Passing out, newly diagnosed type 1

[WorriedPartner]

My wife is 52, a size 14 dress (don't know weight), 10 months ago she was rushed into intensive care, her blood sugar was close to 30, but her keytones was 7.0, we found out she was type 1 diabetic, it's fair to say she's struggled with diabetes since.

She's actually been passing out since early last year, probably 7 months before she realised she was diabetic, she has not even a fraction of a second warning, no ill feeling, no dizzyness, she can be standing, sitting, and most times not even tired or stressed, she just wakes up on the floor, it's happened 14-15 times now, it's a miracle she hasn't suffered a serious injury.

Needless to say she's had dozens of tests, she even had a thing put inside her chest to monitor her heart as they couldn't find the cause, it wasn't her heart, we're convinced it's to do with sudden drops in her blood sugar levels, but struggling to get the diabetes team to look into it further, I'll give you a few examples of her wildly varying BS levels in a moment, first a little background.

The passing out was every 3-4 months, then early this year it was happening monthly, then a couple of months ago it was happening at least every week, around this time she had a Libre put in her arm, we'd always assumed it was nothing to do with her BS because we'd test her BS after she come round and it was always 5-6, but once the Libra was put in we could see that her numbers had dropped before returning to 5-6, but away from the passing out we began to notice something very odd in her BS readings.

At least 7 or 8 times a week her BS can drop or rise extremely quickly, and completely going against everything we understand about controlling your levels, she had a very bad weekend 5 weeks ago, to make matters worse I was away working (as I am every weekend), her numbers suddenly dropped (I think 9 down to 2.2), so she went downstairs to get some sweet things, she really hasn't got a sweet tooth so tries to space them out, she ate some sweets then done the washing up waiting to eat more sweets, but instead she passed out, before that she'd had a relaxing morning with a small breakfast, she come round, later she noticed her numbers were high (11ish), but knew it was because of the sweets, a couple of hours later she manages to call me, she was obviously having a serious hypo, I had to explain where her sweets were, how to open the packets, and nag her till she'd finished each sweet and swallowed it, then get her to take another sweet.

By now she was starting to think the fast acting insulin was linked to the passing out and hypos and I had a tough time getting her to eat anything as she was scared to take insulin before eating, so we come to a decision to go against the advice of the diabetes team, they wanted her target levels between 6 and 9, we decided to aim for 9-12 and adjusted her slow acting insulin accordingly, she went from passing out every 6 days or so to not passing out since. (we've also been keeping a detailed diary since noting insulin taken, weight of food, carb count, any food not eaten weighed, times of exercise or work or rest etc)

We're convinced the diabetes team think she doesn't understand what can make her numbers go down, but we do understand, we do count correctly and have explained over the phone and they agree were doing it right, we bought that wonderful book that tells you the carb content, we also only give her 6 units if the count says 7, just to be sure in case she doesn't eat all the food, she normally does though, we also know she's quite active at work, she doesn't do long shifts but we're fully aware that numbers continue going down for up to a couple of hours after work finishes, she'd also managed to keep the numbers from dropping while working by eating small amount regularly.

Here's just 2 examples from Tuesday and Wednesday this week, on Tuesday she visited a friend, come home at 7pm, I cooked her a small sirloin steak, some new potatoes and green beans, she calculated that she should take 7 units, so took 6, her BS was 11, she was finished dinned by 7:30, then relaxed and went to bed at 9, her BS was 13.2, at 12:20 she was calling me, her arms were completely dead, her BS was 2.2 and she didn't have a clue how to do anything, if 13.2 isn't a safe level to go to sleep on, what is????

On Wednesday she arrived home at lunchtime, her BS was 11, she hadn't eaten since breakfast, she took the dog for a walk, then done about 30 minutes of housework, then took her BS, it was 23, in under 1 hour it had jumped 12 points, and the only things she was doing should have slightly reduced her levels.

It's absolutely crazy, she can't keep having these massive rapid movement in her numbers.

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, also, her Cortisol levels were very low a few weeks ago (170)

Thank you for reading, I feel sure I've missed a lot out, so please ask if any info might help, if anyone has any similar experiences, or any idea what might be happening, I'd really appreciate your input.

 

[MarkMunday]

Sounds like a really difficult situation. Bear in mind the main noise factor complicating treatment decisions is carbohydrate consumption. Matching insulin action with glucose load is difficult at the best of times. Removing that noise factor would simplify the process for her. Moving to a ketogenic diet is worth considering. It retrains the body to use fat for energy, instead of glucose from carbohydrate. Establishing required insulin dosage (mostly basal) becomes much easier. Insulin requirement drops, the number of hypos goes right down and control improves.

 

[KK123]

Gosh, this is a difficult one. I agree with Mark if you've tried everything else. Start from scratch if you like, ie, very low carbs/keto even BUT test, test, test and please do it with the knowledge of your team as it will require adjustments of insulin and monitoring. There is always a chance something else is going on as well so please be careful. x

 

[WorriedPartner]

Sounds like a really difficult situation. Bear in mind the main noise factor complicating treatment decisions is carbohydrate consumption. Matching insulin action with glucose load is difficult at the best of times. Removing that noise factor would simplify the process for her. Moving to a ketogenic diet is worth considering. It retrains the body to use fat for energy, instead of glucose from carbohydrate. Establishing required insulin dosage (mostly basal) becomes much easier. Insulin requirement drops, the number of hypos goes right down and control improves.

Thanks for the reply and info Mark, that's certainly a good idea going forward, but I'd be astonished if that was the reason for the major number movements, and we'd be reluctant to try any change till we find the reason for the changes, and hopefully the reason for the passing out.

The diabetes team had been fantastic, slowly staging each meeting so we'd get a better understanding of everything involved, then lockdown happened and the meetings ended.

 

[KK123]

Thanks for the reply and info Mark, that's certainly a good idea going forward, but I'd be astonished if that was the reason for the major number movements, and we'd be reluctant to try any change till we find the reason for the changes, and hopefully the reason for the passing out.

The diabetes team had been fantastic, slowly staging each meeting so we'd get a better understanding of everything involved, then lockdown happened and the meetings ended.

That's good you have a team, sorry I couldn't be of more help as the wild swings do seem unusual. x

 

[WorriedPartner]

Gosh, this is a difficult one. I agree with Mark if you've tried everything else. Start from scratch if you like, ie, very low carbs/keto even BUT test, test, test and please do it with the knowledge of your team as it will require adjustments of insulin and monitoring. There is always a chance something else is going on as well so please be careful. x

We'd gone back to square 1 3 times, thinking we were doing something wrong, keeping on top of the numbers seemed to be working, then they'd suddenly bounce up or down, and like the Tuesday and Wednesday examples above, the sudden changes made no sense and completely went against everything we'd been told, it's like the things that make the numbers move have been reversed.

 

[MarkMunday]

... we'd be reluctant to try any change till we find the reason for the changes, and hopefully the reason for the passing out. ...

The body is complex and we have no control over most of what happens in it. All we can do is focus on things we can control. What we eat, exercise getting enough sleep and hopefully reducing stress. In this case, changing eating patterns could make a big difference, simply because it reduces the need for injected insulin. You could also leave it up to the doctors to figure it all out, but don't hold hold your breath ...

 

[WorriedPartner]

The body is complex and we have no control over most of what happens in it. All we can do is focus on things we can control. What we eat, exercise getting enough sleep and hopefully reducing stress. In this case, changing eating patterns could make a big difference, simply because it reduces the need for injected insulin. You could also leave it up to the doctors to figure it all out, but don't hold hold your breath ...

I completely get what you mean, and any change can only be a good thing, and absolutely that is the way forward, but I very much doubt that's the reason for what's happening, and I don't want to in any way mask a more serious issue and build up a sense of confidence that will surely come crashing to a halt on a bad day, with potentially dangerous consequences, my worry is, it's becoming apparent that this isn't a common problem, we don't want to reduce the number of pass outs, or get to where 12 is an ok number to go to sleep on, the next time she passes out she could be at the top of the stairs, we really need to find out what's behind this because we're losing confidence in what should or should not make the numbers rise of drop, that's not a good place to be, it may be that we'll never find out the reason and will have to look at ways of managing the situation (can a sudden 12 point rise, or 83% decrease be managed?), and your suggestion does seem like it would be beneficial in the long run.

I do very much appreciate your suggestions, I'm just feeling so frustrated that I've had to leave her for another 3 days, but i've taken so much time of work, and can't keep doing it.

 

[EllieM]

You say she's T1, so presumably still in the honeymoon period, ie her pancreas is still producing some insulin? It's possible the hypos are happening because her pancreas is kicking in suddenly with extra insulin, this should stop with her honeymoon.

What's puzzling me is that she was getting these episodes before diagnosis, as an undiagnosed T1 she should have had high blood sugar, not low. (Though there are conditions, eg insulinoma or reactive hypoglycemia that can make a non diabetic go hypo).

Any chance you could get a dexcom or libre funded? (or consider self funding). This would give you real time alerts if her blood sugar goes below a chosen level (default is 4.4 but you could choose a higher one). (You'd need to pimp the libre out with a transmitter to do this).

Get her to carry glucose around with her, more chance she'll manage to take it if she goes low.

Other thoughts, how well has her pancreas been investigated? If her illness is T3c rather than T1 (damaged pancreas rather than pancreas whose insulin cells are being destroyed ny an immune reaction) it could be that her glucagon production is compromised. Glucagon is produced whenever your blood sugar goes low and tells your liver to produce sugar, thereby rescuing you from a hypo. T3cs have a much harder time with this because their glucagon production is impaired, and are prime candidates for needing a cgm (continuous glucose monitor).

Does she ever get hypo warnings? (Just reread your post, it seems she doesn't?)

How confident are you that her basal (long acting) insulin is right? If she's taking too much then she's going to go hypo between meals.

Redux, my recommendations

1) Push your clinic for another appointment, stressing the sudden hypos. (My apologies if she drives, she's going to lose her driving license till this is sorted out). It could be a virtual appointment if they are worried about covid. Remind them that she had these issues before diagnosis

2) See if you can get them to prescribe a dexcom (if they give you a libre come back here for explanations on how to make it give you alarms. Your wife is exactly the sort of person who needs one. Also, if she has a dexcom, you should be able to get it to send her results to your phone, which should help when you are away.

3) Get her to carry sugar with her at ALL TIMES. No point having it downstairs if she passes out before she gets to it.

4) Push the clinic for reasons as to the sudden bg drops (eg glucagon issues?) I have no idea whether her thyroid issues are relevant here but her endocrinologist should have the experience to know this.

I have experienced periods of poor hypo awareness (got my first mobile phone when pregnant so my husband could ring me to see if I'd passed out). It's the worst part of diabetes, imo, but modern technology can make a massive difference. Dexcom all the way.

 

[EllieM]

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, also, her Cortisol levels were very low a few weeks ago (170)

OK, I've just been googling and I think the thyroid and cortisol levels are potentially extremely relevant.

https://www.thyromate.com/blog/hypothyroidism-and-hypoglycemia-relationship

A good endocrinologist should be able to help you here. Luckily endocrinologists deal with both diabetes and thyroid conditions. Good luck.

And having said all that, I am not a doctor, I cannot diagnose, but your team can and should help you.

 

[HessianHerman]

I'm sorry that you are both going through this, it must be incredibly scary and frustrating. One thing I may add is, with her low cortisol levels, has she been investigated for Addisons disease?

 

[MarkMunday]

That these episodes are so sudden is striking. Has she been checked out for an insulinoma?

 

[WorriedPartner]

You say she's T1, so presumably still in the honeymoon period, ie her pancreas is still producing some insulin? It's possible the hypos are happening because her pancreas is kicking in suddenly with extra insulin, this should stop with her honeymoon.

What's puzzling me is that she was getting these episodes before diagnosis, as an undiagnosed T1 she should have had high blood sugar, not low. (Though there are conditions, eg insulinoma or reactive hypoglycemia that can make a non diabetic go hypo).

Any chance you could get a dexcom or libre funded? (or consider self funding). This would give you real time alerts if her blood sugar goes below a chosen level (default is 4.4 but you could choose a higher one). (You'd need to pimp the libre out with a transmitter to do this).

Get her to carry glucose around with her, more chance she'll manage to take it if she goes low.

Other thoughts, how well has her pancreas been investigated? If her illness is T3c rather than T1 (damaged pancreas rather than pancreas whose insulin cells are being destroyed ny an immune reaction) it could be that her glucagon production is compromised. Glucagon is produced whenever your blood sugar goes low and tells your liver to produce sugar, thereby rescuing you from a hypo. T3cs have a much harder time with this because their glucagon production is impaired, and are prime candidates for needing a cgm (continuous glucose monitor).

Does she ever get hypo warnings? (Just reread your post, it seems she doesn't?)

How confident are you that her basal (long acting) insulin is right? If she's taking too much then she's going to go hypo between meals.

Redux, my recommendations

1) Push your clinic for another appointment, stressing the sudden hypos. (My apologies if she drives, she's going to lose her driving license till this is sorted out). It could be a virtual appointment if they are worried about covid. Remind them that she had these issues before diagnosis

2) See if you can get them to prescribe a dexcom (if they give you a libre come back here for explanations on how to make it give you alarms. Your wife is exactly the sort of person who needs one. Also, if she has a dexcom, you should be able to get it to send her results to your phone, which should help when you are away.

3) Get her to carry sugar with her at ALL TIMES. No point having it downstairs if she passes out before she gets to it.

4) Push the clinic for reasons as to the sudden bg drops (eg glucagon issues?) I have no idea whether her thyroid issues are relevant here but her endocrinologist should have the experience to know this.

I have experienced periods of poor hypo awareness (got my first mobile phone when pregnant so my husband could ring me to see if I'd passed out). It's the worst part of diabetes, imo, but modern technology can make a massive difference. Dexcom all the way.

Thanks for the detailed reply, I think I may have misunderstood when they explained type 1 to me, I thought type 1 meant the pancreas couldn't produce insulin, so I didn't mention it, my wife's pancreas can't produce insulin.

She has had a libre for about 7 weeks, thats how we noticed the huge rises and drops in BS levels, it would be very useful to learn how to get alarms from it.

My wife has already lost her driving licence.

There's 2 separate things happening, the hypos, she gets all the warning signs, though sometimes the warnings can be very last minute, the passing out is very different, no warning at all, and might not be related, the main reason for thinking they're connected is, they were getting closer and closer together, in the last week before we chose to change her target numbers she passed out 3 times, then not a single time since.

The diagnosis only happened when she was rushed in to hospital, she'd had so many things going wrong, and I was astonished when I read the diabetes symptoms list, she'd pretty much had the lot, she'd had regular doctor appointments, but hadn't had the specific blood test for 19 months.

The basal seems ok, they advised 35, that kept her averages lower (though still with large leaps up and down), we lowered it to 34, then to 33 to get her averages between 9 and 12.

She now has glucose wherever she goes, by the bed, in bathroom, at work, in handbag.

Might be worth mentioning, she had blood tests today, then they put steroids in her, waited 30 minutes then tested again, I'm not sure what this was all about, but came about because of worries over her recent blood tests.

 

[WorriedPartner]

I'm sorry that you are both going through this, it must be incredibly scary and frustrating. One thing I may add is, with her low cortisol levels, has she been investigated for Addisons disease?

That these episodes are so sudden is striking. Has she been checked out for an insulinoma?

I can't be sure if she's been checked out for any of those, I miss the days when we used to sit down with the doc and could ask loads of questions, these days it's all phone appointments, and normally when one or both of us are working, my wife wouldn't remember any of those names, and if doc said she didn't have them, she then probably wouldn't mention them to me.

 

[EllieM]

Might be worth mentioning, she had blood tests today, then they put steroids in her, waited 30 minutes then tested again, I'm not sure what this was all about, but came about because of worries over her recent blood tests.

It sounds to me that they are investigating her sensitivity to blood sugar changes. Normally the pancreas and liver have a nice feedback loop going that stops blood sugars from going to low, steroids typically push up blood sugars dramatically.

I'd suggest you make a written list of questions before the next phone appointment.

As regards the libre, there is a device called a miaomiao which can be added to it, there are a number of threads on the forums about this. (I've never used it because I became allergic to the libre and it no longer works for me.)

 

[WorriedPartner]

It sounds to me that they are investigating her sensitivity to blood sugar changes. Normally the pancreas and liver have a nice feedback loop going that stops blood sugars from going to low, steroids typically push up blood sugars dramatically.

I'd suggest you make a written list of questions before the next phone appointment.

As regards the libre, there is a device called a miaomiao which can be added to it, there are a number of threads on the forums about this. (I've never used it because I became allergic to the libre and it no longer works for me.)

That sounds right, they said her BS would be a little high afterward, but it was a very rushed appointment, so didn't get a chance to learn much about it, results expected end of next week.

Thanks for all the info, I'll read about the miaomiao in morning, wife will call me at 06:00 on the dot, so better get some sleep, thanks again.

 

[TypeZero.]

Generally the older you are diagnosed with T1D the more insulin you produce. Scientists still don’t understand why younger T1Ds have a more aggressive immune system that leaves almost no insulin-producing cells around but what I think is the case certainly for your wife is she produces quite a lot of insulin and coupled with the insulin injections she gets quite a lot of hypos.

If she is going low quickly throughout the day and rising quickly after food then it seems that the basal insulin may be need to toned down and the insulin to carb ratio changed so you give more insulin for less carbs

 

[WorriedPartner]

Generally the older you are diagnosed with T1D the more insulin you produce. Scientists still don’t understand why younger T1Ds have a more aggressive immune system that leaves almost no insulin-producing cells around but what I think is the case certainly for your wife is she produces quite a lot of insulin and coupled with the insulin injections she gets quite a lot of hypos.

If she is going low quickly throughout the day and rising quickly after food then it seems that the basal insulin may be need to toned down and the insulin to carb ratio changed so you give more insulin for less carbs

My wife's pancreas isn't producing any insulin.

 

[TypeZero.]

My wife's pancreas isn't producing any insulin.

No, they say that but in reality every T1D has some residual insulin production, people diagnosed at a younger age have a lower residual insulin production but still nearly everyone tests positive for C-peptide

 

[DCUKMod]

Thanks for the detailed reply, I think I may have misunderstood when they explained type 1 to me, I thought type 1 meant the pancreas couldn't produce insulin, so I didn't mention it, my wife's pancreas can't produce insulin.

She has had a libre for about 7 weeks, thats how we noticed the huge rises and drops in BS levels, it would be very useful to learn how to get alarms from it.

My wife has already lost her driving licence.

There's 2 separate things happening, the hypos, she gets all the warning signs, though sometimes the warnings can be very last minute, the passing out is very different, no warning at all, and might not be related, the main reason for thinking they're connected is, they were getting closer and closer together, in the last week before we chose to change her target numbers she passed out 3 times, then not a single time since.

The diagnosis only happened when she was rushed in to hospital, she'd had so many things going wrong, and I was astonished when I read the diabetes symptoms list, she'd pretty much had the lot, she'd had regular doctor appointments, but hadn't had the specific blood test for 19 months.

The basal seems ok, they advised 35, that kept her averages lower (though still with large leaps up and down), we lowered it to 34, then to 33 to get her averages between 9 and 12.

She now has glucose wherever she goes, by the bed, in bathroom, at work, in handbag.

Might be worth mentioning, she had blood tests today, then they put steroids in her, waited 30 minutes then tested again, I'm not sure what this was all about, but came about because of worries over her recent blood tests.

Sounds like she had a Short Synacthen Test, so they are looking at her adrenal function, so that covers the Addison's comment above.

https://labtestsonline.org.uk/tests/synacthen-test

Has your partner considered joining here herself, rather than everything going through you? She's very fortunate indeed to have an advocate as strong as you, but she could probably do with some direct support too