Overwhelmed and defeated newbie T__T

[nerdyt1d]

Hi everyone, I was diagnosed with Type 1 last summer, still very overwhelmed. Sorry about the long post!

I'm on daily injections and Dexcom.

I feel that despite my best efforts, and reading and educating myself, I haven't been able to figure out my correct basal dose nor insulin-to-carb ratio, they both seem to vary from day to day and even in the same day, even if I'm eating the same meals/macros.

My usual pattern is, I carb count, pre-bolus, eat, hypo ~1hr after the meal, go back in range, start going high 3-4 hrs after the meal, give a correction, which sometimes works and gets me back in range, sometimes it's not enough and I need another one, sometimes it's too much and I hypo again.

The nurse told me that my control is too tight (I've alarms at 3.8 - 7.3 mmol/L) and that I react too often, so I tried to wait and correct only at levels above 10 mmol/L, which got me to super high levels of >17 mmol/L.

For context, I eat a lot of (mostly vegan) protein and fiber, and sometimes also high fat (cheese and nuts) with every meal. Aiming for >100g of carbs/day as advised by my diabetes team because I still need to gain some weight.
Lately I've been splitting the bolus, which some days works ok and I avoid the post meal hypo, but I'm still not sure about the dose split (50/50?) and timing (how many hours should I wait for that second dose?)

Weirdly enough, I had better results by injecting doses every couple of hours for an entire afternoon (6 hours total maybe?), but it's unsustainable and stressful and I wonder what else I could try.

I have also increased my basal, some days it keeps me more flat between meals, and some days it doesn't.
I have tried exercise to lower my blood sugar, but every type of movement right now spikes me...

I don't know what I'm missing, honestly... if you could share some resources, or personal experiences, I would really appreciate it!

Thank you so much,
Nerdy

 

[EllieM]

Hi @nerdyt1d and welcome to the forums

Though I love my dexcom I do sometimes wonder whether life was easier when I had to make do with a glucometer and was blissfully unaware of the peaks. (And you don't want to know what was control was like in my pre-glucometer teens).

Rebounds after hypos are definitely common and I find my levels much easier to manage if I can avoid the hypos,

What basal are you using?

I personally find my levels infinitely easier to manage when my basal is correct, though unfortunately my basal needs do vary. Gym type exercise tends to increase my bg in the short term (though it may lower my basal needs the next day), a long walk tends to reduce it.

Any chance your team would give you a pump?

Of course if you are less than a year in then the honeymoon effect may still be in play, as your pancreas randomly squirts out insulin and messes up your calculations....

My advice would be to try not to be so hard on yourself if your levels aren't where you want them to be.

Hopefully some more people will be along soon to make suggestions. I believe @Marie 2 is Vegan.

 

[Juicyj]

Hello @nerdyt1d

Sorry to hear you're feeling overwhelmed, sounds like t1d is consuming your life..

I strived for perfection soon after diagnosis, wanting to keep a tight range, scared of hypers and hated hypos, still do, but taking your foot off the gas here I can see where your DSN is coming from because if your range is too tight then you put yourself under increased pressure, I personally couldn't cope with the alarms of a tight range, but as I was taught at DAFNE we need to wait 2-3 hours for the insulin to deplete and before making a correction, if you correct too soon you still have insulin working and loading more in means potential hypo, called insulin stacking. I have my range now set at 5-10mmol/l, I have to keep it at 5 as I drive and can easily/quickly drop from 4.5 to 3.9 so setting it at 5 gives me a good buffer and avoid really low hypos too.

To live ok with t1d to me, means being able to cope with imperfection, not obsessing with graphs, not stressing the highs either, I am a mum, work, run and am very active, I couldn't do any of that if I strived to keep my levels in a tight range though.

In regards to exercise - walking is best, most forms of exercise will raise levels as your body release hormones such as adrenaline/cortisol as a reaction and to encourage the liver to secrete glucose, hormones have quite an impact on my control, so I know what works and what doesn't', now I run and can cope fine with my levels in the morning but if I run at night I always go low after an hour, so time of day can too play at part in control, eating fat can delay the carb rise so you spike later. I can also eat the same thing day in day out and get different results too. Eating too much protein also causes a problem as we only bolus for carbs but eating too much protein means we convert this to glucose.

When I got over whelmed I focused on doing things I enjoyed like music, walks, etc etc, anything to distract me form thinking about t1d, these days it's a tiny part of my life, however now I use a pump so it takes a huge burden off me mentally, this is something to consider too, as you're micro managing your DSN may view this as meeting NICE guidelines for pump therapy, so worth a chat.

 

[nerdyt1d]

Thank you so much for your kind words @EllieM

Though I love my dexcom I do sometimes wonder whether life was easier when I had to make do with a glucometer and was blissfully unaware of the peaks.

I absolutely understand what you mean, sometimes even the 2-hour Dexcom warmup is a bit of a blessing haha

What basal are you using?

I am using Tresiba. The DSN suggested Levemir twice a day, although I'm hesitant to switch, they gave me Levemir at diagnosis and it wouldn't cover the full 24 hours... but may be worth trying again?

Any chance your team would give you a pump?

They wanted me to complete the DAFNE course first, which I did, and see if I can manage with MDIs. I guess because my time in range is OK at the moment, they don't think I meet the guidelines.
They also mentioned the honeymoon period messing up my numbers...

My advice would be to try not to be so hard on yourself if your levels aren't where you want them to be.

I am trying really hard, it just seems like something I should be able to do given the information available and technology...

Thank you again!

 

[nerdyt1d]

Thank you so much for your reply and kind words @Juicyj!

To live ok with t1d to me, means being able to cope with imperfection, not obsessing with graphs, not stressing the highs either, I am a mum, work, run and am very active, I couldn't do any of that if I strived to keep my levels in a tight range though.

Totally, I really hope I can get to a point where diabetes is not consuming every moment of my day. My mental health wasn't great even before the diagnosis, hence the struggling I think.

In regards to exercise - walking is best, most forms of exercise will raise levels as your body release hormones such as adrenaline/cortisol as a reaction and to encourage the liver to secrete glucose, hormones have quite an impact on my control, so I know what works and what doesn't', now I run and can cope fine with my levels in the morning but if I run at night I always go low after an hour, so time of day can too play at part in control, eating fat can delay the carb rise so you spike later. I can also eat the same thing day in day out and get different results too.

Thank you for sharing your experience, very helpful!
I will try walking more, and experimenting with exercise at different times of the day.
I've seen some people giving 1 or 2 units of quick acting insulin before exercise, maybe I will also try that.

Eating too much protein also causes a problem as we only bolus for carbs but eating too much protein means we convert this to glucose.

Good point. I'm trying to figure out how to bolus for protein as well, not sure how doable it is with injections...

however now I use a pump so it takes a huge burden off me mentally, this is something to consider too, as you're micro managing your DSN may view this as meeting NICE guidelines for pump therapy, so worth a chat.

I will mention it to the DSN again!

Thank you so much

 

[hellobear007]

Hi,

It sounds like you are doing all the right things & giving it your all. Be proud of that.

This is still a new diagnosis for you and a LOT to take in. Even after 25 years I struggle ( not in the best place with it right now but it will pass) and there sure are times when nothing makes sense.

I am wondering if you could still be in the honeymoon period and you are still producing some insulin naturally. Therefore things are going to be quite erratic for a while. I believe a C Peptide test will let you know if you are still making some of your own insulin.

Have you tried not using a pre bolus, especially if your levels are 6 or below before eating? That way your insulin won't start working before your meal is being digested. Especially if you are eating really healthy, which it sounds like you are. The good carbs, protein etc will have slower absorption. I use the Glycemic Index and Glycemic Load to try and figure out how my meal will be digested.... and I say try... it is still a work in progress.


Have you tried splitting your dose 40 / 60?

I would say 'try not to stress ' but I know that is easier said than done!

I am sure you will find a routine that works for you.

 

[Daibell]

Hi. First I don't agree with the advice given by your diabetes team to have >100gm carbs per day. Yes, carbs can increase weight but will also potentially increase BS swings. To increase weight it's better to focus on more proteins and fats where you can. I think it might be worth switching back to Levemir twice a day which is what I do. Having the split dose enables me to cope with BS which is difficult to manage. My night-time dose is often very different from the morning one and varies every day

 

[Antje77]

My usual pattern is, I carb count, pre-bolus, eat, hypo ~1hr after the meal, go back in range, start going high 3-4 hrs after the meal,

What bolus insulin do you use and how long before your meal do you inject?
If you see a clear pattern of dropping first after eating before rising again, it looks like your insulin hits before the meal, so you might want to try injecting a bit later to have meal and insulin hit at about the same time.

 

[nerdyt1d]

Hi @hellobear007, thank you for your kind words!

(not in the best place with it right now but it will pass)

I'm sorry to hear that, hope things get better soon!

I believe a C Peptide test will let you know if you are still making some of your own insulin.

I will ask my GP about this.

Have you tried not using a pre bolus, especially if your levels are 6 or below before eating? That way your insulin won't start working before your meal is being digested.

Oh I haven't yet, but I will try this tonight.
I admit I often forget to look at the glycemic index of foods, but it sounds like a good place to start!

Have you tried splitting your dose 40 / 60?

And I'll try this as well : )

Thank you so much!

 

[nerdyt1d]

Hi. First I don't agree with the advice given by your diabetes team to have >100gm carbs per day. Yes, carbs can increase weight but will also potentially increase BS swings. To increase weight it's better to focus on more proteins and fats where you can. I think it might be worth switching back to Levemir twice a day which is what I do. Having the split dose enables me to cope with BS which is difficult to manage. My night-time dose is often very different from the morning one and varies every day

Thank you so much for your kind words @Daibell!

I hadn't thought about potential swings due to carbs, it's definitely something to consider...

I think I'll give Levemir another try : )

Thanks again,

 

[nerdyt1d]

What bolus insulin do you use and how long before your meal do you inject?
If you see a clear pattern of dropping first after eating before rising again, it looks like your insulin hits before the meal, so you might want to try injecting a bit later to have meal and insulin hit at about the same time.

Hi @Antje77,

I usually pre-bolus 10-15 minutes before the meal, with Fiasp.

I guess pre-bolusing is something that everyone has always told me I should do, so I never thought about this. But it's a really good point, I will give it a try at my next meal.

Thank you so much,

 

[Antje77]

I usually pre-bolus 10-15 minutes before the meal, with Fiasp.

I guess pre-bolusing is something that everyone has always told me I should do

This is advised for the older insulins, Fiasp is especially designed to work quicker so many people don't need to prebolus with it, and some even inject halfway through or after the meal.

 

[Finnlee]

I usually pre-bolus 10-15 minutes before the meal, with Fiasp.

I guess pre-bolusing is something that everyone has always told me I should do, so I never thought about this. But it's a really good point, I will give it a try at my next meal.

Your pre-bolus time may vary depending on the insulin, your starting level and the meal.

For breakfast, I found I needed a long pre-bolus, even with with Lyumjev. It could be 45 minutes to an hour depending on my starting level.

For lunch I find I can generally bolus just before I start eating.

For dinner, I've had periods where I've needed to *post*-bolus. A pre-bolus will sometimes send me low mid-meal when the insulin hits, then high after I treat the low and the food starts to hit. I found bolusing 20 minutes after I start eating works for me in those periods, but I gradually worked my way there, 5 minutes at a time.

Rules like 15 minute pre-bolusing are good places to start, but you need to find what works for you and your diabetes. Start somewhere and make small, cautious changes until you find that sweet spot.

 

[nerdyt1d]

This is advised for the older insulins, Fiasp is especially designed to work quicker so many people don't need to prebolus with it, and some even inject halfway through or after the meal.

Thank you, I had no idea!

 

[nerdyt1d]

Your pre-bolus time may vary depending on the insulin, your starting level and the meal.

For breakfast, I found I needed a long pre-bolus, even with with Lyumjev. It could be 45 minutes to an hour depending on my starting level.

For lunch I find I can generally bolus just before I start eating.

For dinner, I've had periods where I've needed to *post*-bolus. A pre-bolus will sometimes send me low mid-meal when the insulin hits, then high after I treat the low and the food starts to hit. I found bolusing 20 minutes after I start eating works for me in those periods, but I gradually worked my way there, 5 minutes at a time.

Rules like 15 minute pre-bolusing are good places to start, but you need to find what works for you and your diabetes. Start somewhere and make small, cautious changes until you find that sweet spot.

Thank you so much, I never thought about experimenting with pre-bolus time!
I will try the 5 minute increase