Newly diagnosed Type 1

[casand2011]

After a roller coaster journey since last October of firstly being thought to be type 2 then due to significant weight loss and general poor health every test and scan performed to rule out anything else my husband at last been seen by a consultant at the diabetic centre and confirmed type 1. Whilst it's a relief to know, we have been given little information other than he will be using insulin injections going forward once he sees our local diabetic team next week. The problem we have and have been trying to deal with is the extreme low blood sugar levels especially at night. We are being woken up by his sensor going off at least every 2 hours with it showing critical low. Regardless of what he then shoves down his throat to raise the level - glucose sweets,milk banana,toast etc it takes a long time to go back up then plummets again in another few hours. This doesn't happen every night and doesn't seem to follow any pattern regarding what he's eaten or how active he has been. We are both exhausted and obviously aware that lack of good sleep is not helping the situation! Any advice about how we can get his levels more steady. We have always eaten healthily and even more so now so don't know what to try next !!

 

[Inka]

Welcome @casand2011 🙂 I’m glad your husband has got the correct diagnosis. Is he finger-pricking to check the overnight lows? There are what’s called compression lows where pressure on the sensor causes false low readings and alarms, usually at night.

 

[casand2011]

Hi there I have read about compression lows but think that's unlikely as he sleeps on his back a lot so the sensor isn't under pressure. He doesn't finger prick test as he is so tired and also quite stubborn when I suggest certain things to try but I will try and get him to do that even if its during the day just to make a comparison. Reading through posts on here it looks like there is no quick fix unfortunately and everyone is different,I'd just like to be able to relax about it all !

 

[Leadinglights]

Has he actually started on insulin yet or is he taking some oral diabetic medication. It is a good idea to get used to doing finger prick as even with a Libre there will be occasions when it is absolutely needed to make sure you are not misinterpreting the Libre information.

 

[Inka]

Hi there I have read about compression lows but think that's unlikely as he sleeps on his back a lot so the sensor isn't under pressure. He doesn't finger prick test as he is so tired and also quite stubborn when I suggest certain things to try but I will try and get him to do that even if its during the day just to make a comparison. Reading through posts on here it looks like there is no quick fix unfortunately and everyone is different,I'd just like to be able to relax about it all !

I’ve had compression lows from a few sensors where I wasn’t lying on them. I knew because I was awake. With one, it seemed to be if my arm fell into a certain position even though it wasn’t touching the bed. With another, I was lying on the opposite arm to the sensor but got a compression low as my nightclothes had ever so slightly pulled/twisted on it. It took me a few alarms to work out what was causing this!

So, yes, he’d be much better finger-pricking else he’ll never know for sure what’s happening.

 

[rebrascora]

Hi and welcome.

Sorry to hear about your husband's diagnosis. Many of us late starters with Type 1 were assumed to be Type 2 initially, so I am pleased to hear he has got a correct diagnosis relatively quickly..... some people had to wait years!!

Diabetes generally causes high BG not low, so I would suspect these nocturnal hypos are compression lows, unless he has started insulin which it sounds like he hasn't. Most of us move about during our sleep, even if we start off on our back and wake up there, so I wouldn't rule that out and he definitely needs to be finger pricking even if they are genuine, because otherwise he will over treat his hypos. Libre generally takes at least half an hour to catch on that you are recovering from a hypo and your hypo treatment has worked. In that 30 mins it will usually show your levels continuing to drop and cause you to panic and eat too much.
The advice regarding treating a hypo is to double check with a finger prick unless you feel obviously hypo, then eat 15g of fast acting carbs which might be 3 jelly babies or 4-5 glucose tablets or a small box of orange juice, wait 15 mins and retest with another finger prick. If levels are above 4, you might then consider another 10g of slower carbs to stabilise things although I almost never need any and usually just 1 or 2 jelly babies is enough to fix a hypo. If that post treatment finger prick shows that your levels are still below 4, then you have another 15g of fast acting carbs and finger prick again 15 mins later. It is important to be quite disciplined about treating hypos and follow the guidelines because otherwise you over treat and end up too high and that can start you on a glucose rollercoaster which is not pleasant if levels are yoyoing up and down. It makes you feel rubbish and it is frustrating. It doesn't help that hypos can make you feel like you want to eat the whole contents of the kitchen, but once you get used to managing them, you learn not to panic and they are much easier dealt with.
Keeping your BG meter and hypo treatments beside the bed and indeed within easy reach most of the time is important, particularly once he starts on insulin. I have a jar of jelly babies by the bed and some in the bathroom because a hot shower or bath after exercise or activity can drop your levels and in the living room and kitchen and little 2-3 packs of them in all my pockets and handbags. I keep Lift Tablets in the car as they are more stable during the summer when Jelly babies often melt in the heat of the car.

 

[Satan’s little helper]

Hi there I have read about compression lows but think that's unlikely as he sleeps on his back a lot so the sensor isn't under pressure. He doesn't finger prick test as he is so tired and also quite stubborn when I suggest certain things to try but I will try and get him to do that even if its during the day just to make a comparison. Reading through posts on here it looks like there is no quick fix unfortunately and everyone is different,I'd just like to be able to relax about it all !

Hello @casand2011 , from my experience. My sensors can lag considerably in reading coming up off a low. (They read interstitial fluid under the skin, not blood.) I need a BG meter to back up any recovery. Maybe your husband could sign up & enter direct online discussion? It may just ease your personal anxiety.

 

[casand2011]

Has he actually started on insulin yet or is he taking some oral diabetic medication. It is a good idea to get used to doing finger prick as even with a Libre there will be occasions when it is absolutely needed to make sure you are not misinterpreting the Libre information.

He has been on metformin and gliclazide at various strengths,currently 2 metformin and 1 gliclazide morning and evening. He was put on insulin injections,then taken off while they were trying to work out what was going on now hell be back on it but a different form to before and the consultant suggests morning and evening injections and at the moment no carb counting ‍♀️hopefully the diabetes nurse tomorrow will have more info

 

[Leadinglights]

He has been on metformin and gliclazide at various strengths,currently 2 metformin and 1 gliclazide morning and evening. He was put on insulin injections,then taken off while they were trying to work out what was going on now hell be back on it but a different form to before and the consultant suggests morning and evening injections and at the moment no carb counting ‍♀️hopefully the diabetes nurse tomorrow will have more info

I think the guideline indicate that it is better for people to be on a basal /bolus regime as soon as possible rather than having to make two transitions onto a new regime so worth discussing that as an option.
Gliclazide does have the potential to cause low blood glucose if enough carbs are not eaten for the dose being taken.
It would be worth having a list of questions and take a note book to jot things down that are discussed. Getting a contact number is a good idea.
I hope it goes well and you get some answers.

 

[everydayupsanddowns]

He has been on metformin and gliclazide at various strengths,currently 2 metformin and 1 gliclazide morning and evening. He was put on insulin injections,then taken off while they were trying to work out what was going on now hell be back on it but a different form to before and the consultant suggests morning and evening injections and at the moment no carb counting ‍♀️hopefully the diabetes nurse tomorrow will have more info

Sorry to hear about the double-dip lows. It’s a tricky period of adjustment for you both, and the transition between medication types, plus the possibility of ‘false’ hypos overnight can make for an unsettled and frustrating time

Hopefully with a combination of fingerpricks to weed out any false lows, a transition to a more flexible and appropriate insulin regimen, and checking recovery with fingerpricks to avoid sensor lag double-treatments will begin to reduce the stress of these overnight incidents.

 

[casand2011]

Hi and welcome.

Sorry to hear about your husband's diagnosis. Many of us late starters with Type 1 were assumed to be Type 2 initially, so I am pleased to hear he has got a correct diagnosis relatively quickly..... some people had to wait years!!

Diabetes generally causes high BG not low, so I would suspect these nocturnal hypos are compression lows, unless he has started insulin which it sounds like he hasn't. Most of us move about during our sleep, even if we start off on our back and wake up there, so I wouldn't rule that out and he definitely needs to be finger pricking even if they are genuine, because otherwise he will over treat his hypos. Libre generally takes at least half an hour to catch on that you are recovering from a hypo and your hypo treatment has worked. In that 30 mins it will usually show your levels continuing to drop and cause you to panic and eat too much.
The advice regarding treating a hypo is to double check with a finger prick unless you feel obviously hypo, then eat 15g of fast acting carbs which might be 3 jelly babies or 4-5 glucose tablets or a small box of orange juice, wait 15 mins and retest with another finger prick. If levels are above 4, you might then consider another 10g of slower carbs to stabilise things although I almost never need any and usually just 1 or 2 jelly babies is enough to fix a hypo. If that post treatment finger prick shows that your levels are still below 4, then you have another 15g of fast acting carbs and finger prick again 15 mins later. It is important to be quite disciplined about treating hypos and follow the guidelines because otherwise you over treat and end up too high and that can start you on a glucose rollercoaster which is not pleasant if levels are yoyoing up and down. It makes you feel rubbish and it is frustrating. It doesn't help that hypos can make you feel like you want to eat the whole contents of the kitchen, but once you get used to managing them, you learn not to panic and they are much easier dealt with.
Keeping your BG meter and hypo treatments beside the bed and indeed within easy reach most of the time is important, particularly once he starts on insulin. I have a jar of jelly babies by the bed and some in the bathroom because a hot shower or bath after exercise or activity can drop your levels and in the living room and kitchen and little 2-3 packs of them in all my pockets and handbags. I keep Lift Tablets in the car as they are more stable during the summer when Jelly babies often melt in the heat of the car.

Thank you for your reply,I read it to my husband and he felt reassured by what you said, hoping he will join on here as there is a lot of info for him and it's a comfort to realise we're not the only ones experiencing these problems as it's all quite new and scary at the moment ! Lots to take on and process and although he has been referred and seen by a consultant there is still a lot we don't fully understand so any shared experiences will be good to hear! Thanks again

 

[everydayupsanddowns]

Thank you for your reply,I read it to my husband and he felt reassured by what you said, hoping he will join on here as there is a lot of info for him and it's a comfort to realise we're not the only ones experiencing these problems as it's all quite new and scary at the moment ! Lots to take on and process and although he has been referred and seen by a consultant there is still a lot we don't fully understand so any shared experiences will be good to hear! Thanks again

It can be so helpful to have a place where you can ask any questions that arise among people who are facing the same challenges every day - or simply to share unexpected Diabetes Genius moments, or rant about frustrations among folks who ‘get it’