middle of the night, and when the reader’s alarm doesn’t sound off.
What do you think, people with diabetes? Have you seen experiences like this? Should the reader match finger sticks a few minutes later? (Again, I know nothing about blood sugar readings.) Is his experience to be expected? Is something wrong?
Peer to Peer Healthcare and the DOC
I’ve long said that diabetes has the archetypical e-patient community. By definition, successfully managing both Type 1 diabetes (where your pancreas can’t create your own insulin) and Type 2 diabetes (where you can’t consume the insulin your pancreas makes) requires being on top of things around the clock – specifically your blood sugar levels.
Not surprisingly, when social media came along, “the DOC” (diabetes online community) became a powerful source of what researcher Susannah Fox calls “peer-to-peer healthcare” [excellent 10 minute video], as people shared practical advice. At first “DOC” was a generic term, but now I discovered it’s become a slew of online communities and has even been the subject of several articles in scientific journals.
Then some people (not medical scientists, just people with diabetes and family & friends) created OpenAPS – their own software to digitally manage their insulin dosing, instead of doing finger sticks and tons of manual calculations and manual injections.
Who ever heard of patients inventing their own devices and software?? Well, that’s the concept I describe as Superpatients – patients who extend science, the book I’m trying to finish right now. To achieve that (which they have), they can’t be kidding themselves – they need to really be on top of things.
In any case, the DOC is a sharp bunch of people, so I’m asking their perspective on this fellow’s experience.