Terrible time in range

[Gardevoir]

Hi,

For the first ~3 months, I've been doing great with my time in range. I'd hit anywhere from 85 to sometimes 95% pretty much every day.
Despite changing nothing (to my knowledge), for the last ~2 months, I've always been below 35%. Most of the time it lingers at 10-12 mmol/L. During my last appointment with my specialist, she briefly mentioned that there's no need to inject when I'm around 10-12 mmol/L as it's excessive to inject for it but if I'm okay with it, I'm free to do so. I kind of shrugged it off as I realized that this personally my best way of getting rid of that difference, but I've been doing terrible ever since that appointment.
Injecting in the evenings and nights barely do anything. Am I out of my honeymoon phase? I've lowered my ratio to be 1:18 instead of 1:20 for dinner since a few days ago but am considering 1:15. I'd usually go to bed feeling very content at anywhere from 5-8 mmol/L but have for the past 2 months only gone to bed at unpleasant numbers. Take yesterday for example: 10.8, inject and be woken up by my alarm, inject more and notice that even after 1-1,5 hours, I'm sitting at 24.2. Inject 8 units which would usually dump my glucose to around 4, but notice that I'm still on 17.2 7 hours later. Not all nights are this bad; this was 1 of the more difficult nights I've had. What am I supposed to do about this? I'm afraid of injecting many more units and going into a dangerous low.
I carefully count my carbs like I always have. I've always done a very good job at injecting the right amount for my food and I've been very proud of how quickly I picked all of this up as a newly diagnosed T1, but it feels like I've failed and I don't know what health consequences this has.
My glucose eventually becomes stable again in the morning. I inject what I'm used to and watch my sugars stabilize at 7.
My alarms are set to 4.2 - 12.0 mmol/L but I've been thinking of lowering my high alarm to be at 11.0. I don't mind injecting and I love data. I scan anywhere from 10 to 20, sometimes 25 times a day and inject on average 8 times.

Above all else, this very heavily affects my mood negatively. I don't know how to mentally get over it.

Thank you

 

[SimonP78]

Sounds like you might need more basal insulin, how much do you current take (if any)? My honeymoon phase is so far behind me that I've no idea how the transition happens.

Do you think your consultant is saying that you don't need to inject at those levels because your response may be more erratic as your own insulin production tapers off? Anyone with more recent experience of their honeymoon period?

 

[Gardevoir]

Sounds like you might need more basal insulin, how much do you current take (if any)? My honeymoon phase is so far behind me that I've no idea how the transition happens.

Do you think your consultant is saying that you don't need to inject at those levels because your response may be more erratic as your own insulin production tapers off? Anyone with more recent experience of their honeymoon period?

I take 12 basal insulin as of now. I think she told me it's excessive to inject at those levels as to not end up making myself fatigued or depressed by injecting so often, but she also mentioned that if I'm comfortable doing so, I'm free to do so.

 

[Antje77]

Hi @Gardevoir , I'm sorry to hear that diabetes isn't playing fair for you at the moment.

What I found during the first years (I'm 7 years in now) was that my insulin needs changed all the time.
Have you done any basal testing to make sure your basal dose is still doing its job?
If it isn't, bolusing will be almost impossible.

It might also be that your pancreas is spluttering out insulin unpredictably, making it almost impossible to correctly predict what you'll need.
I notice you use the same ratio throughout the day. Many of us have found that the ratio is very different for different times of day, this may be something to look into as well.

Have you read about Sugar Surfing? I found some of those techniques very useful with unpredictable insulin needs.

 

[Antje77]

I think she told me it's excessive to inject at those levels as to not end up making myself fatigued or depressed by injecting so often, but she also mentioned that if I'm comfortable doing so, I'm free to do so.

I get much more depressed from high numbers than from giving myself an extra injection.

 

[Gardevoir]

Hi @Gardevoir , I'm sorry to hear that diabetes isn't playing fair for you at the moment.

What I found during the first years (I'm 7 years in now) was that my insulin needs changed all the time.
Have you done any basal testing to make sure your basal dose is still doing its job?
If it isn't, bolusing will be almost impossible.

It might also be that your pancreas is spluttering out insulin unpredictably, making it almost impossible to correctly predict what you'll need.
I notice you use the same ratio throughout the day. Many of us have found that the ratio is very different for different times of day, this may be something to look into as well.

Have you read about Sugar Surfing? I found some of those techniques very useful with unpredictable insulin needs.

I've never heard of "sugar surfing". I'll try to up my evening dosage even more.
I don't really know what my basal dose is supposed to do. I was under the impression that higher basal dosage = less rapid-acting during the day. A base layer of insulin basically.

I get much more depressed from high numbers than from giving myself an extra injection.

I can't agree more. Hearing a low alarm and upping it within 5 minutes is 50 times better than hearing a high alarm in my opinion.

 

[Antje77]

I don't really know what my basal dose is supposed to do.

Your basal is supposed to keep you stable in the abscence of food, it's worth looking up basal testing through google.

The idea is that the bolus is used for food while the basal does the background job. So if you drop or rise without food or bolus insulin thrown into the mix, your basal dose may need to be adjusted.

 

[SimonP78]

You said your glucose levels become stable in the morning (by the morning, i.e. overnight, I'm assuming), which makes me slightly hesitant in hindsight re basal tweaking. If you're dropping overnight, then it's either sufficient basal or your evening bolus has managed to catch up and sort out BG levels.

Would you be able to post some data - a graph of blood sugar, insulin doses and carb intake perhaps over a typical 24 period?

During my last appointment with my specialist, she briefly mentioned that there's no need to inject when I'm around 10-12 mmol/L as it's excessive to inject for it but if I'm okay with it, I'm free to do so. I kind of shrugged it off as I realized that this personally my best way of getting rid of that difference, but I've been doing terrible ever since that appointment.

Out of interest what sort of specialist do you have - a hospital outpatient consultant, GP-based specialist, something in between? I'm curious as to the approach - basically how much practice they have with T1 diabetics who are potentially coming out of their honeymoon period.

Injecting in the evenings and nights barely do anything. Am I out of my honeymoon phase? I've lowered my ratio to be 1:18 instead of 1:20 for dinner since a few days ago but am considering 1:15.

I could quite happily double my carb to insulin ratio in the evening, so going from something like 10:1 during the day to 5:1. With that said, it's all changed recently, back to how it used to be so back to something along the lines of 10:1, like the rest of the day. I've no idea it's changed.

I'd usually go to bed feeling very content at anywhere from 5-8 mmol/L but have for the past 2 months only gone to bed at unpleasant numbers. Take yesterday for example: 10.8, inject and be woken up by my alarm, inject more and notice that even after 1-1,5 hours, I'm sitting at 24.2. Inject 8 units which would usually dump my glucose to around 4, but notice that I'm still on 17.2 7 hours later. Not all nights are this bad; this was 1 of the more difficult nights I've had. What am I supposed to do about this? I'm afraid of injecting many more units and going into a dangerous low.

I agree that injecting large quantities of bolus and then going to sleep is not a good combination. What (carbs, content, etc) do you eat for supper and at what time. I was running high overnight and this was at least partially because my evening insulin sensitivity had changed and so I was starting to head upwards once my supper-time bolus insulin wore off (and I was eating fairly late and fairly slow absorbing meals too).

Do you remain stable overnight (even if high) once the food and bolus effects have finished?

My glucose eventually becomes stable again in the morning. I inject what I'm used to and watch my sugars stabilize at 7.

So does this mean you drop overnight back to ~7ish? Can you tell from the timings whether this is due to correction bolus you've injected or just a trend (that would therefore be due to basal)?

My alarms are set to 4.2 - 12.0 mmol/L but I've been thinking of lowering my high alarm to be at 11.0. I don't mind injecting and I love data. I scan anywhere from 10 to 20, sometimes 25 times a day and inject on average 8 times.

There is a danger of overcontrolling and ending up with oscillatory behaviour, however it sounds like you're only running high, rather than going low then high, but do be aware of this, plus the mental burden (though the concern about running high is likely more important to you right now, and rightly so.)

 

[EllieM]

I second the suggestion that you might want to try some basal testing. I personally find it hard to calculate my carb to insulin ratio if my basal isn't correct. What basal are you using? Some people find their basal needs vary by time of day as well as their carb ratios....

 

[Gardevoir]

Thank you for the replies. I don't want to give a short response so I'll reply in detail once I'm back home in 10 hours. I appreciate the interest and willingness to help a lot

 

[Juicyj]

Not surprised it's getting you down, it get's me down too when I feel that I can't get things under control, it's mentally wearing, yes to basal testing - start there, it's the first thing to check when numbers are off as would indicate that basal needs adjusting, here's a useful link: https://www.mysugr.com/en/blog/basal-rate-testing/

I find I have to work a bit harder too when out of range, so lowish carb and more exercise until I can pinpoint the issue.

Hope you get things sorted soon.

 

[SimonP78]

That reminds me of something I meant to mention above, when you're high you become more insulin resistant, so can take more insulin to bring you down a given number of mmol/l than would be the case were your blood sugar lower.

 

[Gardevoir]

I went through my logbook and would like to correct myself. It hasn't been bad for the past 2 months, but instead for the past 3 weeks. Such rough weeks make it feel way longer, sorry about that. I also recognized that I slowly started consuming more carbs at dinner. The food itself hasn't changed much but I noticed that I kept feeling rather hungry later in the evenings as I'd be eating less carbs than I used to. I've noticed that my dinner from 1,5 months ago would be below 50g while I had 170g yesterday. I'll be aiming for <= 60g today for dinner.

You said your glucose levels become stable in the morning (by the morning, i.e. overnight, I'm assuming), which makes me slightly hesitant in hindsight re basal tweaking. If you're dropping overnight, then it's either sufficient basal or your evening bolus has managed to catch up and sort out BG levels.

So does this mean you drop overnight back to ~7ish? Can you tell from the timings whether this is due to correction bolus you've injected or just a trend (that would therefore be due to basal)?

I become stable in the morning because injecting in the morning makes it drop, not because I drop overnight. I don't drop overnight, which is the problem in this case.

Out of interest what sort of specialist do you have - a hospital outpatient consultant, GP-based specialist, something in between? I'm curious as to the approach - basically how much practice they have with T1 diabetics who are potentially coming out of their honeymoon period.

I believe you'd call my specialist an inpatient one. I'm not too sure about these terms. She works in the hospital and I go to the hospital for my appointments. She can also look into my logbook. My dietician can also look at my logbook, which I have an appointment with tomorrow. I hope that answers it.

I could quite happily double my carb to insulin ratio in the evening, so going from something like 10:1 during the day to 5:1. With that said, it's all changed recently, back to how it used to be so back to something along the lines of 10:1, like the rest of the day. I've no idea it's changed.

I'll have to look into my basal dosage as it sounds like it could be the biggest factor for me in this case but I'll also try increasing my rapid-acting dosage for dinner/evenings.

What (carbs, content, etc) do you eat for supper and at what time. I was running high overnight and this was at least partially because my evening insulin sensitivity had changed and so I was starting to head upwards once my supper-time bolus insulin wore off (and I was eating fairly late and fairly slow absorbing meals too).

I usually eat dinner around 7-8 PM. As I mentioned at the start of this response, I used to go very low on carbs when I was first diagnosed as I also had to understand that T1 and T2 look at carbs very differently, but I didn't know that at the time. I've since ~3 weeks started eating anywhere from 90 to 150g carbs (or in yesterday's case even 170g). I avoid consuming foods high in fat. I don't know how to properly inject for them and I'm a bit scared of testing it out without some guidance or knowing how others do it. I understand that everyone has their own personal way that's best for them, but I don't know where to start may I want to eat fatty foods.

Do you remain stable overnight (even if high) once the food and bolus effects have finished?

I don't really have a good answer to this as I stay up until my insulin does anything at all. I don't sleep when my sugars are climbing.

There is a danger of overcontrolling and ending up with oscillatory behaviour, however it sounds like you're only running high, rather than going low then high, but do be aware of this, plus the mental burden (though the concern about running high is likely more important to you right now, and rightly so.)

I understand and while being 6 months past my diagnosis, I still don't mind injecting even if it's 9 times in a day. Don't get me wrong, I sometimes also sigh when I'm about to grab my pen again, but it doesn't bother me all that much and I just do it almost mindlessly.

I second the suggestion that you might want to try some basal testing. I personally find it hard to calculate my carb to insulin ratio if my basal isn't correct. What basal are you using? Some people find their basal needs vary by time of day as well as their carb ratios....

Not surprised it's getting you down, it get's me down too when I feel that I can't get things under control, it's mentally wearing, yes to basal testing - start there, it's the first thing to check when numbers are off as would indicate that basal needs adjusting, here's a useful link: https://www.mysugr.com/en/blog/basal-rate-testing/

I find I have to work a bit harder too when out of range, so lowish carb and more exercise until I can pinpoint the issue.

Hope you get things sorted soon.

I use Tresiba, 12 units around 10 PM. That guide looks extremely useful and I'll bring it up at my appointment tomorrow as well.

That reminds me of something I meant to mention above, when you're high you become more insulin resistant, so can take more insulin to bring you down a given number of mmol/l than would be the case were your blood sugar lower.

I didn't know that. I kind of instinctively injected more when I'm higher to put a "halt" to the rising and to counteract it, if that makes sense.

Some people find their basal needs vary by time of day

Did you mean bolus? I only inject my basal once per day.

 

[Gardevoir]

I'd like to share my logbook from yesterday (15/10) till the time of writing this (16/10, ~3 PM). I've put notes on the side.
I wake up at around 4 AM and leave for work at ~5 AM. I always have ~45 minutes of physically demanding work involving a lot of weight in products. I always keep my bag close to me just in case I go low, which I simply expect to happen during this time. I'll either have a fanta mini or tea with 3-5 sugars in it. Both help very well, very fast. I also have dextro with me but not only does it taste bleh at times but it also doesn't feel as effective as taking sugar in liquids does.




As of writing this (3:36 PM), 12.3 has gone down to 7.4 with a straight arrow down, so I might eat 6g candy or a small glass of soda to try and keep it around this level (update, 4.6 still going straight down so I took soda ). I feel like now that it's still straight down at 7.4, I'll go into a dangerous low if I don't take sugar. This has been very conflicting lately as I stated earlier. 4 units sometimes don't do anything for me, especially in the evenings or when I'm already high (which I now have an explanation to -> high = more insulin resistant) but taking 4 units now might've been a mistake and I should've instead taken 2. I try to put a lot of thought into how much to inject or consume but it's really hard sometimes. Either way, I'd rather hear a low alarm and go back up within 3 minutes than hear a high alarm and ruin my mental for the next 12 hours. Lows (or near lows) are personally extremely easy for me to correct. My low alarm goes off at 4.2 which gives me just enough time to take something and make it jump up to 5 or 6.

Additionally, 2 weeks ago on the 4th of October, I've gone above 27.7 mmol/L and was unable to do much about it. I also feel bad as I was extremely exhausted from work, got the high alarm and fell asleep even after reading 12.2, only to wake up nearly 3 hours later. After that incident, I now have alarms set to wake me up at random times to check my glucose both as a reminder but primarily to avoid falling asleep when I shouldn't. I don't have trouble sleeping (besides when I'm stressed and want to take a nap, of course) but I'm usually very good at controlling myself and staying awake when I have to for my sugars. That day was simply an exception and I paid the price by crying my eyes out and calling my hospital's emergency line for advice. I was advised to simply inject and accept that it happened. It sucks but there's nothing I can do other than injecting, he said.




You can see how on the 5th of October, I also went up (by a lot) midnight for no apparent reason.

I hope this gives more insight on how my sugars have been dancing around. I once again highly appreciate your responses

 

[becca59]

I’ve had a quick look at everything, and I know you are in contact with your team. My take from it is that when you eat you are probably not on the correct ratio. You are then not giving it time to see what happens before bolusing again. I know it is difficult to see high numbers, however it would be useful to see where you end up 4-5 hours later to give you an idea of how much insulin that meal may require. Also injecting in advance of your meal. Am I right in thinking you bolus as you eat. That may also be an issue. Plus if I was at 10 I wouldn’t eat. It is unavoidably going to end up higher. I would inject my ratio for a correction. Wait, then eat later. Not ideal but it helps with control.

 

[Deleted member 527103]

Did you mean bolus? I only inject my basal once per day.

@EllieM meant basal needs vary at different times of the day.
I don't think anyone really explained why we take basal insulin so I will try: most of the time, our liver drips glucose into our blood. It does this for everyone whether we have diabetes or not. If we did not take basal insulin, this glucose drip will cause our BG to rise.
So, the purpose of the basal insulin is to "mop up" this glucose drip from our liver.

One injection of long acting insulin such as Tresiba a day, assumes that our liver drips glucose at the same rate 24 hours a day 7 days a week 52 weeks of the year. This is not the case. There are a number of reasons when our liver will alter the rate of glucose:
- first thing in the morning. Our livers dump glucose to give us the energy to start the day. This is called Dawn Phenomenon.
- when we are stressed. Our livers dump glucose to give us the energy for the "cave man" response to fight or flight
- when we are tired. Again, more dump from the liver
- when we are ill. Another liver dump
- when we drink alcohol. The liver considers alcohol as toxic so it focuses on getting rid of that toxin and stops dripping anything such as glucose (so our BG may get lower)
- when we "run out of glucose". Athletes experience this when they do not fuel for their exercise. They call it "bonking". It is less likely to happen but I understand it is the reason why we are more likely to hypo for a day or two after intense exercise - exercise uses more glucose and our liver supplies are depleted.
- hormones. Women often find they need more or less basal at different times during their menstrual cycle and pregnancy.

Tresiba is a great long acting insulin if your needs rarely vary as it can take 3 days for a change in dose to take effect.
Others prefer shorter acting long acting insulins like Levemir as they give us the ability to adjust our basal dose twice a day with no/little hangover from the previous dose.
Insulin pumps go a step further by using short acting insulin which they pump throughout the day and you can vary the rate every 30 minutes.

 

[SimonP78]

I've not had a good look yet but in the notification email I received you mentioned eating 170g of carbs in an evening meal. At a rate of 50g/carbs per hour, this is going to take more than 3h to be absorbed and need rather a lot of insulin. You also said you'd try a smaller quantity of food, which I think would be a good bet to help working out whether the high overnight is caused by too little insulin for your evening meal.

I'll have a look through after I eat my supper (which is considerably smaller ~75g CHO, mainly as if I eat too many carbs I would need to take loads of insulin & split the dose & end up staying up until the early hours working out whether I've taken enough/to avoid taking too much and going low).

 

[SimonP78]

I’ve had a quick look at everything, and I know you are in contact with your team. My take from it is that when you eat you are probably not on the correct ratio. You are then not giving it time to see what happens before bolusing again. I know it is difficult to see high numbers, however it would be useful to see where you end up 4-5 hours later to give you an idea of how much insulin that meal may require. Also injecting in advance of your meal. Am I right in thinking you bolus as you eat. That may also be an issue. Plus if I was at 10 I wouldn’t eat. It is unavoidably going to end up higher. I would inject my ratio for a correction. Wait, then eat later. Not ideal but it helps with control.

I just started transcribing the numbers from your screenshots into an Excel spreadsheet, but I got distracted. I agree with what @becca59 says above, I think in your case I would look to try to determine whether my boluses are correct for my meals (changes across the day too). So wait for longer to work out where your BG is going to end up to determine if you're taking enough insulin for a given quantity of carbs, and then determine how early/whether to split it based on how high you peak/whether you have an intermediate (i.e. before the food and insulin are both used up) low.

I really does help to be able to see the data presented in graphical form rather than a table of numbers (at the very least to work out whether there is much active insulin still in your system - I didn't see what you were using, but if it's Novorapid this can last from 3 to 5h). I wonder if there's a pre-existing Excel sheet or app you could use to import the data you can iirc export from Librelink/view and have it show plot carbs on board and insulin on board curves alongside the blood glucose readings, it really does help to understand what's going on.

While I don't suggest you move to using XDrip+, I find this very helpful (and it would be nice if the Libre app did something similar). See screenshot below. Perhaps someone who actually uses the LibreLink app can suggest a method that works without the need to move to a completely different app while you're busy sorting things out?

 

[Gardevoir]

Also injecting in advance of your meal. Am I right in thinking you bolus as you eat. That may also be an issue. Plus if I was at 10 I wouldn’t eat. It is unavoidably going to end up higher. I would inject my ratio for a correction. Wait, then eat later. Not ideal but it helps with control.

I do inject before my meal. I don't take a bite (unless it's a nibble of veggies). I'll try to avoid eating when I'm around 10.

I just started transcribing the numbers from your screenshots into an Excel spreadsheet, but I got distracted. I agree with what @becca59 says above, I think in your case I would look to try to determine whether my boluses are correct for my meals (changes across the day too). So wait for longer to work out where your BG is going to end up to determine if you're taking enough insulin for a given quantity of carbs, and then determine how early/whether to split it based on how high you peak/whether you have an intermediate (i.e. before the food and insulin are both used up) low.

I really does help to be able to see the data presented in graphical form rather than a table of numbers (at the very least to work out whether there is much active insulin still in your system - I didn't see what you were using, but if it's Novorapid this can last from 3 to 5h). I wonder if there's a pre-existing Excel sheet or app you could use to import the data you can iirc export from Librelink/view and have it show plot carbs on board and insulin on board curves alongside the blood glucose readings, it really does help to understand what's going on.

While I don't suggest you move to using XDrip+, I find this very helpful (and it would be nice if the Libre app did something similar). See screenshot below. Perhaps someone who actually uses the LibreLink app can suggest a method that works without the need to move to a completely different app while you're busy sorting things out?

First of all, although your graph has a lot going on, I personally love it. I'll look into that in the near future.

(at the very least to work out whether there is much active insulin still in your system - I didn't see what you were using, but if it's Novorapid this can last from 3 to 5h)

I use sanofi aspart, I believe that's Novorapid.

Perhaps someone who actually uses the LibreLink app can suggest a method that works without the need to move to a completely different app while you're busy sorting things out?

It comes with a graph which works fine for the time being before moving onto something more advanced.

 

[Gardevoir]

Following today's appointment, we concluded that my sugars are only high after dinner, meaning that my basal should be fine and I should instead focus on lowering my I:C ratio for my evening meals. Today, I've tried 1:15 instead of the usual 1:20 and would like to happily share that I've reached 80% time in range today and that I haven't gone beyond 12.1 for longer than few minutes.

Thank you all for your calming responses and input. It has helped me a lot