Passing out, newly diagnosed type 1

[WorriedPartner]

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

Thanks for the link, my wife doesn't like forums/message boards, she's just not that interested in the internet, when I get home on Monday we'll go through this thread together.

 

[WorriedPartner]

Wife was a little naughty today, made 2 ham sandwiches (4 slices medium sliced white bread) for work, took 12 units before eating them at 1pm,

numbers for today,

12:20pm - 8.9
2:30 - 14.7
4:00 - 22.9

From 1 till 4 she's been busy working, something that normally pushes her numbers down quite quickly, she's getting back to feeling thirsty all the time and craving coke and milk shake, something that only happened in the months before she was rushed into hospital.

It's interesting that nobody has said "a similar thing happened to me/someone I know", On Monday we're going to have to do everything we can to get an appointment with a specialist.

 

[Antje77]

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

Sounds like a nasty situation all around.
Just a little bit of practical advice here while she and her diabetes team try to work it all out: Don't go navigating the stairs at 2.2, especially not when you have a history of passing out. Instead, make sure you have your meter and hypo treatment on you at all times.
Also, don't do anything while waiting for the hypo to resolve. Just sit down and test again after 15 minutes. Exercise, even just doing the dishes, uses up glucose. You need to replenish this glucose before starting to burn it again. Totally annoying, but much safer.

Does she wake up by herself if this happens?

Tell her I wish her all the best!

 

[WorriedPartner]

numbers for today,

12:20pm - 8.9
2:30 - 14.7
4:00 - 22.9

update

8pm - 6.7

A rise of 14, then a drop of 16.2, what could possibly go wrong.....

 

[WorriedPartner]

Does she wake up by herself if this happens?

it's happened twice while sleeping, both times she woke up.

We've learnt a lot along the way, she has sweets (that don't need opening) everywhere, also sugary drinks, they go with her everywhere, since we upped her target level we also upped her trigger level, if she drops below 7 she'll eat something, if she drops below 6 it's time for sweet stuff to get her above 9, but as explained in my first post, the rise or fall are rarely slow, going to sleep on 13, woke up a few hours later at 2, nobody can plan for that, it would be harmful to aim for 16 before going to sleep.

 

[ert]

I'm sorry you are both having a tough time of it. First, your DN should ask her to check her basal insulin by eating a carbohydrate-free meal, and not dose short-acting, to check the blood sugars holds a straight line. You can do this for lunch one day, and a few days later for dinner. Second, I recommend you keep a detailed diary of blood sugar from a finger prick (which may be different to the Libre - your DN would have said never dose insulin on a Libre reading) waking, bedtime, before meals and 5 hours after, and a record of food eaten, and insulin given over 4 to 5 days. This will help the consultants get to to the bottom of what's happening in terms of dosing.
Of course, other tests, as suggested in the posts above, for the collapsing pre-insulin, and other medical issues, need to be followed up on.
The Bubble is a competitor to the Miao Miao, which you should look into as well, but both have alarms which are life-changing and great. Also phone apps such as X-Drip and Glimp to connect to the Miao Miao or Bubble, you can use to calibrate your finger pricks. Don't be afraid of setting night alarms to check blood sugar if you see a pattern, for example, always going low at 2 am. I set one four hours after taking my bedtime night basal when I started insulin, just to get a picture of what was happening when the basal started working (it starts 4 hours after the injection for Levemir) before I had a Miao Maio.
I really hope you get to the bottom of what is happening soon.

I recommend this online course: https://www.bertieonline.org.uk/

 

[KK123]

[QUOTE="ert, post: 2322788, member: 504712" (which may be different to the Libre - your DN would have said never dose insulin on a Libre reading)[/QUOTE]

Hi ert, that's interesting about the Libre and dosing for insulin. I have been told that I DO have to dose my insulin on a Libre reading, since having the Libre the test strips were restricted to one box every 6 weeks or so (to allow for finger prick tests when an 'unusual' reading pops up). I always thought it a little odd because the Libre is 15 minutes behind for one thing so the dosing requires a little mathematical adjustment.

 

[Jaylee]

it's happened twice while sleeping, both times she woke up.

We've learnt a lot along the way, she has sweets (that don't need opening) everywhere, also sugary drinks, they go with her everywhere, since we upped her target level we also upped her trigger level, if she drops below 7 she'll eat something, if she drops below 6 it's time for sweet stuff to get her above 9, but as explained in my first post, the rise or fall are rarely slow, going to sleep on 13, woke up a few hours later at 2, nobody can plan for that, it would be harmful to aim for 16 before going to sleep.

Hi,

Welcome to the forum.

What basal (long acting insulin.) is your wife prescribed??
A basal like Lantus can catch me out. (Though I've never hit the floor.) just popping fast acting carbs can (sweets.) sort it for a short while, but the hypo can recur if slower acting carbs are not following up on the treatment. If the dose is too high?

Libre wise. I find they have a habit of reading lower than my meter does during most of my hypos. & take longer to show a recovery in comparison to a BG meter..
Hence why I use a Bluetooth bridge with a 3rd party app, which can be calibrated..(checking periodically with my meter. Especially after a low.)

 

[WorriedPartner]

I'm sorry you are both having a tough time of it. First, your DN should ask her to check her basal insulin by eating a carbohydrate-free meal, and not dose short-acting, to check the blood sugars holds a straight line. You can do this for lunch one day, and a few days later for dinner. Second, I recommend you keep a detailed diary of blood sugar from a finger prick (which may be different to the Libre - your DN would have said never dose insulin on a Libre reading) waking, bedtime, before meals and 5 hours after, and a record of food eaten, and insulin given over 4 to 5 days. This will help the consultants get to to the bottom of what's happening in terms of dosing.
Of course, other tests, as suggested in the posts above, for the collapsing pre-insulin, and other medical issues, need to be followed up on.
The Bubble is a competitor to the Miao Miao, which you should look into as well, but both have alarms which are life-changing and great. Also phone apps such as X-Drip and Glimp to connect to the Miao Miao or Bubble, you can use to calibrate your finger pricks. Don't be afraid of setting night alarms to check blood sugar if you see a pattern, for example, always going low at 2 am. I set one four hours after taking my bedtime night basal when I started insulin, just to get a picture of what was happening when the basal started working (it starts 4 hours after the injection for Levemir) before I had a Miao Maio.
I really hope you get to the bottom of what is happening soon.

I recommend this online course: https://www.bertieonline.org.uk/

Thanks for the excellent info, the carb free + no short acting is a great idea, do you have a useful link for carb free meal ideas? (google's full of sites, but, I love cooking most Asian cuisines, and have slowly learnt the web is full of really poor websites, and finding the real authentic recipes is almost as difficult as cooking the food, so I'd prefer recommendations for a carb free website)

The online course seems like a great idea, but my priority this week will be to set up MiaoMaio, then an app so we both get warnings, then, in case I can't get a response from wife, sort out a couple of back-up options (friends) and familiarise them with the emergency injection procedure.

Thanks again.

 

[WorriedPartner]

Hi,

Welcome to the forum.

What basal (long acting insulin.) is your wife prescribed??
A basal like Lantus can catch me out. (Though I've never hit the floor.) just popping fast acting carbs can (sweets.) sort it for a short while, but the hypo can recur if slower acting carbs are not following up on the treatment. If the dose is too high?

Libre wise. I find they have a habit of reading lower than my meter does during most of my hypos. & take longer to show a recovery in comparison to a BG meter..
Hence why I use a Bluetooth bridge with a 3rd party app, which can be calibrated..(checking periodically with my meter. Especially after a low.)

Hi Jaylee, I'm not sure of the name of the long acting insulin, but Lantus doesn't ring any bells.

The slow acting carbs idea is useful to know, I lean more toward just getting her numbers back up ASAP, in life she's a very strong and independent woman who always knows what to do, so to see her (when having hypo) not knowing how to open a pack of sweets, or where to find everyday items is extremely scary, and any dangers from numbers going too high just don't seem important at the time, (resulting in a couple of stern telling off sessions for me afterwards).

 

[WorriedPartner]

Just a side note,

My wife never had a sweet tooth, and we estimate she now has 10 times the amount of sweet stuff (than she had before diabetes) trying to stop her numbers going too low or to recover from a hypo, this has reduced a fair bit since we upped her target levels.

 

[oldgreymare]

Our hormones are controlled by massively complex feedback systems both immediately and in longer term (ramping up/down various enzymes production). These work exquisitely well in a healthy state, but then can become hugely difficult to control through medication, diet, lifestyle, etc. when not functioning properly (sledgehammer to crack nuts comes to mind). It does sound that your wife may be particularly unlucky to have both thyroid and pancreas malfunctions and possibly adrenal issues as well. So do keep working with your health team to understand as much as possible what is going on and ask for explanations of any and all test results. Does your GP practice / local endo unit (sadly rare that they will use the same apps) have online software to share all test results and letters? Be cautious with Dr Google, but it can give a bit of extra time to search implications and develop questions for actual consultations.

Like @ert I think asking for help to recalibrate her basal levels sounds sensible - current dose may be too high. Also perhaps plan as steady state regime as you can for now - do research low carb diet, it will definitely help moderate the BG swings, plus try to stay consistent every day with activity/exercise and sleep. Be prepared that hard exercise, stress, excitement, emotions can trigger rapid BG rises independent of food. My personal experience is that even small amounts of carb (doesn't matter whether refined, wholegrain, root veg, low GI etc) will send me high very rapidly, as will all protein albeit on a slower curve - I'm still working out best dose/timing for bolus injections, maybe get it perfectly right 50% of the time at best (11 years after diagnosis). So do hang in there - it is great that you are being so proactive in trying to help your partner. This forum is a very helpful resource.

 

[ert]

Thanks for the excellent info, the carb free + no short acting is a great idea, do you have a useful link for carb free meal ideas? (google's full of sites, but, I love cooking most Asian cuisines, and have slowly learnt the web is full of really poor websites, and finding the real authentic recipes is almost as difficult as cooking the food, so I'd prefer recommendations for a carb free website)

The online course seems like a great idea, but my priority this week will be to set up MiaoMaio, then an app so we both get warnings, then, in case I can't get a response from wife, sort out a couple of back-up options (friends) and familiarise them with the emergency injection procedure.

Thanks again.

Here is an example of carb-free foods for basal testing. It's for insulin pumps but it follows for MDI.
https://www.wsh.nhs.uk/CMS-Document...122-1-Basal-and-Bolus-Settings-Diet-Sheet.pdf

 

[ert]

[QUOTE="ert, post: 2322788, member: 504712" (which may be different to the Libre - your DN would have said never dose insulin on a Libre reading)

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.

 

[EllieM]

The online course seems like a great idea, but my priority this week will be to set up MiaoMaio, then an app so we both get warnings, then, in case I can't get a response from wife, sort out a couple of back-up options (friends) and familiarise them with the emergency injection procedure.

The slow acting carbs idea is useful to know, I lean more toward just getting her numbers back up ASAP, in life she's a very strong and independent woman who always knows what to do, so to see her (when having hypo) not knowing how to open a pack of sweets, or where to find everyday items is extremely scary, and any dangers from numbers going too high just don't seem important at the time, (resulting in a couple of stern telling off sessions for me afterwards).

I agree with this 100%. Diabetes is a marathon and not a sprint, and you've got plenty of time to tweak doses and lifestyle so as to avoid those highs. In the short term, you're facing unpredictable sharp lows and they are life threatening. So getting a transmitter working so that she gets hypo warnings when her bg is at 5 instead of 2.5 should be life changing. (Plus you should be able to send info to your phone which will provide some assurance if you are away).

I've had a few periods of hypo unawareness and frankly I was afraid to be home alone. It's great that your wife wakes up at night from hypos, but unfortunate that she has to go so low before she wakes. Having a cgm with an alarm is a life changer (and saver) for me, and hopefully for your wife too.

Good luck. (And my sympathy to you too - my partner has been enormously supportive to me and my diabetes but I know some of my hypos have stressed him more than me - it's terrifying watching your partner go comatose or almost comatose.)

 

[MarkMunday]

update

8pm - 6.7

A rise of 14, then a drop of 16.2, what could possibly go wrong.....

That is fondly referred to by T1 diabetics as 'being on a rollercoaster'. All that carb sends blood glucose all the way up and the insulin eventually sends it all the way down again. With the help of exercise. It takes insulin a while to catch up with the glycemic effect of bread, hence the big blood glucose excursion. It shows why cutting carbs and reducing insulin helps, regardless of other issues.

 

[WorriedPartner]

So getting a transmitter working so that she gets hypo warnings when her bg is at 5 instead of 2.5 should be life changing.

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.

I suspect we're going to have to set the alarm level quite low to begin with, and follow some of MarkMunday's advice of slowly trying to improve diet to slowly reduce the extremes of lows and highs, then hopefully the alarm level can be slowly raised.

It's going to be a hard sell, the diabetes, and in particular the passing out and hypos have actually caused her to become a bit of a pessimist, she needs to feel that we're slowly getting on top of this.

 

[WorriedPartner]

It shows why cutting carbs and reducing insulin helps, regardless of other issues.

I'm beginning to understand this.

 

[DCUKMod]

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.

I suspect we're going to have to set the alarm level quite low to begin with, and follow some of MarkMunday's advice of slowly trying to improve diet to slowly reduce the extremes of lows and highs, then hopefully the alarm level can be slowly raised.

It's going to be a hard sell, the diabetes, and in particular the passing out and hypos have actually caused her to become a bit of a pessimist, she needs to feel that we're slowly getting on top of this.

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.

 

[oldgreymare]

Thanks for the excellent info, the carb free + no short acting is a great idea, do you have a useful link for carb free meal ideas? (google's full of sites, but, I love cooking most Asian cuisines, and have slowly learnt the web is full of really poor websites, and finding the real authentic recipes is almost as difficult as cooking the food, so I'd prefer recommendations for a carb free website)

The online course seems like a great idea, but my priority this week will be to set up MiaoMaio, then an app so we both get warnings, then, in case I can't get a response from wife, sort out a couple of back-up options (friends) and familiarise them with the emergency injection procedure.

Thanks again.

A respectable website for low carb recipes and many interesting articles/videos is dietdoctor.com This is subscription basis, but does allow a free trial. If you sign up and search the recipes you can find options for high flavour low carb Thai, Indian some other Asian ideas - typically with substitutes for rice/noodles/naan etc.