Insomnia and anxiety since diagnosis

[SianyBee]

Hi all, I got diagnosed with type 3c two weeks ago and put on insulin the day after. All came as a huge shock but I'm managing to adjust and my levels are really good now.

But one thing I'm struggling with is sleep. I'm not the best sleeper anyway but since diagnosis I have developed a huge phobia of going to bed. I'm utterly terrified of having a hypo in the night. I am usually between 5 and 6.5 before bed so having a snack of an apple and peanut butter late every night to put my mind at rest (Was told to have a snack if lower than 8, but the nights I was 8 or more my levels were low 4 in the morning and I felt horrible) .

anyway I am waking up several times a night and feeling really anxious and testing my bloods in the middle of the night to reassure me that they are ok. Even then I can't seem to sleep more than two hours at a time. I feel so shattered all the time and have had to take sick leave from work. I am now back on shorter days.

Does this fear ever go please? I am feeling really scared that for the rest of my life I will not sleep well due to this. Any advice on how to handle this would be appreciated. I have never suffered anxiety before, I am usually stress free and live in the moment but this has hit me hard. Xx

 

[Inka]

Hi @SianyBee and welcome 🙂

Your fear is very common and perfectly natural. I often test my blood sugar when I wake in the night just for reassurance but I only tend to wake once.

A couple of things - what insulins do you take and when? And regarding your bedtime snack - very sensible, but I’d go with something like a small bowl of cereal or some oatcakes and peanut butter as an apple isn’t a very ‘long-lasting’ carb.

What blood sugar results are you getting when you test in the night?

 

[Inka]

I forgot to say that Yes, you will become more relaxed. You’ll also learn more, especially about what works for you as an individual. That will give you more confidence and help you relax about everything more.

Disturbed sleep is normal after diagnosis, quite apart from the fear of hypos, as it’s obviously a big life change and a lot to get your head round. It does all get easier.

 

[Amity Island]

Hi all, I got diagnosed with type 3c two weeks ago and put on insulin the day after. All came as a huge shock but I'm managing to adjust and my levels are really good now.

But one thing I'm struggling with is sleep. I'm not the best sleeper anyway but since diagnosis I have developed a huge phobia of going to bed. I'm utterly terrified of having a hypo in the night. I am usually between 5 and 6.5 before bed so having a snack of an apple and peanut butter late every night to put my mind at rest (Was told to have a snack if lower than 8, but the nights I was 8 or more my levels were low 4 in the morning and I felt horrible) .

anyway I am waking up several times a night and feeling really anxious and testing my bloods in the middle of the night to reassure me that they are ok. Even then I can't seem to sleep more than two hours at a time. I feel so shattered all the time and have had to take sick leave from work. I am now back on shorter days.

Does this fear ever go please? I am feeling really scared that for the rest of my life I will not sleep well due to this. Any advice on how to handle this would be appreciated. I have never suffered anxiety before, I am usually stress free and live in the moment but this has hit me hard. Xx

Hi SianyBee,

I would try getting hold of a Freestyle Libre 2 (free on prescription for many) which is a glucose monitor worn on the arm. This (libre 2) has just been released in the UK and will give an alarm if your blood sugar drops below (or goes above) whatever value you tell it e.g below 5mmol or 4.5mmol etc If it's set to 5 that wll give a bit more time to react if it's dropping.

Diabetics are usually adivsed to keep within a range of 4-10mmol as much as possible. The libre however doesn't actually read blood sugar and there is a slight 10min lag between actual blood sugar and interstial glucose fluid.

This would put your mind at rest, at least until you get on top of things and you can manage things a bit more predictably.

 

[SianyBee]

Hi @SianyBee and welcome 🙂

Your fear is very common and perfectly natural. I often test my blood sugar when I wake in the night just for reassurance but I only tend to wake once.

A couple of things - what insulins do you take and when? And regarding your bedtime snack - very sensible, but I’d go with something like a small bowl of cereal or some oatcakes and peanut butter as an apple isn’t a very ‘long-lasting’ carb.

What blood sugar results are you getting when you test in the night?

Thank you for your reply. I was told by my nurse that an apple is a good snack to have with peanut butter? It does seem to keep my levels steady when I have it compared to say a few nuts and berries. The cereal I have in the morning is gluten free porridge oats (coeliac) and very carb high so without a bolus this would spike me I think? I tend to take three or four units of novo rapid with it every morning depending on my fasting levels. They seem to be around 4.5-6.5 on average, mainly in the 5 range tho. But last night I tested at 5.4 so ate the Apple / nut butter and also a small gf oat cracker and woke up at 6.4 at 9am (6 at 6am) . Without the cracker previous readings have been very similar in morning as my bedtime, so it does seem to work which should offer me some reassurance really, yet I'm still anxious about it.

One night my reading was 9.4 so I just ate a sugar free alpro yogurt and berries, I woke at 5.2. So this implies that I need to have a snack everynight as if I was say 7.4 I coulda dropped to below 4 surely?

Is it always advisable to have a snack even if you are above 8?

I also take basal of ten units of lantus every day at midday.

I just want to sleep without feeling so scared and feel rested so I can get on with my new normal. The insulin and carb counting is not a big issue to me at all just this fear of a hypo. The other day I was making tea and felt slightly woozy and couldn't think straight, so I checked my bloods and they were 4.3 the lowest reading I've seen so far, not a hypo know but I didn't feel good at that level, I ate half a banana and felt better quite soon after.

 

[SianyBee]

Sorry in the night around the 5-5.8 Mark usually

 

[SianyBee]

Hi SianyBee,

I would try getting hold of a Freestyle Libre 2 (free on prescription for many) which is a glucose monitor worn on the arm. This (libre 2) has just been released in the UK and will give an alarm if your blood sugar drops below (or goes above) whatever value you tell it e.g below 5mmol or 4.5mmol etc If it's set to 5 that wll give a bit more time to react if it's dropping.

Diabetics are usually adivsed to keep within a range of 4-10mmol as much as possible. The libre however doesn't actually read blood sugar and there is a slight 10min lag between actual blood sugar and interstial glucose fluid.

This would put your mind at rest, at least until you get on top of things and you can manage things a bit more predictably.

This sounds amazing and I've heard of these. Do I just ask for one? I have an appointment with the endocrinologist in two weeks so I will express my concerns and anxiety and see if he can help maybe. That would Def help with my sleep issue

 

[Inka]

Thank you for your reply. I was told by my nurse that an apple is a good snack to have with peanut butter? It does seem to keep my levels steady when I have it compared to say a few nuts and berries. The cereal I have in the morning is gluten free porridge oats (coeliac) and very carb high so without a bolus this would spike me I think? I tend to take three or four units of novo rapid with it every morning depending on my fasting levels. They seem to be around 4.5-6.5 on average, mainly in the 5 range tho. But last night I tested at 5.4 so ate the Apple / nut butter and also a small gf oat cracker and woke up at 6.4 at 9am (6 at 6am) . Without the cracker previous readings have been very similar in morning as my bedtime, so it does seem to work which should offer me some reassurance really, yet I'm still anxious about it.

One night my reading was 9.4 so I just ate a sugar free alpro yogurt and berries, I woke at 5.2. So this implies that I need to have a snack everynight as if I was say 7.4 I coulda dropped to below 4 surely?

Is it always advisable to have a snack even if you are above 8?

I also take basal of ten units of lantus every day at midday.

I just want to sleep without feeling so scared and feel rested so I can get on with my new normal. The insulin and carb counting is not a big issue to me at all just this fear of a hypo. The other day I was making tea and felt slightly woozy and couldn't think straight, so I checked my bloods and they were 4.3 the lowest reading I've seen so far, not a hypo know but I didn't feel good at that level, I ate half a banana and felt better quite soon after.

An apple is a good snack during the day but not so much at night. You need something longer acting. Note that I said a small bowl of cereal. You need to count the carbs. I used to have Puffed Wheat but if you’re coeliac then obviously that’s out and you would need to look for similar gluten-free cereals. My bowl was around 12-15g carbs including the milk so definitely not carb heavy.

If your blood sugar is dropping overnight when it’s 8 or 9.4 at bedtime, you might need less basal insulin and/or to eat a snack when you’re 8 or 9 anyway (perhaps a smaller snack).

I have a pump and even so I prefer to be in the 6s at night for safety. I wouldn’t be happy being in the 5s on injections. I would suggest you might need less basal during the night.

Another thing you could consider is splitting your Lantus or moving to Levemir as basal instead. That way you’d have two injections of basal, allowing you to have less basal in the evening dose and reduce your risk of nocturnal hypos.

 

[SianyBee]

Thank you, I'll try a small portion of porridge later then perhaps. I don't check my bloods again after I've had the snack tho? Do you? I just go to sleep, otherwise I would be checking non stop.

My assumption with the bedtime 8/9 levels was that it is kinda the same as what it would be post snack? Also they were higher right after my diagnosis at 20, 14 , 12 etc and all came down over night to normal levels as I assumed higher ones would do? Otherwise if they stayed up there wouldn't that mean my basal was too low? My nurses insist my basal is spot on but I'll mention this to them Monday I think.

 

[Inka]

No, I wouldn’t check my bloods again after a bedtime snack unless I felt low or had been low beforehand. I did used to experiment slightly with the timing of my bedtime snack to see what worked best. I also stuck to the same snack every night as I knew it worked for me.

 

[SB2015]

I remember so clearly my first night in hospital after diagnosis, and being too frightened to go to sleep as I though I would have a hypo and die!!! I was assured by the nurse at around 2:00 am when my light was still on that if I had a hypo I would wake up.

That was along time ago now and yes it does become easier and you will become more relaxed as you become more confident. There is so much to learn so quickly at the start. It is a bit like learning to drive. It all seems very complicated to start with, but then just becomes automatic and you are watching for anomalies along the way.

I will flag our resident expert on 3c who will no doubt be able to give more specific advice , @eggyg
There is plenty of support available on here and I have learnt most of my management skills from others on here. Whatever questions you have just ask. Nothing is considered silly on here.

 

[eggyg]

Hi @SianyBee from a fellow Type 3c. I had a bit more time to come to terms with diabetes and insulin but I remember the first day I started on insulin, fixed dose of a mixed insulin of 2 units. Like you I was too scared to sleep and drive without surrounding myself with jelly babies! It was only through doing my own research and coming on this forum that I realised that everything would be ok. Hopefully, when we get out of this lockdown, you’ll be offered a carb counting course which will help you understand it a lot more and meet others going through the same thing. I believe there’s online courses you can do BERTIE is one I think, maybe other members can help me out here. In my opinion the best place is here, between us all we have millions of years of experience ( slight exaggeration) and one of us will be able to help. There’s nothing wrong with testing through the night, but once about 3am should be enough until you feel more confident. Any questions re Type 3c, fire away, I’ll do my best to help. Elaine.

 

[eggyg]

@SianyBee just had a thought. Do you know if you’re producing any insulin at all? What led to your Type 3c diagnosis, surgery, pancreatitis, chronic or acute? If you’re still spurting out insulin it will be a bit more difficult to control your BGs, are you also taking Creon? That can mess the BGs up too. Sorry for all the questions but could help to have a fuller picture. Changing to Levemir twice a day sounds like a good idea, that’s my basal. I don’t go to bed on less than 7, even if it’s 6.7 I’ll have a 10grm snack, ginger nut or chocolate digestive. I usually hover between 5/7 on a morning.

 

[SianyBee]

I remember so clearly my first night in hospital after diagnosis, and being too frightened to go to sleep as I though I would have a hypo and die!!! I was assured by the nurse at around 2:00 am when my light was still on that if I had a hypo I would wake up.

That was along time ago now and yes it does become easier and you will become more relaxed as you become more confident. There is so much to learn so quickly at the start. It is a bit like learning to drive. It all seems very complicated to start with, but then just becomes automatic and you are watching for anomalies along the way.

I will flag our resident expert on 3c who will no doubt be able to give more specific advice , @eggyg
There is plenty of support available on here and I have learnt most of my management skills from others on here. Whatever questions you have just ask. Nothing is considered silly on here.

Thankyou so much for your lovely message. I really have felt so overwhelmed , got my blood test , then results two days later and on insulin the day after that. If I could just sleep well I know I will be able to manage everything else. A CGM looks like the perfect solution so I hope I can get one at some point

 

[SianyBee]

@SianyBee just had a thought. Do you know if you’re producing any insulin at all? What led to your Type 3c diagnosis, surgery, pancreatitis, chronic or acute? If you’re still spurting out insulin it will be a bit more difficult to control your BGs, are you also taking Creon? That can mess the BGs up too. Sorry for all the questions but could help to have a fuller picture. Changing to Levemir twice a day sounds like a good idea, that’s my basal. I don’t go to bed on less than 7, even if it’s 6.7 I’ll have a 10grm snack, ginger nut or chocolate digestive. I usually hover between 5/7 on a morning.

Hi there, idiopathic chronic pancreatitis from late teens (luckily totally pain free since my diagnosis aged 21), severe exocrine insufficiency treated by creon yes and I'm not sure if my pancreas produces any insulin, how do I find that out please? I know that it's mostly calcified and was told many years ago only about 20% was still remaining.

My levels are really good now I think. On diagnosis my fasting was 14 and my three month average one was 98. But now two weeks in they are usually around the 5 or 6 mark before meals and in the morning too. I don't like them dropping below 4.5 I feel really strange and woozy the two times it has happened.

I think I'll make sure I have a snack regardless of my level at night then? Would that still be ok even if I am at say a 8 or 9? Maybe a smaller one then?

I like that you have a choc biscuit 🙂 I've not tried any choc yet but I do hope to at some point. I'm finding the Apple and peanut butter does keep me really steady and similar to the level I was at before eating it. Maybe I'll have more if it's in the 5 range which is quite common this week (Was higher all thru my period for some reason!) Trial and error I guess hey.

 

[eggyg]

You can have a C Peptide test if they’ll let you, I’ve asked over the years but they’ve always said no. I had my most of my pancreas removed 13 years ago hence my diagnosis which I only got two years ago, before that they said I was Type 2! The HCPs don’t know much about it unfortunately, I’m just left to it TBF. I manage quite well, I’m pretty certain I don’t produce any insulin now, the bit of pancreas I have left ( the head) is atrophied now. Hopefully your team are on the ball and you get the best treatment. I’ve never tried for a Libre on prescription, I have self funded it at times (£100 a month!) but as I’m well managed on the whole I just prick fingers and go with it.

 

[Amity Island]

This sounds amazing and I've heard of these. Do I just ask for one? I have an appointment with the endocrinologist in two weeks so I will express my concerns and anxiety and see if he can help maybe. That would Def help with my sleep issue

Hi,
Yes you can ask for one. To be honest, for someone newly diagnosed (like yourself) i'm suprised the libre isn't being automatically prescribed, perhaps they will do so at your next appointment.

 

[SianyBee]

Morning all, so my nurse says I can have the new sensor in a few weeks time when the stock arrives. I'm so grateful and happy, it can't come quick enough.

I went to bed feeling less anxious last night but it Seems my usual bedtime snack that's been keeping me steady isn't working anymore, I even added two small crackers to the Apple and peanut butter. Slept the best sleep I've had for weeks and woke up at 4.4! Was 6.4 before my snack and usually I stay around there. Feel so tired today despite sleeping straight from 11:30 till 5:45! (Usually wake around 3-4 every night) Then again for couple hours.

So now I'm baffled as to what has changed and gonna start worrying again. I'll be having a much bigger supper tonight but not sure that will work? As last night's had two crackers added too.

 

[everydayupsanddowns]

Glad you are going to be able to access Libre2 @SianyBee

I think things may be slightly more complicated by the 3c, but I think in the long term you may benefit from running a ‘basal test’ to see what happens to your BG over the course of the day when only your basal is active (you split the day into chunks and look at different time periods over the course of a few days).

Basal Testing in Diabetes - Diabetes Support

Managing diabetes effectively requires constant monitoring and adjustments to ensure blood sugar levels remain stable. One key aspect of this management process is basal testing, which focuses on evaluating the effectiveness of basal insulin in the body. In this blog article, we’ll explore the...

www.diabetes-support.org.uk

Having a late snack to keep BGs up is quite ‘old school’ advice, and dates from the time when people would feed their insulin. Ideally your basal will just be holding you steady (I am assuming you are on separate mealtime (bolus) and background (basal) insulins?

If your BG is generally dropping or rising by more than around 1.7mmol/L overnight it feels to me like the dose isn’t set quite right, and you should be speaking to your team about adjusting it.

 

[SianyBee]

Glad you are going to be able to access Libre2 @SianyBee

I think things may be slightly more complicated by the 3c, but I think in the long term you may benefit from running a ‘basal test’ to see what happens to your BG over the course of the day when only your basal is active (you split the day into chunks and look at different time periods over the course of a few days).

Basal Testing in Diabetes - Diabetes Support

Managing diabetes effectively requires constant monitoring and adjustments to ensure blood sugar levels remain stable. One key aspect of this management process is basal testing, which focuses on evaluating the effectiveness of basal insulin in the body. In this blog article, we’ll explore the...

www.diabetes-support.org.uk

Having a late snack to keep BGs up is quite ‘old school’ advice, and dates from the time when people would feed their insulin. Ideally your basal will just be holding you steady (I am assuming you are on separate mealtime (bolus) and background (basal) insulins?

If your BG is generally dropping or rising by more than around 1.7mmol/L overnight it feels to me like the dose isn’t set quite right, and you should be speaking to your team about adjusting it.

Thank you. When you say dropping by 1.7 do you mean even if I have a snack? Or based on no snack? For example I can be At 8 at night or maybe 4.8 depending on what I've had for tea I guess, e.g. the other night I was 8.6 so had no snack and woke up at 6.6, another time I was 9.4 and woke at 5.2. Then with a snack I was earlier this week at 6.4 and woke at 4.4 and then last night the same snack saw me at 5.2 and I woke at 6.2.

The same happens in the day too though, I've had the same lunch three days running and one day I was higher after, the other lower and I stayed the same the third time. It truly baffles me but I know other things can affect your levels too, I didn't do much different on those days tho really.

To be fair I am usually hungry before bed so don't mind the snack esp as I'm not snacking in between meals now or eating any choc, ice cream, sweets etc. But it would Def be good to be able to sort my basal out somewhat.

I'll look into the link ta, I think it may involve fasting tho? Not something I've ever been good at haha. But I'll give it a try.

I was going to reduce my basal this week after the lower morning reading but it's not happened again since, my nurse thinks it may be because I actually slept for th first time properly in three weeks, which doesn't reassure me as now I feel anxious to make sure I wake up and test!

Hopefully the sensor will remedy all of this and also allow me to do the basal tracking a bit easier too.