My love - hate relationship with the Libre system

#1

I have been using the Libre system since August. 50% of the sensors used have failed. Abbott replaced them but that is not the point. It is the aggravation that goes with a failed sensor.

None of the sensors have been anywhere near accurate but that was OK with me because I could see the direction, if I was climbing, still climbing, when I peaked, the time frame until I was back down, etc. When the sensor indicated I was leveling off at the top of a spike, or beginning a downward direction, then I would do a finger stick to get an actual blood glucose value. I could compensate for the inaccurate values. (And before anyone jumps in to alert me to the time lag between blood levels and interstitial levels, yes, I am aware.) THAT was not the source of the very inaccurate differences in values.

All the above being said, I was still thrilled to have the Libre system and be able to watch the direct and trends.

Then we get to today and I am thoroughly disgusted with the product and plan to write Abbott regarding their sensors. I applied a new sensor Tuesday evening, waited the 12 hour warm up, and all was going well, until last night and all through today. The sensor was “working”, (sort of) - - giving me a value, but not only was it an inaccurate value, but direction had ceased completely. The sensor said I was 79, moments later, 81, minutes later, 78, and continued for hours hovering around 80. I knew I was no where near 80 and did a few finger sticks during the same time frame. I was in the 200’s and climbing. I was OK before with wrong values but to not register such a rise is NOT acceptable. After about 24 hours of this, the sensor has suddenly begun to move in the direction of my blood glucose.

What good is this system if you can’t rely upon it at all?

I will discuss this with my endocrinologist next week as he uses the professional version with some patients. I wonder if the information he is receiving is just as poor as what I have experienced. When the information sent to him is not verified with the patient’s blood glucose, maybe he is unaware of the lack of reliability of the system.

I have read from many here that the Libre system works GREAT for them. My 3 months of use has proved just the opposite for me thus far. I may ??? (not sure) give the 14 day sensors a try before I give up completely on the Libre system.

I thought this was the answer to my prayers over the past 12 years of wishing I had access to a CGM. If it were giving me accurate direction, I would be happy but even THAT is now in question. I am so very disappointed now and was so thrilled initially.

Any one else having problems with their Libre system sensors?

#2

I’ve already posted. I had the same problem. For me, the Libre was incredibly inaccurate so I dumped it for a Dexcom. Within 6% accurate since I got it six months ago. Go figure.

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#3

I know many people have problems using the Libre. In my experience the Libre runs about 20% low. BUT it has been 99.99 % consistent for over 6 months.

Due to the ease of use I test muvch more often

The overall result is an A1C that is unchanged from the pre Libre days.

The biggest mystery to me is why many users have a bad time with Libre? If it is a batch of bad sensors it must be a huge and widely distributed batch?

I know I had a similar problem when I startred pumping with 50% failure of soft cannula sets. I switched to stainless steel and have had 3 set failures in 8 years.

So I am incompatible with soft cannula infusion sets.

I wish you the best. You certainly get A+++ for effort.

#4

In my opinion the board of Abbott Labs and those at the FDA who approved no fingersticks should be thrown into the darkest dankest dungeon on the planet.

MY OPINION

It has been helpful for my wife but the no fingerstick propaganda is sheer nonsense

#5

that perfectly describes my feelings about the Enlite system. :slight_smile:

#6

Tony, please include the FDA for approving Sof Sensors and Enlites when throwing things into a dark dungeon. :slight_smile:

#7

That goes without sayin - the biggest medical fraud in history - bar none - my opinion

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#8

I wouldn’t be surprised if money changed hands to get them approved.

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#9

Many thanks to all that have responded. It was so late when I was writing last night, did I mention that the sensor started “moving” again finally last night? Giving me numbers that were in line with the ups and downs of my glucose levels. AND, they were more accurate than they have ever been previously. Doesn’t make any sense.

Just guessing here but MAYBE, since the 14 day sensor has been on the market in Europe, Australia, and Canada for some time, . . . maybe Abbott just tried to alter the 14 day sensor to a 10 day sensor to satisfy the USA FDA and that could be the root of the problem with the sensors in the USA.

My supplier said in a phone conversation today that they should have the 14 day sensors available by next week. I cancelled my pending order on the 10 day sensors and said I will wait until they have the 14 day sensors in stock and ready to ship. I am going to see if they are any better and make my decision to stay or quit after that attempt.

I will keep the community informed of the outcome. Thanks again for everyone’s help and comments.

#10

Babs
I am using the 14 day sensors they seem to be as accurate as my Dexcom 5 system (but a whole lot less expensive
the Dexcom was cost me after insurance 1018.00 for 3 months sensors and 922.00 for 2 bluetooth devices). so far I am happy with the 14 day sensors

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#11

It has been a while since I logged on here. I took a break from what was becoming an obsession with my diabetes.

For many years, I was eager for the chance to use a CGM and then, when the Libre Freestyle system was available and I qualified, I was ecstatic. I had some ups and downs with it as I have posted about in the past.

In February, nothing seemed to be helpful. By March, I found myself obsessing about my diabetes. It was controlling me rather than me controlling my diabetes. I think the access to my “numbers” every minute was working against me mentally, rather than being beneficial in aiding me in control of my diabetes.

I stopped using my Libre CGM, I became less strict about my diet, I was having “other” health issues that were taking up my time, so dwelling on my diabetes every minute of the day had to take second place.

I guess the “break” was good for me. My A1C was lower at the doc this week than it has been in 6 months. It seems the harder I was working at controlling my diabetes was NOT helping. When I was not checking my Libre every few minutes (since I had quit using it in March), my numbers improved.

I resumed using my Libre this week. So far so good. I am not obsessing with it, at least not yet. I check it about once an hour.

This is my first use of the 14 day sensor. My new 14 day reader has been a little crazy but the sensor seems to be doing better than the 10 day sensors did. The reader stops “sounds” if I plug it in to charge it. Also, if I use a test strip. I have to run the reader test to get it to sound again.

I am glad to be back among my diabetes friends here on this forum. Sorry for my absence but I needed to stop my diabetes obsession for a short time.

#12

Babs5,

I’m on my second 14 day sensor and my take on the Libre is the same as yours. I’ve found some very useful in spotting trends like I peak between 6 AM and noon even without the influence of foods.

Even after this short period I can also see how having access to constant data is not good for me mentally. I’m trying to manage my diabetes at a micro level which put too much stress on me.

#13

I love having data 24/7. It keeps me safe at night or anytime I’m asleep. Using a CGM, I can microbolus prior to meals if a tiny bit high, or anytime I’m above my preferred range because I catch excursions before they get out of hand. I think you would learn how to use a CGM to make you LESS stressed, as opposed to what u think it would do to you.

When doing strenuous things I can keep from going too low. My xXrip app (used with my G5) SPEAKS my data values at any interval I choose, which is great for gardening, etc when I can’t be looking at a phone or watch. It’s so helpful for letting me know I’m dropping before it is so low I have to pig out and then rebound.

#14

I’m T2 not using insulin so on damage data isn’t something I need. Don’t get me wrong I’m glad I have the CGM and it has provided me with some really good insight as to how I’m doing on a daily basis. It has shown me how important exercise is.

However it can also create an up and down rollercoaster of feelings when seeing good numbers and numbers that I expected to be different. In the bigger picture I don’t think I need to see these numbers all the time. I’m planning on using it when the doctor wants to change medications. I’m also thinking of using it once or twice between my A1c checks to give a little snap shot to see if I might need to change my diabetes control.

For me, and this is only for me, I think limited use is better for my overall well being. I would recommend getting a CGM to everyone with diabetes.

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#15

Not all CGM’s are created equal. I am guessing Dave44 is probably using a TRUE CGM, like a Dexcom, not a Libre. What I mean by “true” is a CGM that is calibrated by the patient and continuous. With the Libre system, it is factory calibrated and one must take the initiative to get a reading by swiping the reader across the sensor.

I am just very grateful to have any type of CGM now, even if I need to use my meter to get an accurate reading for making decisions about insulin dosage. The Libre system does give me accurate direction of glucose levels rising or falling or steady.

I discovered only through the use of the Libre system that a cup of coffee was causing BIG spikes.

Every piece of information, from whatever device we have available to us, can be a tool for us to help control our glucose levels. Not everyone needs the same information so what devices we use may vary. The thing I need to keep in mind is to use these devices (tools) to help control my glucose levels and not have it control ME.

#16

Coffee was causing spikes? Caffeinated or De-Caf? Were you using milk or sugar? Never heard of coffee causing spikes.

#17

The average U.S. adult consumes about two 8-ounce cups (474 milliliters) of coffee a day, which can contain around 280 milligrams of caffeine. For most young, healthy adults, caffeine doesn’t appear to noticeably affect blood sugar (glucose) levels, and consumption up to 400 milligrams a day appears to be safe.

Some studies suggest that drinking coffee, caffeinated and decaffeinated, may actually reduce your risk of developing diabetes.

If you already have diabetes, however, the impact of caffeine on insulin action may be associated with higher or lower blood sugar levels. For some people with diabetes, about 200 milligrams of caffeine — or the equivalent of one to two 8-ounce cups (237 to 474 milliliters) of plain, brewed coffee — may cause this effect.

Caffeine affects every person differently. If you have diabetes or you’re struggling to control your blood sugar levels, limiting the amount of caffeine in your diet may provide a benefit.

#18

When I discovered the spikes from coffee, I discussed it with my endocrinologist. He suggested that I use half decaf and half caf to make my coffee. I tried that. NO change. I then went to full decaf, still had the same spikes. I do not use any type of sweetener in my coffee. I do use powdered creamer or milk.

I am just not ready to go to black coffee at this time.

I have reduced the amount of coffee I drink and try to substitute water for coffee at times.

#19

I drink it black - once you add anything it’s ruined - my wife ruins it.
It takes years to grow it - then all the processing and then ruined at the last second - tragic :cry:

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#20

Milk, even skin milk has 13 grams of sugar per 8 ounces, powdered creamer is usually high fructose corn syrup and hydrogenated oil…so those can easily spike your BG levels…I found out black coffee will raise my blood sugar because my liver starts to produce glucose… I only found out when I started using cgms. I was on affreza for about a year and miss it a little because I would inhale a 4 unit cartridge and be fine with coffee and maybe unsweetened almond milk and stevia but usually black.

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