FUDiabetes

Freestyle Libre + MiaoMiao + Spike


#1

Hello everyone! Now that I’ve gotten the MiaoMiao and Spike up and running I thought I’d let you all know my thoughts so far, to be updated as things change.

For anyone not familiar with the MiaoMiao, it is a third-party transmitter which can send blood glucose values from the Freestyle Libre sensor to a smartphone. The MiaoMiao allows the Libre to function as a full CGM with alarms. It can send the glucose values to either Spike (for iOS) or xDrip (for Android). It currently retails for about $200 USD with $15 shipping, and it is rechargeable and waterproof (as waterproof as the Libre sensor is). More info can be found at https://miaomiao.cool/ though I assure you I’m not trying to sell these things.

I wish I had known how horrendous the shipping situation would be prior to ordering my MiaoMiao. I definitely would have ordered it sooner had I known. I placed my order on 8/16, I was notified that it had shipped on 8/19, and I received it yesterday (9/11). The device ships from China, so I guess one can’t really expect the fastest shipping in the world, but I would have hoped that the tracking number would at least work. They emailed me a tracking number when the device shipped but it was never updated, from the time it was shipped until now (after it has already been delivered) the tracking site just says “For some countries, only until the package has arrived in the destination country, then you can see the tracking info.”

The MiaoMiao itself is fairly small and quite thin, although I personally think it’s a tad bit unsightly. That’s never really been the deciding factor on diabetes tech for me before but I wish I could think of a good way to pretty it up. I felt the need to tape over mine with opsite flexifix, as the stickers that came with it just didn’t seem to be secure enough.

Spike is a little interesting to use because you can’t just download it from the app store. You have to go to https://spike-app.com/ and request an invitation to the app, which can currently be downloaded through a platform called “App Center” intended for developing new applications. After downloading the app it gives you a little walkthrough tutorial on setting it up with your thresholds and whichever type of transmitter you are using. I did initially have difficulty getting the MiaoMiao to connect to my phone, but after looking on the Spike Facebook group (https://www.facebook.com/groups/spikeapp) for this issue I turned my phone off and back on again and it connected right away. Spike did fill in data from the past 8 hours prior to me hooking the Libre sensor up to the MiaoMiao, which was nice. I can also still scan the sensor with the Libre reader, which I continue to do because I’m a bit unsure about whether I should tell my endo about the MiaoMiao.

Something noteworthy is that you do need to remember set up any alarms you might want - the app prompts you to set up thresholds but it does not automatically create alarms based on these thresholds. You can set different types of alarms for different times of day (I have all of my alarms on vibrate from 7am to midnight and various types of blaring alarm sounds from midnight to 7am).

Spike is now being distributed by the Nightscout Foundation, and the relationship between the app and Nightscout is pretty apparent as the two have a lot of similar features. One of my favorites of these is the fact that you can set four different blood glucose thresholds (low, urgent low, high and urgent high) which allows me to make my target range smaller while still being notified again if I’m legitimately getting quite high. Another favorite Spike feature is the fact that you can calibrate the app (something I was dearly missing in the Freestyle Libre), and you can also have the app notify you when ideal calibration conditions have been met. I also love that the app shows time in range, estimated A1c, and average glucose, stuff I had previously been using Sugar Mate to generate for me because I end up wanting to check those stats constantly.

Okay, now I’ve probably rambled on long enough for someone who has been using this system for less than a day :stuck_out_tongue: I’m really happy with it so far though. If anyone else has experience with this please feel free to share!


Two pieces of good news
#2

Also, do you think I should tell my endo? For context, I’ve only been seeing him for about a year and I think he really does not trust me after having me essentially ignore everything he has said for the last 8 months and simply not getting my bloodwork done when he orders it. I really cannot afford to be labelled “noncompliant” again as I am trying to replace my quickly deteriorating, out-of-warranty pump. I am fairly sure I’m his first/only patient on the Freestyle Libre since there were numerous issues with the way he wrote the initial prescription for me, despite the fact that he had been telling me about the Libre at every appointment for about a year. He also writes me prescriptions to juuuust barely last me to my next appointment with him, and it would be a major bummer if he didn’t give me refills on the Libre sensors. I think he’s generally quite nice and wants the best for me, but I’m just not sure how he would react to being told I’ve gone “off-label” with the Libre, using non-FDA approved/third-party hardware and apps. Maybe my A1c improvement would be enough to prove its for the best? Please let me know what you think!


#3

First of all, CONGRaTULATIONS on your a1c. That’s frickin SOLID. I was looking for your post so I could say something, but it’ll work here, too.

Second of all, thank you for your write up. This is just the information I need. My mom is ordering one for me so I can hear something over night, but I don’t know the first think about it. Didnt know the first thing about it. I’ll be referring back to this in six months when I finally receive it from China. :grin:

About your endo… just my opinion… I can’t think of a reason not to be upfront. You’re being proactive. You’re learning. You’re trying. You’re engaged… AND you’re improving. If your endo can’t recognize those things as evidence of a diabetic who is attempting to get better control, then your endo… should be fired. My endo thinks I’m a nut job… and she thinks it’s a little over the top the way I’ve become with my testing, but she also recognizes and respects the difference in me. It’s the first time I actually WANT to have a say in my management. She may not completely agree, but she knows we’re on a far healthier path.

I’d say more, but I’ll give someone else a chance to make better points… and I’ve got kittens to play with.

Way to get it done. :fist:


#4

Thanks Nicky! I’m glad you found my ramblings helpful and I hope you end up liking the MiaoMiao when it finally arrives :stuck_out_tongue:

You’re probably right, most likely he’s going to be so pleased with the changes I’ve made that he’ll be willing to look past it if he has any holdups about the 3rd-party gadgets. I’m just feeling anxious about telling him about them I guess.

If he tries to fight me about them maybe it’s just an opportunity to discuss my profound need for a CGM and the fact that he needs to help in the fight for Dexcom coverage so I don’t have to go ordering random things from the internet :innocent:


#5

@glitzabetes Thanks for the write up! Sounds like you’ve got some pretty complex technology really nailed.

As far as your endo is concerned, he should be overjoyed at your interest and involvement. I showed my endo xDrip+ on my phone the first time I saw him. Now it’s the first thing he always asks me about and he greatly appreciates the statistics that can be gleaned from it.

Besides, your improvement speaks for itself.


#6

I agree that any Endo worth their weight should appreciate your focus on managing YOUR diabetes. I would change doctors if he isn’t on board.

Go for it!


#7

Thanks @docslotnick! I am a bioinformatics minor and I think it certainly helps with understanding the diabetes technology if it does nothing else for me :grin: Thanks for giving me a bit of an idea of at least an endo’s reaction to third-party apps, that is certainly encouraging.

Thank you for this @Millz! I think and hope that I am just getting myself worked up over nothing here, he probably will be on board. I’ll keep this in mind if he’s not though


#8

This is a really nice write-up, @glitzabetes, thanks so much for sharing!

Just to be 100% clear, what are you missing in your setup, outside of the environmentals, to get what you get from a Dexcom?

Re your endo: are you saying your endo has not agreed to prescribe a Dexcom for you so far?


#9

If you mean as far as data goes, pretty much nothing different from what I would get from a Dexcom. The big complaint I have right now is the 12hr sensor warm-up for the Libre, and I am in the process of getting a second Libre reader to get around that issue.

I mainly want the Dexcom G6 because I am also currently trying to get the T:slim X2 and I want the Basal-IQ function.

I am not really sure the status of that to be honest. I essentially had a stockpile of Dexcom supplies I had been using after they were prescribed by my previous (pre-college) endo.

When I have brought it up with my current endo in the past he basically just says something along the lines of “Insurance will want to see 4 fingersticks a day for that” (and I have been taking and keeping a log of that for the past 2 months regardless of CGM use because of this). With the pump process he has been the type to say “Just have them send the forms to me and I will sign it” however when I attempted to push for new Dexcom G5 supplies in February I ran into some obstacle and I can’t seem to get Dexcom to tell me what they were. All I know is that nothing made it all the way to my insurance because I didn’t receive a denial letter.

I’ve enlisted my mother to help me with the insurance stuff for the moment because she has more free time to bother people and more experience with it. The Dexcom reps also seem to respect her more for some reason because I can’t get them to respond to my emails but they will respond to hers.


#10

@glitzabetes That is outrageous! I have never met an endo who didn’t want to do everything possible for a patient to get a Dexcom. The fact that you have been depending on it, have spent the money for a Libre and Maio-Maio only because a Dexcom transmitter is out of reach should be more than enough to get him to go to bat for you.

I wish I had an extra transmitter to send you.


#11

Thank you @docslotnick! I think (hope) at my upcoming appointment he will probably be more on board with it than he has been previously. The difference between “I would be better if I were using a CGM consistently” and “look at how much better I have been while using a CGM consistently” should hopefully be all he needs


#12

When your physician actively works to prevent you from taking the best possible care of yourself, it’s time for a new physician. Refusing to prescribe CGM to a competent type 1 is unacceptable.

I like the term “Deliberately non-compliant:” those of us who sensibly take advantage of technical advances to better care for ourselves without necessarily staying within the circle drawn for us by the FDA. If your A1c or time in range are improving, or you are getting the same results but with less work, your physician should congratulate you, support and respect your taking the initiative, and stay out of the way. Otherwise I’d suggest to look for a more compatible physician.


#13

Thank you so much for your input @bkh! If my endo does not support me on this I would be willing to look for a new endo… the only complication is the fact that I really need a new pump. My current one is damaged and has malfunctions both related to and not related to the damage. It’s more than a year out of warranty and I have been trying to get a new pump for more than a year but I have been denied by my insurance initially, was going through the appeals process, and now I’m switching insurance and needing to start the process over again. The whole thing about how “the physician recommends the technology having seen the patient for greater than 6 months” or whatever kinda has me tied to my current endo for the moment because I have doubts that my current pump would last beyond another 6 months. And I would really prefer not to go on MDI for any extended period of time.

My big issue with the insurance approval process this round is expected to be my previous non-compliance (last round it was that my pump wasn’t malfunctioning enough but boy has that changed). So while I also like your definition of being “deliberately non-compliant” my anxiety about telling my endo about this essentially comes from that being an issue in getting a new pump.

I mean I guess that circles me back to the fact that I should get a new endo if he marks this down in my chart in a way that suggests non-compliance. That would really be my worst-case scenario here though, so I guess for now I’ll just hope it doesn’t happen? :sweat:


#14

Now I understand better. First things first. Do whatever it takes to get the new pump, then go endo shopping.


#15

We have some great pump to MDI threads going if your pump completely fails. Real bummer not being able to get the tech you want though. I feel for you.


#16

Yes I’ve been keeping up with @Nickyghaleb’s MDI experiment because of this! Truth be told if it happens I will probably be here asking for lots of help, I’ve only been on MDI for like a total of 5 days since I started self-managing my diabetes and all under “pump is broken/ran out of supplies” types of circumstances :grimacing:


#17

@glitzabetes you might take a look at your insurance carriers Utilization management docs. Most are available online. Might help you to tailor an appeal…


#18

Yes… but why? :smiley:

I can’t believe it, but I love it.

Why I Love MDI:

  1. It’s fun :hugs:
  2. I can roll over and over and over again in my bed
  3. showers are fun again
  4. I don’t get snagged on everything
  5. My left hip is healing from the 12 year pump imprint
  6. I stood in the rain today and got drenched… And I haven’t done that in 12 years
  7. it’s relatively discreet (for others. For full discreet power, I’d have to lose my diabetes luggage)…

…what do people your age care about again? :grin:

  1. Oh! For me, there is a certain security (or freedom??) I feel from knowing my insulin is in me, not on me. No machine… I need it, I get it, I go.
  2. I don’t spend so much of my time thinking about my pump
  3. When I’m high, I know who to blame.

I don’t want to discourage you from pursuing a new pump or from going after a new endo. These processes take time. I’ll just let you know, in the meantime, from one previously non-compliant, funny eating-habit-having (and insulin-skimping) woman to another, MDI is nothing to shy away from. There’s something to just handling your business without all the technology. In my very humble opinion, of course.

:muscle::face_with_raised_eyebrow::+1:


#19

Heh, well, as much as your reasons for liking it do sound nice I have a few reasons why I believe it wouldn’t work super well for me at this time in my life

  1. I work in a biology lab like, every day. The type of lab where you can’t bring food or drinking water inside because some type of little infectious organism could potentially get all up in there, and you have to wear latex gloves, lab coats, and safety glasses, the whole bit. So like, not really a safe place to give injections or maybe even keep an insulin pen. I already have to step out of lab (and pass off my work to others if it is a time-sensitive reaction or activity) if my blood sugar goes low to treat it, and I would not want to also have to step out of lab to give injections if my blood sugar started trending high. Really it would probably mean that if my blood sugar started trending up, I would not be able to give a correction until I was done with whatever experiment I was in the middle of (which could be some time). It’s a lot simpler for me to just unglove one hand and pull out my pump
  2. I have a very irregular schedule. Right now (being in school) my daily routine doesn’t follow a set pattern. I am not up at the same time every day of the week, sometimes it’s 6:30am and sometimes its 10:30am, depending on my class/work/club/appointment schedule for that specific day. Sometimes I go to bed at 9:30pm and sometimes at 2am. I like this for the moment because it’s one of those things I probably won’t have when I have to go be in the real world and work next year. I think my erratic schedule would be difficult to plan long-acting insulin doses around.
  3. I am hella forgetful and I think I would have difficulty with remembering long-acting insulin doses to begin with. I’m sure it’s one of those things where you should be able to incorporate into your schedule… but I was also on birth control pills for years and I finally switched to the Nexplanon arm implant last year because I was forgetting to take the pill at least once a week.

and finally probably my lamest excuse

  1. As a 21-year-old, I have been diabetic for nearly 20 years… and on a pump for about the last 15. I was literally 5 the last time I was actually on MDI, when my mom was in charge of it all, and I have never personally received training on it. I know it’s kind of the same thing with a bonus insulin and more needles but I’m scared of having to re-learn the ropes at this point :flushed:

#20

You had me at “infectious”. Say no more.

Your first reason was all you needed to explain your resistance (not resistance— that sounds like something a noncompliant person would have. Your reluctance). As far as your irregular schedule, well, this is me, too. Except never 9:30. 11:30-2, yes. I do get up at the same time now because my kids are back in school, but that’s about IT. Nothing else is regular, and this still really is okay. Better than okay.

I’ve got nuthin on this one. Me, too. I’m learning though. Just in the last couple of weeks, I’ve slowly settled into a fairly good routine, and I’m getting the right amount of insulin at the right time. This is not my strength. I do set my alarms, sometimes for the wrong times, which then go off at random times throughout the day, resulting in my having no idea what to do yet still with an overwhelming sense of panic. :smiley: The good news is I carry luggage so I always have everything with me. Have never needed any of it— not one item— but it makes me feel safe. :smiley: So room for improvement in this area…

I completely understand. I’m not trying to talk you into it either. Really. I’m going back to my pump any day now. :roll_eyes: I heard somewhere in your message, and maybe not correctly so, that your pump needs replacing, you need your endo’s cooperation in order to do it, your endo has you pegged as whatever he has you pegged as, and it’s all a tangled mess of hoops. You mentioned my name, you mentioned some hesitation about MDI, and I reported to tell you it is going way better than I ever thought it would. For all intents and purposes, I never received training on it either. I was given a couple of vials and told “this one twice a day; that one before meals.” This experience has not been anything like how I remember it. I’ll no longer hesitate to hop off the pump for any reason whatsoever. In reality, I can’t wait to hop off again.

I hope you get your pump situation sorted out, and, if we all still agree, that you kick your endo to the curb. If you ever need to go to MDI because sorting it all out is not happening at the rate it needs to happen, you’re in the right place to make a good, quiet transition…