so sick of dexcom issues.

I just wanted to vent and see if anyone has any advise for me...

We have been experiencing dexcom issues off and on for a few months. I had to go through a whole box of sensors while being told that it is a sensor issue. I got ONE replaced and had about four conversations.

I finally got ONE good sensor and thought all was well (this was once I tried a new box). I figured that the next sensor would be fine and all this craziness (sensor error 1, ???'s, sensor error 0) was behind us. That was not the case.

Tried the new sensor from the new box (second one that I have used out of that box) and here we go again!!!! SENSOR ERROR 1 and now SENSOR ERROR 0 (what does that mean, by the way).

So, he has had this on for over twenty four hours with about 5 hours of readings that were inaccurate and mostly sensor error 1, along with ???'s and now sensor error 0. I have to call them because two times ago, when I had issues, I was equally as patient (trying this no good sensor for two days until finally pulling it) and was chastised for pulling it without having had a conversation with dexcom first. The time after that I had a conversation and they told me that they would call me on Monday (since my conversation was on a weekend) and they never called, no message from them either SO I didn't get THAT sensor replaced, of course. Now, I don't want to call on the weekend, because it ultimately does no good but I need to pull off this sensor and AGAIN try another one! What is the deal???

This cannot possibly be sensor after sensor after sensor, even from different boxes with different expiration dates!

They wouldn't even entertain giving me a new transmitter b/c sensor error 1 and ???'s are apparently always (even though I cannot believe this) caused by sensor issues. They replaced my receiver because it clearly had an issue, my warranty is getting ready to expire so I guess they don't want me to have a whole new setup before the warranty expires.

What would you do?

I am so tired of spending time on the phone with dexcom. We have other things to do! Any advise is appreciated! I have had 6 sensors from two different boxes NOT WORK! This is really unbelievable. My son is threatening not to wear this anymore, he is fed up!

Thanks... I feel slightly better now.

 

Hi Tammy,

that sounds extremely frustrating. I would be so angry and would want to give up.

We've been using Dexcom for about 15 months and i was frustrated for the first 2 weeks and wasted 2 or 3 sensors. One had an actual error and stopped working but in the middle of all that it seemed uncanny. full disclosure: I didn't take any lessons - just read the instructions and did it myself.

I called Dexcom and they asked me a bunch of questions about where i was putting the sensor and whether or not i was starting it at night (apparently if you start a sensor (not insert, but start) on a child while they're asleep it causes issues - no idea why, but Dexcom themselves told me that.

they also told me not to place it on the abdomen. My daughter was only about to turn 6 and weighed around 40 lbs so she didn't have much fat.

We now wear it on the arm and i must say since I've followed those odd instructions we haven't had issues. Sure we have ??? once in a while, but normally when we're on week 2 and it's been bathing in chlorine from the pool twice a day.

I wish i had better advice for you - it already sounds like you're calling a lot which would have been my first move too.

is it possible to get a Dexcom trainer to come help?

Good luck to you. We feel very blind with out our CGM now and i can't imagine living without it - so I hope you get yours working.

 

dexcom

Thank you so much for all of this great info and kindness

I needed that!

Okay - so, are you saying that it is best not to 'calibrate' while sleeping or just the whole beginning few hours (even beyond calibration) should not be done if sleeping is going to be during that time? I am really interested in that aspect.

The strange thing is, that we have had this for almost a year and pretty flawless except over the past two months. I have googled my sensor error one and sensor error zero and what gets me going is that other people, who write on various websites, talk about those errors along with the fact that 'dexcom replaced the transmitter' due to those errors and yet it is out the question, apparently for us (since we are nearing the end of the warranty). I have read people saying that they had those same errors and it was attributed to the transmitter and yet dexcom says it isn't possible. If I could take the pain and frustration all myself it wouldn't be so upsetting, but that it has to involve my son is what gets to me. Add into the mix LOWS in the night when I NEED a cgm and I get agitated!

Thanks again for the support...

I, too, feel blind without it...

 

I can relate to your Dexcom issues...we've had Dex since December of last year, and honestly...we rarely get a full week out of our sensor. Often after 2 or 3 days, we have constant ???, sensor error 1's and 0's. I have had good luck with customer service getting sensors replaced, but it has become such a PITA, that we often take 2 week breaks from Dexcom. I like to have it as a tool, but for us, in our experience it is unreliable and often more hassle than it's worth.

I still love having it, and won't give it up, but we seem to be having a lot of issues lately. We used to have good luck on the back of his arm, but now we seem to have the best luck on his tush.

Anyway, I'm no help, but wanted you to know that you are not alone!

 

thank you

Thanks Stephanie! You actually did help because knowing that this isn't just us is helpful!

I cannot figure out a reason, other than equipment failure, that something would work so well for so long and then not work well at all.

Thank you again! I have to place another call to them. If I gained something from spending so much time on the phone it would be nice.

Just wishing we had a cgm for this night... no such luck.

 

Well all I can say is that we now have "3" broken wires in my kids arms!!!!

I am not flipping kidding.

I honsetly want to stop, but know that her life is so much better with the Dexcom.

I will stop going past 7 days thow, because I veleive everytime so far has been past 7 days.

We get ??? right before they fail, and then on removal we "see" the problem.

I don't remember the last time we had anything other than ???, But I will tell you that if the senor is "off" by more than 20% I wait 10 minutes and then calibrated. I find by doing this we do not get "off" in the oter direction and can usually get a sensor more acurate.

I you do not "over tape", your sensor then you can try this too, CAREFULLY remove the sensor and clean the posts and put back on after completly dry. Have you kiddo drink allot to get really hydrated.

I find that sometime when a kid getts dehydrated the posts can get dry and flaky and sometimes you can recover a sensor that is wacky. dexcom will not advise you to do this, but if we do not have over tape I will try it ro try to save a sensor.

 

Dexcom said it was fine to calibrate while sleeping (and we do it all the time) but just not to start it up while sleeping.

I have to say it sounded crazy to me, but i was starting at night (because my daughter was afraid of the insertion so I was doing that at night).

When we stopped starting it up during sleep it helped a lot.

I rarely have gotten the Error 1 code and don't think i ever got a 0. I see both in their FAQ:

http://www.dexcom.com/faq/seven-plus

The other thing I found out is that the transmitter is only good for 12 months. Ours was 1 year old in early april of this year. I called in May to inquire about replacing the transmitter and Dexcom said that the replacement was going to be for a whole new kit.

They said that when i start seeing numbers that are more than 20% off all the time, it's time to replace it. At this point it was already past 12 months and i didn't want to wait until it was that "bad" and then have to wait another week to get the new one processed so we just ordered the new one. I am lucky enough to have insurance that covered it again.

Perhaps yours is suffering a little earlier than 12 months?

Either way it stinks b/c when it works it's soooo good and to not have it working would drive me mad!

I really hope you can get it sorted out.

have a great day

 

We went 18 months on one transmitter - the receiver failed (!) and they would only send a new, full kit. Insurance paid so I didn't argue but I did ask them to escalate a complaint that when they replace a receiver it should get the new 1 year warranty.

We still see times like yours but it's usually at the end of life for the sensor or it's falling off or just crazy BGs for some reason but we are functional probably 85% or more of the time. The first day is iffy but we have had sensors kick in at 2 hours and got 2 weeks or more out of them. We rarely replace the sensor before the 7th day and probably get 2 full start ups half the time.

I tend to agree that the transmitter seems questionable and I would be frustrated that you couldn't find a temporary replacement just to test that theory - sales rep maybe?

That having been said, if I were to start having those issues on the same scale I would question if I was hitting a good spot - no muscle and good contact with all the adhesive to the skin. Nothing but alcohol on the skin, then dried, before insertion. Pinching up while inserting. Cleaning the transmitter contacts thoroughly with an alcohol pad prior to connecting. Only calibrating when the BG was +/ 20% - not 20 BG. Trying not to calibrate during extreme highs or lows or when double arrow up or down. No Tylenol at all. Any other meds? (who knows - perhaps you found an interfering drug) Are the sensors still firmly attached when removed? Are the wires bent drastically? Are you seeing very drastic BG swings? 40's to 400's and back?

I honestly don't know what to say and I would be as frustrated if not given the opportunity to swap a system temporarily just to see if it was something you were doing and not realize it or perhaps crazy body chemistry or something.

 

Would your rep loan you a transmitter for a few days to see if that solves the problem? We troubleshot once that way, and it was very useful.

 

Tammy...I'm so sorry and can relate to the whole dexcom issue with you...we still are seeing ???'s but things have gotten a little better with our last two sensors....I have a extension number for a supervisor if you would like to have it...maybe she can help. Please keep posting because I have learned from your post and your right it's nice to know that we aren't alone in the whole dexcom problems!!

 

Thanks for that response - are you saying to use (for example) iv3000 over the transmitter and sensor? I was a bit confused, did you mean that we should take of the TRANSMITTER off and clean it? You had said sensor so I was getting confused.

Thanks again! Getting ready to put a new sensor on.

 

Thanks to all of you for a BUNCH of great info. In about five minutes we are going to put that sensor on - swellman, your reminders about the proper process are great, thanks so much.

Thanks to everyone else - Karla, I don't even know who our rep is, if anyone has a rep they want to loan out plmk We didn't do a training and I ordered it directly from Dex with cash so... not sure if we ever had one working for us. I know my insulet rep has come through for us so that would be a great option.


I would love to know how I get another setup after my mid August anniversary... as soon as my warranty runs up. I need some realiability back in our lives!

I wish I could put it on a different spot on him b/c his arms are all muscle now, thanks to kayaking! I have a little bit of pinch left but I noticed that it is becoming less and less.

I am off, numbing cream time is up! Wish me luck - fingers crossed.... please work, please work.....

Thanks again to you all! It brightened my perspective on it to get the support and I am really grateful!

 

I don't know what part of the country you live in, but I've often wondered about the temperature affecting the sensors. On the package it says 36-77degrees, I just wonder how hot they get during transport and if it affects them?

Sorry you're having problems. When we have trouble with dex at night, it's pretty much a sleepless night.

 

hoping that you have a great sensor going now and that things settle down for you and your DS!!

 

You might want to omit that numbing cream just once - unless you wipe the area clean with an alcohol swab then I guess it won't matter but ... just trying to help eliminate the variables.

 

Hey Swellman -

Yeah... the numbing cream has been a constant since even before the dexcom days, when we used nav. He doesn't have a very high tolerance for pain so we have used it faithfully.

So.... update: Two hours after insertion... ???'s and now, still ???'s.

I am so tired!!!!

Thanks again though!

 

Hi there Paulla and Sara...

no good news here... just ???'s -

gosh, I was hoping.

 

Tammy,
The I found and please don't laugh, but when I get ???. I do not pull the sensor right away. I wait force a restart. I restart right away the first time I see the ???. That is time 1. I then watch closely if it goes to ??? again I force another restart. That is time 2. Sometimes I actually get readings after forcing 2nd restart sometimes not. If it goes to ??? on the 2nd time I force a 3rd restart. I would say at least 90% of the time the 3rd time I get it to start reading with no issues. I spoke with a dexcom rep and he said yep he saw the same darn thing. No clue about why the 3 restarts works but it does. I pay out of pocket for the darn things so It has got to be dead. If you get one of the errors you are getting it means the dexcom is totally off I believe it be sensor error 1. You need to wait 1 hour and recalibrate it. I generally if it is really far off force a restart when I get sensor error.
Wendy

 

I was hoping for better news...sorry....I just wanted to add that we also got error 1 yesterday and i forced a restart and it came back to life and has been tracking really well....but the one thing that has made the most difference in ours is the paperclip reboot....our dex turned it's self off and wouldn't come on so I did a reboot and that has seemed to make it work a lot better....maybe you could try a reboot...it sounds like you have nothing to loose and couldn't hurt it...but I'm sure more experienced Dex users can comment on if that would be a good ideal or not!! Hoping things turn around for ya'll. :cwds:

 

Gah ... I would be pulling my hair out as well.

It can only be three things - either the sensor, the transmitter or the receiver. I guess it could be a combination but that's just impossible to troubleshoot.

If it's the sensor it almost has to be something you're doing unknowingly. The odds of that many bad sensors is just too great in my opinion. Maybe it's the site location or maybe it's the numbing cream interfering with the sensor or hitting muscle or a bent wire. It would be really helpful for someone else who has seen good results do an insert just once. I would ask who your local sales rep is and try to make contact. I think they would have an RN nearby to help in these situations.

It could be the transmitter but that's easy to diagnose IF you had another transmitter. Are you sure it's fully engaged - two distinct clicks when you pull the seating tab and visually inspect the little clear holding clips to make sure they are fully engaged? If you're careful you can disengage the transmitter and try to manually insert a new one - I imagine it would take some pressure though. I have an old one that's around 18 months old I would be glad to mail you for a test if you want. The battery has to be getting weak but I think it was working fine when they shipped me a new kit. It has been setting for a month so I can't be 100% sure it's at 100%. Are you cleaning the little dots well with an alcohol pad?

It could be the receiver and doing the paper clip reboot can't hurt - you have to re-enter the data, set date and time and the transmitter ID. You wouldn't have to remove the sensor either - just do a new start up.

I guess there's a small chance you are seeing RF interference. Does it get better when you are somewhere else? Do you notice this only at home or is it the same out and about?