Type 1 partner uncontrolled diabetes

[purplesally]

Hi Kat and welcome to the forums.

Sadly, your story is not uncommon. The constant routine of testing and injecting can become a severe drag and for a few people this leads to burnout and not caring what happens to yourself.

As you have recognised, an A1c of 12 (I assume this is mmol) is too high and is likely to lead to complications in the longer term, so you are right to be concerned.

Tiredness is a side effect of high glucose levels, basically there is insufficient insulin to allow the body to use the glucose for energy, so tiredness and lethargy often result.

What's less understood is the effect of high glucose levels on one's emotional state. Many of us would testify to becoming sad and or bad tempered with constantly high glucose levels. Fortunately this usually goes away quite easily when levels come down. In the meantime though this can make you less likely to care about yourself and it's not an easy cycle to break.

For myself, trying to avoid long term complications keeps me fairly well motivated, is your fella aware of the risks?

It sounds as though he might benefit from a help group if you have access to one. But you obviously will not find it easy getting him there. Can you get him on here and reading these pages?

Best wishes
Urb.

I will tag a few T1 colleagues into this. @Marie 2 @Juicyj @Diakat @therower @Antje77 @Ellie-M @kitedoc who may have something to add.

Have to agree highs make me feel miserable and tired too

 

[Kat2105]

The thing is, he will have to care to change? At 29 we all had a tendency to think we were invincible and he probably doesn't recognize any side effects of bad control. First his mood will improve with better control, high blood sugars make you more prone to depression. Not taking enough insulin for the food you eat means you're not actually properly being able to use that food as energy, hence being fatigued and tired.

Running high blood sugar levels means his blood is too thick, think of it as water going through a strainer and how easily it does so, now think of thick syrup and how it doesn't and that is how blood is trying to flow in his body.

Maybe you can approach him with the idea to give you a month of keeping better track and dosing to see if he feels better, and hopefully he improves and feels better and wants to continue, offer to help him figure out dosing etc, that you will do it together.
I'm not sure it will work but it's probably worth a try.

He has to change those sugar levels, our bodies seem to be able to put up with a certain amount but eventually it will start taking a toll. The effects can be numerous and nasty. I would try to see if he would get a CGM, continuous glucose monitor, he wouldn't have to finger stick to test to find out what level he is at all day long. The Libre as mentioned before is a good place to start.

Hi Marie,

Thank you so much for this.

The last week, with a lot of information from this forum, has really opened his eyes to what needs to change.

Today was the first day in over 10 years he had a look at his diet, and thought that he may start to make changes. We worked out on an average day, his daily intake is 48g protein, 289g carbs and 41g fat, with approx. 181g sugar.... I feel this is definitely a contributing factor to his high levels!!!

I can't thank you all enough, and hope this has been an eyeopener.

 

[Kat2105]

T

Hello,
Sending you lots of hugs! I feel like your partner is possibly going through some kind of unaddressed form of diabetes burn out. I would urge you to get him seen by his team to have care put into place because he is high and running high isn’t fun for himself and you. I unfortunately feel like libre or CGM would overhelm him with data, like he wouldn’t know what to do and possibly react to every number or feel worse by seeing he is high all the time. With the libre, he would need to scan to get a result and with a CGM, you’ll get a reading every 5 mins. But it does help ease his mind or anyone else’s mind of having to finger prick everyday. He would need to be educated by his diabetes team like a carb counting course to possibly understand his data. A carb counting course would definitely be a starting point in trying to identify if his basal rates are correct and help with insulin for food. For the mental side of things, professional help is a simple talk with his team and his team can refer him for help or a trip to his GP.

Thank you so much for this. He doesn't really have a team...he sees his endo once every 6 months or so, and that's it. We have had a look at his diet, and worked out on an average day, his daily intake is 48g protein, 289g carbs and 41g fat, with approx. 181g sugar daily, so he is going to start to make some changes, slowly but surely, fingers crossed.

 

[slip]

Hi Kat, TBH he isn't a million miles from 'reasonable' control - we've see a lot worse. The amount of carbs isn't a problem as such so long as he's balancing it out with insulin correctly. He just needs to get in to the routine of testing a lot (for a while at least whilst he gets on top of things) - or using a CGM/Libre device to get the full picture.

Whats his HBA1C been like? if he's regularly attending 'clinic' I'm amazing they haven't picked up on things being slightly out of control.

 

[Kat2105]

Hi Kat, TBH he isn't a million miles from 'reasonable' control - we've see a lot worse. The amount of carbs isn't a problem as such so long as he's balancing it out with insulin correctly. He just needs to get in to the routine of testing a lot (for a while at least whilst he gets on top of things) - or using a CGM/Libre device to get the full picture.

Whats his HBA1C been like? if he's regularly attending 'clinic' I'm amazing they haven't picked up on things being slightly out of control.

It was around the 12 mark at last test. He doesn't often see his doctor, and i know he used to fast before the blood test so it would bring it down? Not sure how accurate this is ha. Since we had a discussion he is now testing about 5 to 6 times a day, and I'm thinking I'm going to try get him the freestyle libre just to give it a try of, and see what he thinks.

 

[slip]

LOL fasting before a hba1c blood test will not affect the result one bit! (It's a measure (of sorts) of the average BG levels over the last ~3months with a slight weighting towards the most recent few weeks - but a hba1c of 12 equates to an average BG of 16mmol) Good to hear he's testing a lot more now, as a result is his bloods slightly better? Is he starting to tweak his dosages more to compensate for BG levels and the amount of carbs he's having?

12% hba1c result isn't good though so theres plenty of room for improvement having said that I wouldn't aim to lower it radically quickly he could damage his eyes - suggest he works out manually what his average BG test has been this last week, and then next week aim to reduce that slightly, so say by end of Jan hes averaging at the 8 mark. This might give him something to work to/aim for?

 

[Kat2105]

It's very much rollercoastering still, and he's very annoyed with it..yesterday he ate one thing all day and end up at 17, then 14 by the time he went to bed.

Thank you so much for this.

 

[Marie 2]

He's not taking enough of a basal insulin probably. Unfortunately the best way to tell what rate you need is to fast for the day and see what your numbers do. But you can break it down into fasting segments for the day, Fast for 6 hours with no insulin (or food) and do your numbers start to go up after 6 hours? The thing you want to make sure of is not going too low if you are on one shot per day, so you should test half way through the night too, not too close to when you wake up because people normally have an increase before they wake up for the day.

But if you only drop to a 14, you need more insulin for the meal. It might need to be delivered as a correction dose later. But depending on what he eats, like higher fat it can delay absorption of the carbs you ate. Generally you start out with a carb to insulin ratio and then it is slowly increased until you figure out the right dosage.

Warning!! If you fast for the day keep in mind that if your basal is too high you might have to eat. Watch and make sure you do not go hypo! It does not sound like he is at a too high level, but you never know.

 

[urbanracer]

It's very much rollercoastering still, and he's very annoyed with it..yesterday he ate one thing all day and end up at 17, then 14 by the time he went to bed.

Thank you so much for this.

What type of basal is he using and when does he take it.

 

[Resurgam]

I am a type 2 so a whole other kettle of fish - but I eat less carb in a week than your husband eats in a day.....
I do enjoy the things I do eat - and prefer it to the stodgy diets which I was told were the healthy way to eat. It certainly didn't feel like it.
Heres hoping you can get things sorted for your husband.

 

[Helen46]

Hi, My turn around was a great endocrinologist (I'm also in Australia) and he talked pump...took a bit of persuading and a DAFNE course but once things started to improve I felt so much better. I think part of it is getting to the point where you control it rather than it controls you...certainly a shift in perspective but a small success can be very rewarding. If you have private health a letter from the endocrinologist stating that he needs a pump can get him started. You can even trial one but the initial setup period takes some adherence to routine. best wishes...you are right 29 is way young!

 

[Kat2105]

What type of basal is he using and when does he take it.

He takes Novo Rapid - Morning and night - and lunch time if he "thinks he needs it". Then Lantus at night.

 

[slip]

"thinks he needs it"

He's T1, he needs it! (although I guess he could be having a carb free lunch.......) And I assume the novorapid 'morning and night' refer to being taken with his breakfast and evening meals?

 

[urbanracer]

He takes Novo Rapid - Morning and night - and lunch time if he "thinks he needs it". Then Lantus at night.

OK, so despite the claims of the manufacturer, Lantus (Glargine based insulin) does not usually last for 24 hrs in the body - most of us would see around 18hrs before its effectiveness starts to tail off. If he takes it at night then it could help to explain why he's high the following evening.

To get around this shortcoming, many of us split the dose but there's not much I can say without breaking forum rules on giving dosing advice. You should seek advice from a medical professional before changing insulin dosing (that's the small print) but as an experienced diabetic - if your fella is happy to experiment then maybe try it.

When I was using Abasaglar ( a Lantus biosimilar product) I tried 25/75 and 40/60 before eventually settling on 50/50 but its important to recognise that what works for some people may not work for others. Also think about the timing as a large dose at night could cause night time hypos.

Catch you later.

 

[Marie 2]

As a T1, there is no really deciding if you need it. Your body just can't wing it. You have to have it for any carb you eat.
The only thing is if your basal dose is too high so you have "extra" in your system it might cover some carbs. Or I suppose as @urbanracer has said a very low carb or no carb meal. (Even then some people need a little insulin to metabolize a high fat high protein meal.)

 

[Kat2105]

As a T1, there is no really deciding if you need it. Your body just can't wing it. You have to have it for any carb you eat.
The only thing is if your basal dose is too high so you have "extra" in your system it might cover some carbs. Or I suppose as @urbanracer has said a very low carb or no carb meal. (Even then some people need a little insulin to metabolize a high fat high protein meal.)

His highest carb meal of the day is at lunch!!

 

[Kat2105]

OK, so despite the claims of the manufacturer, Lantus (Glargine based insulin) does not usually last for 24 hrs in the body - most of us would see around 18hrs before its effectiveness starts to tail off. If he takes it at night then it could help to explain why he's high the following evening.

To get around this shortcoming, many of us split the dose but there's not much I can say without breaking forum rules on giving dosing advice. You should seek advice from a medical professional before changing insulin dosing (that's the small print) but as an experienced diabetic - if your fella is happy to experiment then maybe try it.

When I was using Abasaglar ( a Lantus biosimilar product) I tried 25/75 and 40/60 before eventually settling on 50/50 but its important to recognise that what works for some people may not work for others. Also think about the timing as a large dose at night could cause night time hypos.

Catch you later.

Thank you for this. I've sent him this to have a look at, and I am thinking/hoping he will take advice!

I'm pushing for him to go back to his doctor, as he doesn't have a team or anyone he regularly sees to work out how much he should be having, as he really doesn't have much idea about any calculations.. but it's all small steps and I'm stoked he's been listening so far! Thank you so much for your help.

 

[Kat2105]

He's T1, he needs it! (although I guess he could be having a carb free lunch.......) And I assume the novorapid 'morning and night' refer to being taken with his breakfast and evening meals?

Yep that's correct, breakfast and evening... haha his most carb laden meal of the day is lunch!!!

 

[urbanracer]

Thank you for this. I've sent him this to have a look at, and I am thinking/hoping he will take advice!

I'm pushing for him to go back to his doctor, as he doesn't have a team or anyone he regularly sees to work out how much he should be having, as he really doesn't have much idea about any calculations.. but it's all small steps and I'm stoked he's been listening so far! Thank you so much for your help.

Oh lord! Get him on here!! Tell him we won't bite!!!

And we Pommies are quite willing to help.