Real worried now so going tech

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Faffer

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Relationship to Diabetes
Type 1
Well it happened again.

About three months ago i came around in hospital after my BG dripped without knowing when i arrived to work. I have been waiting since then for my doctors to refer me to the specialist as the said they `mite` be able to get me a Libra
BTW my BG are excellent, i actually had me check up yesterday and everything was excellent. And that was also meant to be the specialist i was seeing but she wasnt in work ( the wonders of doctors hey )

Any early hours of this morning i woke a home in bed with the paramedics and thankfully my wife around me.

My wife works nights so if she had not been there i could be a gonner.

My biggest concern is for my wife as she worries like hell for me.

Questions

I need a device now for alarms, i see these monitoring gadgets are expensive at around £100pm there is no way i can afford that so what can i do untill i get to see the specialist ?

Is there a way to get things sorted asap?

And i read all sorts on these BCM gadgets but is there a best one ?

Thank you

Faffer
 
Faffer said:
I need a device now for alarms, i see these monitoring gadgets are expensive at around £100pm there is no way i can afford that so what can i do untill i get to see the specialist ?
Click to expand...
You can get one Libre sensor free https://sample.freestyle.abbott/gb-en/freestylelibre.html

(You'll need a suitable smartphone, but that's likely true for many of these devices.)

Depending where you live, your GP might be happy to prescribe Libre without asking your specialist (since April it's what NICE recommends for all people with Type 1). It does depend a bit on the CCG. There's a small number who are still trying to restrict access (for cost reasons).
 
You obviously need to be seen by the hospital diabetes clinic sooner rather than later - this shouldn't be happening, whether you happen to have a Libre etc or not! There's summat needs adjusting eg either the dose, timing or even brand of basal insulin, or something else.

Have you ever done a 24hour basal insulin test? Have you ever been on a carb counting & dose adjusting course? (have you ever heard of either ....)

Which insulins do you use and when do you inject them?
 
Bruce Stephens said:
You can get one Libre sensor free https://sample.freestyle.abbott/gb-en/freestylelibre.html

(You'll need a suitable smartphone, but that's likely true for many of these devices.)

Depending where you live, your GP might be happy to prescribe Libre without asking your specialist (since April it's what NICE recommends for all people with Type 1). It does depend a bit on the CCG. There's a small number who are still trying to restrict access (for cost reasons).
Click to expand...

Thank you for that. i have registered and waiting to see if i can get one.
 
trophywench said:
You obviously need to be seen by the hospital diabetes clinic sooner rather than later - this shouldn't be happening, whether you happen to have a Libre etc or not! There's summat needs adjusting eg either the dose, timing or even brand of basal insulin, or something else.

Have you ever done a 24hour basal insulin test? Have you ever been on a carb counting & dose adjusting course? (have you ever heard of either ....)

Which insulins do you use and when do you inject them?
Click to expand...
I have been waiting for months now to see them since last hospital visit when i passed out. my nurse yesterday when i went to check up couldnt understand why i hadnt been seen yet so she has sent emails to see whats going on.
I want a device asap for peace of mind now as if this happens again at night i will be alone and will want the alarm notification so atleast it awakens me.
My BG readings are good and always check them, they were the usual last night.
Never done a Basal test and never been told to by anyone in the near 30 years of being Type1. As i have had such good control untill very recently they have said i dont need to unless i want to.

Things must be changing health/body wise now after so long as Typ1 but untill i see a specialist i cant do much.

The Hospital specialist in last visit said to change my Levamir and it messed up my BG big time. Reason i wnagt to see the specialist even more, the hospital nurse wasnt much use at all in help or advice as to what could of caused the drop so fast .

I am on Levamir and Novarapid.

thanks for the advice
 
i hope you get the Libre soon.
However, my concern is your lack of hypo awareness. This maybe something to highlight when you hassle your consultant (yes, you need to really hassle them rather than wait for your nurse to do so).

Whilst I appreciate you are most concerned about night time, I think you should be equally concerned about collapsing when you got to work. I really really hope you are not driving with this lack of hypo awareness because you are not the only person who could end up “a goner” if it happens again.
 
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Does your diabetes clinic have an emergency helpline number? If so, ring that and leave a message with your details and that you have had 2 episodes of needing medical help for hypos. That makes you a priority for them to deal with your problem and give you some support.

You keep saying your BG is good. Do you mean your BG or your HbA1c results? Obviously BG readings are just a moment in time, so they only tell you what your reading is at that moment. The problem with HbA1c is that it is an average of your readings over about 3 months and on a day by day, moment by moment basis and the highs and the lows can cancel themselves out and make it appear that your diabetes management is good when actually it isn't. So you might have reasonably good readings all day, perhaps spiking quite high after meals but coming down again, but then be dropping into a slight hypo every night and gradually that can erode your hypo awareness until you no longer notice you are hypo and lose consciousness. Have you ever set an alarm and woken up through the night to check your levels?

How long have you been on Levemir and when was the last time your doses were changed? So many people think that once their basal insulin dose is set, that is it pretty much for ever, but basal needs change all the time and CGM is really highlighting that I think, because it shows you what your BG levels are doing all the time day and night, not just the 4 or 5 times a day when you test and there can be a massive variation in levels in between those finger pricks.

Many of us find that we need less basal insulin in the summer when it is hot and the days are long and perhaps we are more active than in the winter when the days are shorter and it is colder. Some people find that it can be as much as a 30% reduction in the summer compared to the winter. I personally find that I need to tweak my Levemir dose, particularly the night time one, on an almost daily basis depending upon my level of activity and the weather and stress levels. There are a lot of factors which have an impact. Having Libre sensors really enables you to see when these changes are needed and will obviously indicate if you are regularly hypoing through the night as well as hopefully wake you up in order to prevent them. The key is to identify the problem and fix it. Obviously, at the moment, you haven't yet got sensors, so I would recommend setting at alarm for say 2am and checking your levels for a few nights and obviously topping them up if they are low and reducing your evening Levemir if this is happening to prevent reoccurrence.
Please ensure you keep testing kit and hypo treatments by the bed so they are easily to hand without needing to get out of bed.

Hopefully you will get your free trial Libre sensor soon. It would be a good idea to enroll in the Libre Academy and work through the learning modules so that you have a good understanding of it before you use it as it has limitations and foibles and there are times when you still need to finger prick, so important to learn more about it whilst you are waiting.
It is a really game changing bit of kit but it can be a bit shocking at first to see what your levels are doing between those 4 or 5 moments in time when you have been finger pricking each day.
 
Which is why I asked whether you've ever done basal testing - because you are required to test much more often during the hours when you're doing this testing, you already learn more about what your body's doing at times when you usually wouldn't test. It's simply a (very) watered down version of a CGM and what we had to use anyway before CGMs became portable.
 
helli said:
i hope you get the Libre soon.
However, my concern is your lack of hypo awareness. This maybe something to highlight when you hassle your consultant (yes, you need to really hassle them rather than wait for your nurse to do so).

Whilst I appreciate you are most concerned about night time, I think you should be equally concerned about collapsing when you got to work. I really really hope you are not driving with this lack of hypo awareness because you are not the only person who could end up “a goner” if it happens again.
Click to expand...
I have a Libra 2 coming now, all been accepted for the two week free trial though. Thanks to @Bruce Stephens 🙂

I am not driving, definatly not untill this is sorted out and i am a driver at work. I asked to be put on site and they said no problem so atleast work are helping a little.
The time i passed out at work i knew my BG so getting low a good half before and tried to amend it with glucose etc. but it didnt work enough. All was good before i set off aswell, BG levels all good, the norm as every morning. Last night i was asleep and my wife found me fitting etc. So only once have i not known about low levels.
I am going to call the Diabetic clininc on Monday and the doctors and tell them in hope they rush it through. They are not the fatsest, as saod i hav been waiting to see the diabetic specialists for months now.
 
rebrascora said:
Does your diabetes clinic have an emergency helpline number? If so, ring that and leave a message with your details and that you have had 2 episodes of needing medical help for hypos. That makes you a priority for them to deal with your problem and give you some support.

You keep saying your BG is good. Do you mean your BG or your HbA1c results? Obviously BG readings are just a moment in time, so they only tell you what your reading is at that moment. The problem with HbA1c is that it is an average of your readings over about 3 months and on a day by day, moment by moment basis and the highs and the lows can cancel themselves out and make it appear that your diabetes management is good when actually it isn't. So you might have reasonably good readings all day, perhaps spiking quite high after meals but coming down again, but then be dropping into a slight hypo every night and gradually that can erode your hypo awareness until you no longer notice you are hypo and lose consciousness. Have you ever set an alarm and woken up through the night to check your levels?

How long have you been on Levemir and when was the last time your doses were changed? So many people think that once their basal insulin dose is set, that is it pretty much for ever, but basal needs change all the time and CGM is really highlighting that I think, because it shows you what your BG levels are doing all the time day and night, not just the 4 or 5 times a day when you test and there can be a massive variation in levels in between those finger pricks.

Many of us find that we need less basal insulin in the summer when it is hot and the days are long and perhaps we are more active than in the winter when the days are shorter and it is colder. Some people find that it can be as much as a 30% reduction in the summer compared to the winter. I personally find that I need to tweak my Levemir dose, particularly the night time one, on an almost daily basis depending upon my level of activity and the weather and stress levels. There are a lot of factors which have an impact. Having Libre sensors really enables you to see when these changes are needed and will obviously indicate if you are regularly hypoing through the night as well as hopefully wake you up in order to prevent them. The key is to identify the problem and fix it. Obviously, at the moment, you haven't yet got sensors, so I would recommend setting at alarm for say 2am and checking your levels for a few nights and obviously topping them up if they are low and reducing your evening Levemir if this is happening to prevent reoccurrence.
Please ensure you keep testing kit and hypo treatments by the bed so they are easily to hand without needing to get out of bed.

Hopefully you will get your free trial Libre sensor soon. It would be a good idea to enroll in the Libre Academy and work through the learning modules so that you have a good understanding of it before you use it as it has limitations and foibles and there are times when you still need to finger prick, so important to learn more about it whilst you are waiting.
It is a really game changing bit of kit but it can be a bit shocking at first to see what your levels are doing between those 4 or 5 moments in time when you have been finger pricking each day.
Click to expand...
Sorry i mean my Hba1c and 6 daily BG checks. Daily can be a bit high by a few units but nothing major and i sort that out easy enough. Hba1c has been great for years.
I am reading up n these Libra`s now as i have the free two week trial coming soon. My god they sound complex ha ha. For a techphobe lol.
I have always had a test kit with me, at work in the car and at home. Aswell as a few packets of Glucose tabs.
I am looking forward though as you say, to the actual more indepth look at how my levels are with the Libra.

All i am going t o do for now is ensure my BG levels are a bit higher than normal before i go t bed while i get the Libra. And meither the hell out of the doctors and clinic.

Thanks for the input. its worrying now but soon get it sorted and see whats going on. It does bother me a little if/when they change my dosing and how that will effect Hypo`s. I change the Levemir and Novorapid myself as its needed. Levemir rarely really as always been good, only if its a bit higher than usual at night.
 
I am a technophobe but I absolutely love my Libre. It has made my diabetes management more of a game than a serious health condition. The "time in range" function is what most clued up consultants look at these days as that shows if you are having lots of highs and lows rather than HbA1c which just becomes an average of the highs and lows and therefore can look good when in effect your levels are up and down a lot. My goal is to try and stay between 3.9 and 10 all day and night. That may seem not too difficult to someone who is used to finger pricking but when you start to see how high your levels spike after you eat, you will start to realize how tricky it is. If you can maintain 70% or more time within that range and not be below more than 3% of the time they will be happy. I can consistently maintain high 80%s to low 90%s most of the time but every now and then when things are going well I can push it up to 96-97% time in range and then I make a real effort as I try to get a new personal best of 98% Some days I can manage 100% in range (a unicorn day) but I am working on the 7 day figures for my personal best results.... Maybe I sound a bit obsessive, but I have lots of other interests in my life, this is just a bit of a side challenge rather than it being a chore to manage my diabetes. Hopefully that will make sense when you get it and start using it.

Do come back to us for tips and suggestions when you get it as it can be a bit daunting at first.
 
rebrascora said:
I am a technophobe but I absolutely love my Libre. It has made my diabetes management more of a game than a serious health condition. The "time in range" function is what most clued up consultants look at these days as that shows if you are having lots of highs and lows rather than HbA1c which just becomes an average of the highs and lows and therefore can look good when in effect your levels are up and down a lot. My goal is to try and stay between 3.9 and 10 all day and night. That may seem not too difficult to someone who is used to finger pricking but when you start to see how high your levels spike after you eat, you will start to realize how tricky it is. If you can maintain 70% or more time within that range and not be below more than 3% of the time they will be happy. I can consistently maintain high 80%s to low 90%s most of the time but every now and then when things are going well I can push it up to 96-97% time in range and then I make a real effort as I try to get a new personal best of 98% Some days I can manage 100% in range (a unicorn day) but I am working on the 7 day figures for my personal best results.... Maybe I sound a bit obsessive, but I have lots of other interests in my life, this is just a bit of a side challenge rather than it being a chore to manage my diabetes. Hopefully that will make sense when you get it and start using it.

Do come back to us for tips and suggestions when you get it as it can be a bit daunting at first.
Click to expand...
I used to be like you many years ago when i first diagnosed with Type1. I actually enjoyed working on getting levels perfect, not easy and got fed up of finger pricking, the reason it sloped off a bit.

And yes, ill be back probably with an update of question and help with these these gadgets. I applied for one many years ago but as i was/am in good control they refused to give me one. Like most new things though, once out there and catch on they get offered around more to help and reduced cost overtime.
 
I dont know why i bother,
I have been waiting for a week now for a `diabetic specialist` to get back to me as the Doctors said they have sent for a phone consultation. Well she called and it was just the doctors diabetic nurse who can do nothing for me as all they can do is refer me to the specialists. I got there number off them and there has been no answer all morning and just a answer phone to ask to be contacted.

It has been i think 8 weeks now since they have had the refferal.

On a good note I have had the Libra 2 now for seven days and has been great, a little annoying at times as there are a lot of Scan Errors or just nothing happening. It is good though as the alarms work great which is why i need one untill i sort why my BG level have gone all over.

I am just keeping my sugars high now around 10-12. It to much a worry now to go to sleep and not wake up again, although i have the Libra if i dont get one on prescription in next few days i am without one.

Mite have to spalsh out and buy my wn
 
Faffer said:
It to much a worry now to go to sleep and not wake up again,
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I must admit getting Libre (the original non-alarm version) completely reassured me on that because I could see the graph overnight, so I knew once I got the night time basal dose reasonably right I was OK overnight. Are you finding more of a variation from day to day causing you still to be worried?
 
Hi @Faffer

Sounds like you're really being let down by the hospital. Two suggestions would be to contact the complaints department at the hospital (or might be the PALS - Patient Advice and Liaison Service), and also directly contact the practice manager at your GP - they might another line of attack.

All the best.
 
Bruce Stephens said:
I must admit getting Libre (the original non-alarm version) completely reassured me on that because I could see the graph overnight, so I knew once I got the night time basal dose reasonably right I was OK overnight. Are you finding more of a variation from day to day causing you still to be worried?
Click to expand...

I am yes, day to day its been nothing like ever before. drops fast and hard to get back up. It can drop from 12 to 3 in less than 30 mins and after a meal with less than half the novarapid i usually have. And i have dropped my Levemir from 22 to 16.
I feel so much better using it, well safer/confident if you know what i mean.

I have decided after today to just keep it above 10 all day.

I spoke to the specialists at last today but they have just given me an appointment to see them in two weeks. They refused to put a Libra on my script.
 
Rob Oldfield said:
Hi @Faffer

Sounds like you're really being let down by the hospital. Two suggestions would be to contact the complaints department at the hospital (or might be the PALS - Patient Advice and Liaison Service), and also directly contact the practice manager at your GP - they might another line of attack.

All the best.
Click to expand...
The Doctors have done all they can and just refer me, so they say, the diabetic nurse called me, i was expecting the specialist to but nope, so doctors got it wrong again as they said the specialst will be calling me, not the nurse.

I got a call from the Diabetic specialists at last, but they will not do anything untill i go and see them in two weeks.

I told them the problem and still was not interested in that i was seriously concerned. all she said was to reduce my Levemir bit by bit. i said if i do and it does not work then i can still go into hypo while asleep. She said to do a finger prick test.........while i am asleep, i said.

Reason i give up. ill just go with the flow and hope they let me have a Libra next week and ill sort myself out as i have always done. If they dont i dont have a clue what to do but keep sugars high for now then increase Levemir bit by bit untill i sort it out.

In 28 years i have had little need for there help, maybe thats what they dont like to keep there numbers up.

Thanks for the reply.
 
Please make a list of the things you need to tell them - Hypos not waking you during the night is a definite one - obviously if they woke you yes of course you would test - I know that cos you certainly don't seem to be a complete idiot - BUT the hospital clinic don't know that, yet, do they? 😉 All they know is you can absolutely never make assumptions about anybody, so they will assume you know very little until you're able to persuade them otherwise by showing what you DO know. (Does that make sense?)
 
trophywench said:
Please make a list of the things you need to tell them - Hypos not waking you during the night is a definite one - obviously if they woke you yes of course you would test - I know that cos you certainly don't seem to be a complete idiot - BUT the hospital clinic don't know that, yet, do they? 😉 All they know is you can absolutely never make assumptions about anybody, so they will assume you know very little until you're able to persuade them otherwise by showing what you DO know. (Does that make sense?)
Click to expand...
They know about the two pass outs and fittings and also when i passed out and not realised, the one when luckily my wife was there as not working nights.
I told them everything and they dont seem to understand, well listen. That is why as soon as they, and better, give a me a Libra i am not bothering again with them. Just Docs for the Hba1C.
If it takes ten weeks to get to see them with something serious what use are they.
 
It sounds like you're being messed about by both the hospital team (who are, I'm sure, overstretched, and quite possibly two weeks is as fast as they can offer anyone) and your GP surgery (who are similarly probably understaffed and overstretched).

It still feels like someone ought to be able to do the simple thing of giving you a prescription for Libre 2 which will obviously help you. I think it's worth contacting Partha Kar, drparthakar@gmail.com since the situation looks so silly: you're having problems and there's this one simple thing which will immediately help. (Quite likely there are other things the hospital team will suggest when you see them, but Libre 2 is surely going to be part of what they suggest anyway.)

https://twitter.com/x/status/1542804016324911104
 
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