Did I get this right?


#1

So I had an Endo appointment today.
I thought I had prepared well for it. But Now, Im not so sure anymore.
Last time I met my new endo, she had mentioned to me that I should get on a CGM. At the time, I said I wasnt ready and wanted to wait. Since our last appointment, I have most definitely changed my mind, and I am now OH so ready for a CGM, ( but not for a pump yet).

Now, my understanding (from preparing for our appointment) was that CGM wise, there are only really 2 (good) choices out there (if you are not using a pump): Freestyle libre and Dexcom G5/6

MY understanding:
one of the cons for Freestyle is that it doesnt have any alarms if you are hypo, it’s more like a passive system and to get your reading, you must swipe the reader to the device, and it then downloads your blood data to the reader. It also needs to be swiped within 8 hours (that it holds only 8 hours max of data) So if you are going hypo in the middle of the night, it will not give you an alarm, but in the morning when you swipe, it will show you you went hypo overnight.

Now, her understanding is that Freestyle does have hypo alarms and you do not need to swipe at least once every 8 hours.

She also called Dexcom G6 the “Guardian” and when I asked her to confirm we were talking about the dexcom’s CGM and not the medtronic pump’s CGM, she said it was the same thing. (and she also had a slip of the tongue and called dexcom, Medtronic…

so, im really confused, because I am pretty techie, and I looked into dexcom and freestyle quite a bit, and I thought I had a pretty good understanding of how they both work, (and their pros and cons) but maybe Im wrong (or maybe freestyle libre 14 works differently than 10 and I just missed that part.

Im still hoping that when I get contacted, it will be for a CGM and not a pump…

thanks for any clarifications.
E’


(joe) #2

hi @Emet

it’s hard enough to be an endo and be completely up on technology, and so unless you “misheard” I am thinking you are getting it right.

The Freestyle “Reader” doesn’t seem to activate and alarm on a change in blood sugar. If you turn the reader on and your blood sugar is low or trending low (or high or trending high) an icon appears. I got that from the user guide which, btw, lacks a lot of technical description

I would get Abbot on the phone and drill down to a technical support person who can answer you directly.

Calling the DEX a “Guardian” is not literally correct because only the medtronic CGM was ever called guardian. She’s mixing the CGM manufacturers. Now can a DEX be a blood sugar guardian?.. probably but I get the confusion.

in a few years you’ll have more experience treating type 1 diabetes than most endocrinologists. They are typically still better at the physiology, but don’t expect too much. I have to explain to my endo that her math is bad, and that interstitial fluid is not blood sugar… it’s an analog that is proportional to blood sugar… but I forgive her… mostly.

keep up the good work.


#3

thank you for the feedback @joe
I actually got a phone call from her office.
and the poor girl was definitely struggling.
She had 2 person’s names and the note “Guardian”
Trying to figure out if one of these 2 ladies were my guardian, and what she was supposed to do with this info…

I really kinda lost it on the phone. not my proudest moment.
With everything that has happened to me with this medical office, I am getting so ready to leave them and find myself a new Endo and PCP.


(joe) #4

@Emet firing an endo is not the end of the world… sometimes it’s the right thing to do. you already paid the copay or coinsurance… if you want my dumb advice, contact DEX directly have them gostwrite the approval letter and send it to your current endo… if they aren’t completely negligent they push it through and that’ll cover the insurance part and you can get your CGM. That’s how I do my pump upgrades now… never at the doctor, directly with the manufacturer. Ask them directly how to minimize your deductible (Medtronic said they’d “pay” me $300 for giving them access to my data for a month, which made my deductible zero).

once you’re happy dump the endo and find a better one.

Time to take control! good luck!


#5

Thats a great idea.
right after my post earlier this morning, I got a phone call, guess from who?
Medtronic representative.
Super sweet lady.
She explained to me that my endo did refer me for a guardian sensor, which is their standalone CGM.

Thank goodness my endo listened to me saying I wanted the dexcom!!! <- Sarcasm-

I will give the medtronic rep the time of the day, who knows maybe i’ll even try their CGM, but Im definitely filling away your tidbit re contacting the company directly and have them ghostwrite the approval letter and asking about minimizing the deductible. those are super tips to keep.

thank you for your support!


(bsteingard) #6

I have a Freesyltre Libre and your understanding is correct, but your endo might not have been wrong. The problem is that there are different versions of the Libre out there.

The version I have – the one initially approved by the FDA for use in the USA – can be worn for 10 days, has a 12 hour warm up period, does not alarm, needs to be swiped by the reader, but doesn’t require regular blood sugar calibration (It will occasionally recommend blood sugar calibration, but it doesn’t require it twice a day or anything like that). The sensor only holds 8 hours of data so if you sleep 10 hours you’ll lose about 2 hours of data, not the full 8. The reader stores 3 months, though, so whatever data you collect when you swipe you have up to 3 months to download onto your computer. I went with Freestyle because it was smaller than the dexcom, more comfortable (for me, anyway), and easier to apply (although I hear the newer dexcoms come with some sort of applicator like the freestyle, too). I also wasn’t worried about the 12 hour warm up or lack of alarms because I know I wake up when my blood sugar’s low overnight, so I just put mine on before bed and sleep through most of the warm up period.

I recently got an e-mail from Freestyle that they have a new 14-day, 1 hour warm up model available (like what’s available in Europe). I’m not sure if it also has the 8 hour storage capacity or if it has alarms. Here’s the brochure they sent me. https://www.freestylelibre.us/content/dam/adc/freestylelibreus/documents/fourteendaytrial/FreeStyle%20Libre%2014%20day%20-%20Discussion%20Guide.pdf?mkt_tok=eyJpIjoiWkRjek1HSmhORE14T0RjMyIsInQiOiJsZXhzZCtPdlRRM1BkNG40eVlYU3ZwSTFnV1hDajFDVWJvMXRDR29vQ3ZIbVhGNFZCNUpKTE5cL0tpQ2ZlbGlYZmMwaEt0TG5iUTJVVml3NlJ1WXBoaTNlQVhxTFB4TmNqaWo2VERmOHQ0QkZIa1FXYUp0cXV5RjJ2Y045SE9OekEifQ%3D%3D.

My endo told me the other day that Abbot is also working on a phone app for the Libre so you won’t have to scan every 8 hours anymore. I don’t know if that would be specific to one model or the other or both.

I had some difficulty figuring out if the Libre was covered by my insurance and calling the Abbot representative was incredibly helpful in that regard.

I also had some trouble keeping the Libre on for the full 10 days over the summer because the adhesive doesn’t hold up to heat or moisture well, so if you go with the Libre you’ll definitely want extra adhesives. I use Simpatch bandages. I don’t think I want to try to the 14-day system because with only 2/month I’d have less wiggle room if one fell off early.


(Frank) #7

Check out the Senseonics Eversense CGM now available in US for the 90 day version. 180 day version in rest of world. Currently it’s hard to find endrocrinologist in US. Mostly in the larger US diabetes Care Centers. I could get mine at the University of Washington DCC but across the border in Canada you can get 180 day version.


#8

@camano
First welcome to our group I see you recently joined us and this is your first post.

Is that the implant? I was just reading about it on Friday and wondering why it didn’t hit the market like a storm. The FDA approval was very quiet and there has been no marketing waves.

I’d love to look into the implant more.
I wonder if a Canadian version can switch the numbers from mmol to mg/dl?


(Frank) #9

Emet,
Yes, it is the implant. I spoke to their representative a couple weeks ago and they explained that they’re slow to hit the market in the US because they have to train the MD’s and establish distribution through Diabetes Care Centers, who also determine the pricing. My endo’s clinic at the University of Washington has one doctor in training and they will be inserting and selling them soon. The biggest hurdle, in the US, is insurance coverage. So right now its cash and I was quoted from the University of Washington roughly $3,500 per year. Which means 4 visits per year to reinstall a new one. Outside the US the cost should be about half that which would be substantially cheaper than Dexcom and way more convenient.

Ideally, if I could afford it, I would travel outside of the US and get the 180 day (soon 360 day) Eversense CGM, the Sooil Dana RS pump (also only available outside US) and let them communicate to each other via smartphone BLE to xdrip Plus and nightscout apps in order to close the loop like t1d’s in the rest of the world can do.


(iloveautumn) #10

Hello,
Newer to site (not to diabetes though!), only check in one in a while (i should do it more). Saw your posting and while i can’t offer much personal advice on the cgms you initially mentioned (i do use medtronic though), i was wondering if you have seen any jdrf “technology night” events advertised/offered where you live. I’ve attended a few in the past with family and/or friends and have met others w/T1D and representatives from various companies. Could be helpful perhaps?
Best of luck to you!


#11

That would be so cool.
I just looked it up to make sure, it’s not on our chapters calendar, yet. Maybe early 2019. Would be nice.
There is an insulin pump group meeting at some point, I could try to go and check it out.
I’m wondering if a nearby chapter would have a similar event. Gonna go check it out.
Thanks for the suggestion


(iloveautumn) #12

Hi again,
Hopefully you can find one in your area in the near future! Keep looking! I’m in the midwest and our local chapter seems to hold them annually.
Take good care :slight_smile:


(Kathleen) #13

Hi. I am no expert at all. But we are in the same boat as you. Our daughter is willing to do the CGM but not pump. We checked out the Dexcom G6. From what I understand it alarms if you go low. (Of course that is our biggest fear is she will go low during the night at we won’t know.) I have no idea what insurance is willing to pay, but in reading what some people responded to you, I am going to reach out to Dexcom have then do a letter and see what my insurance is willing to pay and just get the endo to sign off on the letter. Our daughter is only 10yo and was just dx in March. There is so much to learn about the technology, terminology, etc. Best of luck to you.