Help needed

[NathanC11]

Hello this is my first post-

so I’ve been type one since I was 5, I’m now 24 years old. My control was always very good and somewhat easy until 2 years ago.

currently I’m using nova rapid and Tresiba

my problem being is my ratios seem to change on a daily basis.

I’ve done basil rate tests so many times and I’ll finally get it down then it will change within a week.

The past week I’ve been taking 17u once a day and today for example I’ve gone low about 6 times. My carb ratio also changes daily. I’ve been eating the same three meals every single day for the past month and nothing else, every morcil is weight down to a mg and I have the full micro and macro nutrient information so there is no error in that area.

yesterday I had my usual 45g of carbs for breakfast, I did my 1/15 dose which is 3 units. My fasting blood sugar was 8.1 mmol and 2 hours later it was 13.5 mmol and 4 hours later it was 10.3mmol.

so today I ate the exact same meal and added an extra unit. 30 minutes after eating I was 4.1mmol, I ate my 15 extra carbs , waited 15 minutes and checked again and I had a 5.6mmol so I left it. An hour later I was 3.8 mmol, so again another 15 carbs, long story short this continued all day. I had my usual 50 carb lunch and didn’t even take my typical dose and still at 6pm today I’m still going low despite I’ve had nearly 150 carbs with zero dose.

this is a constant battle that happens every week or two and no matter how hard I try I can’t get a consistent Basil or bolus, it’s contantly changing no matter how structured my diet, activity and sleep is.

I’ve been to 3 endocrinologists and the hospital more times than I can count something isn’t right I feel horrible all the time, have no energy and constant brain fog and all of this started about two years ago, all the endocrinologists kinda just shrug their shoulders and say “try taking a little less or more insulin and we will see you in 3 months and check your hba1c”. Every other doctor thinks it’s in my head, prior to all of this my hba1c has always been below 7%. My last one was 8.9, I don’t know what to do. The constant lows from trying to have my control so strict is horrible and whenever I back off my doses even a little (10%) I end up with highs and the fear of long term damage is causing extreme anxiety and depression I’ve lost my passion for everything and am constantly in fear.

I don’t know what else to try I don’t eat processed foods or anything with a high glycemic index, my life is extremely structured, and there’s no other variable I can point to.

 

[EllieM]

Welcome to the forums @NathanC11 . As a fellow T1, I feel your pain. My ratios vary a bit but nothing like that. However I'll tag @Antje77 who I believe also has quite a lot of variability in ratios.

Some thoughts (your clinic has probably already been through this)
1) how are your injection sites? If you inject into an overused spot it can affect insulin absorption
2) are you using a libre or cgm? This might at least help you act on hypos before you get them. If in the UK, you should now be eligible (if in UK, if not, then you can still ask?)
3) Pump? I'm not a pumper but maybe some of them could comment on whether that can help. @Juicyj @In Response
4) Have you considered reducing the carbs in your diet just so you can reduce your insulin needs???

As for the long term damage, yes this is a potential issue but it's one that happens over a very long period so it might be better not to stress about it so much. (After 52 years, with some outstandingly high blood sugars in the past, I concentrate on my future readings rather than stressing over one day's upset. Still have working kidneys, eyes, limbs etc ).

I'm sorry you are having such a bad time at the moment, lots of virtual hugs.

 

[EllieM]

currently I’m using nova rapid and Tresiba

it might be worth asking your team about changing to a shorter acting basal, as my understanding of tresiba is that it's very slow to change doses in it.

 

[NathanC11]

Welcome to the forums @NathanC11 . As a fellow T1, I feel your pain. My ratios vary a bit but nothing like that. However I'll tag @Antje77 who I believe also has quite a lot of variability in ratios.

Some thoughts (your clinic has probably already been through this)
1) how are your injection sites? If you inject into an overused spot it can affect insulin absorption
2) are you using a libre or cgm? This might at least help you act on hypos before you get them. If in the UK, you should now be eligible (if in UK, if not, then you can still ask?)
3) Pump? I'm not a pumper but maybe some of them could comment on whether that can help. @Juicyj @In Response
4) Have you considered reducing the carbs in your diet just so you can reduce your insulin needs???

As for the long term damage, yes this is a potential issue but it's one that happens over a very long period so it might be better not to stress about it so much. (After 52 years, with some outstandingly high blood sugars in the past, I concentrate on my future readings rather than stressing over one day's upset. Still have working kidneys, eyes, limbs etc ).

I'm sorry you are having such a bad time at the moment, lots of virtual hugs.

Hi Ellie,
Thank you so much for taking the time to reply,

for injection sites I rotate frequently pattern being left side shoulder, tricep, stomach, glute, quad, and then repeat on the right side.

I use a countour next meter to check my blood sugars, I’m located in Canada. I was on a insulin pump previously but have since switched back to syringe and meter, the career I’m in I am exposed to water, and equipment that can damage electronics

As for diet wise I’ve since cut my daily intake to around 120, I used to be around 300 would you think reducing this further would aid ? I found that when I tried keto the high fat and protein would cause my blood sugar to spike.

I hope I can reach that level one day aswell or hopefully by that mark there is a cure ! I’ve been trying to do that but whenever I get even a twitch in my leg nowadays I stress over it being complications.

Once again thank you for taking the time !

 

[NathanC11]

it might be worth asking your team about changing to a shorter acting basal, as my understanding of tresiba is that it's very slow to change doses in it.

I spoke with them on Monday during my last visit I understand it takes 3 full days for it to stabilize, they suggested lowering it to 14u and upping my carb ratio slowly, the only concern I have around that is when I lower the tresiba I wake up with a higher glucose.

I was on Lantus previously before being transitioned

 

[EllieM]

the career I’m in I am exposed to water, and equipment that can damage electronics

Most cgms are OK in water, but I don't know about electronic damaging equipment. I found my life improved massively when I got a cgm (first libre and now dexcom, though I've had to self fund both). A lot of people find their levels rise first thing in the morning (dawn phenomena) which is where pumpers have an advantage, because they can increase their basal rates then. A sensor would allow you to see what your bg is doing at night.

I'm in New Zealand, where the only basal available is lantus (which I now split to give myself slightly more flexibility in coverage). I believe levemir is the shortest acting one, so might also be a possibility for you, depending on Canadian systems. Most of our active T1s are in the UK, so are asleep now, but I'm sure you'll get more responses when they post again.

As for going lower carb, some T1s swear by Dr Bernstein and his Diabetic Solution book, though I personally don't go that low carb, as I don't want to have to worry about bolusing for protein. (Carb counting is enough for me.)

But if you are still transitioning into your tresiba I'd expect things to be volatile, as getting the basal right makes a massive difference to control...

Once again, welcome. There are some extremely knowledgeable T1s here, hopefully they can give you some helpful suggestions.

 

[In Response]

@NathanC11 sorry to read about your challenges.
As @EllieM mentioned, a shorter acting basal such as Levemir may benefit you more than Tresiba if your requirements vary so much.
Reading about your bolus calculations, you only mention your ratios and not your correction factor. If you start on a high BG, you will need to take the correction down to your target level into consideration as well as the ratio. Then, if your levels go high, it is likely your body becomes insulin resistant so you need a high correction.

You mentioned you eat the same every day so you expect your dose to be the same. Does absolutely everything in your life remain the same? Do you sleep well every night? Are some days more stressful than others? Do you exercise more some days? Is the weather the same every day? All of these things and more (try googling "42 things that affect blood sugars") can make changes to our blood sugars.

 

[Dianemacfaden]

Hello this is my first post-

so I’ve been type one since I was 5, I’m now 24 years old. My control was always very good and somewhat easy until 2 years ago.

currently I’m using nova rapid and Tresiba

my problem being is my ratios seem to change on a daily basis.

I’ve done basil rate tests so many times and I’ll finally get it down then it will change within a week.

The past week I’ve been taking 17u once a day and today for example I’ve gone low about 6 times. My carb ratio also changes daily. I’ve been eating the same three meals every single day for the past month and nothing else, every morcil is weight down to a mg and I have the full micro and macro nutrient information so there is no error in that area.

yesterday I had my usual 45g of carbs for breakfast, I did my 1/15 dose which is 3 units. My fasting blood sugar was 8.1 mmol and 2 hours later it was 13.5 mmol and 4 hours later it was 10.3mmol.

so today I ate the exact same meal and added an extra unit. 30 minutes after eating I was 4.1mmol, I ate my 15 extra carbs , waited 15 minutes and checked again and I had a 5.6mmol so I left it. An hour later I was 3.8 mmol, so again another 15 carbs, long story short this continued all day. I had my usual 50 carb lunch and didn’t even take my typical dose and still at 6pm today I’m still going low despite I’ve had nearly 150 carbs with zero dose.

this is a constant battle that happens every week or two and no matter how hard I try I can’t get a consistent Basil or bolus, it’s contantly changing no matter how structured my diet, activity and sleep is.

I’ve been to 3 endocrinologists and the hospital more times than I can count something isn’t right I feel horrible all the time, have no energy and constant brain fog and all of this started about two years ago, all the endocrinologists kinda just shrug their shoulders and say “try taking a little less or more insulin and we will see you in 3 months and check your hba1c”. Every other doctor thinks it’s in my head, prior to all of this my hba1c has always been below 7%. My last one was 8.9, I don’t know what to do. The constant lows from trying to have my control so strict is horrible and whenever I back off my doses even a little (10%) I end up with highs and the fear of long term damage is causing extreme anxiety and depression I’ve lost my passion for everything and am constantly in fear.

I don’t know what else to try I don’t eat processed foods or anything with a high glycemic index, my life is extremely structured, and there’s no other variable I can point to.

As having had type 1 for over 50 years so experienced I fully appreciate how tricky things can be
I have recently been switched to a new short term insulin called Fiasp which is an alternative to Novorapid and works more instantly with a shorter profile so stops spikes after carbs if you get it right.
Also I would say getting your background insulin dose right is key. I haven’t heard of the one you are using but find levemir works best for me and I take it twice a day before breakfast and about 8pm after dinner. Split your dose into 2 and try a couple of no carb or low carb days to see if you are still going hypo.
chat with your diabetes team about the different insulin and perhaps a Dafne refresher course.
Also get a Freestyle Libre sensor too as they are life changing
Take care
Diane

 

[NathanC11]

@NathanC11 sorry to read about your challenges.
As @EllieM mentioned, a shorter acting basal such as Levemir may benefit you more than Tresiba if your requirements vary so much.
Reading about your bolus calculations, you only mention your ratios and not your correction factor. If you start on a high BG, you will need to take the correction down to your target level into consideration as well as the ratio. Then, if your levels go high, it is likely your body becomes insulin resistant so you need a high correction.

You mentioned you eat the same every day so you expect your dose to be the same. Does absolutely everything in your life remain the same? Do you sleep well every night? Are some days more stressful than others? Do you exercise more some days? Is the weather the same every day? All of these things and more (try googling "42 things that affect blood sugars") can make changes to our blood sugars.

definetly going to look into levemir, my correction dose is typically 1u/3mmol unless it’s a stubborn high then I’ll test again after the nova has worked it’s way through and make a correction accordingly- for the most part yes even on my days off a target all my activity to the same degree as if it was a work day, my daily evening walks are at the same time and duration and same as time in the gym.

My stress levels have been really high recently and my sleep has definety suffered, I’m in bed at the same time but I wake up about 5 times every night

 

[NathanC11]

As having had type 1 for over 50 years so experienced I fully appreciate how tricky things can be
I have recently been switched to a new short term insulin called Fiasp which is an alternative to Novorapid and works more instantly with a shorter profile so stops spikes after carbs if you get it right.
Also I would say getting your background insulin dose right is key. I haven’t heard of the one you are using but find levemir works best for me and I take it twice a day before breakfast and about 8pm after dinner. Split your dose into 2 and try a couple of no carb or low carb days to see if you are still going hypo.
chat with your diabetes team about the different insulin and perhaps a Dafne refresher course.
Also get a Freestyle Libre sensor too as they are life changing
Take care
Diane

Hi Diana,
Thanks for taking the time I will defiantly consult my team on fiasp, do you have any recommendations for the background insulin ? I’ll do basil tests constantly where I’ll fast and make adjustments to get it to where my blood sugar stays in the same target range (with no more of a fluctuation of 1mmol) for the day, which will work for a little bit then I’ll have a spell where I either have consistent highs or lows and have to start again

 

[Paulaah]

Hi,

Reading your original post is like looking in the mirror at me. I’m in a bit of a mess at the minute. Like you, I’ve had excellent control and a great quality of life for 10 years and then the past 2 have been horrific. Exactly as you describe- I couldn’t be more conscientious and I put tons of all-consuming effort in! I experience exactly the same drastic changes in terms of ratio and background on a 2 week basis but with no consistency within those two week cycles. By the time I’ve figured out what’s changed and adjusted it all - it changes again. Also, like you - if I round up I crash, if I round down I go mega high. There’s literally no steady middle ground.

I thought it might be that I’m female and aged 50 and hormone related but I’m fascinated to hear your experience (taking it that you are male?!).

My own hospital team have given me much the same comments yours have given you. It’s not helpful really as I, too, am fearful of long term complications and find myself high a lot of the time because either I’m nudging down my insulin to stay safe from crashing, or chasing highs when I suddenly go insulin resistant. Then I get used to taking more insulin and then in a heartbeat it all changes again, leaving me trying to figure out what’s next…..and even more scared of food and insulin, and having panic attacks when I’ve jabbed.

I’ve been so desperate I’ve paid to see a private specialist. I’ve had a full set of bloods done to

no avail. I’m not sure if any of this rings true to you but this is his current thoughts…… I too have been cutting down on carbs after reading Bernstein, taking in about 30 to 60g per day and sometimes skipping carbs altogether especially before exercise so I don’t have fast acting on board. I was getting high ketones when having normal blood sugars (which I discovered a bit by accident). He thinks I’m in starvation mode and I’ve mucked up my Krebs cycle so the insulin is not behaving in the normal way and neither is the carbs. He’s told me to up my carbs to 150g per day. I’m finding that a bit tricky so aiming for 120g is better for me, but it’s really challenging because it doesn’t wave a magic wand over the fear of the volatility and sensitivity. So I’m still left with the all consuming fear and anxiety and control that it has on my life.

I’ve also just moved to Tresiba (nearly a year ago) and I’m currently taking 14u per day. Novo rapid fast acting. Varying ratios!!!

Things have steadied a bit but it’s still early days to know for sure. Any thoughts would be most welcome. Has anybody else had this volatility problem and sorted it?

 

[NathanC11]

Hi,

Reading your original post is like looking in the mirror at me. I’m in a bit of a mess at the minute. Like you, I’ve had excellent control and a great quality of life for 10 years and then the past 2 have been horrific. Exactly as you describe- I couldn’t be more conscientious and I put tons of all-consuming effort in! I experience exactly the same drastic changes in terms of ratio and background on a 2 week basis but with no consistency within those two week cycles. By the time I’ve figured out what’s changed and adjusted it all - it changes again. Also, like you - if I round up I crash, if I round down I go mega high. There’s literally no steady middle ground.

I thought it might be that I’m female and aged 50 and hormone related but I’m fascinated to hear your experience (taking it that you are male?!).

My own hospital team have given me much the same comments yours have given you. It’s not helpful really as I, too, am fearful of long term complications and find myself high a lot of the time because either I’m nudging down my insulin to stay safe from crashing, or chasing highs when I suddenly go insulin resistant. Then I get used to taking more insulin and then in a heartbeat it all changes again, leaving me trying to figure out what’s next…..and even more scared of food and insulin, and having panic attacks when I’ve jabbed.

I’ve been so desperate I’ve paid to see a private specialist. I’ve had a full set of bloods done to

no avail. I’m not sure if any of this rings true to you but this is his current thoughts…… I too have been cutting down on carbs after reading Bernstein, taking in about 30 to 60g per day and sometimes skipping carbs altogether especially before exercise so I don’t have fast acting on board. I was getting high ketones when having normal blood sugars (which I discovered a bit by accident). He thinks I’m in starvation mode and I’ve mucked up my Krebs cycle so the insulin is not behaving in the normal way and neither is the carbs. He’s told me to up my carbs to 150g per day. I’m finding that a bit tricky so aiming for 120g is better for me, but it’s really challenging because it doesn’t wave a magic wand over the fear of the volatility and sensitivity. So I’m still left with the all consuming fear and anxiety and control that it has on my life.

I’ve also just moved to Tresiba (nearly a year ago) and I’m currently taking 14u per day. Novo rapid fast acting. Varying ratios!!!

Things have steadied a bit but it’s still early days to know for sure. Any thoughts would be most welcome. Has anybody else had this volatility problem and sorted it?

Hi Paula,

yes I am a 24 year old male, you could be spot on with your hormone conclusion , I’ve had my testosterone checked multiple times and it seems to be fluctuating. Honestly over this time span I’ve been having these problems I wouldn’t eat all day because I was so paranoid in an attempt to get my basil perfect. I’ve also had an extensive amount of blood work, urine tests and mri’s to try to find a cause for anything. Nothing seems to work and like yourself that two week window is really the best I get then I have to do a full blown reset. For whatever reason I also find I have insulin resistance late at night whereas it’s super sensitive in the AM.

 

[Paulaah]

Hi Nathan,

The hormone thing is still a big question mark. But for me - so is the fasting / starvation mode issue this specialist says I’ve induced. Would you mind telling me how many times you fast or carb free, because I have been doing that too. Totally skipping meals in order to either test background or in order to put in corrections without the food getting in the way and making me high again before the correction does it’s job. I find novorapid so bloomin’ slow so I’m counting the 5 hour cycle all the time waiting to see what to do next. Fiasp worries me because when I have the crashing lows, I of course get a warning through my libre but even then I sometimes have to load in the “lift” glucose in order to turn it around as I’m crashing so fast. Can only see that fiasp would make that worse.

On the plus point - I’m glad I’ve read your post because sometimes I question myself whether it’s in my own head!!!! Now I know there are at least 2 of us! It’s definitely “real” - and as I keep telling the experts …. I’ve done it brilliantly for 10 years so a) I can do it, and b) I know what it’s supposed to look like when it’s right and this isn’t it!

 

[StewM]

Hi Nathan,

The hormone thing is still a big question mark. But for me - so is the fasting / starvation mode issue this specialist says I’ve induced. Would you mind telling me how many times you fast or carb free, because I have been doing that too. Totally skipping meals in order to either test background or in order to put in corrections without the food getting in the way and making me high again before the correction does it’s job. I find novorapid so bloomin’ slow so I’m counting the 5 hour cycle all the time waiting to see what to do next. Fiasp worries me because when I have the crashing lows, I of course get a warning through my libre but even then I sometimes have to load in the “lift” glucose in order to turn it around as I’m crashing so fast. Can only see that fiasp would make that worse.

On the plus point - I’m glad I’ve read your post because sometimes I question myself whether it’s in my own head!!!! Now I know there are at least 2 of us! It’s definitely “real” - and as I keep telling the experts …. I’ve done it brilliantly for 10 years so a) I can do it, and b) I know what it’s supposed to look like when it’s right and this isn’t it!

Yeah, you're probably right to be wary of Fiasp. It obviously varies from person to person, but Fiasp working at 'optimal' strength has the tendency to hit my Blood Sugar hard and fast, which if the dosage is modestly too high can send you low real fast.

 

[Dianemacfaden]

Hi Diana,
Thanks for taking the time I will defiantly consult my team on fiasp, do you have any recommendations for the background insulin ? I’ll do basil tests constantly where I’ll fast and make adjustments to get it to where my blood sugar stays in the same target range (with no more of a fluctuation of 1mmol) for the day, which will work for a little bit then I’ll have a spell where I either have consistent highs or lows and have to start again

Yes I would recommend Levemir background insulin which I split into 2 doses each day. Try a couple of carb free days to get your daytime dose right first