Will we ever have treatments without numerous devices beeping at us?

Type 1 and LADA
41

Well it is not total crap for me but it is certainly bad enough enough of the time that I will never bolus etc off of it. I am not unusual in that, there are others who have the same issues. I may be one of the few who posts about it here because it often isn’t well received to make any criticisms of any devices or pretty much anything else.

I am of course also wondering why I have these issues as well. It may be an inflammatory reaction to the sensor etc. as well as it cannot keep track of fast moving bg a lot of the time. I am sure there are other issues too.

Unfortunately dexcom is all there is if you need real cgm except for one pump version maybe which people said is even worse, basically the others are even worse. It really just has become about the bottom line for them. I see tons of tv ads saying you don’t need fs etc. a couple of years after they got the fda to approve that. And for the arm one as well which was terrible for me with 0 calibration and no alerts at all.

I am talking about the stress here from all my devices, but dex is the worst offender since it continually alerts me every time bg changes even one point in certain ranges which is crazy. And the vibrations are terrible an very noisy not to mention the dreaded 55.

I am so sorry you are undergoing all these treatments, that is a lot to deal with. I am wishing the best for you. :grinning: I have avoided oral and inj steroids since diabetes but I have to use foams etc for eczema.

I applied to be in the early cell insertions but was not allowed due to not living in CA. I met a type 1 online in Brazil who had stem cell implants after chemo in a research trial who is now off insulin for several years, with no anti rejection drugs. I think he is the only one I have heard of, but that means it can happen maybe one day. I hope so. And I hope for much better devices and treatments than what we have as well. I just hope it will be available to me wherever I am then.

Thanks😀

42

Ughhh re the difficulties. I still don’t understand why your dex goes off at all or most changes in BG…

Have you tried getting replacement pump? It sounds like the dex and the pump are problematic. Since they transmit to each other, it’s likely all relayed, right??

Does the eczema, being so inflammatory cause issues?? That sounds very plausible especially since skin disorders aren’t well understood or gradual understanding over the years about their connection to immune system dysfunction.

Isn’t everything inflammatory!!! Thsts what I say now bx it’s mostly true!!

I wonder why people would be upset about being critical of technology etc ?? Sure I love my stuff but if someone doesn’t, that’s not personal to the one that likes it!

I get miffed when some who don’t like whatever it is but generalize it to everyone or people researching what they are considering. It’s nice to see various opinions but sometimes people are in extreme ends of the opinions snd like omg, it’s the worse tech Everrrr, it’s always inaccurate, the company always lies, the customer service sucks, the pump screws up the calculatons … like the people who are extremely critical bc it didn’t wotk for them anf seem to bully people into their opinion! It’s like yikes.

Typically I don’t look for opinions on any treatments like potential meds because my theory is that most of the reviews out there on pretty much everything is typically negative bc it’s mostly the unhappy ones that bother to post and write negative reviews. That drug is the worse ever and never should have been approved by the FDA!!! As a example!!! Lolol

Other then that, it’s only normal that nothing could possibly work for everyone!!!

That’s awesome about the research where that patient did stem cell!!! Wow!!! Actually, you are right… chemo is absolute before it but not necessarily after … anti rejection drugs typically needed for organ transplants.

The dex redesigned g7 will be out soon enough and the transmiter is integrated in the sensor so thrown out every change. Let’s hope the design, adhesive and sync is even better especially since the tandem pump (can’t speak for Omnipod etc) have increased positively with control IQ and the Bluetooth with t-connect phone app.

I use my phone for everything… I have the reader but I find it annoying and it needs work!

Ciao

43

I probably sound like a broken record here, because I have mentioned this before in other threads, however, when I had the Dexcom g4/then g5, I could not live with the is that a High beep or a low beep? After doing a little research, I found xdrip and have used it since 2018. I have 4 different ringtones from movies to alert me if my glucose is high, low, predicted to be low, and persistent high…you should be able to do the same on xdrip ios, and xdrip allows you to set up different snooze times… my lows are 30 minutes, high is 120 minutes, but you can change the snooze durations… you can also keep them short so they are not so annoying…my current high alarm is “i rule!” From american beauty

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44

Thanks, can you give me simple instructions on how I can try it? Does it have to take over my pump as well as dexcom? I remember there were some issues with that with the pump company and liability maybe.

45

I am not sure why but someone on this thread seemed to say it happened to them as well. I am not sure why many react that way but I have experienced it here and elsewhere.

I read revues and information etc for nearly everything now and I don’t discount negative revues and criticisms. They are most often based in fact. It can be very helpful. It saved me from possibly starting a very expensive treatment that was being pushed on me, before I had even seen my doctor about a diagnosis, which has very serious side effects the risk of which far outweighed any benefit.

In the end we must all decide what is best for us and our loved ones in each situation and I am grateful there are people warning me about the adverse experiences they have had. Asssuming everything is always done in your best interest is sadly an assumption we can no longer make automatically if we ever could.

My thoughts were the chemo may have stopped his body’s rejection of the new beta cells which were grown from implanted stem cells. Everyone in the study was given chemo first apparently.

I am a little worried about G7 due to that because if your sensor etc fails you are in trouble if you don’t have extras and can’t get a new one. Especially with dex shipping everything overseas and firing the us workers. My last two tech calls were bad, waiting for an hour and then having to argue to get a new sensor etc. I have an excess now but will switch to g6 when my transmitter is up unless I can get another cheaper one.

But someone mentioned the proprietary tech will be released soon and so we may have more options. I hope that is true. Take care :slightly_smiling_face:

46

Hi

I think it was said the g7 is cheaper but unsure. It probably won’t cost $300 to get a new transmitter likr now. I would think that the integrated disposable is better bc it’s still 10-15 day change?? Somewhere… can’t recall the exact details but it’s like ok, well I will have tnr next one vs being completely out. I assume, like now, dex will provide extra replacements for free if lost through medical procedures or some trigger bleeding lack of connection thing if they determine it’s not you! Tandem also will replace dex sensors if there is a transmitter to pump issue. I had a research project playing with the g7. I can’t talk about it but it was around 1 year ago and patient feedback was very important to them. I really liked it. But on the flip side, my overall experience has been positive so that’s a personal bias!

I do think upper management is interested in true feedback. I’ve had people personally contact me to inquire about feedback I never expected anyone would care. One developer asked me a lot of questions and informed me of various updates being made on the web interfaces and this was before the tconnect phone app. The things he said were coming including stuff he’s working on are indeed available now snd improving.

I’ve definitely had Some awful and incompetent customer service and techs. One situation was severe enough thst I put in a formal grievance. Then again, I originally was starting process under Medtronic and they did a totally royal job ■■■■■■■ me off. Long story but basically it was enough that I would not likely ever use Them. It wasn’t even directly related to the pump!!

Life , good , bad, ugly lol

I never like sounding as if I’m all or nothing about anything. I feel like you might think I am? Or I’m not explaining myself clearly enough.

I understand you have seen others with this issue you have with your equipment. Makes sense… I’m sure there is some explanation for it. I hope the next step for you will be better.

I had a major issue with my pump. I can’t remember what it was. The company kept trying to blame various things anf I always … ALWAYS take notes with date/time/who I spoke with etc bc despite the other party documentation, people suddenly seem to not see what you are referencing when it’s important lll. Anyways, I did all of that snd could show thst they are just cycling with me. In the end, they replaced my pump. I thought yo ask if it was refurbished or not. Thry said it’s refurbished and I argued saying it’s unfair that my pump is new ans still under warranty. Obviously I didn’t break it and despite claims that refurbished isn’t typicaly significant, I still feel like it could possibly have less ‘life span’ vs new. Whatever the case, they sent me a new one lolol

Regarding reviews…

I do take so reviews into account too. I was trying to say that it felt like people rarely post a positive review whrn they are pleased with whatever product but most people upset will post. Often I see posts like for example, a restaurant menu item. I see people complain about a mistake from the app based food delivery which technically isn’t directly related to the taste of the food item. That’s a easy issue but still, I’m not saying no negative reviews are helpful or all positive reviews are good!! Haha

Scary about the issue you had but got saved by a review!! I’ve had a few atypical reactions and did a review because it was something that could easily be missed. I was on the antidepressant Effexor and after 1 year started having elevated blood pressure. I was in college and I’m fat so my PCP said it was expected given stress and fat! Fortunately my psychiatrist was extra cautious, up to date snd not one to just accept what might look obvious. He said Effexor could trigger high BP. Generally significant side effects show up quickly but this was 1 year. He transitioned me to something else. Low and behold it was Effexor! So stuff like that I will sometimes post bc it can be serious and missed!

I just dislike when I feel someone is making a sweeping remark because of their bad experiences but projecting that it will be bad for everyone else too…

In terms of stem cell and chemo… if it’s still tnr process I was last familiar with, the chemo is necessary to kill off your immune system in order to basically reboot with progenitor stem cells which will hopefully lead to a new autoimmune or malignancy free or whatever it’s being used for immune system. Chemo can only kill off the immune system which is the most dangerous period of stem cell. Yikes but embryonic stem cells are insanely miraculous anf beautiful. I assume that if the stem cell transplant doesn’t work, it’s likely that the persons immune system wasn’t completely eradicated. I know that my autoimmune rheumatic diseases often lead up to rejecting meds evrn the latest greatest biologics. My system seems to ‘outsmart’ Thrn but the chemo in on now is helping this far. It doesn’t help that I had no and inadequate treatment due to wrong diagnosis and sometimes insurance issues so the more my body is resistant
I
Same with LADA… have had diabetes for like 18 years anf only found out it’s LADA bc I was in a psychological based support group with type 1 & 2’s facilitated by 2 diabetes psychologists and one in particular suspected, especially given other autoimmune diseases, several DKA episodes, hypo attacks even in teen years that I had some type 1 variant. Despite years of various Endocronologists… no one tested, inquired and with the DKA thing, they would say well that’s atypical but whatever! I’m fat sooo yeh…

A psychological of all people pretty much dx me unofficially snd so endo tested and woe… ooops, thst also explained why oral meds only helped so much amd I was pissrx to need insulin. I still have type 2 resistance so I’m not completely insulin dependent but I have enough issues to need a pump. My Ha1c went from 12 to 7.3 within 1 year of pumping.

The psychologist had asked a friend of hers … a MD/PHD who does Endocronology research about my situation and she agreed that many people who are fat get a type 2 dx almost automatically. Rarely do the doctors check and bc I already have 2 autoimmune diseases, my risk is higher.

I so don’t know how I got to this topic lolll

I vanish for periods of time… boom I randomly read a email notification that catches my attention and maybe I will read it and rarely actually respond lol

But, Thrn I might make up for lost time with prolific writing lolol

Take care

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47

An external medical device with NO warning(s) notification provision?
With the current level of technology to monitor and provide an alarm, zero chance. NEVER gonna happen. No regulatory body would ever permit it.
It is funny now, prior to my use of t:slim and Dexcom, reading about the aggravation of the alarms, I did not think it could be so disruptive. I was younger and unaware back then (38days ago…) !
Dexcom legal team has to find a way out of the liability trap:
"…your application KNEW I was headed into hypoglycemia, it didn’t tell me, or anyone else, and that failure to advise caused me to fall over and I bumped my head. ".
Maybe we just need a to sign a waiver?! :
" For the sake of peace and quiet, I forego all rights to launch any legal action for ‘failure to notify’, and I freely choose to implement the software application option: " SILENCE ALL ALARMS " check box :white_check_mark: :sleeping:
Bad idea!

48

It seems like the problem may be a combination of the software programs you are using, as well as the multiple devices. You can download xdrip ios from the app store, set alarms etc, but you will need to choose one app and turn off the others. Most users do not have the Dexcom receiver anymore and only use their phone so they don’t have to carry around two devices, and to keep the interface simpler…if you have the Dexcom receiver as well as the phone, you may have different algorithms running which would not solve the problem, especially when you add in the tandem which is supposed to be the only device… maybe try to set up xdrip on a day when you don’t have a lot of activities scheduled and see if it works for you… its a great app, but feel free to ask for help if you are stuck…the problem is I use android, so xdrip ios might be a little different

49

Be happy you have the alarms

In the 50,s thru the 70’s all we had was a test tube to per into. The devices are wonderful and they allow us to life a long life

Much better than the 30 years or less we used to have!

Count your blessings

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50

I think everyone is missing the point that meee is having…it sounds like she has her Dexcom on ber phone and her tandem pump device that can see the Dexcom and make treatments from it, however, she also has her Dexcom receiver, so in essence, when she is high or low. She has 3 different Devices beeping at her…very similar to the progressive commercial - YouTube have too many pillows or devices, just need to choose one for alarms(I suggest the phone with xdrip)

51

Not a helpful reply but I I kind of expect that already from some here. Reading a post and the replies is a good idea before replying and then if you have nothing helpful to add just don’t.

52

I do not have my pump connected at all to dexcom, one due to using g5 still and 2 due to not wanting them connected. I will prolly try the shut off thing when I start G6 and see how it goes but overall there is no way I would let dexcom decide my insulin treatment since it is frequently very wrong for me. The pump alarms that I do choose to use just add to all of the stress.

Part of the problem I am having is that dexcom is alarming me sometimes in my ranges at every point in bg change. Someone else on this thread siad it did them to that as well. Newsflash is dexcom is not flaw free, lol. It sometimes alarms me at 55 and below without the sound too, lol.

53

Does xdrip endanger my pump warranty etc? I do not want any device taking over my pump.

I will take a look at it but if it’s something that is really complicated I am not going to do it. I am not into complicated programs, I like to keep things as simple as possible.

54

Try reading the post, no warnings was not mentioned. Less intrusive and frequent unneeded warnings were.

55

If it is cheaper I will be very surprised😹 that is definitely not the way dexcom has gone. If you don’t have a stash I do not want be dealing with dexcom etc to get a new one and have no cgm during that time. I can’t function without it.

Another a problem for me with all of my irritations will be leaving it on more than 7 days. I used to leave them on for 30 days sometimes, lol. But since the severe reactions I had to switch to 7 days only- by day 7 I am having mild to severe discomfort. It is possible I may be able to get the number of sensors I get increased on my insurance by changing the time needed to replace them. I have also heard that people said their sensors failed early, so what then? I do not want to spend my life on the phone with dexcom or anyone else worrying about if I have a cgm.

That is great you got actual feedback from someone, I never get any. I have had my pump replaced 3 times when it failed, no issues except they sent me a refurb the first time it failed with the same problem! I asked for new pump which they couriered over the weekend. Fortunately my original pump was still able to deliver insulin, but I had to keep it attached to a small charger to access the menu.

Next time the memory failed and I believe they sent me a refurb, I can’t remember now, which worked. Now I recently have the brand new tx2.

Yes I understand what you are saying. I find that people will write both but sometimes positive reviews are fake and some companies remove bad reviews on external sites and only allow positive reviews on their own sites.

It was a drug review site where numerous women posted their experiences with the drug fortunately. I always look up any drug before ai take it or consider it for many years now. I also have a neighbor whose friend took it and had a terrible reaction.

Wow that was lucky your doc picked up on the Effexor raising bg. I always read about everything now after so many bad experiences with myself and my family. That is terrible about your type 1 diagnosis, it should not be happening. Age and or weight will get you diagnosed as a 2 and many docs and med professionals still do not understand the difference! It is a disgrace. What you went through should not happen- everyone should be tested for antibodies imo.

I was not diagnosed at all with obvious symptoms going to numerous docs and then told I was type 1.5 and a little type 2 by my gp doc, while I was IN DKA. I survived it all somehow but not without damage to my vision, blood clots and more. It is a story for the twilight zone for sure.

Very interesting about the trn and chemo, I am sure you know more about it having gone through it. I have to read more about it.

I hope for better treatments for us all in the future :grinning: take care.

56

Did you know you can connect the G5 to the X2 in lieu of the receiver? It was the very first ever software update they did, to add G5 connectivity. You can’t use Basal-IQ or Control-IQ with the G5, it just puts the CGM data display on the home screen of the pump. What I’ve surmised is that you’re hating the receiver specifically, so this would be one way to ditch it.

As far as Xdrip is concerned, it cannot speak to the pump in any way. It is sometimes used as a tool in the looping community, but only with specific pumps (of which the X2 is not one) and only when you go out of your way to set it up to do so. There is only one app on mobiles that can talk to the T:slim X2, and that’s Tandem’s own T: connect app. Xdrip can’t affect your warranty on any way, it’s irrelevant.

I’m a massive fan of Xdrip… On Android. My understanding is that the Apple equivalent isn’t nearly as good, and isn’t being currently updated/supported. A lot of what Xdrip does violates both Google and Apple’s TOS, because it’s hackware. We can get around that on Android by downloading the app from an alternate repository and manually installing it, but Apple doesn’t allow that. If you decide to try the Apple version of Xdrip, but don’t be surprised when it doesn’t have all the features you’ve heard mentioned. Most Apple users choose Spike instead. I don’t keep up with Apple software much, but I believe that one is still the reigning champ… Which also can’t talk to your pump in any way, nor void your warranty.

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57

I think spike was taken down, but I would still try the apple xdrip simply for the low predictions… I use those more than the low alerts as I’ve usually already corrected by the time low alerts arrive…I also frequently snooze from my watch, which might be more difficult or expensive with apple…but I still recommend trying xdrip…

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58

OK I will take a look at both of those thank you. I know the G5 could connect for the blood sugar on my pump but I don’t want to do that because my pump is not as accessible it’s in the little pouch with a zipper and I like to be able to see my blood sugar quickly. However if I get the watch soon I may try doing that.

I’m not sure yet, but I really am not looking forward to having to learn about all of this such a learning curve area but if it will help with the stress from all of these alarms maybe it will be worth it.

59

Great. I will take a look at Apple X strip. Does it work on your watch as well? I’m not even sure if the watch has alarms on it. I do know that I have to carry my phone around for the watch which is not good because I have the larger version of the iPhone 8.

60

I hear you!!! And alarm fatigue is the biggest reason people stop using CGMS! I know back in the early days of early versions of Medtronic CGMs, I just couldn’t take it and I stopped for a long while.
When I started back up with Dexcom G4, the alarms started backup but my family was thrilled. They are constantly worried about my lows so they were thrilled with the alarms. But even they were starting to get frustrated with the alarms.
There were many days, I just wanted to throw it against the wall! And people around me would always ask, how I deal with those alarms all the time. It can be a deal breaker for many.
I think one thing these companies don’t do a good job is letting people know how to adjust alarms so they don’t drive you nuts. Once I learned I could control the length of time on repeats, my life got much, much quieter.
I also have a newer pump system that makes the alarms much less frequent.
I hope you can find your golden zone. I know you know these alarms are necessary but man, I get it! Alarm fatigue is a very, very real thing and you have my sympathy. Just no answers that others have already suggested. Hang in there!

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