Struggling to find any trust in anything (kinda another vent post im sorry sorry)

[beating_my_betes]

Yeah I have health based anxiety, and am on the waiting list to get help for it. I am currently on trazodome for anxiety and am open to trying other things, I just want to try them with therapy instead of before, because my triggers are around my sensor and my diabeties I need extra help in managing when things go wrong.

Unfortunately it's just left me here struggling until get to the front of the waiting list

Glad yoou're getting extra help. I'm also medicated or anxiety, although health is not one of my triggers.

 

[Woodywoodpecker]

Hi Sara I have been where you are at this point. Was absolutely terrified off having a hypo, and very fixated with Libre numbers, suffer with anxiety as well. Alarm would go off I would take glucose pills, but Libre was going down and down into red, by this time I was panicking. My hospital been good, I had to go every Monday for 6 weeks to learn to manage it. On one hospital visit just got into waiting room when alarm went off, took my glucose pills. Then nice male nurse had me getting weighed, told him I was terrified when alarm went off, he said why you have taken your hypo treatment, I said yes but it keeps going down. He explained that it lags behind finger prick, that helped me out a lot. I still don’t like going low and have my alarm at 5 which has also helped. It really knocked my confidence getting out and about, but slowly getting my life back one day at a time. I’ve had it a year now, so it really is early days for you. Im sure given time you will get there just like me

 

[Sara Grice]

Hi Sara I have been where you are at this point. Was absolutely terrified off having a hypo, and very fixated with Libre numbers, suffer with anxiety as well. Alarm would go off I would take glucose pills, but Libre was going down and down into red, by this time I was panicking. My hospital been good, I had to go every Monday for 6 weeks to learn to manage it. On one hospital visit just got into waiting room when alarm went off, took my glucose pills. Then nice male nurse had me getting weighed, told him I was terrified when alarm went off, he said why you have taken your hypo treatment, I said yes but it keeps going down. He explained that it lags behind finger prick, that helped me out a lot. I still don’t like going low and have my alarm at 5 which has also helped. It really knocked my confidence getting out and about, but slowly getting my life back one day at a time. I’ve had it a year now, so it really is early days for you. Im sure given time you will get there just like me

Can I ask what sensor you use?.
My plan is tomorrow to try getting into contact with the diabeties team again and just explain to them I'm having a rough time, see what they say.
I'm trying to get to a let myself relax but...it's hard when I have that niggle in the back of my mind that the sensor isn't working and I'm atculy reading lower than it says...I just wish I knew a away to get that trust back...or fix my brain to not be so irrational.

 

[Woodywoodpecker]

Can I ask what sensor you use?.
My plan is tomorrow to try getting into contact with the diabeties team again and just explain to them I'm having a rough time, see what they say.
I'm trying to get to a let myself relax but...it's hard when I have that niggle in the back of my mind that the sensor isn't working and I'm atculy reading lower than it says...I just wish I knew an away to get that trust back...or fix my brain to not be so irrational.

Im still on Libre 2, but will be changing to 2+ shortly. I find everything runs smoothly for a while, then it all turns to s**t. I find im still looking at Libre app too much, but think if it gives me peace off mind why not. I find in the morning I have to have more insulin or I will spike, but about an hour and a half later have to have a snack , especially when at work. Are you in the honeymoon phase

 

[Sara Grice]

Like...I don't understand, al I did was lay down for 15 minutes while waiting for my food to cook and the sensor readings started going up from 10.3 to 11.5. And just now when I tested my finger it was at 9.0....

Now that I've sat up again it's going back down to 10.9

Am I going crazy or should I remove this sensor tomorrow morning...urgh

 

[Woodywoodpecker]

Like...I don't understand, al I did was lay down for 15 minutes while waiting for my food to cook and the sensor readings started going up from 10.3 to 11.5. And just now when I tested my finger it was at 9.0....

Now that I've sat up again it's going back down to 10.9

Am I going crazy or should I remove this sensor tomorrow morning...urgh

I personally would stick with it, but that’s just me it’s totally your decision. I find when I get up and move about it can go up, especially in the morning

 

[SB2015]

Hi Sara

Your anxiety is perfectly understandable. You are on a steep learning curve and there is a lot to get your head round.

I remember the pressure that I felt at the start. We had no sensors at that time so I was dependent on finger pricks pre meal. I saw it as a motorway I was on with the central reservation as the hypos and the hard shoulder as hypers. I thought that I could get my levels perfect but that is impossible. It takes time to settle into this.

The sensors give us much more information of what is going on between meals, and this can be a benefit but also a pressure. There is no such thing as ‘looking at the data too much’. It is important to find out what helps you.

There is a time lag between the SG and BG, and also even our finger pricks will vary on different fingers and also on the same one at any moment. It is just a snap shot at that point. Nothing wrong with using it to check it for a guide to where your levels are and the direction of travel of your levels. The data can also show you patterns.

Your confidence will grow as you see what is happening on a day to day basis. It is understandable to be afraid of hypos, but they are a common occurrence for all Type 1s and the sensor alarm will help you to head off these. If you have one you will feel weird in some way and treat it with your choice of glucose. Like others mine are jelly Babies. The hardest part is waiting for 15 min after treating a hypo to wait for levels to rise again. I will always use finger pricks at this time, as that avoids the sensor time lag. I find it useful to have something I do during the 15 min. My choice is a few sudokus (although my hypo brain slows me down in solving them!!)

You are doing brilliantly in that you are managing your insulin and monitoring your levels. I am pleased that you are going to talk to your team. You won’t be the first to find it all causes anxiety. For some a sensor break is a solution. Like you I would find that worse.

You will find what works for you. Tap into the support available on here. Try out things that might work for you, and use the support from your team.

 

[SB2015]

Like...I don't understand, al I did was lay down for 15 minutes while waiting for my food to cook and the sensor readings started going up from 10.3 to 11.5. And just now when I tested my finger it was at 9.0....

Now that I've sat up again it's going back down to 10.9

Am I going crazy or should I remove this sensor tomorrow morning...urgh

You are not going crazy and the sensor seems to be fine. There is some variation all the time, as a different bit of fluid goes by the sensor. Those are small variations and within the tolerances.

It might to help to focus on the arrows associated with the readings. Are they changing? I can’t remember what the Libre arrows are now. Mine has arrows up or down with either 1, w or 3 to show the speed of change. Level or one arrow is fine for me I start to take action on two, and quick action on 3 arrows.

 

[Woodywoodpecker]

Hi Sara

Your anxiety is perfectly understandable. You are on a steep learning curve and there is a lot to get your head round.

I remember the pressure that I felt at the start. We had no sensors at that time so I was dependent on finger pricks pre meal. I saw it as a motorway I was on with the central reservation as the hypos and the hard shoulder as hypers. I thought that I could get my levels perfect but that is impossible. It takes time to settle into this.

The sensors give us much more information of what is going on between meals, and this can be a benefit but also a pressure. There is no such thing as ‘looking at the data too much’. It is important to find out what helps you.

There is a time lag between the SG and BG, and also even our finger pricks will vary on different fingers and also on the same one at any moment. It is just a snap shot at that point. Nothing wrong with using it to check it for a guide to where your levels are and the direction of travel of your levels. The data can also show you patterns.

Your confidence will grow as you see what is happening on a day to day basis. It is understandable to be afraid of hypos, but they are a common occurrence for all Type 1s and the sensor alarm will help you to head off these. If you have one you will feel weird in some way and treat it with your choice of glucose. Like others mine are jelly Babies. The hardest part is waiting for 15 min after treating a hypo to wait for levels to rise again. I will always use finger pricks at this time, as that avoids the sensor time lag. I find it useful to have something I do during the 15 min. My choice is a few sudokus (although my hypo brain slows me down in solving them!!)

You are doing brilliantly in that you are managing your insulin and monitoring your levels. I am pleased that you are going to talk to your team. You won’t be the first to find it all causes anxiety. For some a sensor break is a solution. Like you I would find that worse.

You will find what works for you. Tap into the support available on here. Try out things that might work for you, and use the support from your team.

You are not going crazy and the sensor seems to be fine. There is some variation all the time, as a different bit of fluid goes by the sensor. Those are small variations and within the tolerances.

It might to help to focus on the arrows associated with the readings. Are they changing? I can’t remember what the Libre arrows are now. Mine has arrows up or down with either 1, w or 3 to show the speed of change. Level or one arrow is fine for me I start to take action on two, and quick action on 3 arrows.

Hi Sara

Your anxiety is perfectly understandable. You are on a steep learning curve and there is a lot to get your head round.

I remember the pressure that I felt at the start. We had no sensors at that time so I was dependent on finger pricks pre meal. I saw it as a motorway I was on with the central reservation as the hypos and the hard shoulder as hypers. I thought that I could get my levels perfect but that is impossible. It takes time to settle into this.

The sensors give us much more information of what is going on between meals, and this can be a benefit but also a pressure. There is no such thing as ‘looking at the data too much’. It is important to find out what helps you.

There is a time lag between the SG and BG, and also even our finger pricks will vary on different fingers and also on the same one at any moment. It is just a snap shot at that point. Nothing wrong with using it to check it for a guide to where your levels are and the direction of travel of your levels. The data can also show you patterns.

Your confidence will grow as you see what is happening on a day to day basis. It is understandable to be afraid of hypos, but they are a common occurrence for all Type 1s and the sensor alarm will help you to head off these. If you have one you will feel weird in some way and treat it with your choice of glucose. Like others mine are jelly Babies. The hardest part is waiting for 15 min after treating a hypo to wait for levels to rise again. I will always use finger pricks at this time, as that avoids the sensor time lag. I find it useful to have something I do during the 15 min. My choice is a few sudokus (although my hypo brain slows me down in solving them!!)

You are doing brilliantly in that you are managing your insulin and monitoring your levels. I am pleased that you are going to talk to your team. You won’t be the first to find it all causes anxiety. For some a sensor break is a solution. Like you I would find that worse.

You will find what works for you. Tap into the support available on here. Try out things that might work for you, and use the support from your team.

It’s the 15 minutes a don’t like, like you I play a game on iPad to pass the time, try keep my mind occupied

 

[Sara Grice]

I mean I

You are not going crazy and the sensor seems to be fine. There is some variation all the time, as a different bit of fluid goes by the sensor. Those are small variations and within the tolerances.

It might to help to focus on the arrows associated with the readings. Are they changing? I can’t remember what the Libre arrows are now. Mine has arrows up or down with either 1, w or 3 to show the speed of change. Level or one arrow is fine for me I start to take action on two, and quick action on 3 arrows.

So it's normal for how your body is positioned to effect the readings? I've had a few that do the opposite to where when I lay down it started going sharply down like a compression low (I want laying on the sensor side) that would start to go back up again one I sat or stood up. This time it starts going up instead. If that's normal...how was these things ever approved for market..espeicly if its making the reading higher like in my case..that seams unsafe..do they expect people to sit bolt upright or stand all day??. I mean abbot seams unaware of this issue because I rang them when I had the weird not-compression low and they said it shouldn't be effected at all by body position
I can't help but feel it's user error but I don't know what I'm doing wrong...hense all the trial and error that I'm getting sick off

 

[SB2015]

I mean I

So it's normal for how your body is positioned to effect the readings? I've had a few that do the opposite to where when I lay down it started going sharply down like a compression low (I want laying on the sensor side) that would start to go back up again one I sat or stood up. This time it starts going up instead. If that's normal...how was these things ever approved for market..espeicly if its making the reading higher like in my case..that seams unsafe..do they expect people to sit bolt upright or stand all day??. I mean abbot seams unaware of this issue because I rang them when I had the weird not-compression low and they said it shouldn't be effected at all by body position
I can't help but feel it's user error but I don't know what I'm doing wrong...hense all the trial and error that I'm getting sick off

My sensor is a different manufacturer, but I confidently let my pump use the sensor readings to decide on my basal insulin every five minutes (known as looping). I just let it get on with it and just get involved before a meal, or if I feel hypo.

I suspect that the variation is nothing to do with your body position, just variation in glucose levels that are going on all the time. The only issue is compression lows which are very clear deep descent and a rise once it is released. (These can lead to an alarm on my pump to wake me in the night if I don’t move after a while but I am a wriggler so that doesn’t happen now).

My pump has checks in place to deal with highs and lows and alerts and alarms like the Libre. If it is I doubt it asks me for finger prick to help it make its decisions. The sensors are sufficiently reliable to make the looping very effective most of the time. Even if we did consecutive finger pricks throughout an hour (though I wouldn’t recommend it) there would be variations.

 

[rebrascora]

Readings of 9 10 and 11 are all within the error range for the instruments you are using and such minor discrepancies are not worth worrying about. It is important to understand that none of these devices are accurate to the decimal place the readings quote or even necessarily the whole number. So your 9 on the finger prick could actually be somewhere between 7.5 and 10.5 and be perfectly acceptable. Libre often reads a bit higher than actual finger prick above range and for me certainly, lower below range, so your Libre reading being a bit higher than the finger prick is about what I would expect at that level and again it is still within the error margin at 10 or even 11. And BG levels do fluctuate all the time in response to any number of factors... at least 42 known factors.

I joke that my liver has a tilt switch on it as my level rise sharply when I get out of bed on a morning and often drop when I get into bed and go to sleep and that is my liver releasing glucose not by Libre getting it wrong.

Were your levels already rising slightly before you laid down as that may be why you saw a slight increase on this occasion but I suspect that 10 min lie down wasn't enough to make any difference as remember there is a delay in Libre adjusting to circumstances like that of about 30 mins. Had you prebolused for your evening meal before you lay down. Perhaps the general trend was upwards and then your bolus started to kick in to bring your levels down.

I think your expectation of these devices is too high and your anxiety is causing you to read into the results you see and make connections with events which are probably not responsible for what you are seeing. I would certainly not replace that sensor as to me it isn't malfunctioning, you are just trying to account for every slight variation and the reality is that BG varies and within 1-2 whole mmols the kit we use is good enough to provide what we need. At the lower end of the range in the 3s and 4s, the discrepancy will likely be less as it has to be within 15% and 15% of 4 is a lot less than 15% of 10, so the lower the number the less discrepancy there will be between finger prick and sensor.

 

[Coo]

Thank you for the lovely reply, gues I definitely know I need support, unfortunately my local diabeties team only has that option for kids not adults sadly, so I had to go through my GP, I referred to their mental health organisation that does talking therapies back in feb, and I got put on the waiting list but haven't heard anything back yet as the list for the therapist they have that specialises in helping people deal with long term illnesses had a longer wait than the others. But hopeful soon.

I was offered to move to dexcom by my diabeties team but I dunno..I'll probably end up trying it but I weighed up the pros and cons
- I don't like the 10 day lifespan, I get nervous when I put on a new sensor cos I don't know if it gonna work or not so having to do thar more often sounds awful.
- the self calibration on paper seams nice, I don't like the element of human error it could introduce
-dosent seam equal in terms of getting a faulty sensor than libre. So not generaly more reliable

But thanks for the advice about finger pricking, as I do tend to use the pads and wasn't told anything different.

Hi, I'm new on here but wanted to tell you that the support on here seems amazing and the advice is accurate and kind. I have been using a Libre 2 plus sensor for around 2 years now and have mostly managed to smooth out all the "wrinkles" I don't know if you know that you can set a low blood sugar alarm on the gizmo (sorry, if you do already) I've got mine set at 4.3 and find the audible alarm very reassuring. In the meantime I send you some positivity and a wee cyber hug.