Burn Out

[Carpe Diem]

Hi all

Type 1 diabetic for 23 years. Take Tresiba and Novorapid. Changed from Lantus to Tresiba 7 years ago, chest felt tight all the time on lantus. Tresiba pushes me low at night time usually from 2am inevitably have to eat in the early hours. Tried everything reduced dosage now on 12. I'd like to know if anyone experiences the same and any suggestions on food to slow down the lows at night. What to eat? Everyday is different no matter what I do. Eat lots of slow release wholegrain oat foods but levels all over the place never stable I have a fast metabolism which does not help. I really don't want to go back to Lantus. Tried a pump ended up in hospital with ketones. Thank you.

 

[EllieM]

Hi @Carpe Diem and welcome to the forums.

I'm not a lantus fan struggled with hypos and unpredictable lows) so I feel your pain. I am much happier on a pump and wonder if you have completely ruled out trying one again? How long ago did you have your bad experience?

I assume you are using a cgm? Are you confident that the 2am lows are real and not compression lows (some cgms read low if you lie on them).?

I would be contacting my team about this situation, because nightly hypos are no fun at all. You say you've reduced the tresiba, but what happens if you reduce it more?

Tagging @Antje77 who I know is on tresiba.

Good luck.

 

[Carpe Diem]

Hi

Thanks for your reply.

Lows are every night I have libre freestyle 2 I understand what you mean about compression bit. I test with blood strips if needed. Unfortunately my latest freestyle is reading higher by 3 levels than actual. The diabetes team try their best and give advice. I did say to consultant unless you have the illness I feel living with it and treating it are completely different. It feels like I'm either shaking from lows or head spinning from highs. Diagnosed at 39. Thanks

 

[Carpe Diem]

If I reduce Tresiba left with crazy highs in day time. Tried adjusting Novorapid to compensate end up with lows. End up doing corrections to bring it down .

The bad experience with pump was 2018. Also gave me upsetting surge episodes where I had to sit down suddenly or risk falling down. I spoke to a health care professional who experienced this also. It's complex.

 

[Jantype1]

If I reduce Tresiba left with crazy highs in day time. Tried adjusting Novorapid to compensate end up with lows. End up doing corrections to bring it down .

The bad experience with pump was 2018. Also gave me upsetting surge episodes where I had to sit down suddenly or risk falling down. I spoke to a health care professional who experienced this also. It's complex.

I experience exactly the same.
I take between 16 to 24 units of Levemir in the morning about an hour after breakfast, and 0 to 6 units of Novorapid before meals. I find that if I inject Levemir too early in the morning ie along with the Novorapid, I experience hypos at 10.30 am whereas if I inject later I usually manage to make lunchtime without having to snack. Or not, it depends.
The nocturnal hypos are very frequent unfortunately and can sometimes last for over an hour even two. I feel exhausted most of the time. I'm continually adjusting my insulin and food intake to get some kind of stability. It occasionally works then it all goes haywire again and for no apparent reason. For example my morning cappuccino doesn't always have the same impact even though it is made to the same recipe and size everyday.....
I've had blood test to check on my thyroid etc and all is ok there however the last time I spoke to my endo she suggested that it could be an unstable response due to fluctuating adrenaline/cortisol levels. At the moment I am trying to relax and not be too stressed out but this whole situation stresses me to breaking point sometimes, even tears.
I am reluctant to try a pump for exactly the same reasons - I have a libre 2 and it doesn't always keep up with my ups and downs and I have been caught out a couple of times when I was having a hypo so there is no way that I would feel confident with a pump!
I wish you well - this disease is a challenge a minute. My GP keeps telling me - look on the bright side! I could have been diagnosed with type 1 diabetes at 10 years old! At least it left me in peace until I was 67.....yeah.
Good luck to you. x

 

[Carpe Diem]

Thank you for your reply.

I identify with everything you have said each day is different even with same food same patterns.

Absolutely adrenaline/cortisol has a massive effect. On top of the lows/highs, exhaustion, no energy the list is endless so much to factor in. Constantly researching trying to find answers. Slow release food, food combinations, glycemic index. Always believed stem cells hold the answer. Just want to find something that's going to slow it down and stabilise. I live in hope.

I have low tolerance to medications. Doctor wants me to take statins but they make me feel unwell. I look for other natural ways to reduce cholesterol whatever I do causes havoc with my levels

I am grateful for the extended time insulin has given me to watch my daughter grow. She was 7 when I was diagnosed I was newly separated with a full time job, a mortgage and bills to pay. I returned to work after 6 weeks on insulin for the rest of my life. I had no choice. Whatever age we are diagnosed how we all get through what we do leaves me with admiration and much respect for all dealing with this every hour of every day. It's more than a condition that's for sure.

I appreciate being able to talk to someone who understands , it does help. Thank you and good luck to you too. I am 62 now .

Another day.. here we go again x

 

[Jantype1]

Thank you for your reply.

I identify with everything you have said each day is different even with same food same patterns.

Absolutely adrenaline/cortisol has a massive effect. On top of the lows/highs, exhaustion, no energy the list is endless so much to factor in. Constantly researching trying to find answers. Slow release food, food combinations, glycemic index. Always believed stem cells hold the answer. Just want to find something that's going to slow it down and stabilise. I live in hope.

I have low tolerance to medications. Doctor wants me to take statins but they make me feel unwell. I look for other natural ways to reduce cholesterol whatever I do causes havoc with my levels

I am grateful for the extended time insulin has given me to watch my daughter grow. She was 7 when I was diagnosed I was newly separated with a full time job, a mortgage and bills to pay. I returned to work after 6 weeks on insulin for the rest of my life. I had no choice. Whatever age we are diagnosed how we all get through what we do leaves me with admiration and much respect for all dealing with this every hour of every day. It's more than a condition that's for sure.

I appreciate being able to talk to someone who understands , it does help. Thank you and good luck to you too. I am 62 now .

Another day.. here we go again x

Statins make me feel unwell also so my doctor put me on Ezetimibe which was no better so I'm not taking any meds for my cholesterol for the moment. That's an extra source of worry and frustration as it means cutting down on fats which make our meals so much tastier.
To help delay any nocturnal hypos you could try some wholemeal bread with peanut butter just before you go to bed. If my sugar is low in the evening I don't inject any insulin and I expect you are the same. Sometimes it works, sometimes not, as with everything.
I'm very organised with my food and injections, sleep, physical activities etc, but as you say no two days are the same despite this.
When you talk about stem cell do you mean a cure? I talked about this to my endo when I was still in the "honeymoon period" and she laughed for like 10 minutes. It's far too expensive here in France. I hear that Germany and Switzerland are forging ahead with trials but I would have to go private and just cannot afford it.
But I live in hope! x

 

[Carpe Diem]

I've tried peanut butter on toast my lows start around 2/3am. I feel unwell if I eat and don't inject . I have tried tiny amount of insulin to cover food and try keep stable for the lows. Just doesn't work.

Research is ongoing . I cannot afford private health either. Hope keeps us going never give up. X

 

[Antje77]

Have you tried reducing your carbs to reduce the rollercoaster ups and downs?
I find it much easier to keep my bg stable if I don't try to dose for high carb meals.

 

[EllieM]

In an ideal world T1s would be able to eat what they like and inject for it. Some do manage this but others (many, most, or only a few?) find it harder. Going low carb as @Antje77 mentions above might be worth trying, because injecting less insulin can make it easier to manage hypos.

I have always assumed that if I am getting hypos I should take less insulin, which is relatively easy to do on a pump because I can have different basal rates at different times of day. I personally don't go ultra low carb because then I'd have to worry about dosing for protein, and I'm too lazy for that, but tend to average less than 100g a day.

But as far as I am concerned hypos are one of the worst aspects of T1 diabetes. I hate and loathe them. My sympathies to anyone who is struggling with night time hypos in particular because it means you don't get decent sleep. (Though I still have to work at tweaking my pump rates, it does seem to have drastically reduced my hypos. I've been on it since March 2024, was on lantus and humalog before that. Yes, you have to be more careful about avoiding DKA with a pump, because short acting insulin wears off in 4-5 hours, so if you get a pump failure it can send you to DKA much faster than someone with basal insulin in their system.)

If you are interested in the very low carb approach it might be worth looking at Dr Bernstein's work eg (The Diabetes solution book but he also has free youtube videos .)

 

[Carpe Diem]

Have you tried reducing your carbs to reduce the rollercoaster ups and downs?
I find it much easier to keep my bg stable if I don't try to dose for high carb meals.

Hi

Yes have tried low carbs my energy levels aren't great. I'm told have vitamin d deficiency take tablet's prescribed and my levels rocket. I do try everyday it's very overwhelming. Thanks

 

[Carpe Diem]

In an ideal world T1s would be able to eat what they like and inject for it. Some do manage this but others (many, most, or only a few?) find it harder. Going low carb as @Antje77 mentions above might be worth trying, because injecting less insulin can make it easier to manage hypos.

I have always assumed that if I am getting hypos I should take less insulin, which is relatively easy to do on a pump because I can have different basal rates at different times of day. I personally don't go ultra low carb because then I'd have to worry about dosing for protein, and I'm too lazy for that, but tend to average less than 100g a day.

But as far as I am concerned hypos are one of the worst aspects of T1 diabetes. I hate and loathe them. My sympathies to anyone who is struggling with night time hypos in particular because it means you don't get decent sleep. (Though I still have to work at tweaking my pump rates, it does seem to have drastically reduced my hypos. I've been on it since March 2024, was on lantus and humalog before that. Yes, you have to be more careful about avoiding DKA with a pump, because short acting insulin wears off in 4-5 hours, so if you get a pump failure it can send you to DKA much faster than someone with basal insulin in their system.)

If you are interested in the very low carb approach it might be worth looking at Dr Bernstein's work eg (The Diabetes solution book but he also has free youtube videos .)

Hi

Thanks for information. I don't drink or smoke. Carb intake not massive I try go with slow release foods. Rarely eat potato's never pizza complex carbohydrates are a nightmare. I've reduced Tresiba and tried different times of day. I feel its an overlap it's linear drops overnight are exhausting. Hypos are traumatic that awful shaking feeling downward arrow countdown on sensor , short amount of time to block it from dropping further.

 

[CheeseSeaker]

Hi @Carpe Diem,

Sounds like something definitely 'odd' is going on here.

Do you have a graph from your CGM (preferably whole 24 hours, and a rough estimate of what you ate and bolused at what time)?

Trying to work out what your basal, bolus is doing to cause the night-time lows)

P.S. Generally I've found oats to be fairly fast carbs - if they are processed (rolled in porridge etc) the fibre is broken down and the carbs hit fairly quickly - possible this wont help as they can hit the bloodstream before Novorapid is doing its stuff (min 20 minutes for me, and not really working till 60mins) so you can get a peak in BG and a following crash when the insulin works.

 

[Carpe Diem]

Hi I'll try take a screen shot. Unfortunately 24 hour log book doesn't load it hasn't for months. My readings vary to actual blood sugars can be currently 1 to 3 lower than cgm. You will see the low this morning. I ate slice wholemeal bread and an oat digestive biscuit to bring it back up. Breakfast 4.5 novorapid. Then went high so 1.5 before shop. I take tresiba 14 now as daytime too high . Sorry attach file failed ? Thanks

 

[CheeseSeaker]

Hi @Carpe Diem,

The CGM will give the trend (even if the numbers are off - they are for all of us to some degree and some sensors worse or better than others).

Ok so Wholemeal bread - probably 25g of carbs, and a digestive 9g - so you're hitting 34g of carbs there.

Have a feeling you might need to look at your Insulin to carb ratio - but lets see.

Was breakfast the bread and biscuit - or was there more carbs to count?

 

[Carpe Diem]

Hi

My CGMs are fairly accurate this one displays levels higher than actual. When hypo happens early hours I will go back to blood glucose test strips as my safety net. It's just exhausting. Although I wouldn't be without CGM now far better than lots of daily blood glucose testing.

For hypo early hours. If its a very fast drop at 2.9 I would eat 2 jelly sweets and mini mars. If I waited 20 minutes for levels to increase doesn't work for me.

Last hypo early hours

1 slice wholemeal bread is 15.1 carb per slice

Oat Biscuit is 12.4 carb per biscuit

Breakfast at 9am

Oats. 24.8 carbs

Tea

Everyday is different I am active with busy family and 3 pets. I used to love gymnastics and sports if anything was underweight. I keep trying, I have a fast metabolism which burns out my levels really fast. Just want my diabetes to be stable.

Thanks

 

[CheeseSeaker]

So taking one issue at a time (nighttime drop) I'm thinking Novorapid has a 5 hour duration (9-10 if pumping) so there may well be residual in your system when you go to bed.

What time do generally do your last bolus of Novorapid? About what time, how many carbs and how much Novorapid?

When do you inject Tresiba?

 

[Carpe Diem]

Last night. 1 slice cheese on toast wholemeal 6pm 3 units novorapid.

Tresiba at 5pm 14 units

Drop at 4am half slice bread biscuit

Breakfast Oats 6 units.

This mornin moving furniture and dog walk level now 11.

 

[CheeseSeaker]

Thinking the Novorapid will be mostly burnt out by 4am.

Tresiba can be active for upto 42 hours (so each day might add to yesterdays injection for a few hours at least. Possible that the peak of the 2 insulin injections is at 4am and you get you drop.

An easy one to try would be to move your Tresiba injection forward and see what happens (see if the 4am drop moves forward also) - if you can manage it try doing it at 1pm and see if your drop starts at 10-11pm.

You really need to speak to a DSN and present a log of activity (exercise food amounts and injections) so they can help - even if that means getting your GP to refer your to a specialist unit at the hospital.

 

[Carpe Diem]

Thanks. Yes tried different times it's always the early morning drop I think Tresiba is over lapping. Discussed with consultant who mentioned going back to Lantus. It's devil and deep blue sea scenario. Lantus made my chest tight tried splitting dose which gave me lows tea time. Tresiba is linea feel better than on lantus its the night times lows leave me exhausted and shaky .I was diagnosed at 39. Appreciate your help, I live in hope will find the answer somewhere.