Poor mental health

[CathyFP]

My consultant says I just haven’t experienced a real hypo yet because I always take glucose as soon as I go below 3.7 on my Libre. I am learning to check these lows with my BG monitor before treating them but generally my blood test is a couple of points lower than Libre so I do need to treat.

 

[CathyFP]

When I go low I get no symptoms or warning at all.

@CathyFP None at all? Not even if you were, say, 2.9? That isn’t good if you’re recently diagnosed. Are you dipping low a lot over 24hrs? Hypo awareness is usually strong for the first years and only starts to blunt after many years of Type 1. What’s your Low alarm set at? If you set it at 5.6, and aim to stay above 5 (ie have a glucose tablet or half or whatever if you’re 4.6 to push you up above 5) and keep that up for some weeks, your hypo awareness should improve.

Remember that for decades and decades we had no CGMs. We fingerpricked and had no alarms, only our own unawareness. I went through 3 pregnancies with no CGM and set an alarm at 2am every night to make sure I wasn’t going too low early in pregnancy (early pregnancy causes bad hypos). In the earlier decades there weren’t even glucose meters just urine tests.

I’m not going low that much. Mainly it’s if I leave it too long between meals or do too much walking , which I am now trying not to do. I did go low (3.6) at 5.00 this morning which is very unusual as I am normally fine (above 6) all night till about 10.00 in the morning.

My diabetes nurse actually told me to lower my Libre alarm from 3.9 to 3.5 so I now feel like I’m getting a lot of conflicting advice.

 

[SB2015]

I have not used a Libre with alarms, but on my own sensor, I have both a warning before low and alert on low. By having an alarms set a bit higher as a warning it enables you to head off hypos, and so have fewer interruptions to what we want to do.

Your nurse may be focusing on a level at which to treat hypos, but that is not the same as living with Diabetes. The interruption from an alert before you go to low will enable you to eat something and to continue what you are doing. A hypo will require you to treat and stop what you are doing. I still get the odd one because I am just too busy or engrossed in what I am doing and just nod not want to stop - Not a good plan!

I think the best advice is to find what works best for you. Take the various suggestions from your nurse and people on here. Then make it work for you on a day to day basis (accepting that things with D never stay quite the same).

 

[Inka]

I’m not going low that much. Mainly it’s if I leave it too long between meals or do too much walking , which I am now trying not to do. I did go low (3.6) at 5.00 this morning which is very unusual as I am normally fine (above 6) all night till about 10.00 in the morning.

My diabetes nurse actually told me to lower my Libre alarm from 3.9 to 3.5 so I now feel like I’m getting a lot of conflicting advice.

The Low alarm should really be thought of as an alert - ie it alerts you to the fact that you are heading towards a hypo, so that you can ward it off. It would be a bit pointless having it alert you when you’re actually hypo. 3.5 or below is technically a hypo but people on insulin are told to treat 4 as the floor (ie anything below that is a hypo) and to maintain/regain hypo awareness then staying above 5 is best.

Was this an actual DSN that told you to set your Low alarm that or just a nurse at your GP surgery? Without hypo awareness, it’s even more important that you set your Low alarm higher.

 

[Inka]

Mainly it’s if I leave it too long between meals or do too much walking , which I am now trying not to do.

Sorry just noticed this in your post. You should be able to skip meals on a basal bolus regime and you should be able to leave long gaps between meals. You should also not have to minimise your walking. Either your insulin is too high or you need to snack/add extra carbs.

 

[CathyFP]

The Low alarm should really be thought of as an alert - ie it alerts you to the fact that you are heading towards a hypo, so that you can ward it off. It would be a bit pointless having it alert you when you’re actually hypo. 3.5 or below is technically a hypo but people on insulin are told to treat 4 as the floor (ie anything below that is a hypo) and to maintain/regain hypo awareness then staying above 5 is best.

Was this an actual DSN that told you to set your Low alarm that or just a nurse at your GP surgery? Without hypo awareness, it’s even more important that you set your Low alarm higher.

It was an actual DSN that told me to lower the alarm below 3.9 when I was discussing my anxiety/depression issues with her.

 

[CathyFP]

Mainly it’s if I leave it too long between meals or do too much walking , which I am now trying not to do.

Sorry just noticed this in your post. You should be able to skip meals on a basal bolus regime and you should be able to leave long gaps between meals. You should also not have to minimise your walking. Either your insulin is too high or you need to snack/add extra carbs.

Maybe my basal (that’s long lasting isn’t it?) Insulin is a bit too high. The DSN did suggest reducing it from 8 to 7 but I haven’t tried that yet.

I don’t really have any idea how much carbs I should be eating. I think my average per day is about 120g. I use carbs and Cals app to measure this. Are there any guidelines?

I do appreciate your help but I’m nervous about changing things. On the other hand perhaps I need to as I can’t carry on as I am

 

[Misunderstood]

You need if not have done already ask your GP to refer you to the local Mental Health Team for an assessment, this takes about 12 weeks but then you should get an assessment appointment.

 

[SB2015]

I don’t really have any idea how much carbs I should be eating. I think my average per day is about 120g. I use carbs and Cals app to measure this. Are there any guidelines

There is no ideal amount of carbs for any of us. As a T1 /T1.5 we can eat whatever we choose to. I happen to have a similar amount of carbs as you, in general, but sometimes have less and sometimes have more. That is the advantage of doing the carb counting. We can eat what we choose to and then adjust our bolus dose as necessary. Great that you have the carbs and cals app to help with the carb counting. It is not an exact science and our response will vary with the other foods we eat in a meal, but it gives us an idea of how much insulin to use for the bolus.

It is nerve wracking having to do our own adjustments to doses at the start, but worth talking to your DSN about doing this. Perhaps trying the reduction in your basal that your DSN has suggested would be worth doing. It does sound like the basal might be too high.

Also well worth asking for a referral to the counselling team. I waited far too long before asking for help, and there was a long waiting list at that time. More recently I think there is a bigger recognition of the need for help with the mental strain of managing T1 day by day.

 

[Proud to be erratic]

@CathyFP, I can't attempt to explain and certainly can't understand why any nurse involved in Diabetes would tell someone to lower their low Alarm even lower. It makes no sense and as far as I'm concerned if something makes no sense it is because it's nonsense!

As said earlier by both @Inka and @SB2015 the low setting needs to be an ALERT not an ALARM. It's a dreadful shame that Libre call this an alarm at all; Dexcom use the word Alert for what Libre call Alarms. You (we all) need that low threshold to alert the wearer that their BG has dropped to a point where they need to do something and NOT an alarm saying it's too late. So with a threshold for any CGM set at somewhere like 5.0 mmol/L or higher there is time to do whatever the user needs to do to PREVENT any potential hypo. That prevention could be eat some fast acting glucose; or it could be stop exercising and sit quietly; or a mix of both - eat a modest biscuit, cup of tea / hot chocolate and sit and relax. Monitor your CGM and see how that works - FOR YOU, because we are all different and get different responses.

The origins of my Diabetes are because my pancreas was entirely removed. This can make my BG behaviour awkward, sometimes referred to as brittle, where BG changes are extremely fast. Often I know (realise that I'm having a brittle day) and I raise my low alert to 6.5. I'm fortunate that my Dexcom allows a low alert up to 8.3; Libre limits their low threshold to 5.6 - which may be OK for most people already well on top of their BG management. But too low for me on bad days and I have always felt too low for a bit of tech used for so many different requirements.

All that said when I listen to my alerts and respond sensibly, I extremely rarely go hypo. If I hear or see a low Alert and ignore it, then not surprisingly things often go wrong. If I've gone hypo I can almost always attribute that to MY ignoring a first Alert. Invariably it's MY fault. The NHS gave me a relatively expensive but of tech and I'm grateful for that. It's purpose was to help me manage my BG sensibly and as a consequence to reduce D problems in the future.

I was astonished when on my DAFNE course in late 2022 the instructing DSN said we should all expect to go hypo and several times a week. Since I had not been hypo for over 8 months I challenged that statement and was told I must be constantly running high. I proved from my Libre graphs that I wasn't and then to add to my astonishment she said it must be because I'm T3c and so "different". That DSN was living in a different era to me! The tech, when working well, is there to help us and to benefit us and the NHS in the long term.

 

[Geniekeepcalm]

I wonder if the Dsn suggested lowering alarm level to reduce number of alarms. The video by Dr Pratik Choudary from the excellent abcd diabetes technology network could be worth watching. But it dates from days where had to scan Libre which may not apply inless using the reader.

Expert Opinions: FreeStyle Libre 2 Setting and Reacting to Alarms | The Association of British Clinical Diabetologists

abcd.care

 

[rebrascora]

Maybe the idea of setting her alarm lower is so that she can learn to recognise her hypo signs. If you haven't really experienced one or several, then how are you going to know what to look out for and at 3.5 whilst yes, you are hypo assuming Libre is not exaggerating, then that is still not a desperately low number to respond to.
I know for myself that for the first 9 months the fear of hypos, particularly nocturnal hypos, was significantly more debilitating than the hypos themselves when they happened and once I learned that my body would wake me up (this was before I got Libre) I became so much more confident about managing my diabetes in general and the fear of nocturnal hypos diminished significantly. I do wonder if there will be a generation of people who have never had to manage without alarms who will not develop that understanding of and confidence in their body, because the Libre prevents them from developing it.

I think it was @helli whose nurse suggested she deliberately instigate a hypo in a safe, controlled environment with someone else there, so that she could learn what it was like, what she felt and how effective treatment was. I think that is a really sensible suggestion. I wonder if it should deliberately be done without Libre or other CGM though because the Libre alarms will cause you to both panic and also treat before you can actually sense the signs.

I certainly have found that learning to be confident treating hypos was a big factor in managing my diabetes well. If you never experience a proper one then how can you know what your warning signs are and that may lead you to believe you have no warning signs, which is understandably scary and will cause you increased anxiety and mental health problems.

 

[Inka]

Initial hypo signs should be felt before getting to 3.5 when you have Type 1. My consultant says you should feel them in the low 4s. This sensitivity to those early signs is important because it alerts you you’re going too low. The nasty hypo signs - profuse sweating, clumsiness, faintness, etc etc - mean you’re already deep in a hypo. IMO, those are to be avoided.

@CathyFP Why did your nurse tell you to lower the alarm? Was it so you could feel a hypo or was it because they thought the alarms were contributing to your anxiety?

 

[Inka]

Maybe my basal (that’s long lasting isn’t it?) Insulin is a bit too high. The DSN did suggest reducing it from 8 to 7 but I haven’t tried that yet.

I don’t really have any idea how much carbs I should be eating. I think my average per day is about 120g. I use carbs and Cals app to measure this. Are there any guidelines?

I do appreciate your help but I’m nervous about changing things. On the other hand perhaps I need to as I can’t carry on as I am

Certainly try reducing your basal. That seems very sensible.

There’s no amount of carbs you have to eat. You’re supposed to eat your normal healthy diet and take the insulin you need to cover it. 120g carbs doesn’t seem very many. If you’re purposely limiting your carbs, that’s not going to help your ability to go for walks or your mental health. Basically, you just eat what you would have done before and take the appropriate insulin. Type 1 is nothing to do with diet, and everything to do with insulin.

So, cereal, toast, sandwiches, fruit, cereal bars, pasta, rice, potatoes, yoghurt, ice cream, an occasional dessert/piece of cake, just like you probably ate before. You don’t aim for a daily total. You just eat normally. You’re only counting the carbs in order to calculate your bolus insulin not to limit them @CathyFP

 

[Standup]

My nurse also told me to lower my alarm when I mentioned it was going off a lot at night. It was very early days so I didn't question it at the time so not sure what the reasoning was behind it. The hospital had set it at 4.5 and she said lower it to 4.2 or 4. All that seemed to do was give me less time to react to the situation and over do the cola and jelly babies so its going off high an hour or two later.

I followed Roland's advice and set it much higher and can now have a much more gentle response of a biscuit or two. That along with reducing my basal has improved things. I am probably more in the 7-9 range though than the 6-7 but practice...

I'd also agree with maybe not being so hard on yourself on 'time in range'. I was getting 90-92% but there was so much micromanaging especially as type 3 seems over responsive sometimes. I'm now aiming for 80% and feeling much more relaxed. The consultant told me to aim for 70% and while I didn't agree with all he said I'd hope that's based on his many years of experience. Still not relaxed but less anxious than I was. Going without the tech seems a step too far but something to think about when I'm a bit more than 4 months in.

I also aim to eat normally as I have to try keep weight on after surgery but the insulin is easier to manage with lower amounts of carbs or at least I get it wrong more often on a 90g carb meal than a 40.

We can't give medical advice but I would say to Cathy try changing small things and if it doesn't work or you're uncomfortable change it back. Take a walk of 2-3 minutes and once you know how that feels take a longer walk. Just remember your jelly babies 🙂

 

[Proud to be erratic]

I wonder if the Dsn suggested lowering alarm level to reduce number of alarms.

That's a possible explanation @Geniekeepcalm, but it doesn't make sense to me. I can see that reducing the number of alarms could be less stressful for someone - but the price or consequence is increasing the inevitablility of going hypo AND far worse going deeply hypo. How stupid is that! Surely such a DSN should be focused on helping a patient move away from getting close to hypo with suitable advice and guidance about better management of insulin on board in relation to food eaten and exercise taken.

I know this is a complex puzzle to understand when we are newly diagnosed and it certainly was frightening at first. But to set someone up for more hypos .... it makes no sense (ie nonsense).

The video by Dr Pratik Choudary from the excellent abcd diabetes technology network could be worth watching. But it dates from days where had to scan Libre which may not apply inless using the reader.

Expert Opinions: FreeStyle Libre 2 Setting and Reacting to Alarms | The Association of British Clinical Diabetologists

abcd.care

I watched the first 5 minutes of Dr Choudary's video and need to look again; I picked a bad time when there was a lot going on around me.

But from those 5 minutes I felt that if I had been in my first months as a new insulin dependent diabetic AND when CGMs were flash, not continuous, I might well have thought Dr Choudary's advice made sense. Today, it does not make sense. Even if today we were still into flash technology, and continuous readings still didn't exist, knowing what I now know about BG management it still is promoting or justifying the user to set a threshold that will inevitably lead to hypo territory. Where is the sense in that?

I don't know enough about when Endocrinology recognised that time spent very low was more damaging than time spent at the upper end of the nominal 4-10 range. But that has certainly been recognised for at least a decade. So whenever Dr Choudary was justifying his proposal I think he was already out of date and in my opinion promoting nonsense. Sorry if that seems harsh, but I think Dr Choudary had not experienced life as an insulin dependent diabetic; if he had I would be amazed. What do we do most every day, every minute - try to avoid going hypo.

 

[Geniekeepcalm]

I do agree @Proud to be erratic that the focus should be on avoiding getting close to hypo range. The video I mentioned does address this later on ie having 1 or 2 jelly babies at certain levels, and it is this taking action to avoid which has been made easier y having a Cgm rather than needing to scan.Most Diabetes health professionals of course haven't lived with Diabetes, but Professor Choudary has been heavily involved in working with patients and helping them regain hypo awareness. If @CathyFP doesn't feel low blood sugars it is of course natural for her to be concerned. But knowing that a small amount of fast acting glucose will help avoid hypos, coupled with maybe reducing basal as Dsn advised might be of use. Maybe @CathyFP could ask Dsn why she suggested lowering alarms.
When I was using Libre I altered low alarms according to what I was doing , and scanned very frequently which was demanding but reassuring

 

[Proud to be erratic]

I do agree @Proud to be erratic that the focus should be on avoiding getting close to hypo range. The video I mentioned does address this later on ie having 1 or 2 jelly babies at certain levels, and it is this taking action to avoid which has been made easier y having a Cgm rather than needing to scan.Most Diabetes health professionals of course haven't lived with Diabetes, but Professor Choudary has been heavily involved in working with patients and helping them regain hypo awareness. If @CathyFP doesn't feel low blood sugars it is of course natural for her to be concerned. But knowing that a small amount of fast acting glucose will help avoid hypos, coupled with maybe reducing basal as Dsn advised might be of use. Maybe @CathyFP could ask Dsn why she suggested lowering alarms.
When I was using Libre I altered low alarms according to what I was doing , and scanned very frequently which was demanding but reassuring

Thanks. I too, when I used Libre 2 scanned very frequently and juggled with alarms a bit. My high alarms I frequently moved even higher to reduce the stress (distress!) of being told frequently that I was high - which I already knew and didn't know enough about how to sort it out [I'd been badly indoctrinated into avoiding corrections because of the risk of stacking insulin - it was a comment from this forum that guided me into correcting without stacking onto existing and dissipating meal bolus. If only my then DSN had explained that!].

I infrequently adjusted my low alarm, for the most part I screamed to myself why was it stupidly capped at 5.6! Why didn't Abbott know this was a stupid arbitrary too low cap?

I still haven't made time to see the full video; busy with preparation for my daughter's forthcoming house move. But I will watch it fully soon.

 

[CathyFP]

@CathyFP, I can't attempt to explain and certainly can't understand why any nurse involved in Diabetes would tell someone to lower their low Alarm even lower. It makes no sense and as far as I'm concerned if something makes no sense it is because it's nonsense!

As said earlier by both @Inka and @SB2015 the low setting needs to be an ALERT not an ALARM. It's a dreadful shame that Libre call this an alarm at all; Dexcom use the word Alert for what Libre call Alarms. You (we all) need that low threshold to alert the wearer that their BG has dropped to a point where they need to do something and NOT an alarm saying it's too late. So with a threshold for any CGM set at somewhere like 5.0 mmol/L or higher there is time to do whatever the user needs to do to PREVENT any potential hypo. That prevention could be eat some fast acting glucose; or it could be stop exercising and sit quietly; or a mix of both - eat a modest biscuit, cup of tea / hot chocolate and sit and relax. Monitor your CGM and see how that works - FOR YOU, because we are all different and get different responses.

The origins of my Diabetes are because my pancreas was entirely removed. This can make my BG behaviour awkward, sometimes referred to as brittle, where BG changes are extremely fast. Often I know (realise that I'm having a brittle day) and I raise my low alert to 6.5. I'm fortunate that my Dexcom allows a low alert up to 8.3; Libre limits their low threshold to 5.6 - which may be OK for most people already well on top of their BG management. But too low for me on bad days and I have always felt too low for a bit of tech used for so many different requirements.

All that said when I listen to my alerts and respond sensibly, I extremely rarely go hypo. If I hear or see a low Alert and ignore it, then not surprisingly things often go wrong. If I've gone hypo I can almost always attribute that to MY ignoring a first Alert. Invariably it's MY fault. The NHS gave me a relatively expensive but of tech and I'm grateful for that. It's purpose was to help me manage my BG sensibly and as a consequence to reduce D problems in the future.

I was astonished when on my DAFNE course in late 2022 the instructing DSN said we should all expect to go hypo and several times a week. Since I had not been hypo for over 8 months I challenged that statement and was told I must be constantly running high. I proved from my Libre graphs that I wasn't and then to add to my astonishment she said it must be because I'm T3c and so "different". That DSN was living in a different era to me! The tech, when working well, is there to help us and to benefit us and the NHS in the long term.

I have followed advice and raised my low alert/alarm to 5. I think it’s good advice as it’s giving me more time to react to going low before being hypo. I think it’s a bit less stressful than suddenly having to treat a hypo. I now need to learn what to eat when my blood sugar is dropping in order to stabilise it rather than shooting up high.

 

[CathyFP]

Initial hypo signs should be felt before getting to 3.5 when you have Type 1. My consultant says you should feel them in the low 4s. This sensitivity to those early signs is important because it alerts you you’re going too low. The nasty hypo signs - profuse sweating, clumsiness, faintness, etc etc - mean you’re already deep in a hypo. IMO, those are to be avoided.

@Inka Why did your nurse tell you to lower the alarm? Was it so you could feel a hypo or was it because they thought the alarms were contributing to your anxiety?
[/QUOTE]
The nurse thought the alarms we’re contributing to my anxiety @ink