Hi all, I am a carer .

[Mafanwy]

I urgently need help on what to feed my husband who is type 2 newly insulin injecting. Using a librelink2 which has stopped working in as much as the alarms do not go off. I am now too scared to go to sleep. We have just been left in the dark to flounder.

 

[Bloden]

Hi there @Mafanwy. I had the same problem with the alarms. If you look around the forum, you’ll see it’s a common problem. I complained to Abbott (via email) and they eventually sent me a Libre 2 reader. I’ve now got alarms again, with the reader. Have you complained to Abbott? I hope you can get it sorted - and get some sleep.

I can’t help with what to feed your husband, unfortunately. Hopefully someone’ll be along soon with some Type 2 dietary advice.

 

[Leadinglights]

I urgently need help on what to feed my husband who is type 2 newly insulin injecting. Using a librelink2 which has stopped working in as much as the alarms do not go off. I am now too scared to go to sleep. We have just been left in the dark to flounder.

If you could give a bit more information about what insulins your husband is taking and when. Have you been given any information about how much carbohydrate he should have for the dose if insulin. He is taking any other diabetic medication. Do you know what his HbA1C is that has led to him being started on insulin.
All this will make a difference to what food he should be having.
It will take time to get it sorted out and you should be given guidance by his diabetic nurse or team in the early days.

 

[Mafanwy]

Thank you Bloden for answering me. I rung Abbot last monday after reading the many reviews on their website of people having the same issues as my husbands of the alam not working. I knew all the settings were correct on his phone. I had read and followed the set up directions exactly! First they suggested it was a problem with our bt hub. It was not. The phone worked perfectly and connected to it. The lady then went through all my phone settings. All correct and so she insisted it was the sensor at fault. Remove it and replace it. our surgery gives us two per month and those we had trouble getting. I was reluctant but I need that alarm to work. He is not at right dose level yet and at night his level is dropping to 3.1 which point I have to treat him.so i replaced the sensor followed her directions and it worked Until that night and back to square one. No sleep that night hardly. We are exhausted !
Tuesday I rung again, 1.3/4 hrs on the phone. Wanted to do same as day before. They will not accept that the app has a problem. Not the sensors. I refused to change sensor. Told its our phone at fault. I went and bought a new phone a Samsung A53 checked it was compatible, cost a lot of money to end contract early get new phone. Downloaded app. Worked great big relief. That night it stopped working alarms unavailable again. Hardly any sleep. Rung them again. Not helpful at all. Change sensor. No because I have no more. " we will send you one,7-10 working days. " no good to me. We need it now this is threatening his life. He could have a hypo whilst I sleep and go in a coma and die if I do not notice. She just did not care. I said get me someone on this phone and sort this out. There technical manager spoke to me. Nice chap helpful wanted to do all the things she had. Humour me he said. Lets just check. Humour him I did and every single setting was correct. Then he said change sensor. I said cannot have no more. Told phone Gp ask for another. I wonder if they ever try that themselves ? Un install app and reload. I had done that several times already and each time you lose all the data. Its connected to the hospital . I had no idea if they knew what was happening. Cannot phone just leave message. 4 diabetic nurses for an entire lge hospital.
suddenly app worked again. Phone back if it happens again and yes you guessed it. Happened again Just two hrs later. Fed up is putting it mildly. Counted to 100 before picking up phone. Got the original girl and I refused to go through settings or entertain sensor change. She offered to send a reader. It will be here maybe by xmas With the strikes. We now use the app to record data but at night its my worst night mare ! Afraid to sleep.
question maybe you can answer. Is 14 to high a level after food. Trying so hard to keep in green but after a breakfast which is tiny it shoots to 14 and now he does not know what to eat. He also has severe heart failure and its worrying me to death.
sorry this is lengthy.

 

[Mafanwy]

If you could give a bit more information about what insulins your husband is taking and when. Have you been given any information about how much carbohydrate he should have for the dose if insulin. He is taking any other diabetic medication. Do you know what his HbA1C is that has led to him being started on insulin.
All this will make a difference to what food he should be having.
It will take time to get it sorted out and you should be given guidance by his diabetic nurse or team in the early days.

Thank you for answering. He is also on metformin and linagliptin . Humalin1 ( spelling excuse sleep deprivation) no idea how much carbo he is allowed just told watch portion size. He was rushed into hospital early nov with sugar level of 32.7 very very poorly indeed. Started on insulin a different one @50 then 40 , 30 then changed to Humilin1 and now on 16 once a day in the morning to try and stop his levels falling at night below 4. Our surgery is useless. He has been type 2 since 2013 and once a yr test done but no advise ever given except avoid too much sugar. I had no idea that he could have hypos or become hypoglycaemic as a type 2 , stupidly thought only type 1 had those. He is under the hospital diabetic team but getting hold of them is difficult. They are so so overworked and overwhelmed.

 

[TheClockworkDodo]

Sorry to hear all you and your husband are going through at the moment @Mafanwy - you must both be exhausted.

When you were trying to contact the hospital, did you leave a message about the insulin dose and what he should be eating with it, or were you just trying to get help with the Libre? Even good surgeries are unlikely to have anyone who knows much about insulin doses so you really need to speak to a Diabetes Specialist Nurse (DSN) at the hospital about his insulin and food. I know it's hard to get hold of anyone in NHS at the moment, but I'd definitely try to get a message to them if you can. If you can't manage to get a DSN to call you back, you could also try asking for a dietician (ideally you want both).

In the meanwhile, I might be tempted to reduce the insulin slightly to try to stop the night-time hypos if it were me, though I don't know enough about Humilin1 to know if that's going to be effective as I have different types of insulin. 14 is a higher level than he really wants to be after food, yes, but 14 mid-morning (especially if it goes down again before lunch) is better in the short term than 3 in the middle of the night.

A bedtime snack might also help to stave off night-time hypos. If he is able to eat fatty foods with his heart condition then something fatty (like a yogurt or a couple of savoury biscuits and cheese) is ideal as it will last longer in his system - but if he isn't supposed to eat fat then just a couple of savoury biscuits would do.

What is he eating for breakfast at the moment? People here might be able to suggest better alternatives to reduce the mid-morning spike. If you've just been told he needs to cut down on sugar he may be eating other carbs which are equally bad (diabetics are effected by all carbohydrates, including bread, cereals, and lots of starchy foods, not just by sugar). Most people's levels do go up in the morning though, it's not just him. And being on insulin, he will need to eat some carbs, it wouldn't be wise to cut them out altogether.

Btw, while hypos in the night are not a good idea, he would not necessarily go into a coma and die if he had one and you were not awake to help him. Our bodies store glucose in the liver, so it's much more likely his body would just release some stored glucose and his level would go back up again and he'd just wake up in the morning with a bit of a headache and be quite hungry the next day (liver wanting to replenish its store). I don't have any alarms and it's happened to me several times, I've even had a couple of nights when I was hypo more or less all night. It's also quite likely that having the hypo would wake him up - that happens to me much more often.

So while you should keep trying to prevent the hypos and should keep treating them as soon as they happen, just in case (because they can be dangerous), do try not to worry too much about the worst case scenario.

Oh - one more thought - is he testing his blood sugar with a meter whenever the Libre says he's hypo? Libre sensors are a bit variable, they're not always that accurate, especially at the low and high ends of the scale. I wouldn't rely on one telling me I was hypo, I'd always test as well.

 

[Drummer]

Thank you for answering. He is also on metformin and linagliptin . Humalin1 ( spelling excuse sleep deprivation) no idea how much carbo he is allowed just told watch portion size. He was rushed into hospital early nov with sugar level of 32.7 very very poorly indeed. Started on insulin a different one @50 then 40 , 30 then changed to Humilin1 and now on 16 once a day in the morning to try and stop his levels falling at night below 4. Our surgery is useless. He has been type 2 since 2013 and once a yr test done but no advise ever given except avoid too much sugar. I had no idea that he could have hypos or become hypoglycaemic as a type 2 , stupidly thought only type 1 had those. He is under the hospital diabetic team but getting hold of them is difficult. They are so so overworked and overwhelmed.

If you need to keep track, it is the starch and the sugar which amount to the total you need to work with.
It must be very difficult when the technology doesn't work, but it seems that you did not even get the most basic information, that a type 2 diabetic doesn't deal well with carbohydrates and 'too much sugar' is just not what it is about.
You were right to think that a type 2 is not usually bothered by hypos - it is glucose reducing medication that pushes things down to those levels.
When on insulin there is usually a need to match up the doses, the timing with respect to eating and evening out the amounts of carbohydrate eaten at whatever times - that is why counting up the carbs in a meal might give you an even chance of sorting something out.
It reads as though your husband never got any advice on how to reduce blood glucose using diet alone and it would not be possible to go back to that state now insulin and other medication is involved, not with the total lack of help and information you seem to be experiencing.
I am a type 2 diet controlled, but my diet is low carb, so not safe to even think about as your husband seems to be having too few carbs and going low. Presumably it is a combination of the tablets plus injected and his own natural insulin acting overnight, but you really need someone who can give proper advice on the fine tuning of insulin dosing.

 

[Mafanwy]

Sorry to hear all you and your husband are going through at the moment @Mafanwy - you must both be exhausted.

When you were trying to contact the hospital, did you leave a message about the insulin dose and what he should be eating with it, or were you just trying to get help with the Libre? Even good surgeries are unlikely to have anyone who knows much about insulin doses so you really need to speak to a Diabetes Specialist Nurse (DSN) at the hospital about his insulin and food. I know it's hard to get hold of anyone in NHS at the moment, but I'd definitely try to get a message to them if you can. If you can't manage to get a DSN to call you back, you could also try asking for a dietician (ideally you want both).

In the meanwhile, I might be tempted to reduce the insulin slightly to try to stop the night-time hypos if it were me, though I don't know enough about Humilin1 to know if that's going to be effective as I have different types of insulin. 14 is a higher level than he really wants to be after food, yes, but 14 mid-morning (especially if it goes down again before lunch) is better in the short term than 3 in the middle of the night.

A bedtime snack might also help to stave off night-time hypos. If he is able to eat fatty foods with his heart condition then something fatty (like a yogurt or a couple of savoury biscuits and cheese) is ideal as it will last longer in his system - but if he isn't supposed to eat fat then just a couple of savoury biscuits would do.

What is he eating for breakfast at the moment? People here might be able to suggest better alternatives to reduce the mid-morning spike. If you've just been told he needs to cut down on sugar he may be eating other carbs which are equally bad (diabetics are effected by all carbohydrates, including bread, cereals, and lots of starchy foods, not just by sugar). Most people's levels do go up in the morning though, it's not just him. And being on insulin, he will need to eat some carbs, it wouldn't be wise to cut them out altogether.

Btw, while hypos in the night are not a good idea, he would not necessarily go into a coma and die if he had one and you were not awake to help him. Our bodies store glucose in the liver, so it's much more likely his body would just release some stored glucose and his level would go back up again and he'd just wake up in the morning with a bit of a headache and be quite hungry the next day (liver wanting to replenish its store). I don't have any alarms and it's happened to me several times, I've even had a couple of nights when I was hypo more or less all night. It's also quite likely that having the hypo would wake him up - that happens to me much more often.

So while you should keep trying to prevent the hypos and should keep treating them as soon as they happen, just in case (because they can be dangerous), do try not to worry too much about the worst case scenario.

Oh - one more thought - is he testing his blood sugar with a meter whenever the Libre says he's hypo? Libre sensors are a bit variable, they're not always that accurate, especially at the low and high ends of the scale. I wouldn't rely on one telling me I was hypo, I'd always test as well.

Thankyou for your very helpful reply, its most appreciated. Especially the reassurance about the hypos. Its just the sensor we are using. They haven't said otherwise, just if alarm goes off treat with 4 jelly babies or 4 glucose tablets Or two biscuits. Then wait 30 mins and test again

 

[Inka]

Thankyou for your very helpful reply, its most appreciated. Especially the reassurance about the hypos. Its just the sensor we are using. They haven't said otherwise, just if alarm goes off treat with 4 jelly babies or 4 glucose tablets Or two biscuits. Then wait 30 mins and test again

@Mafanwy Are you saying you don’t fingerprick at all or just that you don’t do it at night to confirm a hypo? The Libre is an add-on to fingerpricking and low, high and ‘rogue’ results should always be confirmed with a fingerprick.

Sorry about all the stress (and expense) you’re having because of the Libre phone app. Rest assured though that the Libre is a very recent invention. For decades and decades prior to that (and other such devices) people on insulin have slept through the night ok. I’ve been diabetic 30 years and only had the Libre for one of those years. Hypos will wake him or you. All Libre hypos need confirming as it sometimes says you’re hypo when you’re not.

The insulin he’s on is a medium-acting basal/background insulin. If he continues to have hypos (check the nighttime ones are actually hypos), then there are a number of other insulins and insulin regimes he could go on. It might be he’s better off with less of the Humulin i (it’s the letter ‘I’ not the number ‘1’) and small amounts of a shorter acting insulin to cover his food.

Don’t worry so much about the Libre, focus on the insulin/carbs side of things and his diabetes in general. It will get easier. xx

 

[Leadinglights]

When people have other health issues as well as diabetes it is very difficult to balance everything as everything interacts to cause erratic outcomes.
But I would emphasise the need to be testing with a blood glucose monitor and fingerprick tests as this will be more reliable than the Libre at extremes of the range, lows showing on the Libre can be caused by compression on the sensor when lying on it in the night so the temptation is then you over treat the 'hypo' which then rebounds into a high level.
Treatment of the hypo should also be checked with a finger prick as the level shown on Libre is behind what is actually happening so again you could then overtreat as you assume it has not worked.
You definitely need more help from the diabetic team.
There is an on-line course BERTIE which may help you with the carb counting aspect.
You have had some good suggestions which I hope will help you have better nights.

 

[TheClockworkDodo]

@Mafanwy I hope you've been able to get in touch with a DSN today. Your husband really should have been given a glucose testing meter now he is on insulin and not just a Libre - the Libre is great for seeing general trends in blood sugar but it's not accurate enough to rely on it alone for things like hypos and hypers.

If he hasn't been given a meter by the NHS and you don't want to wait for them to sort it out and provide him with one, there's information on this links page about how/why to test with one and about the best ones to buy (I know you're not new to diabetes, but some of the info may be new to you as it seems you haven't been told very much by your surgery and hospital) - https://forum.diabetes.org.uk/board...for-people-new-to-diabetes.10406/#post-938458

The meters themselves are not very expensive, but the test strips are, so the meters recommended in the link are the ones with the cheapest test strips - and make sure you get extra test strips, you will run out very quickly. The NHS really should be providing these free for anyone on insulin though, so hopefully getting your own should just be a temporary measure.

I would always test with a meter whenever I feel hypo or hyper or my Libre says I'm hypo or hyper, just to check. I've had faulty Libre sensors which read 3mml/L above or below my meter reading, and a couple of sensors which just started reading LO all the time when I wasn't hypo at all.

I thought after I posted before, one thing to make sure is that your husband avoids alcohol in the evening until he has got these night-time hypos sorted out (assuming they really are hypos and not just inaccurate Libre readings). The liver is not good at multi-tasking, apparently, so if it is processing alcohol it will not be releasing its stored glucose, so even quite carby alcohol can lead to hypos.

 

[Bloden]

How frustrating @Mafanwy! It sounds like you’ve been let down on all fronts. I hope, with the info you’ve got from the forum, things improve for you asap. Keep us posted.

 

[everydayupsanddowns]

Sorry to hear about the difficulties you’ve been having with Libre @Mafanwy

Hope you can get access to a meter and strips as a back-up without too much faff, and that a tweaked insulin dose reduces your husband’s hypo risk.

It’s a bit complicated when you have multiple treatments working with a combination of insulin and oral meds. When is he taking the Humulin I? It might be easier to take it in the mornings so that its activity is beginning to fade overnight? Perhaps something to ask the next time you speak to your nurse.