Seeking Advice on Healthcare, Support, and Insulin Sensitivity

[RAD86]

These are not the kind of questions I’d be making a GP appointment for, you need to make these changes for yourself. If 3u for 30g carbs sends you low then why are you taking 3u. Take 2 or 1.5 or 1.

That's what I've been doing. But it seems sporadic so I'll have to keep eye on it. Also, I've always been told, speak to a healthcare professional before adjusting ratios and doses. I'm just going by what I've been told by the professionals. I've had type since I was 9 but for most of that time was on 2 daily injections. Only been doing the DAFNE way for 7/8 years.

 

[RAD86]

Seems like it might be worth me re-looking at DAFNE and seeing how things have changed. Thank you all for the help. Much appreciated.

 

[SB2015]

Only on 2? I've been on 20 until I changed to 18 last night. That's a crazy big difference!

Hi @RAD86 and welcome to the forum. Sorry you have been having difficulties recently. If you are going too low, as you have spotted, something needs changing and you need less insulin, but it is then working out what needs changing, one thing at a time.

No need to be concerned about what doses other people need. These vary greatly for a via diet y of reasons, and we each need whatever we need. As others have said a basal test will help you to see if that dose is correct for you. I would find it hard to do a full day free of carbs, so when I did basal tests I separated the day into three, and tested one of those time periods on a specific day. This often took a few attempts of my doses were way out.

Do you have a half unit pen. When I was on pens I found that this really helped having the flexibility to make smaller adjustments for both basal and bolus doses. A change of a whole unit would have been too much.

Like @everydayupsanddowns I was surprised how often I needed to change my basal and also my carb ratios. These change with the weather/seasons/medications…. . A but of a hassle doing the checks but worth it.

With carb counting, like @helli ,I was surprised when they wanted me to do some weird calculations on DAFNE when all I needed to do was divide my number of carbs by the carbs in my ratio. There is no right way of working out your doses, just the way that you understand and can use.

Come back with questions that arise.

 

[Inka]

@RAD86 Do ask for a half unit pen - they’re so useful. Not only for boluses but also for correction doses. I think you’ll find one very helpful 🙂

 

[Tdm]

Sorry your doctor seemed a bit off...perhaps they'd had a long day?
I'd recommend you get yourself a half unit pen for your novorapid, they're really useful- i have the echo which has a display of how much you last injected and how long ago it was, great if you forget or think you made a mistake. Also more robust and take up less fridge space than disposables, just ask it to be presvribed. Ask for a spare too.
With a half unit pen you can do small correction doses if your sugars run high. I find half unit brings down about 3 m/mol
According to abbots own literature you shouldn't make treatment decisions on libre readings alone, always check with finger prick. Having said that, your libre readings seen especially out - you can get the occasional duff one replaced, but It maybe libre doesn't suit you, may want to try out dexcom one which can be prescribed as an alternative to libre....there was some discussion on hear to say it can now be calibrated, which would make it even more useful. Your disbestes clinic can help you with this.
Re adjusting own ratios- at first i too thought that you shouldn't mess with your insulin without speaking to health care professional, and even that the basal needed to be in proportion to bolus! (Which i know know is bonkers, you need what you need) but since i started to adjust my control is so much better - hope you find the same

 

[Tdm]

Only on 2? I've been on 20 until I changed to 18 last night. That's a crazy big difference!

I'm weird!

 

[rebrascora]

Firstly Tresiba is a very long acting insulin... It lasts about 40 hours, so each dose is overlapping the previous ones to provide what is considered a very uniform amount of basal insulin day and night. The advantage of this is that it doesn't matter when you take it and that should not make any difference to your levels. The problem lies in the body not always needing a uniform amount of basal insulin and so your levels dropping through the night are likely due to you needing less at those times. When using Tresiba, you need to set the dose to give you a relatively straight line overnight and then compensate with bolus insulin during the day ie. adjust ratios and/or do corrections if necessary. It is not very flexible but it is stable and that stability suits some people.
I am on a much shorter lasting basal insulin, Levemir, which lasts about 16-20 hours. and I take it twice a day, so the tail end of each dose overlaps with the build up of the next dose. It had a peak of activity and a slow tail off. You can adjust the day and night time doses independently to cover what you need or don't need and you can adjust the timing of the doses to provide that peak of activity when you need it most. It is much more flexible than Tresiba so you can adjust it daily whereas Tresiba needs 3 days before you see the full effect of any change and decide whether or not you need to change it again.
I have a very big disparity between day and night time needs (22 units in the morning but anywhere from 0-5 at night, depending upon exercise). It means I have to think about what my basal dose needs to be on a daily/nightly basis, but it allows me to fine tune it to what my body needs. I love Levemir for this flexibility, but many people like Tresiba for it's uniformity and stability. It is like a super tanker that needs several days to change course or stop, compared to a private yacht that is more manoeuvrable and you can go where you want, when you want... within reason!
If you can't get Tresiba to work well for you, you can ask to try a different basal insulin or even specify that you would like to try Levemir, but you will need to be prepared for it to be different and there will likely be some turmoil before you get the hang of it and find the right doses. Again, this is something you would discuss with your consultant or DSN at the clinic.

As regards the clinic, I wonder if they have a helpline you can ring. Whilst I have a telephone appointment with my consultant once in a blue moon, there is a helpline that I can ring and leave a message and get a call back from a DSN. I don't need to speak to a GP first, but then that is because I am on the books at the clinic, so if your GP has referred you, it might be worth ringing the hospital and asking if the diabetes clinic has a helpline and to be put through to it. They should prioritize people having problems with hypos and particularly nocturnal hypos.

Pleased to hear that you have Libre. Many of us self funded until we got it on prescription. Did you set it up so that the hospital has access to your data via LibreView? Usually this involves inputting a code for your particular hospital clinic, which then allows them to access it so that they can look at it and advise you if you have a problem.

Regarding Libre in/accuracy, yes, you are correct, your finger prick reading takes precedence over Libre or other CGM. These devices have limitation which you really need to be aware of and will not always give you a near enough reading compared to Blood Glucose. There is a comprehensive post about the limitations of Libre and other CGM in the link below. It is really important to understand these when you are using Libre. It is a brilliant bit of kit but it has its quirks and foibles and there are times when you need to double check it. I probably need about 4 or 5 finger pricks every fortnight to clarify things and/or ensure I understand how any particular sensor is performing, which then gives me confidence to make decisions from the Libre result. Hope you find this info helpful....

CGM limitations and precautions

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors. My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of...

forum.diabetes.org.uk

As regards basal testing, having a low carb day doesn't always give you an accurate picture because in the absence of carbs your body will break down protein and fats and these will inflate your levels usually starting about 2 hours after a meal but will continue to release slowly and steadily for several hours thereafter and with Tresiba the key thing is to set it up for a stable level overnight, so basal testing through the day isn't really any great use. Once you have the dose sorted to give you a steady baseline overnight, then you adjust ratios and corrections to balance things during the day.

Sorry to write so much but there were quite a few things that your post highlighted that I wanted to comment on and explain and no doubt whilst I have been typing others will have covered some/all of them anyway..... I am busy cooking tea so I keep leaving the computer and coming back to it hence it has taken me a long time to compose. 🙄

 

[Lucyr]

That's what I've been doing. But it seems sporadic so I'll have to keep eye on it. Also, I've always been told, speak to a healthcare professional before adjusting ratios and doses. I'm just going by what I've been told by the professionals. I've had type since I was 9 but for most of that time was on 2 daily injections. Only been doing the DAFNE way for 7/8 years.

Who advised you that you need to speak to a professional before changing doses? Thats nonsense, I’d ignore that completely. Doses change on at least a daily/weekly basis you can’t wait to speak to a professional before changing your doses.

 

[RAD86]

No need to be concerned about what doses other people need.

I know, but it's just such a difference.

I would find it hard to do a full day free of carbs,

That's a good point. I'm starving by 2pm! I've had a carb free morning this morning with 18 units of Tresiba for the last 2 nights. I'm sitting stable this morning after only scrambled eggs and a coffee. I'll go for a carb free dinner and see how I feel at tea time where I will probably have some carbs and do a careful dose of NovoRapid.

Do you have a half unit pen.

I don't but I plan on asking about this when I next go. I have asked for one in the past, but they kept saying "you don't need one of those". I always thought it was better to always have the option than not.

Do ask for a half unit pen - they’re so useful.

As above ^

I'd recommend you get yourself a half unit pen for your novorapid, they're really useful- i have the echo which has a display of how much you last injected and how long ago it was, great if you forget or think you made a mistake. Also more robust and take up less fridge space than disposables, just ask it to be presvribed. Ask for a spare too.

I've not heard of Echo no, but this sounds really good and helpful! I'll definitely be asking about this when I get my appointment. Thank you.

According to abbots own literature you shouldn't make treatment decisions on libre readings alone, always check with finger prick.

I've gone back to fingerpricks now and use the CGM only to alert me to lows/highs earlier so I can then finger prick and and go by how I feel to act if needed. I think for me, it may be a small case of the CGM providing me too much information and me fixating on it more than I need to. Particularly the down arrow that makes me feel a little anxious when I see it saying down and I'm like 5.5. I then just think "avoid the low!"

there was some discussion on hear to say it can now be calibrated, which would make it even more useful.

I wasn't aware of this. I'll look into it.

Levemir

I was on this before they moved me over to Tresiba, as I was having (at least I/we thought) issues with it...

and I take it twice a day, so the tail end of each dose overlaps with the build up of the next dose. It had a peak of activity and a slow tail off. You can adjust the day and night time doses independently to cover what you need or don't need and you can adjust the timing of the doses to provide that peak of activity when you need it most. It is much more flexible than Tresiba so you can adjust it daily whereas Tresiba needs 3 days before you see the full effect of any change and decide whether or not you need to change it again.

...but now I know this, I'll discuss this with them when I get in. I wasn't aware also that Tresiba needs 3 days to take effect of changes. So I've spent the last 2 nights doing 18 from 20. I'm probably not going to see the effects of that yet, at least until tomorrow? I guess it makes no difference what time I'm doing this at that to help them coming down in ther night.

On the point of going down in the night, they don't drop drastically, and the CGM tends to alarm me around the time of waking up anyway most of the time. It's more that, at night, I'm aware it does this, so I tend to run bloods a little higher to compensate for this at night. See screenshots below of the last 2 nights to mornings and how it drops. I feel like I then just get into a wrestling match with it for the rest of the day from the morning - unless, I have a completely carb free breakfast.

As regards the clinic, I wonder if they have a helpline you can ring.

I'm at an appointment with the diabetic nurse in my practice today so I'm going to air all my problems, issues and concerns, and ask about this.

Did you set it up so that the hospital has access to your data via LibreView? Usually this involves inputting a code for your particular hospital clinic, which then allows them to access it so that they can look at it and advise you if you have a problem.

I wasn't aware this was possible. Again, I will ask about this today and which clinic code I need.

Sorry to write so much but there were quite a few things that your post highlighted that I wanted to comment on and explain and no doubt whilst I have been typing others will have covered some/all of them anyway..... I am busy cooking tea so I keep leaving the computer and coming back to it hence it has taken me a long time to compose. 🙄

Better that than what I've just done - spent half an hour writing a response, to accidentally hit the back button on my mouse and lose it all! I've had to type all this back out again 😱

I appreciate the long message also it allows me to read all at once as I find it hard to get time with work. So thank you for being so detailed.

Who advised you that you need to speak to a professional before changing doses?

The professionals themselves. It's referring to my basal, not bolus. I know bolus depends on what you're eating at the time. But I was told to speak with them before adjusting my Tresiba. I think the reason why makes more sense after the info from @rebrascora about the Tresiba length of activity. I'll question this more when I go in today and when I get the clinic appointment.

Thank you all so much for the comments. I feel more armed with knowledge and questions that could set me down a better path with this now.

I have the appointment at 1pm today, so I'll try to find time to check back in later and let you know how things go.

Have a good day all.

 

[rebrascora]

Better that than what I've just done - spent half an hour writing a response, to accidentally hit the back button on my mouse and lose it all! I've had to type all this back out again 😱

Don't you hate it when that happens!! 😡

Those graphs suggest to me that your basal is too high as those are significant drops overnight and having to push your levels up to mid teens to prevent a hypo is not good, so my guess is that your Tresiba dose is still too high overnight, which is really when you need it to hold you steady. If I go from 8 to 4 then I got my evening Levemir dose wrong. Ideally, it wants to be as close to horizontal as possible, but it is not unusual to see a rise towards dawn of after you get out of bed which is due to your liver releasing glucose to give you energy for the day ahead and is referred to as Dawn Phenomenon or Foot on the Floor Syndrome. I inject 1.5-2 units of bolus insulin as soon as I wake up and before I get out of bed, to deal with that as it can raise my levels by up to 6mmols if I don't hit it with insulin straight away.
I am going to tag @Proud to be erratic as Roland is more familiar with using Tresiba than I am, to make sure I am not giving you duff advice on this, as I have learned a lot of what I know about Tresiba from him. He is a fan of the stability of Tresiba so he will also hopefully give you a rosier perspective on it.

It would really help your clinic if you can start notating your Libre app with carbs and insulin doses and perhaps exercise too for a few weeks before your appointment (when you get one 🙄), so that they have a better idea of what is going on. It doesn't have to be longer term, but being able to see when you injected and when you ate and if exercise was involved the previous day etc, gives much more meaning to the graphs Libre generates. If your hospital clinic does have a helpline, then you can ring that to ask for the LibreView code to share your data. I would be very surprised if the DN at the GP practice knows it or anything much else about Libre. My nurse is interested but she doesn't know much and our annual appointment is often when she learns more about it from me, rather than me getting advice from her..... much as she is lovely! She really has just a good basic level of knowledge to help her manage the Type 2s at the practice, but managing Type 1s is above her level of training. Usually she also manages the patients with other chronic/long term conditions like asthma, so she is simply not specialist enough for our needs.

 

[SB2015]

I look forward to hearing how your appointment has gone, and I am glad that your enquiries on here have armed you with some useful questions.

 

[RAD86]

Hi again all.

I had my appointment yesterday but got too busy with work to come back to this.

I spoke to a diabetic nurse at the practice, who was also diabetic and she helped a lot and gave a lot of advice. She explained that the referral had been made on Monday this week. By the time I'd got home, I had an email from the clinic with my appointment, which is on October 31st at 1:45pm. She explained that I've been put back with the hospital and when at the clinic I should be assigned to a diabetes specialist, who will on hand to advise whenever I need - via appointment, phone or email even, which sounds really handy to me given my busy lifestyle.

I questioned a few of the things above with her and she said it's all best left until I get to the clinic to ask for things like new tech and deeper advice and she's not a specialist. She did check my feet, weight and took my bloods so they're done ready for my appointment at the clinic.

I explained to here that I've dropped my basal to 18 from 20, and she said that's probably a good idea, at leat until I can get to the clinic for more information and help.

I was also made aware of an app called SNAQ. I'm not sure if any of you know about this, but I downloaded last night and I'm testing the free version. It allows you to take pictures of your food and log them (good for logging food/diet), and tell you the carbs in the portion using AI. It also links into your Libre or Dexcom sensor, so it can show you how your bloods react to the different food. It store this information so you can make more informed decision about dosages from the patterns of your food. It seems really handy, but I'm just using the free version to test it for now. Let me know if anyone else has used it, and your experience with it.

It would really help your clinic if you can start notating your Libre app with carbs and insulin doses and perhaps exercise too for a few weeks before your appointment (when you get one 🙄), so that they have a better idea of what is going on.

Hopefully this SNAQ app will help me with that because I am admittedly crap at logging as I always have 100 things to do.

I'll know more at the end of this month it seems, but today, being the 3rd day since changing my bolus to 18, seems to be better particularly in the morning. A much more straight line, down on only to 5.5mmol/L, which I'm happy with. Although, it's only one day, so I'm going to keep my eye on it. One thing I do notice, is that I spike when I eat, and it takes a while for the insulin to fully work it seems. This probably isn't helping with my lows either I wouldn't imagine - maybe the insulin is still working when I do my next dose?. This morning I ate porridge completely plain with semi-skimmed milk at 10:18am (I had a late night), then a coffee with a touch of semi-skimmed milk at 10:40am. I confidently did 3 units of NovoRapid for this and I've shot up quite rapidly to 14mmol/L before the insulin has started to work, slowly, bringing me down to a current reading of 10.6mmol/L on the CGM (9.1mmol/L on the BGM).



Should I be spiking out of target range almost every time I eat? Again, I feel like this may be an example of where I'm fixating too much on the graph and not so much on the reading at the time - like you would with a BGM where you wouldn't see the spike ever.

Anyway, sorry for the long one. Again, thanks a lot for the advice everyone. I've not been here for long, and already feel better about it all.

 

[rebrascora]

Great to hear you had such a positive appointment, no doubt helped by the nurse being a diabetic herself. Maybe we should stimulate it as a requirement for the job. 😉 And fab that you have an appointment so soon..... might not seem all that soon to you but within the month is pretty impressive as far as I am concerned.

I'll know more at the end of this month it seems, but today, being the 3rd day since changing my bolus to 18, seems to be better particularly in the morning. A much more straight line, down on only to 5.5mmol/L, which I'm happy with. Although, it's only one day, so I'm going to keep my eye on it. One thing I do notice, is that I spike when I eat, and it takes a while for the insulin to fully work it seems. This probably isn't helping with my lows either I wouldn't imagine - maybe the insulin is still working when I do my next dose?. This morning I ate porridge completely plain with semi-skimmed milk at 10:18am (I had a late night), then a coffee with a touch of semi-skimmed milk at 10:40am. I confidently did 3 units of NovoRapid for this and I've shot up quite rapidly to 14mmol/L before the insulin has started to work, slowly, bringing me down to a current reading of 10.6mmol/L on the CGM (9.1mmol/L on the BGM).

Great to see that your overnight levels are looking a lot better, so well done there.

As regards spiking after meals, it usually comes down to how long you prebolus your insulin before eating and breakfast is usually the time when it needs a big head start. How far in advance of eating do you currently inject your NovoRapid?
If it helps to give you some idea of extremes, I need to inject my breakfast insulin (plus an additional 1.5-2units to cover DP/FOTF) before I get out of bed and then wait about 45 mins before I eat breakfast in order for the insulin to get going before the carbs start to release and this is with Fiasp which is faster than NR. It was 75 mins prebolus time for me with NR on a morning which was just unworkable, hence the change to Fiasp. This may be far too long for you and you would likely hypo before or during eating if you waited that long but if you currently only prebolus 15 mins before breakfast, try the same breakfast tomorrow but with 20 mins and gradually increase the time until the spike flattens to something more acceptable. Personally I feel rough if I go into the teens and it isn't ideal for your body to do so every day. If you can keep it below 10 most of the time, that is great aas long as you are not dropping low afterwards but if your insulin dose has brought you back into range by lunchtime, then the dose was right but the timing was wrong and it will just be a question of experimenting carefully to find the right timing for you. Later in the day, most of us need less prebolus time. Usually about 15-20mins works well, but at breakfast time most of us need longer. So you were right in saying that the food is hitting your blood before the insulin, so you need to give the insulin a bigger head start.

 

[SB2015]

What a positive appointment and so good that you have a specialist appointment booked in.
I am another person who needs to pre-bolus for meals which gives my insulin a chance to get going and meet the peak of glucose head on. The timing for me varies during the days and it is a case of trial and improvement to find what works for us. Then there are times when I have no idea when the food will arrive so I bolus on arrival and accept a spike afterwards .
These spikes can go way out of range depending on lots of factors but I just do the best that I can.

I know it is lots to think about but just go step by step.

 

[Tdm]

What a positive appointment and so good that you have a specialist appointment booked in.
I am another person who needs to pre-bolus for meals which gives my insulin a chance to get going and meet the peak of glucose head on. The timing for me varies during the days and it is a case of trial and improvement to find what works for us. Then there are times when I have no idea when the food will arrive so I bolus on arrival and accept a spike afterwards .
These spikes can go way out of range depending on lots of factors but I just do the best that I can.

I know it is lots to think about but just go step by step.

That overnight curve is looking good, but still has a bit of a drift down...may be work checking over 3 - 4 nights and then reduce basal a wee bit more until its as flat as you can get? But its already looking so much better than your previous graph!

 

[Tdm]

That overnight curve is looking good, but still has a bit of a drift down...may be work checking over 3 - 4 nights and then reduce basal a wee bit more until its as flat as you can get? But its already looking so much better than your previous graph!

Oops, attached my graph...i actally decided not to put it on, but forgot to delete it, but may be useful to see what is possible

 

[Proud to be erratic]

Hello Ryan @RAD86,

I am T3c having surrendered my pancreas to pancreatic cancer in Feb '20. So in relation to your circumstance I am a novice at this D malarkey! But I am pretty keen on Tresiba; it works for me. I started on Levermir and used this for 12 months without any CGM, with little explanation about how to get the best from Levermir and generally had really poor BG management for those first 12 months. Since the arrival of Libre 2 and now self-funding Dexcom G7, CGM has provided me with visibility to let me see how bad things were. Tresiba has been a self-teaching process, gleaning whatever I could from wherever I could find it - and I find I'm regularly trying to point out to other Tresiba users that it is different - very different to all the other shorter profile basals.

Because of its published 40 hr profile today's Tresiba dose is topping up yesterday's dose and that allows the user to be pretty varied in the timing of taking Tresiba. Nominally am or pm; and +/- several hours on that am / pm time. The accumulation of Tresiba smooths out the potential variation that might otherwise accrue from changed times with a basal of shorter duration.

This provides a stability (the ocean-going super tanker course change effect) which can be deemed either helpful or limiting! It depends on how you want to view this stability.

No basal is required to be constant every hour of a 24 hour day. Broadly our daylight needs are different to our night time needs. With a twice daily basal such as Levermir you can adjust doses to be quite different for day or night. You can also adjust Levermir basal doses according to what you are doing on any one day. Not so with Tresiba. You adjust Tresiba to achieve a steady (level) response for a limited period - usually for most of us for during nighttime. Then use your bolus along with exercise and eating to manage your day. Without trying to adjust Tresiba or even expecting Tresiba to help with that daytime management. Whatever Tresiba is bringing to the daytime party is what it is and whatever else is needed can only come from bolus and / or exercise and food.

This concept seems to confuse people who are accustomed to shorter profile basals and it also seems to regularly escape the knowledge of diabetes specialists - even to the point that written pre-op instructions provided by Endocrinology teams reveal that they do not understand that Tresiba is different! Sad but true.

All that said my Tresiba doses are not set in concrete. I notice my night time CGM graphs change between summer and winter and I have so far had to adjust each autumn and spring. I recently had a dreadful cough and cold for over 3 weeks and I increased my Tresiba from 9.5 units to (eventually) 12 units - then gradually back. I had an enforced spell of almost 4 weeks in hospital in 2022 and during that period I was making small bolus adjustments at least 4 times daily, had excellent Time in Range and reduced my Tresiba to 8 units because of that taut bolus regulation (little else to do!!). Being woken 2 or 3 times during each night for hospital protocol checks added to my bolus mini-correction opportunities.

Because my CGM is now Dexcom G7, Dexcom does not allow a user to take screenshots (claimed to meet their security protocols). So I can't send you examples of my graphs, showing good or less good times and reflecting cause and effect. But I only basal test during my natural fasting times, ie from evening meal plus NovoRapid 4hrs (eg 11pm) until breakfast bolus. There is no possible value in basal testing at any other time of the day when using Tresiba.

I hope this helps you get further insight into Tresiba. I do not claim it is necessarily ideal for everyone. I happen to like the predictability of a stable basal for nights and then only juggling with bolus, exercise or carbs for all non-fasting periods. I appreciate NOT having to assess whether to adjust bolus or shorter profile basal when things are adrift.

 

[everydayupsanddowns]

Glad you had such a positive appointment @RAD86

That app sounds handy! Hope you are able to work out some decent pre-bolus timings for meals now that your basal is set a little better for you and isn’t constantly pulling your BGs down in the background.

And yes, it’s worth remembering that rapid analogues generally work for 4-5 hours, so before tweaking ratios it’s often better to try to optimise dose timing, and see whether BG has roughly returned to premeal levels by the 4-5 hour mark. 🙂