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

[Sara Grice]

Hi it's me again with another bout of chronic oferthinking about my diabetes (type 1)
I know that there isn't really a solution anyone can give me..I just feel like I'm very close to burnout if I'm honest

I made a post a few days ago about the overpatch I use and how I think it's causing compression lows. I got 3 different types of patches from amazon I have since removed the patch I had and tried another one of the patches I normaly use and I thought that things where getting better but then started to notice another weird thing now. I can lay down on the non sensor arm without it going down except it just kinda...wasn't moving at all except when i ate something?

like ok I get that sinse I'm not moving about so it's not gonna change a huge amount but It was like staying at the same value and then occasionally losing signal for like 2 minutes then come back sometimes higher than before. How when I ate food I see the effects but it's like it can only read to a curtain point then anything below that it just doesn't read or the system is scrubbing it as it thinks it's an error or something? Like I don't seam to beable to get a reading below 9.5 mmol.

The kicker comes to when I start testing my finger readings to compare because I always have considered that the more accurate way. I got a reading that was quite significantly lower than my sensor was telling me which freaked ne out a bit so I tested again using the same site (I just squeezed down on my finger to get more blood) and then I got a reading that was slightly higher than my sensor reading. And now I'm noticing that if I test the blood from my finger twice I get different readings.

So now I think I'm stuck with a sensor that stops showing lower values (sort of the most important time I need it to work, oh and btw i didnt notice this before i chnaged the patch, only after) and the supposed more accurate method of finger pricking is making me even more confused as to what my levels actually are

I'm just so frustrated. I just want to know what my levels are is that so much to ask.
I left the cap off my blood testing trips for about half an hour about 4 days ago..have the whole batch been ruined? What do i even trust anymore as I realy suck at "listening to my body" in terms of my glucose levels cos of my high levels of anxiety and I get hunger pangs alot since I was diagnosed and altered my diet..I also am near sighted but take of my glasses at home to relax so everything is blurry alot of the time.

Tldr: I may be overthinking but I feel as though I can't trust these sensors or even my blood readings so I realt struggling with burnout and feel hopeless

 

[Sara Grice]

Oh I use libre 2 +, forgot to mention.
Also to add to the venting my fingers are starting to hurt cos of all the sensor issues causing me to have to check it alot, so that's fun

I'm just so sick of the trial and error I seam to be stuck in so I can feel confident in managing my diabetes. Different patches, may have to look into different sensor bands if this keeps on. And now today I'll probably have to go to the pharmacy so buy a new blood glucose meter cos this one keeps throwing out different readings every time. Just constant "let's try this" and then that dosent work so the cycle continues

 

[Lucyr]

Sounds like you’re just overthinking it all. Would you be better stopping using sensors completely so you don’t have to handle this extra thinking and going to just fingerpricks? Your fingers shouldn’t hurt from fingerpricks, if they do you’re doing it wrong.

 

[Inka]

How long have you had Type 1 @Sara Grice ? Some people find the Libre just causes them stress rather than being helpful. Maybe you could take a break from it and see if that helps? Just fingerprick. Tests from different fingers or whatever will be different readings. That’s normal. The fingerpricks are to give you a good idea where you are from a snapshot of that drop of blood. That’s enough for good control and safety, so don’t worry 🙂

 

[Sara Grice]

Sounds like you’re just overthinking it all. Would you be better stopping using sensors completely so you don’t have to handle this extra thinking and going to just fingerpricks? Your fingers shouldn’t hurt from fingerpricks, if they do you’re doing it wrong.

I mean for me that's the last resort, I was diagnosed with just a routine blood test check up at my GP and didn't realy have any major symptoms that feels like I was going into a hypo ever. So I have a bad feeling I'm one of those unlucky people who don't feel hypos coming as easily. Which makes me very VERY hesitant to do what you surgest..

The 2 times I went sensor-less my mental health got so so much worse instead of better. Considering how I'm doing at the moment that's saying something

 

[Sara Grice]

How long have you had Type 1 @Sara Grice ? Some people find the Libre just causes them stress rather than being helpful. Maybe you could take a break from it and see if that helps? Just fingerprick. Tests from different fingers or whatever will be different readings. That’s normal. The fingerpricks are to give you a good idea where you are from a snapshot of that drop of blood. That’s enough for good control and safety, so don’t worry 🙂

You can see my reply to the other user for more detail but, for me that would probably be the worse possible sanario and something I'd only do as a last resort.

And should it be giving be different readings if I use the same finger? Even the same spot? (After whiping away the last drop of blood with a clean tissue ofcourse) it just doesn't seam right

 

[Sara Grice]

How long have you had Type 1 @Sara Grice ? Some people find the Libre just causes them stress rather than being helpful. Maybe you could take a break from it and see if that helps? Just fingerprick. Tests from different fingers or whatever will be different readings. That’s normal. The fingerpricks are to give you a good idea where you are from a snapshot of that drop of blood. That’s enough for good control and safety, so don’t worry 🙂

Oh forgot to say I as only diagnosed in October last year.

 

[Sara Grice]

While I know the whole just go sensor-less advice comes from a good place and I really appreciate you lovely people are so helpful and supportive. But It's kind of what scares me most out of anything (linked to my hypo anxiety I'm sure) which is why I mentioned that there won't realy be any solution I am comfortable with as its either that or just keep up this trail and error and hope something works. I just needed somewhere to vent my frustration and helplessness I guess

 

[Natalie123]

Hi Sarah, this sounds really familiar to me, it sounds a lot like you're in burnout and struggling with anxiety due to your diabetes. I go through periods like this too and it's because I'm getting overwhelmed. Have you had any emotional support since your diagnosis? I think you should speak to your diabetes team at the hospital if you have one or your GP if you don't. Tell them everything that is worrying you and show them your posts on here. Ask for some support, regular phone calls and possibly some emotional support if they can refer you. Your DSN should be able to offer you some practical and emotional support but you need to ask for it.

There's not much I can help with on the sensors. I have similar issues but have found that putting them on a day early seems to help and they start working much better after a day or two. But I know this doesn't work for you. It might be worth you trying a different type of sensor like the Dexcom if you don't get on with the Libre.

As for finger pricks, do you have a finger prick device that has adjustable depth? If not, get one. That will be a lot more comfortable for you. Prick the side of the finger, not the pads. Little finger, ring finger and middle finger are less sensitive than the index finger. There can be some variation between tests but not too much - what were the 2 values you got? I was told when I was diagnosed that you should wash your hands before testing, even residue from tissues can affect readings, to be honest I usually ignore this advice because it makes no sense (unless I know I've touched something containing sugar) but maybe there's something in it?! Try not retesting the same finger after wiping with a tissue. If you need to use that finger, give it a rinse first. How many finger pricks are you doing?

Sorry that was long! So sorry you're feeling this overwhelmed. I know how horrible it is. Please ask for some help from your diabetes team and look after yourself x

 

[Lucyr]

I was diagnosed with just a routine blood test check up at my GP and didn't realy have any major symptoms that feels like I was going into a hypo ever. So I have a bad feeling I'm one of those unlucky people who don't feel hypos coming as easily.

Do you drive? If you have a driving licence you have to report hypo unawareness and lose your licence.

It may be that a break from fingerpricks allows you to realise you have hypo symptoms you’ve just not noticed them because of always using the sensors? Either way get some medical advice on that hypo unawareness fast.

 

[Lucyr]

And should it be giving be different readings if I use the same finger? Even the same spot?

Yes a fingerprick reading will give different readings for different drops of blood. Not every drop of blood has an identical level of glucose.

 

[gail2]

Sending you lots of love and hugs. You will come though this hunnie
love gail
xxxxxx

 

[Sara Grice]

Hi Sarah, this sounds really familiar to me, it sounds a lot like you're in burnout and struggling with anxiety due to your diabetes. I go through periods like this too and it's because I'm getting overwhelmed. Have you had any emotional support since your diagnosis? I think you should speak to your diabetes team at the hospital if you have one or your GP if you don't. Tell them everything that is worrying you and show them your posts on here. Ask for some support, regular phone calls and possibly some emotional support if they can refer you. Your DSN should be able to offer you some practical and emotional support but you need to ask for it.

There's not much I can help with on the sensors. I have similar issues but have found that putting them on a day early seems to help and they start working much better after a day or two. But I know this doesn't work for you. It might be worth you trying a different type of sensor like the Dexcom if you don't get on with the Libre.

As for finger pricks, do you have a finger prick device that has adjustable depth? If not, get one. That will be a lot more comfortable for you. Prick the side of the finger, not the pads. Little finger, ring finger and middle finger are less sensitive than the index finger. There can be some variation between tests but not too much - what were the 2 values you got? I was told when I was diagnosed that you should wash your hands before testing, even residue from tissues can affect readings, to be honest I usually ignore this advice because it makes no sense (unless I know I've touched something containing sugar) but maybe there's something in it?! Try not retesting the same finger after wiping with a tissue. If you need to use that finger, give it a rinse first. How many finger pricks are you doing?

Sorry that was long! So sorry you're feeling this overwhelmed. I know how horrible it is. Please ask for some help from your diabetes team and look after yourself x

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.

 

[Sara Grice]

Do you drive? If you have a driving licence you have to report hypo unawareness and lose your licence.

It may be that a break from fingerpricks allows you to realise you have hypo symptoms you’ve just not noticed them because of always using the sensors? Either way get some medical advice on that hypo unawareness fast.

I don't drive. And sinse I've been on the sensor I haven't actually gone into hypo range....ill be honest its mainly because im scared to let myself..so I end up sort of aiming to keep things as level as possible with like...normaly a small snack or something rhat wont raise it to much about 2 hours afternoon my meal..it's kinda bad a know but it's worked so far..
when I brought this up to my diabeties team they said we don't know if you have hypo unawareness yet because we see a moment where you have had one.

So currently it's just a hunch I think there just putting down to my anxiety

 

[Natalie123]

Good to hear that you're on the waiting list and hopefully it won't be too long for you. Do you think your diabetes team could do some regular phone calls with you? When I was struggling once, the nurse called me regularly and I effectively handed most of the decision making to her for a couple of weeks and it really helped.

Just wondering, do you know where your fear of hypos has come from? Did you have a particularly bad one?

As for losing hypo awareness, this is something that usually happens to people who have lots of hypos, like more than one a day. This happened to me once, I was having 3 or 4 hypos a day, after a few months I noticed that my ability to feel the hypo coming started to decrease - I didn't lose hypo awareness in that I could tell if I was below 4 but previously I could feel if I was below 5 and that I was dropping so I knew that I was going low before it happened.

Edited to add: I do now have full hypo awareness, no need to panic!

 

[Sara Grice]

Good to hear that you're on the waiting list and hopefully it won't be too long for you. Do you think your diabetes team could do some regular phone calls with you? When I was struggling once, the nurse called me regularly and I effectively handed most of the decision making to her for a couple of weeks and it really helped.

Just wondering, do you know where your fear of hypos has come from? Did you have a particularly bad one?

As for losing hypo awareness, this is something that usually happens to people who have lots of hypos, like more than one a day. This happened to me once, I was having 3 or 4 hypos a day, after a few months I noticed that my ability to feel the hypo coming started to decrease - I didn't lose hypo awareness in that I could tell if I was below 4 but previously I could feel if I was below 5 and that I was dropping so I knew that I was going low before it happened.

Edited to add: I do now have full hypo awareness, no need to panic!

As for where it comes from....i dont know

mainly just I know how life threatening they are and it scares me. I think it also comes from the fact I haven't actually had one yet so it's the unknown I guess. And I am definitely not brave enough to induce a hypo on my own and then treat it to see what its like someone once serguested to me on reddit lol

Its weird bit before I was diagnosed I was mainly just getting the extra thirst and urinating systoms and have never felt like I was going to pass out or anything, so the diagnosis toon me by shock...but it's partly why I suspect I may not have good awareness

The way my local diabties team works is they are located at the local hospital, and because they also have to offer support to all the wards in the hospital they are very busy. So they don't do face to face apart from the frist time. You have to leave a message and wait for then to get back to you which could be up to 48 hours. And they have flat out told me they don't like regular phone calls to ask questions that aren't to do with some specific problem with their treatment (like the insulin amount needs changing) and they genraly treat someone who maybe need a bit more advice and support as nuisances. Also they don't really help with sensor issues as they tell me to call abbott. Unless you have a specific major problems to tell them about they aren't very helpful

 

[Thebearcametoo]

You’re doing really well even though it doesn’t feel like it. You’re managing your levels and your diabetes is under control. That’s the win.

It’s common to have anxiety around the numbers. Unless you’re hypo try to see the numbers as a guide rather than something fixed. Sensors will be 10-15 minutes behind finger prick readings. Finger prick readings can vary 5-10% even from the same site. What you want to look for are trends. Like you’ve seen you can have a small snack with minimal rise. Look at the graphs over 24 hours or so rather than the numbers minute to minute and keep faith that you’re doing well.

I know your reservations about the Dexcom but what about trying one alongside the libre just for one sensor and see what you think. If it has fewer problems, stays on and doesn’t have compression lows then it might be worth the shorter change time. You have nothing to lose from trying it. (BTW with calibration - you only do it if you are level not if rising or falling and only once or twice, you don’t keep doing it.)

 

[Natalie123]

Its weird bit before I was diagnosed I was mainly just getting the extra thirst and urinating systoms and have never felt like I was going to pass out or anything, so the diagnosis toon me by shock...but it's partly why I suspect I may not have good awareness

Ah, I see. I think you've got confused between hypos and highs, sorry if I'm wrong.

Your symptoms at diagnosis were what you would expect for someone with high blood sugars. You wouldn't expect to have hypo symptoms like passing out at this stage. If you hadn't been diagnosed, your sugar levels would have continued rising and you would have started to lose weight, become very tired and eventually go into DKA (diabetic keto acidosis) which you didn't because you had a blood test and started treating it.

Now that you have started insulin, you are at risk of having hypos, these are due to low blood sugar (the opposite of what you had at diagnosis). You are likely to feel shaky, sweaty and a bit light headed if your levels drop below 4. At that point you need to take some fast acting glucose like dextrose tablets or whatever you've been told to use. If you don't treat the hypo then you could pass out but that is highly unlikely because you will feel unwell before you get that bad. I have been type 1 for 22 years and have never passed out despite having regular hypos.

I wouldn't cause a hypo purposely, that's not really sensible, what you are doing by having a snack is very sensible and the best way to avoid them. I'm sure you will have hypo awareness, don't worry about that. You will know if it happens, just confirm with a blood sugar check, take some glucose and sit down until you feel better. If you are with someone, let them know so that they can look out for you if you're worried.

 

[Natalie123]

The way my local diabties team works is they are located at the local hospital, and because they also have to offer support to all the wards in the hospital they are very busy. So they don't do face to face apart from the frist time. You have to leave a message and wait for then to get back to you which could be up to 48 hours. And they have flat out told me they don't like regular phone calls to ask questions that aren't to do with some specific problem with their treatment (like the insulin amount needs changing) and they genraly treat someone who maybe need a bit more advice and support as nuisances. Also they don't really help with sensor issues as they tell me to call abbott. Unless you have a specific major problems to tell them about they aren't very helpful

Just wanted to say that this makes me angry on your behalf. You may want to look at changing hospitals or making a complaint. One face to face appointment after diagnosis and then being told not to call them for support is not right. Anxiety after diagnosis is common and needs to be treated seriously. Ignoring someone or making them feel like a nuisance is not helpful and will just result in poor mental health. I know they are stretched but this doesn't seem right to me. We have the same telephone message system as you but I have never been made to feel like a nuisance and I do talk to them about my mental health struggles because it is relevant to my diabetes (I am AuDHD - autistic and ADHD, I have anxiety and PTSD and can get really panicky, obsessive and scared of my diabetes at times) and they have been supportive.

 

[Sara Grice]

Ah, I see. I think you've got confused between hypos and highs, sorry if I'm wrong.

Your symptoms at diagnosis were what you would expect for someone with high blood sugars. You wouldn't expect to have hypo symptoms like passing out at this stage. If you hadn't been diagnosed, your sugar levels would have continued rising and you would have started to lose weight, become very tired and eventually go into DKA (diabetic keto acidosis) which you didn't because you had a blood test and started treating it.

Now that you have started insulin, you are at risk of having hypos, these are due to low blood sugar (the opposite of what you had at diagnosis). You are likely to feel shaky, sweaty and a bit light headed if your levels drop below 4. At that point you need to take some fast acting glucose like dextrose tablets or whatever you've been told to use. If you don't treat the hypo then you could pass out but that is highly unlikely because you will feel unwell before you get that bad. I have been type 1 for 22 years and have never passed out despite having regular hypos.

I wouldn't cause a hypo purposely, that's not really sensible, what you are doing by having a snack is very sensible and the best way to avoid them. I'm sure you will have hypo awareness, don't worry about that. You will know if it happens, just confirm with a blood sugar check, take some glucose and sit down until you feel better. If you are with someone, let them know so that they can look out for you if you're worried.

Ohhhh you know what makes alot sense, if I wasn't having insulin before i was diagnosed it kinda makes sense that I never had one back then. I just kinda assumed that it could still happen especially is quite a bit of exercise was involved.

Yeah I was normally a very introverted person but thus diagnosis has definitely made me wish I didn't live alone. But sadly I do