My first "hypo"

[pawprint91]

I know it's still early for me, it feels like everything I do, even when I'm trying to do it right, is wrong.

Sorry you are feeling this way but the fact you are here on this forum asking and trying to learn shows you are doing all the right things, as does the fact you know you need to ask for Novorapid to be introduced, because, as you are, I am sure that this is why you have experienced higher levels. If you think these levels were caused by food then I wouldn't worry too much about ketones (unless they were very high when you were diagnosed) but I can appreciate its always worth checking, particularly if you know without NR you have no way of potentially bringing these levels back down (did they drift down afterwards, between breakfast and lunch?).

As I have said before, I absolutely had to beg the dsn over the phone to allow me to introduce NR, as I had similar experiences to you, and even then she was reluctant - if I hadn't started injecting for all meals (not just dinner as they wanted me to) I think I'd have higher levels for longer. So yes, please do push for its use, even if they just give you the one meal a day as they gave me, it'll give you some respite and you can begin to learn how to introduce it in other areas.

But first and foremost, please try and be kind to yourself. As somebody approaching their first anniversary of diabetes diagnosis, I can assure you, it does get easier, even if you feel as though right now you are in a dark tunnel. You are doing well!

 

[BenjaminRWT]

Sorry you are feeling this way but the fact you are here on this forum asking and trying to learn shows you are doing all the right things, as does the fact you know you need to ask for Novorapid to be introduced, because, as you are, I am sure that this is why you have experienced higher levels. If you think these levels were caused by food then I wouldn't worry too much about ketones (unless they were very high when you were diagnosed) but I can appreciate its always worth checking, particularly if you know without NR you have no way of potentially bringing these levels back down (did they drift down afterwards, between breakfast and lunch?).

As I have said before, I absolutely had to beg the dsn over the phone to allow me to introduce NR, as I had similar experiences to you, and even then she was reluctant - if I hadn't started injecting for all meals (not just dinner as they wanted me to) I think I'd have higher levels for longer. So yes, please do push for its use, even if they just give you the one meal a day as they gave me, it'll give you some respite and you can begin to learn how to introduce it in other areas.

But first and foremost, please try and be kind to yourself. As somebody approaching their first anniversary of diabetes diagnosis, I can assure you, it does get easier, even if you feel as though right now you are in a dark tunnel. You are doing well!

Thanks.

The rise in levels seems to be a combination of food + inactivity. It does typically come back down within a few hours, but not quite that high. Usually within the 6s or 7s.

Something similar happened a few days after I was told it was Type 1 I had and picked up my insulin, which I'd talked about here in one of my first posts. I hit 16.2 that evening, ended up on the phone to 111 to get an out of hours GP. My levels were always high then, but I've been fairly decent with bringing them down usually since then.

I didn't even have anything different, food-wise either. (Weetabix for breakfast, sandwich and some crisps for lunch. Latter isn't ideal but haven't had it this bad before) But I think falling asleep on the bus caused the first spike to be worse than usual, that did me in the very first time. I was tired, had a kip in the afternoon, did a pre-dinner blood test and it went sky high, and even worse after eating.

The afternoon one yesterday, I spent to long just sat down I was even more inactive than I am doing the other duties I usually do. Sat down in a small back office, occasionally serving customers, doesn't help after eating.

 

[pawprint91]

Thanks.

The rise in levels seems to be a combination of food + inactivity. It does typically come back down within a few hours, but not quite that high. Usually within the 6s or 7s.

Something similar happened a few days after I was told it was Type 1 I had and picked up my insulin, which I'd talked about here in one of my first posts. I hit 16.2 that evening, ended up on the phone to 111 to get an out of hours GP. My levels were always high then, but I've been fairly decent with bringing them down usually since then.

I didn't even have anything different, food-wise either. (Weetabix for breakfast, sandwich and some crisps for lunch. Latter isn't ideal but haven't had it this bad before) But I think falling asleep on the bus caused the first spike to be worse than usual, that did me in the very first time. I was tired, had a kip in the afternoon, did a pre-dinner blood test and it went sky high, and even worse after eating.

The afternoon one yesterday, I spent to long just sat down I was even more inactive than I am doing the other duties I usually do. Sat down in a small back office, occasionally serving customers, doesn't help after eating.

I definitely agree re: sitting down. Even with novorapid on board, not moving around even a little after eating can still impact my levels - so I wouldn’t worry/beat yourself up about this too much, if it’s any consolation. Also, cereal can spikes blood sugar even when on NR so again, do try not to worry too much, frustrating as I know it is. When I wasn’t on novorapid I ate less carbs (not low carb) just for my own peace of mind because I knew I didn’t want to see too high readings without having anything to bring it down (this was against the advice of the nurse who told me to eat normally, but without novorapid I kind of refused to, however I do now) - but it sounds like you’re managing okay and this was just a bad day.

Please do ask your team for NR, and I hope you are able to use it soon!

 

[Tdm]

I definitely agree re: sitting down. Even with novorapid on board, not moving around even a little after eating can still impact my levels - so I wouldn’t worry/beat yourself up about this too much, if it’s any consolation. Also, cereal can spikes blood sugar even when on NR so again, do try not to worry too much, frustrating as I know it is. When I wasn’t on novorapid I ate less carbs (not low carb) just for my own peace of mind because I knew I didn’t want to see too high readings without having anything to bring it down (this was against the advice of the nurse who told me to eat normally, but without novorapid I kind of refused to, however I do now) - but it sounds like you’re managing okay and this was just a bad day.

Please do ask your team for NR, and I hope you are able to use it soon!

At the end of the day, you need the tools to do the job, and that means a basal insulin and a bolus one (novorapid).
I was started on both at the same time and i don't see why they'd not do this. Hope you get your NR soon!

 

[BenjaminRWT]

I've said earlier. I have the novorapid. 2 pens of the stuff in the fridge. It was prescribed to me at the same time as the Lantus I take. But they said not to use it yet until they say I'm to start using it. That's the frustrating part. It's just sitting in my fridge, doing nothing, when it might have helped yesterday and in a week's time when I'll be doing similar stuff.

 

[pawprint91]

I've said earlier. I have the novorapid. 2 pens of the stuff in the fridge. It was prescribed to me at the same time as the Lantus I take. But they said not to use it yet until they say I'm to start using it. That's the frustrating part. It's just sitting in my fridge, doing nothing, when it might have helped yesterday and in a week's time when I'll be doing similar stuff.

More frustrating, I found, than if you didn’t have it at all.

 

[Inka]

Yeah, they usually do that - issue the correct insulins and then say you mustn’t use one of them 🙄 There have been so many people like you on this forum that I’ve lost track of names. It’s stupid and it doesn’t happen everywhere, so you’re just unlucky.

My advice is not to reduce carbs - that will just prolong your difficulties. Eat normally. Welcome the (moderately) high sugars and pester them until they help you. You’re more patient than I’d be in the same situation. Ask politely but firmly and drop in a few high sugar numbers, the NHS guidelines, and hint at making a complaint. The squeaky wheel gets the oil…

 

[pawprint91]

My advice is not to reduce carbs - that will just prolong your difficulties. Eat normally. Welcome the (moderately) high sugars and pester them until they help you. You’re more patient than I’d be in the same situation. Ask politely but firmly and drop in a few high sugar numbers, the NHS guidelines, and hint at making a complaint. The squeaky wheel gets the oil…

Even with slightly reduced carbs (I still ate bread, just brown not white etc - now I’d have what I fancied if I were having it) I was getting numbers in the high teens - so was too scared at the time to eat “normally” - I just wanted my sugars to be “normal” as soon as possible! I am pretty sure I have health anxiety linked to OCD so this is probably where my thinking came from - just wanted to post and say I wasn’t necessarily recommending the OP do that, but just saying what helped me when I was in his situation. However if the OP’s reading is low teens when eating normally, then I can see why you can say it’s probably best to just carry on as normal for now - his pancreas is clearly doing better than mine was at that point

Again, apologies as I never want to give misleading advice, just try to help people who are in a similar situation to the one I semi-recently found myself in, where I too turned to this forum for help and advice and received (and continue to receive) so much from it.🙂

 

[trophywench]

Just remind me - how much time have you taken off work ie off sick, since your Type 1 diagnosis? It's daft in my opinion to try and make the rest of your life just fit in with a medical condition you really haven't got that much knowledge of as yet.

It would also do your employer a bit of good too since they have to get to grips with an employee who is now covered by Disability legislation so need to understand that if you need them to make any appropriate adjustments, like giving you plenty of time to deal with the condition's own requirements eg being able to test your BG, have your jab, eat your lunch without rushing AND then go for a walk for 10 minutes or whatever, then they have to (by law) offer to make those adjustments with a good grace and without inconveniencing you. Then you could use your own time to try and get to grips with the whole shebang without interference from outsiders.

I'm actually glad that a) in 1972 being diagnosed with T1 automatically = a stay in hospital, and b) as starting on insulin affected my eyesight within 36 hours no way was I any use to my employer, a large insurance company. Much reading and handwriting in those days pre computers! (other than in Bond films! - and that was one of my employer's mainframes anyway but the likes of me didn't ever get to see them) So in the finish I had to have 5 weeks off - and was I flippin bored ...... but, I had got a bit used to it before I went back.

 

[Inka]

Even with slightly reduced carbs (I still ate bread, just brown not white etc - now I’d have what I fancied if I were having it) I was getting numbers in the high teens - so was too scared at the time to eat “normally” - I just wanted my sugars to be “normal” as soon as possible! I am pretty sure I have health anxiety linked to OCD so this is probably where my thinking came from - just wanted to post and say I wasn’t necessarily recommending the OP do that, but just saying what helped me when I was in his situation. However if the OP’s reading is low teens when eating normally, then I can see why you can say it’s probably best to just carry on as normal for now - his pancreas is clearly doing better than mine was at that point

Again, apologies as I never want to give misleading advice, just try to help people who are in a similar situation to the one I semi-recently found myself in, where I too turned to this forum for help and advice and received (and continue to receive) so much from it.🙂

No need to apologise @pawprint91 🙂 My comment wasn’t aimed at you. It was more related to what some people in @BenjaminRWT ‘s situation do. Reducing the carbs masks the true situation. As you were getting blood sugars in the high teens, then you clearly judged your carb intake right at that time 🙂

 

[helli]

@trophywench as has often been said, we are all different.
I was grateful for “normal” life when I had my diagnosis.
Thankfully, I did not experience DKA so spent no time in hospital and only one day off work.
Within a month of my diagnosis, I did a 25 mile overnight sponsored walk that I had registered for months beforehand, and within a week, I MCed a half day conference that I had been planning over the same time. I delegated a little more than usual but was happy to have something that wasn’t diabetes to focus on.
Taking a week off work would have only given me time to brood and worry.

 

[trophywench]

I did absolutely NOT have any choice! The GP was not equipped to either take any blood from anyone's arm nor do the requisite tests - later when called upon to attend Outpatients clinics, the request for tests was sent to the GP, who rang you to collect the form(s) and you had to ring the Path Lab at the hospital and make an appt with them to attend for them to take the blood which they'd then test and let the consultant have the results, which he'd tell you when you attended his clinic.

GP said he thought very strongly that I probably had Type 1 diabetes, so had rung the hospital and arranged for me to be admitted tomorrow morning and to arrive at Ward C3 at about 10 am ready to stay there for however long it took until they'd done all the necessary tests and sorted me out well enough to come home and back to my usual life.

No way did I demur, I felt so damned lousy, needing to drink at least 2 pints of water straight down every hour or so, weight dropping off, obviously peeing for England, heart alternatively racing and then going really slow, sort of bong. Bong. Bong. Then normal again for a bit. Clearly summat was wrong and I needed to know what the hell it was!

 

[BenjaminRWT]

A similar thing happened to me again yesterday.

I had just come into work, not even clocked in. My libre went off, said I was low, 3.8.

I was a little early (I sometimes like to start 10mins early and have a longer lunch), I was actually saying hello to my team leaders as it went off, so I asked if I could use the "cube" (a back office on our floor) to do a fingerprick test, as after last week I made a point to keep that stuff with me in case my libre read too high or low again. That read 5.6, so I'm unsure why there was a discrepancy there. But I had a couple of biscuits just to be on the safe side. Generally I'm mostly within range, sometimes a little high after lunch but nothing to worry about, but things were within my typical patterns aside from that.

I don't know if it's the difference between the blood in my finger and the interstitial fluid in my upper arm, a dodgy sensor or the sensor is in "wrong" but that was weird.

 

[Tdm]

A similar thing happened to me again yesterday.

I had just come into work, not even clocked in. My libre went off, said I was low, 3.8.

I was a little early (I sometimes like to start 10mins early and have a longer lunch), I was actually saying hello to my team leaders as it went off, so I asked if I could use the "cube" (a back office on our floor) to do a fingerprick test, as after last week I made a point to keep that stuff with me in case my libre read too high or low again. That read 5.6, so I'm unsure why there was a discrepancy there. But I had a couple of biscuits just to be on the safe side. Generally I'm mostly within range, sometimes a little high after lunch but nothing to worry about, but things were within my typical patterns aside from that.

I don't know if it's the difference between the blood in my finger and the interstitial fluid in my upper arm, a dodgy sensor or the sensor is in "wrong" but that was weird.

Just libre being libre....

 

[SimonP]

Remember there is a lag, so if you'd eaten before you finger pricked that could explain the difference, however,
some people find that their libres are consistently off (mine tend to read consistently lower than my actual blood glucose, which I guess is "safe" in that it prevents hypos), not everyone though. Sometimes they are massively off. There are lots of posts about this, you can get sensors replaced if they consistently misread, etc.

This wasn't acceptable to me (especially with one sensor telling me I was low when in fact I was iirc >11mmol/l - I'd been running for a week+ long thinking I had it working nicely only to realise I'd been running high for some unknown period). To clarify, a blood glucose of 11mmol/l is neither here nor there transiently, I don't care about this and regularly stray into this zone while exercising (and if poorly I'm equally not too concerned), however to base one's eating and dosing around staying above this level long term, which is what I was effectively doing, is obviously not what I want to be doing.

Therefore I moved from using the libre app to using a 3rd party tool which reads the libre directly and allows you to calibrate it with finger prick values (XDrip+ in my case, there are other options). Might be worth a look. There are also posts about this, it would be worth breaking out into a different thread though for visibility if it's of interest to you.

 

[BenjaminRWT]

I feel a bit weird just bumping up my own threads, but something happened last week and kinda feels like I've had a "proper" one and knew it, plus something the other day that felt a bit like one and almost certainly wasn't.

Monday of last week. I went into work, I'd had breakfast - a bowl of weetabix - before I left the house but was still a bit hungry, by the time I'd got near to work my levels had gone back to normal (45 minutes on the bus, plus about a 10-15 minute walk), I decided to get a bacon roll from the Asda across the road (I go in to get something for lunch before I start work anyway).

Libre went off, saying I was low. 3.1. I hadn't clocked in yet, I was early, so I had time to do a blood test. That came back as 4.3. I'd just eaten again so I didn't worry too much.

Then, not even 10 minutes later, I made my way into the office, and I swear as I put my hand on the door handle to go in, something came over me. I had to sit back down and I explained to my line manager I didn't feel too good and needed to do a fingerprick test. Sure enough, 3.8. A hypo. I carry cartons of orange juice in my bag for this kind of thing, and a packet of plain digestives, if I ever feel like a bit of a snack. So I had a carton, and checked again in 15mins. It actually sprang up to 7.3, and stayed within range for the rest of the day. That's not to say it didn't make me feel out of sorts the rest of the day, though. Rest of the week was fine.

I'm wondering if it was the weetabix. It tends to quickly spike my levels but they come back in range pretty quick, usually. Not so much this time.

Fast forward to this past weekend. I'd gone to a gig in Bristol. I took my insulin in the hotel room before I went and had something to eat. If anything my levels were a bit high all evening. Nothing I haven't had before and been fine. then.

I didn't have much energy but again, not low BS levels. But I felt awful by the encore. Like almost slumped over the barricade bad.

I was able to make it back to the hotel and did fingerprick test to see, and yeah 9.0 - high, but nothing I hadn't dealt with before, and the libre reading was close enough as well. So not a dodgy unit.

I was prepared if it was a hypo, I always keep my tube of Lift chews, just in case if I'm out anywhere. This wasn't that.

Part of me is taking it as a sign I won't be going down the front at gigs so much anymore.I have two lined up between now and christmas - neither of which is a crazy high energy thing, but this experience has made me think.

I was more worried about spending 5+ hours in Wembley Stadium (AEW All In - wrestling show) just over a month ago than this...

 

[rebrascora]

Sorry to hear you have had a couple of episodes. The first one was an obvious hypo as you explain. Are you still just taking basal insulin (Lantus?) or have you now been started on NovoRapid as well now?

Regarding the second incident at the gig when you were feeling like you wanted to be propped up by the barricade, what was your Libre reading at the time? I appreciate that a finger prick showed you were at 9 when you got back to the hotel. Did your graph show a large peak and then sudden drop or anything? ie Had you gone very high after your evening meal prior to the gig and then dropped rapidly during the gig as that can make you feel rubbish, like a hypo.

 

[BenjaminRWT]

First of all, still just Lantus. I went to an appointment with the dietician a few months ago, and without even asking me to change my eating habits, actually suggested lowering my dose from 8 to 7 units. Everyone seems to be happy with how things are going at the moment, which is sometimes making me suspicious.

Anyway, this wasn't a spike and sudden drop. I was checking my libre between bands being on (there were three bands altogether, a support and the two co-headliners), and mostly in the 8s and 9s there. I was at similar levels last time I was at an all-standing gig back i June when I started this thread - that one may well have been a false alarm. Anyway, I felt absolutely fine all evening with that one.

I did wonder if it was my libre playing up, that's why the first thing I did when I got back was sit down and do a fingerprick, to see. So my levels weren't up and down so much. I did wonder if that's what was going on. I think that's what caused the hypo last week, the spike, followed by a drop a bit too far the other way. The 3.8 fingerprick was enough to confirm that was a hypo.

But yeah, whatever was going on the other night wasn't a spike.

It's something I'm keeping an eye on with the gig I'm attending next month. Maybe I'm better off taking it easy for the time being, though, until I figure this out.

 

[Inka]

Sorry to hear about your hypo @BenjaminRWT I see you’re still not on bolus insulin yet, and I think that’s part of the problem maybe. To take enough Lantus to cover your food (which it’s not supposed to be covering at all), you have to take more than you’d actually need as pure basal. You then have that too large depot of Lantus sitting there, which won’t always release at the correct time.

I’ve probably said this to you at least twice, but taking less Lantus and small amounts of bolus insulin would be better.

As for your gig experience, could it be the heat and crush? I always stand at the front at gigs and at some I’ve passed out briefly not due to my blood sugar but due to the sheer weight of people and unbearable heat. If you stand just back from the major crush and to one side, you should be less hot and crushed and also be able to monitor your blood sugar more easily.

 

[rebrascora]

Well if your levels were nice and steady in the 8s and 9s, then whatever made you feel unwell, may not be connected to your diabetes at all on that occasion.
I think you need to have a realistic expectation though that hypos happen despite our best efforts. I have rather more than most people and average just under one a day, so you are doing really well with just one in several months. In some respects having them more frequently makes them less scary and easier to deal with and mostly I don't need to sit down and can continue to work and a couple of Jelly Babies will sort it. I remember in the early days when I had 2 in a fortnight and someone here kindly said that they had 2 a day and that really helped me to feel more normal and that I wasn't a complete failure or that I was doing something wrong. Some of us just have more erratic BG levels than others. If you can keep it to just one hypo every few months you are doing really well.