Freestyle Libre Failures


#121

My wife has it - the reader is soon going to have a date with a 40 ounce hammer - I am going to try to switch to Dexcomm on Medicare but she got the Libre in Feb - Huge mistake on my part. I do not understand the point of having it if is not somewhat consistent - I have spent hours on spreadsheets using glimp to get at least an average to use. I cannot say it has not been a little helpful. I also do not understand replacing a sensor that does not work with another that will not work. The product should be taken off the market or the no stick claims done away with.

By the way mixing up readers will not hurt a thing -


#122

Tony, that’s how I felt about Enlites. Now that I have a Dexcom G5 it makes me retrospectively even MORE ticked off at MM for making Enlites, as well as the FDA for approving that crap. I had 22 or more replaced in about a year because of them being random number generators. My G5 is crazy-accurate most of the time. Now I can leave the house without a meter.

I feel that bad data is worse than no data at all. I’d rather guess at my bg than have a device tell me that I’m at the opposite end of the bg scale than in reality.


#123

My wife has been down the enlight road - not only did they not work but I went thru A billing nightmare where they told me lie after lie about it’s resolution for a year. My opinion is that it was mass consumer fraud and the board of directors should be in Federal prison. Again my opinion. But hey, now they claim the new ones work.


#124

CGM’s and meters all have problems with accuracy and all have high error rates, guess they should all be taken off the market or we should at least be told not to dose off of the result from any meter. The accuracy of meters is an absolute joke, yet we have been dosing off of them for years. Yep, meters need to be removed from the market, or at least the ability to dose off of them needs to be taken away, they are dangerous.

Pumps absolutely have to go, when they malfunction, they can dump insulin into a person like there is no tomorrow and totally overdose them on insulin. Someone could die from that very easily. Yea, I know of people who have had that happen. Pumps can also cut off insulin delivery and cause the person using it to go into DKA in a very little amount of time since there isn’t always a warning that they are getting no insulin. Yep, known of people who have had that happen too. Yep, pumps need to be removed from the market, they are dangerous.

Or maybe, just maybe, we can just take them for what they are, a tool to help us, insert some logic into the results we get and be grateful for having them and use what works for us and walk away from what doesn’t.

It is not a perfect world outside of the diabetes world, why on earth would anyone think it would be a perfect world in the unpredictable diabetes world?

But, if we are not going to just accept things don’t work right all the time for every person and are going to work to get these dangerous products stopped from being used in the way they were designed to be used, then after we get these horrible CGM type products and meters and pumps off the market, maybe we can work on getting those deadly cars off the roads. Way too many people get killed by those every single day. Granted, it isn’t often the cars fault, but rather the drivers, so maybe we should just forbid people to get behind the wheel at all because people can and do kill others while behind the wheel every single day. But then there would be no reason to have the cars, so yea, we should absolutely get rid of those pesky deadly cars, they are dangerous.

I am very offended that someone would make threats to circumvent proper channels to remove a product, or to remove important features of a product, that works well for so many people just because it doesn’t work well for themselves. I am offended that someone thinks their so called influence should be used in this manner. Someone believing that calling on their “friend” to take care of a problem they are having and circumventing the official process is actually the right way to get things done, rather than going through the appropriate official channels, is appalling to me.

I really hope, for the sake of this “friend”, that this “friend” is really high up on the food chain at the FDA, as doing a friends bidding in this manner, could be very costly for him if he isn’t, maybe even if he is. But, maybe he doesn’t like his career much and would have no problem with it ending. If people knew he was unethical enough to allow his friends to use him in this manner, it could cost him his career in a way that could totally ruin his chances of ever working in his chosen field again. On the other hand, if he is so unethical as to do a friends bidding in this manner, he doesn’t really deserve to keep that career, regardless of how high up on that food chain he is. I am glad I never had “friends” who would attempt to put me in that position.

But, all that probably isn’t too relevant as I think someone wants people to believe they have a lot more pull than they really do. After all, typically, those who can do things, just do them, they don’t make threats. Those who cannot do things, threaten and brag about how much they can do, all the while knowing they cannot do a darned thing, otherwise they would have just done them instead of throwing threats around like children do.


#125

It will fit nicely in any size trash can. I guarantee it.


#126

Nothing is going to be taken off the market regardless of how much pull someone has or does not have.

Perhaps you have not read the claims that Abbott makes about the Libre!

Of course followed by 17 little sentences about why you may not want to trust it.

My opinion is the claims of no finger sticks should be done away with - period


#127

Well said. My comment would be, there are an awful lot of people running around with pumps who have no idea how to program them. I can’t believe how many will say only their doctor is allowed to change their settings, and they would never attempt to do it themselves. That is scary, dangerous and yet all it would take is some proper education. Any tool can be misused. The Libre manual has 135 pages of instructions one can read, and hopefully they will.


#128

Yes!! That always blows my mind. How someone can have a pump and not know how to use (program) it (other than little kids, of course) kinda makes the pump next to useless. sigh…


#129

Isn’t that what Walsh’ Pumping Insulin is for??? I remember doctors and nurses handing out the book…:slight_smile:


#130

Another outstanding feature of the Libre is having a 12 hour gap when one sensor expires and the new one is ready’

Of course you could start the new and be unable to read the old one - 12 hours any way you slice it

This fits my one idiot in the room theory to a T

There was a meeting and the one idiot said - WHY DON’T WE HAVE A 12 GAP?

Instead of the others telling him to be quiet they said! Hey great idea!!


#131

It’s no big deal. Most people arent concerned.


#132

No big deal?

I thought it was advertised as no finger sticks -

Yet one would have to in the 12 hour period

I use glimp to get around it - glimp is no better then the reader - but glimp is not for everyone and folks should not need glimp to begin with - the fact the glimp even exists is proof the product is flawed.

It is idiotic so I think its a big deal

And how would you know most are not concerned? Srsly


#133

I joined the USA Libre users Facebook group. I belong to quite a few groups and it has been the most encouraging, supportive, happy friendly group ever. Just about no one is complaining about things that people keep pointing out. The fact that the booklet tells you all over the place you still need to do some finger sticks is enough info. I don’t think they had the greatest marketing campaign, most of the pharmacies that were lined up to sell the system didn’t get it…but A1Cs are going down, people have info they may not have had before and it is affordable. I couldn’t begin to pay for a Dex via my HMO, but happy to have some pattern and trending info now.


#134

These are all good things for people with diabetes. I’ve never used a Libre but I can see the value that people with diabetes get from it. No single solution is going to work for everyone. Having choices will work best in the long run.

I used an older Dexcom system for several years, the Seven Plus system. While it was not as accurate as the current Dexcom systems, it was way better that living without the information it provided.

I’m glad you have found some technology that works well for you!


#135

Everything would be a whole lot easier if it was one-size fits all. But that is just not the reality.

Choices are nice.


#136

Dinner - Countour next which reads a little high — 172

Libre reader 227

My last post on this topic because after dinner I am going to smash it with a 40 ounce hammer


#137

Hi mike , I havnt read the whole thread but did see your post and a few subsequent posts. I’ve had T1 for 36 years and was a mad exerciser (cycling, running and swimming) up until 1.5 years ago when I had to stop while I sorted out Hashimotos (another exciting (sarcasm) thyroid autoimmune disorder).

At my peak I was taking only 8 units of lantus and about 2.5 units of novorapid for meals. (So to me 12 units of lantus can be perfectly ok ) and yep I get a big spike of dawn phenomenon too ( my endi said it was a cortisol shot by the body in waking). I too found what you mentioned if I had carbs the night before it seemed to spike more in the morning. I also have a complete carb free breaky. Plus often need a bit of novorapid in the morning (I do have my lantus just before sleep btw)

I have also found that my Libre sensor has stopped working after hard exercise and I’m wondering if it’s a combination of where it’s located on the body and movement (particularly muscular) wiggling the filament sensor out (as when I’ve pulled the sensor unit off the filament seemed like it was flat (hope that makes sense).

Re your doc … I’ve found over the years that many of them have limited knowledge and have discovered with Hashimotos that seems to be even more true.

Bottom line… dawn phenomen is real, 12 units of lantus can be fine and yes the Libre can stop working especially with exercise. Your good mate :slight_smile: - regards Martin


#138

Thanks so much, Martin! Having experienced these things for so long and also having received the responses I have from doctors makes one feel a bit crazy over time. Though I wish no one had to go through this it does help knowing I’m not completely off my nut insane.

I can’t recall if I mentioned only Thyroid or Hashimoto’s disease additionally in earlier posts but I currently have Hypothyroidism and my brother has Hashimoto’s.

I suspect I have Hashimoto’s as well but it’s been difficult finding a doctor that will test for it. I’ve recently found a new Endo and have been waiting for my first appointment and will not take no for an answer - if it comes down to it I will pay for the test myself just to know for sure.

Do you notice a direct connection to variations in your TSH levels in regards to your basal insulin dose? Does your basal insulin dose become more volatile when TSH levels may have changed?

I’ve read a bit on how inflammation may negate the effect of Thyroid medications and have theorized that ups and downs in the effectiveness of the medications used to treat my Hypothyroidism might cause my metabolic rate to change which then either lowers or increases my basal insulin requirements depending on whether it increases or decreases.

May I also ask if your decision to go to a lower carb diet had anything to do with the Thyroid and what you limit yourself to daily for carbs? I’ve been considering this to reduce inflammation in general as well for the above reasons.

Have you found anything that prevents or limits the Dawn Phenomenon other than an addition dose of insulin after you get up and start moving around?

In regards to the Libre sensors, from what I can gather and what others have stated in this thread I suspect dehydration may be the cause for failures with the sensor in my case. The sensor apparently works via interstitial fluid which would be effected during periods of dehydration. Have you tried taking in more liquids than usual during hard exercise as an experiment?

Again, really appreciate you sharing your experience and I can’t tell you how much it helps knowing this is not solely in my head. You’re the best, man. :smile:


#139

Hey Mike, so much to talk about.

Firstly thanks for the dehydration tip … I hadn’t thought of that.

Re DT1 and Hashimotos… all I can say is ‘bummer’ … I have no doubt that thyroid levels and basil rate interact. In fact I have proven it with my Libre.
I take an active form of thyroid medication called T3 which gets absorbed and used much faster than the typical form of T4 meds that most hypothyroid people use. Therefore I need it several times a day to keep thyroid levels in check.
One example was at night (where I can normally keep my blood sugar levels ‘in range’ I woke at about 1 am and my BS was trending up reasonably quickly … I had some t3 thyroid med then and in the morning when I checked my Libre I saw that about 1/2 an hour after I had the t3 my basil rate had returned to flat. I’ve seen it many times. There is definitely an interaction!

Re low carbs. Did that for two (and a half) reasons 1. Inflammation reduction 2. I used to exercise a lot and my bs was pretty easy to control . Now it is much harder. Low carb makes it easier to control and 2.5 it helps keep the weight under control while I sort all this out.

Re docs generally and Hashimotos. Firstly are you very hypothyroid symptomatic? Generally most of them have NO idea. General docs have tried prescribing me anything from statin (for Chloresterol (thyroid cab cause that) , lyrica for what they guessed was nerve pain from dt1 (thyroid can cause musculoskeletal pain), antidepressants (thyroid can cause that), really strong painkillers (again for thyroid pain) and all have quoted me that ‘your numbers (thyroid) look ok’ (some got angry for me questioning it). Even some endos have been bad. I did some self medication with thyroid meds and for a period of 4 days all the symptoms left me . Ie all my symptoms are all thyroid related.

Here’s a few learnings in my thyroid journey so far;

  1. You can’t treat just by the numbers with thyroid … symptons are important
  2. Hashimotos patients will likely have other complicating factors (ie gut health, inflammation , nutrient deficiency etc) that they will have to deal with these as an underlying cause (is it’s not just thyroid meds)
  3. If you’ve had low levels of thyroid for a while you will likely have an adrenal fatigue issue (which can complicate thyroid conversion )
  4. Food and drink quality is a real thing (ie organic foods, filtered water etc) (I used to be a complete non-believer)
  5. The body operates as a system and many systems interact with each other (eg thyroid can effect blood sugar) ie the solution needs to consider the body system
  6. There seems to be 4 types of medical practitioners;
    A. The classic work by the numbers, drug and move on to the next patient type
    B. The docs who believe the symptoms but don’t know what drugs to treat you with
    C. Naturopaths (who to me do have validity but sometimes can be hit and miss in their techniques and understanding of thyroid)
    D. Functional medicine docs who are trained doctors but use supplementation and nutrients as their first go-to solution.(although they may use drugs if it is essential). They also tend to take a more system wide approach.

My preference is a lateral thinking D.

Re blood tests. Do you know which ones to get and how the thyroid system works ?

Sorry for the super long reply (I can’t remember if I missed anything) but that should be enough for now :yum:. Hope that’s helpful.

Regards
Martin


#140

Hi again Martin, very sorry for not getting back to you sooner. I was able to see my new Endo and liked her a lot. She basically said all the things I’ve researched and at least a few of the things you’ve brought up before I could speak which was very refreshing. She’s really up on the current information.

in regards to carbs, that is great that it’s working for you. I’m seeing a nutritionalist shortly to head down that path for all the same reasons as yourself.

Re tests, my endo is first checking out my adrenals, something I’ve suspected for awhile, which is great. I’ve quit caffeine about six months ago to see if it would impact the blood sugar spikes after rising but to no avail. It will be good to eliminate this as I also suffer from pretty constant fatigue at this point regardless of my thyroid labs. After the adrenal check the next step will be to recheck the thyroid labs and potentially add some additional T3 to see if that makes a difference.

Man, your paragraph that begins with “Re docs” says it all. I’ve had weird anomalies with cholesterol myself. Rising and falling despite no diet or exercise changes. I’ve been on nearly every antidepressant they can push and none did anything except introduce more side effects.
Debilitating fatigue for years now. Constant muscle weakness. Horrific memory problems (to the point friends measure how long, in minutes or days, it takes me to recall something they know I know), brain fog, low libido, hair greying prematurely, diffuse hair thinning though not falling out so much, some mild body aches but not terrible, you name it.

My overall game plan is to continue to learn and research (which your posts have given me a ton of avenues to explore), check adrenals, move to a cleaner lower carb diet, test for food allergies and other possible gut health and digestive issues, check for vitamin deficiencies (nothing more than “lowish” vitamin d at this point which is being addressed) and see where that gets me.

Thus far my docs have only tested for TSH, T4, and T3 very early on years ago. I’m going to push for the Hashimoto antibody test and T3 next round to check if the conversion from T4 to T3 is actually playing out as it should. I’ve found sources for research to look into the rest.

Again man, couldn’t be more thankful for your insight. You’ve given me a lot of information to think about and reinforced a lot of things I’ve suspected. I wish had something to return the favor but if I come across someone suffering from similar things after I get sorted out I will be sure to offer that person the same insight you’ve offered me.

Best to you!

  • Mike