Struggling

[Draco16]

Thank you for your reply.
I take 34 units of Tresiba at night. I just switched about 3 weeks ago from Lantus. I take Humalog with my meals my ratio is 1::6 a breakfast 1:6 at dinner and 1:7 at tea time. I also take 175mg of Levothyroxine. Yes I rotate and are not damaged. I sit at a desk all day (I don't think this helps) and usually eat the same for breakfast and dinner most days. I'm mostly high all the time and am constantly chasing that. I worry about the amount of insulin I take it seems a lot. I take between 14 and 17 units with my breakfast including a correction. I can still some times be as high as 20 by lunch time. If I take more I have a hypo. They've suggested just getting my background right for now. I've had a few Libre and it shows I'm going low at night. Sometimes below 4 for a couple of hours. Which suggests I'm taking too much background? My last Hba1c was 8.9 I think. It has been around this the whole time. I don't think I have a real understanding of what I'm supposed to be doing even though I've been on a course and it all makes sense to me when they talk about it. I struggle to transfer that to actually doing it in real life. Nobody talks about the emotional effect it can have. That's what I find the hardest.

Thanks @jo789 for the this, very useful.

Just a few follow ups:

1. You have the same breakfast most days - what is it? How many carbs? I'm estimating around 90g carb on the ratio you mentioned?
2. The same dinner most days - what is it? How many carbs? Or how many units do you inject for it?
3. At what time do you inject the Humalog when eating? 15 mins before? First mouthful? When finished eating?
4. I know the stuck at a desk feeling! Do you get a chance to do any exercise, 30 mins walking a day or anything, etc

Yes the emotional stress is very hard, the relentless nature of T1 is tough... we never get time off.

 

[LooperCat]

Afternoon, can’t add much to what the others have already said about speaking to your team about your emotional health. It’s an awful lot to get your head around, especially in the early years. I think we go through almost a period of mourning our lost health, with the typical symptoms of denial, anger, bargaining, depression and acceptance. What you’re feeling is totally normal, it’s called burnout, and we’ve probably all been through it (or will do).

What’s a typical day on the food (and dosing) front for you?

 

[jedwards 2]

Hi @jo789
I understand the frustration. I'm in year... 33 of being a T1, and a right bore of consistency with dose, food and exercise over the first 32 years. However, the last year had been rough for me having bad highs and lows. A1C ranging from 7.1 to this past month, 8.4, drastically cutting dosage to try and handle at least, wild low swings I was experiencing. About a year ago, I was told I need to start taking 100mg LevoThyroxin. Two months later, for the first time in my life I had an ambulance out to wake me from an overnight low. Advised to switch from Humalin N to Lantus by a doctor on staff. No difference to the swings.

After a (nine month!) wait here in Canada, I was finally able to see an endocrinologist. He suggested we need far tighter sugar monitoring than five times a day. I managed to get a Libre after a few more months. I like it, but I don't trust most numbers on the machine if I've been lying on my arm at night. I suspect overnight low readings are common for people using it. Test blood to confirm what you see.

Regardless of that, what it had shown me in my case was how ineffective the Humalog insulin has become after fifteen years of use. I was using about 20 units a meal, and sounding similar to you, massive swings in sugar levels, many really unexplained. I can't stress the importance of getting a consistent breakfast in you each day, but also try to vary location of your injections, and rotate to new needles fairly often.

If you are using the Libre, are you able to determine how long it takes the Humalog to start kicking in? For myself, it would take 2.5-3 hours before sugars started to come down after a small meal. My Endo indicates that this can happen with some patients. I won't claim to understand the reasons, or typical individuals affected, but it happened to me. We ended up switching to Fiasp. This is week three, but this feels like Humalog of old for me... 20-30 minutes before sugars start coming down again, and a nice smooth drop for a few hours. I've had one day in the past three weeks with a concerning high, but again, easy to control using what appears to be a very effective insulin for myself, and feeling much more confident.

I'm sure once the right combination is found for you, you will have some peace of mind. Keep checking in with the pros. It will get better.

 

[Fairygodmother]

Hi @jo789, sorry you’re struggling at the moment! It’s pants when the ‘can’t get it right’ hits - it makes all of us feel we’re fighting a losing battle and are utterly useless. You’re not alone in this, many of us have been there one time or another. The real bonus (ironic) is that running too high makes us feel even worse.
Can you ask your GP to refer you to a teaching hospital for some expert help? They could investigate whether there’s anything else that would help your levels, and whether there’s anything in particular that’s led to your high doses. Have you always needed a lot of insulin?
Your workplace should accommodate any appointments you need under the Equality Act so don’t feel you need to wait or take holiday time.
Sitting at a desk all day, as you say, is not the best for a T1, is there anything you could do to get more exercise? A brisk walk on the way to and from work might make a big diffference, even if you drive there and go round a couple of blocks before you go through the door. I find exercise is a mood lifter too.
Three years isn’t long. You’re young, no complications, and despite the dire warnings that DSNs seem to have on a loop these days you’re more likely to have a long and healthy life than fall prey to any of the dreaded ‘the end of the world is nigh’ stuff that they keep banging on about. Some of us have had T1 for decades, getting it before the development of portable blood testing kit and sophisticated insulins.
Don’t despair.
When I had a dark time recently, before switching insulins, the best advice I was given was to take a week off from frequent testing and worrying and relax. Try it? Get a good book and lose yourself in it. See a happy film. Have a laugh with friends. And put T1 in the background for a few days?
Have a virtual hug from me too - you’re about the same age as my daughters, so have a proxy mummy hug

 

[kitedoc]

TID 51 years on insulin.
Glad to see posting and writing more about your situation.
Some thoughts based on my experience:
I maybe biased and have not ever tried Tresiba but i found the flexibility of taking Levemir twice daily gave me a better chance to prevent night hypos but take sufficient for daytime. Afterall basal levels fluctuate over the 24 hours, so can Tresiba really control that? Also i found Novorapid worked best if i took it 1 hour before meals. If Fiasp had been available back then i woukd have volunteered to try it asap. It was only after 45 years on insulin injections that i needed the insulin pump to maintain control although i was struggling probably from the 40 year mark.
Also exercise in moderation ( for me walking, gentle swimming, not running, playing squash etc) did wonders for my mood and blood sugars. However i also needed anti-depressants having diabetes and a strong family history of depression. O not be afraid to be assessed for mental health if things do not improve.
I worked at a largely desk bound job for years. The trick was to find every excuse to get up and walk about, use stairs not lifts and plan to be able to walk a good distance to car, bus stop etc. Weekends involved gardening, walking to and fro shops to do shopping ( and to the hardware store when i could get away with it!!)., kite flying and some socialvtime. Laughing is a form ofvexercise and stress relief. Joining a kite club helped also.
I hope the above might help you. Sometimes improvement is incremental and persisting to obtain the maximal benefit takes some time. Best Wishes !

 

[Brendon.Dean]

@Jo

Type 1 diabetic. 3 years. Struggling with what has gone before and what is to come. Help needed.

@jo789

What food do you eat at meal 1, 2, 3, 4 etc.

What time do you eat these meals at?

How many grams of carbs, fat and protein are in each one of these meals?

What is your blood glucose before each of these meals?

Do you exercise at all?



Timing, nutrition, and exercise are the biggest components of being a type 1 diabetic.

[Edited by moderator.]

 

[heh]

@jo789
How are you doing?

 

[jo789]

Hi @jo789, sorry you’re struggling at the moment! It’s pants when the ‘can’t get it right’ hits - it makes all of us feel we’re fighting a losing battle and are utterly useless. You’re not alone in this, many of us have been there one time or another. The real bonus (ironic) is that running too high makes us feel even worse.
Can you ask your GP to refer you to a teaching hospital for some expert help? They could investigate whether there’s anything else that would help your levels, and whether there’s anything in particular that’s led to your high doses. Have you always needed a lot of insulin?
Your workplace should accommodate any appointments you need under the Equality Act so don’t feel you need to wait or take holiday time.
Sitting at a desk all day, as you say, is not the best for a T1, is there anything you could do to get more exercise? A brisk walk on the way to and from work might make a big diffference, even if you drive there and go round a couple of blocks before you go through the door. I find exercise is a mood lifter too.
Three years isn’t long. You’re young, no complications, and despite the dire warnings that DSNs seem to have on a loop these days you’re more likely to have a long and healthy life than fall prey to any of the dreaded ‘the end of the world is nigh’ stuff that they keep banging on about. Some of us have had T1 for decades, getting it before the development of portable blood testing kit and sophisticated insulins.
Don’t despair.
When I had a dark time recently, before switching insulins, the best advice I was given was to take a week off from frequent testing and worrying and relax. Try it? Get a good book and lose yourself in it. See a happy film. Have a laugh with friends. And put T1 in the background for a few days?
Have a virtual hug from me too - you’re about the same age as my daughters, so have a proxy mummy hug

Thank you

 

[jo789]

TID 51 years on insulin.
Glad to see posting and writing more about your situation.
Some thoughts based on my experience:
I maybe biased and have not ever tried Tresiba but i found the flexibility of taking Levemir twice daily gave me a better chance to prevent night hypos but take sufficient for daytime. Afterall basal levels fluctuate over the 24 hours, so can Tresiba really control that? Also i found Novorapid worked best if i took it 1 hour before meals. If Fiasp had been available back then i woukd have volunteered to try it asap. It was only after 45 years on insulin injections that i needed the insulin pump to maintain control although i was struggling probably from the 40 year mark.
Also exercise in moderation ( for me walking, gentle swimming, not running, playing squash etc) did wonders for my mood and blood sugars. However i also needed anti-depressants having diabetes and a strong family history of depression. O not be afraid to be assessed for mental health if things do not improve.
I worked at a largely desk bound job for years. The trick was to find every excuse to get up and walk about, use stairs not lifts and plan to be able to walk a good distance to car, bus stop etc. Weekends involved gardening, walking to and fro shops to do shopping ( and to the hardware store when i could get away with it!!)., kite flying and some socialvtime. Laughing is a form ofvexercise and stress relief. Joining a kite club helped also.
I hope the above might help you. Sometimes improvement is incremental and persisting to obtain the maximal benefit takes some time. Best Wishes !

Thank you