Passing out, newly diagnosed type 1

KK123

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My Libre is often out in both the higher or lower ranges, even though I calibrate it on X-Drip. I think the DAFNE advice of not relying on the Libre to dose insulin is sound. Restricting testing stripes sounds like they don't understand the limitations of the Libre.

Yep, I'm going to raise the issue with my team. It was the DAFNE course that told me this though. x
 
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EllieM

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Selling the MiaoMiao idea to my wife isn't going to be as easy as I first thought, we talked this morning and she didn't seem in favour, she took a few readings through the night, all reasonable, in the 7-9 range, but this morning she looked at the libre graph and noticed she'd dropped to 3 sometime in the night before returning to good levels, and that is a very regular thing, from memory I'd say that happens 60-70% of the time, though today we'll have a look through the history (and the detailed diary) to see if we can see any kind of pattern.

Be aware that the libre is notorious for under reading at night, something to do with lying on the sensor. The 3 reading probably wasn't as low as you think and it's very reassuring that her liver was able to pump out sugar to make it rise up from that level.

I still think that sorting out her hormonal levels (thyroid etc) will make her diabetes much easier to handle. I also agree with @DCUKMod that she needs to come to the forums herself to be encouraged to take any of this advice. Your support is awesome but she will be a lot better off if she can take ownership of her illness. An issue with T1 is that we are all slightly different and although doctors can advise (particularly for those with non standard metabolisms) in the long run you have to learn your own body and learn how to manage this condition for yourself.

But modern technology, in particular cgms such as the libre, is marvellous, and I'm speaking here as someone who became T1 more than ten years before glucometers were invented.

Good luck.
 
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WorriedPartner

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To be clear, I'm not for an instant suggesting you ignore all that's going on with your wife, however, it is her diabetes, her health and her life. She has to be a the centre of it all, and at the moment, I'm reading you as being at the epi-centre with your wife reluctantly tagging along.

Of course, I could be wrong in that assessment, but if changes need to be made to diet, dosing, exercise, technology or whatever (not saying they do, just citing those things), then your wife has to believe she's changing for a good and reasonable reason. Without that buy-in from her, you are on a fool's errand (term, not calling you a fool).

This is no doubt a difficult conundrum, but if your wife was a member here, and/or reading the input by others living with diabetes, she might feel a bit more inclined to buy in to whatever needs to happen.

I have spent many, many moons working in Change (personal, corporate and cultural), and if there's no buy-in, any change will not be sustained, and often the bounce back goes to a point worse than the starting point.

I know. I'm a horrible person, but it is what I read, from the posts and comments you have made.
You're absolutely not a horrible person, and I can understand why you say all that you do.

My wife had previously been in an abusive marriage where she was almost a prisoner, and that was an improvement on her childhood, I've always been aware that even though my intentions have always been good, there's the risk she becomes my prisoner if she isn't making her own decisions and becoming more confident and independent.

The truth is, my wife would have been lost in this thread from about post 3, she struggles with the whole bigger picture, and would give up if she didn't understand what was being said, I do a live-in care job for 3 days each week and have a lot of time to research things that people tell me, I will then sit with my wife and hopefully explain everything in a way she understands, she will then telephone her diabetes team and discuss things further, of course I read things here and come to my own conclusions about what might work, but I'm no expert and will go along with whatever the diabetes team recommend, however, I believe 100% that anything my wife tries can only work if she has belief in what she's doing, and she's lost a bit of confidence in the diabetes team, so it's a very difficult balancing act.

The 'selling' and 'buying in' comments are probably not appropriate and I can understand how they ca easily be taken the wrong way, it's just the way I talk.
 
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DCUKMod

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You're absolutely not a horrible person, and I can understand why you say all that you do.

My wife had previously been in an abusive marriage where she was almost a prisoner, and that was an improvement on her childhood, I've always been aware that even though my intentions have always been good, there's the risk she becomes my prisoner if she isn't making her own decisions and becoming more confident and independent.

The truth is, my wife would have been lost in this thread from about post 3, she struggles with the whole bigger picture, and would give up if she didn't understand what was being said, I do a live-in care job for 3 days each week and have a lot of time to research things that people tell me, I will then sit with my wife and hopefully explain everything in a way she understands, she will then telephone her diabetes team and discuss things further, of course I read things here and come to my own conclusions about what might work, but I'm no expert and will go along with whatever the diabetes team recommend, however, I believe 100% that anything my wife tries can only work if she has belief in what she's doing, and she's lost a bit of confidence in the diabetes team, so it's a very difficult balancing act.

The 'selling' and 'buying in' comments are probably not appropriate and I can understand how they ca easily be taken the wrong way, it's just the way I talk.

There's surely nothing to stop you and your wife reading the thread together, and where necessary, asking for clarification of discussing it?

It could be said that you being on forum, then going back to her with a raft of suggestions could be construed as controlling?

I'm not there, so I could never make any form of balanced judgement, but if your wife is resistant to suggestions for, for example, the MiaoMiao (MM), where readings can go to your phone, as well as hers, could it be she doesn't want to be tagged, controlled or supervised in that way?

Alternatively, there are quite a few people, especially nearer the beginning of their lives with diabetes, just don't like being connected to anything. Some feel the same about insulin pumps. It just goes to shew how different we are.

What would happen if you backed off and left it to her to organise and "protect" herself?

Did you buy the MM, or have you just been discussing it with her?
 

WorriedPartner

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There's surely nothing to stop you and your wife reading the thread together, and where necessary, asking for clarification of discussing it?
That's exactly what we'll do, I don't want to push my opinions, but to show her what other's have said, however, do you realise how many abbreviations are used on forums like this?, then there's many helpful posts that assume you understand some of the terms being used, I didn't, my wife wont, so I get to know what they all mean, and how they can impact positively or negatively, and how relevant they might be to her unique situation, then when we do sit down to read the thread we don't have endless pauses to try to understand what's being said.

It could be said that you being on forum, then going back to her with a raft of suggestions could be construed as controlling?

It could, it's a fine balancing act, every day, every day.

if your wife is resistant to suggestions for, for example, the MiaoMiao (MM), where readings can go to your phone, as well as hers, could it be she doesn't want to be tagged, controlled or supervised in that way?
I'd not thought about it that way, her concern is that she'll be woken up must nights, my concern is that she'll switch it off as a result.

What would happen if you backed off and left it to her to organise and "protect" herself?
She'd feel abandoned, she's a little too reliant on me at times, and as i said earlier, that potentially makes her my prisoner, she's become much more confident and independent when things are going well, but the hypos and the passing out have smashed her confidence, and now she sometimes feels I'm not supporting her enough when I go off to work for 3 days, she's extremely slowly regaining some confidence now we've stopped the passing out for the last 6 weeks.

Did you buy the MM, or have you just been discussing it with her?

No, I haven't bought it, it's her decision, if I had my way at the very least I'd have bought it, and the smartwatch (for the vibrate alarm), and we're both in low paid jobs and had better years financially.
 

KK123

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Hi @WorriedPartner, well it all serves as a reminder that there are many different personalities that find themselves having to cope with (in this case) type 1 diabetes. It's a struggle in and of itself and when first diagnosed it can be overwhelming for the most 'together' of us all never mind for those who may have a history of other issues. I think we forget sometimes what a horrible lifelong disease this is with all the management that goes with it from which you can never switch off, not for a moment really. It does get easier with time mostly but your wife's current situation sounds highly stressful and I'm not sure that right now, she would be able to cope with a 'there you go, it's entirely over to you' situation if she has become used to relying heavily on you up to now. None of us have the answers and all I can say is to carry on trying to help your wife in as balanced a way as you can because SHE will have to manage it herself eventually and to a larger extent, as you know. How would you describe her current attitude to this (apart from her understandable concern about falling to the ground!), is she showing an interest in the management and intricacies of it all? x
 

DCUKMod

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That's exactly what we'll do, I don't want to push my opinions, but to show her what other's have said, however, do you realise how many abbreviations are used on forums like this?, then there's many helpful posts that assume you understand some of the terms being used, I didn't, my wife wont, so I get to know what they all mean, and how they can impact positively or negatively, and how relevant they might be to her unique situation, then when we do sit down to read the thread we don't have endless pauses to try to understand what's being said.



It could, it's a fine balancing act, every day, every day.


I'd not thought about it that way, her concern is that she'll be woken up must nights, my concern is that she'll switch it off as a result.


She'd feel abandoned, she's a little too reliant on me at times, and as i said earlier, that potentially makes her my prisoner, she's become much more confident and independent when things are going well, but the hypos and the passing out have smashed her confidence, and now she sometimes feels I'm not supporting her enough when I go off to work for 3 days, she's extremely slowly regaining some confidence now we've stopped the passing out for the last 6 weeks.



No, I haven't bought it, it's her decision, if I had my way at the very least I'd have bought it, and the smartwatch (for the vibrate alarm), and we're both in low paid jobs and had better years financially.

In no particular order:

- Silences can generate thought and conversation. Those period of thought and discussion might help you you and your wife work out a few things - 2 minds better than one, and all that.

We all started not understanding anything, but the only way to progress is to push the comfort zone, and ask questions, or build a strong relationship with Dr Google.

Alternatively, she just might find it helpful. Not trying something means it will not help. Even if the data wasn't immediately helpful to you both, it could be gold dust to her team. They can be pretty good at spotting patterns or triggers.

Obviously, I appreciate there can be financial constraints and pressures, but what price health and peace of mind?

At the end of the day, your wife will have to become independent in her management, or she will be rendered a recluse at best. For most couples being together 24/7 isn't fully desirable. I adore my other half, but I'm also quite happy when he's gone off to play golf, or sailing for a few days (or weeks!).

Anyway, I'll remove myself from the discussion for now, as I don't want you to feel I am harassing you, but you can tell, I do have concerns. They are genuine.
 

WorriedPartner

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Hi @WorriedPartner, well it all serves as a reminder that there are many different personalities that find themselves having to cope with (in this case) type 1 diabetes. It's a struggle in and of itself and when first diagnosed it can be overwhelming for the most 'together' of us all never mind for those who may have a history of other issues. I think we forget sometimes what a horrible lifelong disease this is with all the management that goes with it from which you can never switch off, not for a moment really. It does get easier with time mostly but your wife's current situation sounds highly stressful and I'm not sure that right now, she would be able to cope with a 'there you go, it's entirely over to you' situation if she has become used to relying heavily on you up to now. None of us have the answers and all I can say is to carry on trying to help your wife in as balanced a way as you can because SHE will have to manage it herself eventually and to a larger extent, as you know. How would you describe her current attitude to this (apart from her understandable concern about falling to the ground!), is she showing an interest in the management and intricacies of it all? x

After diagnosis she struggled, she built her hopes up that it would be type 2, she's the kind of person who would have got herself out of it by diet and exercise, but she went downhill when it was confirmed type 1, from then she slowly improved, she was doing really well, felt supported (by diabetes team), and with well spaced out appointments she was gaining a good understanding, then come lockdown and increases in passing out, she had 8 incidents in 2 months, and 3 hypos, it really shattered her confidence, she was constantly living in pain from the falls, but as I said earlier, there's hope since we upped her target numbers and hasn't passed out for 6 weeks.



Obviously, I appreciate there can be financial constraints and pressures, but what price health and peace of mind?
That's my point all the time, £320 to get warnings and potentially save her from a serious hypo, then there's the slight boost in confidence, that's priceless, but she feels guilty no matter what I say, and it has to be her decision.

At the end of the day, your wife will have to become independent in her management, or she will be rendered a recluse at best. For most couples being together 24/7 isn't fully desirable. I adore my other half, but I'm also quite happy when he's gone off to play golf, or sailing for a few days (or weeks!).
She'll never become a recluse, she's got a lot of friends, and she works in a corner shop where everyone loves her, she's a bundle of energy who hides her fears very well.

Anyway, I'll remove myself from the discussion for now, as I don't want you to feel I am harassing you, but you can tell, I do have concerns. They are genuine.

I don't feel harassed, I'm a little confused as to what I'm doing wrong, I always wish there was more I could do, and I get some time at the weekend, so using that time to see if other people have had similar problems or have ideas that may help.
 

Jaylee

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.That's my point all the time, £320 to get warnings and potentially save her from a serious hypo, then there's the slight boost in confidence, that's priceless, but she feels guilty no matter what I say, and it has to be her decision.

If your wife has a compatable phone? Most are these days. I use an old Galaxy Note 4.. An app like xdrip is free.

The Bluetooth bridge depending on MM1 (they slashed the price.) or the mark 2. Or maybe look at the bubble equivalent, would probably cost no more than £130 for the outlay at the most.. (Aproximate pricing from memory.)
 

WorriedPartner

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An update.

Not a good week, my wife passed out again on Tuesday, yet her numbers were ok (8).

Short Synacthen Test (if that's what it was) come back OK.

She tried having a carb free day, first 6 hours were ok, numbers steady between 8 and 8.4, then shot up to 12 then 15 (hours 7 and 8), then down to 13.5 (hour 9) then down to 10 (hour 10), then through the night went down to 5, she was doing no work or exercise. (she'll try again next week).

She's going to try slowly reducing the percentage of carbs in general, but the diabetes team have warned against cutting them out for long periods.

We bought a smart watch, and a MiaoMiao 2, the shop assistant was actually wearing a MiaoMiao 1 and explained to my wife how it had been life changing for him, unfortunately we were unable to get an app to work (spike/xDrip+/Glimp) and will go back to shop next week to see if they can help.

Overall, she's feeling low at the moment, she had to reduce her thyroxine, so feels a little tired, then she started a tablet for her kidneys that makes her feel a bit low, then passing out again has completely knocked her confidence.

Someone suggested that she could have a condition known as 'brittle diabetes', when we researched brittle diabetes it seemed to match her symptoms, but we won't assume anything yet, we'll get the MiaoMiao working and keep a very detailed diary and keep fingers crossed that we get to see a specialist soon.
 

Rokaab

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Not a good week, my wife passed out again on Tuesday, yet her numbers were ok (8).

To be honest that does not sound diabetes related.
I don't know what it would be, but passing out when her numbers were 8 is not caused by a hypo.
 

DCUKMod

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An update.

Not a good week, my wife passed out again on Tuesday, yet her numbers were ok (8).

Short Synacthen Test (if that's what it was) come back OK.

She tried having a carb free day, first 6 hours were ok, numbers steady between 8 and 8.4, then shot up to 12 then 15 (hours 7 and 8), then down to 13.5 (hour 9) then down to 10 (hour 10), then through the night went down to 5, she was doing no work or exercise. (she'll try again next week).

She's going to try slowly reducing the percentage of carbs in general, but the diabetes team have warned against cutting them out for long periods.

We bought a smart watch, and a MiaoMiao 2, the shop assistant was actually wearing a MiaoMiao 1 and explained to my wife how it had been life changing for him, unfortunately we were unable to get an app to work (spike/xDrip+/Glimp) and will go back to shop next week to see if they can help.

Overall, she's feeling low at the moment, she had to reduce her thyroxine, so feels a little tired, then she started a tablet for her kidneys that makes her feel a bit low, then passing out again has completely knocked her confidence.

Someone suggested that she could have a condition known as 'brittle diabetes', when we researched brittle diabetes it seemed to match her symptoms, but we won't assume anything yet, we'll get the MiaoMiao working and keep a very detailed diary and keep fingers crossed that we get to see a specialist soon.

When did your wife reduce her thyroxine, and what did she reduce it from, to? Who told your wife to make the reduction?
 

WorriedPartner

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When did your wife reduce her thyroxine, and what did she reduce it from, to? Who told your wife to make the reduction?
Doctor told her to reduce, the following is from my first post

Some additional info in case it means anything to someone, she's got an under-active thyroid, she was steady for many years, her medication was at 75, then early last year she started to need a higher dose, up to 100, then 125, then 150, then 175 (about Feb this year), then suddenly last week they've told her to reduce it to 150,

To be honest that does not sound diabetes related.
I don't know what it would be, but passing out when her numbers were 8 is not caused by a hypo.

We've always seen the hypos and passing out as 2 very different things, she gats all the usual warnings before a hypo, but not even a fraction of a second warning before passing out, we'd always known she was 5 - 6 immediately after passing out, this is the first time she's been so high.

Needless to say, yet again, we're still waiting for the hospital specialists to call and tell us if the passing out coincided with any changes to her heart function, she had a thing put in her chest, after she passes out she presses a button, it registers and sends the department the saved heart data, first 2 times they said her heart had been normal and not caused the passing out, since then they don't bother contacting her, we can only leave a message on an answer machine, they promise to get back to us 'today', 3 messages each time, and a message left by the doctor, but they don't get back to us.
 

MarkMunday

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... this morning she looked at the libre graph and noticed she'd dropped to 3 sometime in the night before returning to good levels, and that is a very regular thing, from memory I'd say that happens 60-70% of the time, ...
Be aware that dropping low (below 3.5) at night causes a rebound effect with high blood glucose the next morning. Getting and keeping it down in .he target range often requires large amounts of correction bolus insulin. It contributes to that so-called roller coaster effect. Perhaps the first trick in stabilising blood glucose is getting it to stay in the target range overnight.
 

hh1

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An update.

Not a good week, my wife passed out again on Tuesday, yet her numbers were ok (8).

Short Synacthen Test (if that's what it was) come back OK.

She tried having a carb free day, first 6 hours were ok, numbers steady between 8 and 8.4, then shot up to 12 then 15 (hours 7 and 8), then down to 13.5 (hour 9) then down to 10 (hour 10), then through the night went down to 5, she was doing no work or exercise. (she'll try again next week).

She's going to try slowly reducing the percentage of carbs in general, but the diabetes team have warned against cutting them out for long periods.

We bought a smart watch, and a MiaoMiao 2, the shop assistant was actually wearing a MiaoMiao 1 and explained to my wife how it had been life changing for him, unfortunately we were unable to get an app to work (spike/xDrip+/Glimp) and will go back to shop next week to see if they can help.

Overall, she's feeling low at the moment, she had to reduce her thyroxine, so feels a little tired, then she started a tablet for her kidneys that makes her feel a bit low, then passing out again has completely knocked her confidence.

Someone suggested that she could have a condition known as 'brittle diabetes', when we researched brittle diabetes it seemed to match her symptoms, but we won't assume anything yet, we'll get the MiaoMiao working and keep a very detailed diary and keep fingers crossed that we get to see a specialist soon.
@WorriedPartner I was going to suggest brittle diabetes as a reason for the big swings in bg levels; it's a possibility and I agree with those who say that the passing out isn't something I recognise as connected to my T1. It's easy sometimes with something like T1 to attribute all issues to it when it's often quite likely they're not.

It takes time for anyone diagnosed with T1 to work out how best to manage their own diabetes. Another bit of shorthand you may encounter on here is 'ydmd' which stands for 'your diabetes may differ'. And it does, often by a lot. I think anyone starting out with T1 can feel as if they'll never get the hang of it, and be thrown by setbacks. After 35 years I'm still learning and still capable of messing up. It's about accepting there's no such thing as perfect control and when things go wrong, seeing if there's anything to be learned from that then leaving that behind and moving on. I certainly think your wife's situation is beyond the usual and demands input from your diabetes team and an endocrinologist; my comments on dealing with T1 are aimed at reassuring you and her that most of us keep on keeping on whilst living normal lives. I really hope you find answers and solutions as soon as possible, and the more information you can give your diabetes team the better able they'll be to help. Good luck.
 

KK123

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I do hope you manage to find out what is causing this. I think we sometimes make the mistake of thinking EVERYTHING is down to diabetes when for some people (like your wife maybe) there can be so many other things going on. Put it all together and it becomes a nightmare. I think we all know that if you've got another condition or health issue, adding diabetes to the mix affects it all and probably makes it harder to separate the symptoms of one condition from another when diagnosing. x
 

WorriedPartner

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Be aware that dropping low (below 3.5) at night causes a rebound effect with high blood glucose the next morning. Getting and keeping it down in .he target range often requires large amounts of correction bolus insulin. It contributes to that so-called roller coaster effect. Perhaps the first trick in stabilising blood glucose is getting it to stay in the target range overnight.

All makes sense, she's going to need to seek the diabetes team's advice on how to manage the overnight swings, we're struggling to make sense of how the numbers can shoot up or down overnight when she's doing nothing different.


@WorriedPartner It's easy sometimes with something like T1 to attribute all issues to it when it's often quite likely they're not.

Agree totally, she's got other health conditions, and had a lot of unexplained issues last year (didn't find out she had diabetes till start of this year), it seems like we're constantly trying to figure out if undiagnosed diabetes played a part in any of the unexplained issues, when she was coming to terms with having diabetes she would get a headache and think it was linked, it took a while before she accepted that being diabetic doesn't stop unrelated health issues or minor things like headaches.

@WorriedPartner
It takes time for anyone diagnosed with T1 to work out how best to manage their own diabetes. Another bit of shorthand you may encounter on here is 'ydmd' which stands for 'your diabetes may differ'. And it does, often by a lot. I think anyone starting out with T1 can feel as if they'll never get the hang of it, and be thrown by setbacks. After 35 years I'm still learning and still capable of messing up. It's about accepting there's no such thing as perfect control and when things go wrong, seeing if there's anything to be learned from that then leaving that behind and moving on. I certainly think your wife's situation is beyond the usual and demands input from your diabetes team and an endocrinologist; my comments on dealing with T1 are aimed at reassuring you and her that most of us keep on keeping on whilst living normal lives. I really hope you find answers and solutions as soon as possible, and the more information you can give your diabetes team the better able they'll be to help. Good luck.

Despite the wild variations in her numbers, and the passing out, we've got to keep understanding that they may not be related, and it could just be that she's struggling to get her numbers under control, it feels like it's been going on forever, but it's only been 10 months and she started from a very low place, but anyone we chat to just confirms that it can easily be 2 years before getting to a level thats easier to manage.

The libre/miaomiao combination will allow for a lot of trial and error to try to get an better understanding, there will also be a very detailed diary to compare, hopefully we can learn a lot, and at worst, if we just can't get a grip on the numbers, we'll have a lot of data for the diabetes team to consider and see if something like brittle diabetes might be an issue, though initially I think we need to assume that isn't the case and do all we can to try to steady the numbers.
 

WorriedPartner

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I do hope you manage to find out what is causing this. I think we sometimes make the mistake of thinking EVERYTHING is down to diabetes when for some people (like your wife maybe) there can be so many other things going on. Put it all together and it becomes a nightmare. I think we all know that if you've got another condition or health issue, adding diabetes to the mix affects it all and probably makes it harder to separate the symptoms of one condition from another when diagnosing. x
So true, see my last reply.
 
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DCUKMod

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Doctor told her to reduce, the following is from my first post

Some additional info in case it means anything to someone, she's got an under-active thyroid, she was steady for many years, her medication was at 75, then early last year she started to need a higher dose, up to 100, then 125, then 150, then 175 (about Feb this year), then suddenly last week they've told her to reduce it to 150,



We've always seen the hypos and passing out as 2 very different things, she gats all the usual warnings before a hypo, but not even a fraction of a second warning before passing out, we'd always known she was 5 - 6 immediately after passing out, this is the first time she's been so high.

Needless to say, yet again, we're still waiting for the hospital specialists to call and tell us if the passing out coincided with any changes to her heart function, she had a thing put in her chest, after she passes out she presses a button, it registers and sends the department the saved heart data, first 2 times they said her heart had been normal and not caused the passing out, since then they don't bother contacting her, we can only leave a message on an answer machine, they promise to get back to us 'today', 3 messages each time, and a message left by the doctor, but they don't get back to us.

Does your wife have a pre-existing cardiac condition, requiring, say, a pacemaker? (Pre-existing, in this context meaning before diabetes and/or these passing out events)
 

WorriedPartner

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Does your wife have a pre-existing cardiac condition, requiring, say, a pacemaker? (Pre-existing, in this context meaning before diabetes and/or these passing out events)
No, it was thought (by doc) she had angina several years ago and they give her a spray, but she never needed it and about 2 years later they said she no longer needed the spray.