Should I ask for an Insulin change?

[MollyBolt]

One year on since I was diagnosed as a T1. Ooft. Anyway I have an appointment with the diabetes consultant next Friday and am musing what to say / ask.

I use Levemir and Novorapid and am somewhat thinking of asking to change. The prospect of levemir being phased out is depressing me a bit because it works well - so I wondered about just getting it over with? Novorapid is ok but, as we all know, not that rapid. Some of you seem to have short acting options that are much speedier and I wonder why I am not on one of them. I find the drain of having to remember to inject 30 mins before hand quite wearisome. Views?

They said I could have a pump if I really wanted but people have such mixed views I am unsure. Someone I know of (husband of a work colleague) seems to have had the worst highs and lows ever. I also quite like feeling I have control - I am about 80% TIR, 50% TITR. Views? Obviously this would make the pen question irrelevant. Though also to note the time out of range is pretty much always when I don’t wait long enough to eat (hence Novorapid sorrows).

Finally, despite my hopes I find it hard to lose weight and mused on asking about that. I assume they will just say eat less…

 

[Inka]

I inject my NR right before my evening meal @MollyBolt Ideally I’d probably do it a few minutes earlier but it’s so hectic, I usually forget. You don’t have to be super strict, and if you need to eat earlier then do. I’d never use a superfast insulin.

As for Levemir, I wouldn’t ask about it until you have a preference of which other basal you’d like. Best to choose what would suit you.

Edited to add - you have control with a pump. You don’t have to loop with pumps. You can control them yourself.

 

[MollyBolt]

Ooo interesting! Why would you never use a super fast insulin? Also any views on what I should be researching to decide on another basal?

 

[rebrascora]

Hi. I have a faster insulin Fiasp and I found the change from Novo(not so)Rapid challenging and frustrating. In fact it took me 2 3 month trials 6 months apart before I figured it out and whilst I really like Fiasp now, I have to be more heavy handed with it and I usually still need to prebolus and sometimes by as much as 45mins in the morning, depending upon what my waking level is. If I am above 10 I could be waiting longer than 45 mins, but if I am in the 4s I can sometimes get away with injecting and eating. It is very individual but Fiasp definitely has it's quirks for some of us and if my levels get above 10 it is like injecting water and I have to stack corrections to get it down. This is just me but other people have found similar quirks and gone back to NR and others seem to have not had any problems at all. I have not seen people have so many issues with Lyumjev but that doesn't mean to say it can't be quirky for any particular individual either.
I certainly would not consider making changes to both my insulins at the same time as I simply could not have coped with that.

It is really sad about Levemir and I am leaving it to the last minute (certainly next year) before making the change but I have already discussed the options with my consultant and for me we are agreed that I am looking for another split dose insulin which provides me with the flexibility I need and that is likely Humulin I. However I am not in any rush to change and in fact I am developing a very small stock pile to tide me over another couple of months after supplies of Levemir run out. I can order a box of 5 cartridges every month but usually just need them every other month, so occasionally I will order some when I don't need it just to give me a bit more of a buffer for when it runs out always keeping an eye on expiry dates as I don't want to waste any.

So, it maybe worth experimenting with a faster insulin now whilst Levemir is still available and seeing how you get on and talking to your consultant about a replacement for Levemir but asking to remain on it for now whilst you trial a faster bolus insulin.

 

[Inka]

Ooo interesting! Why would you never use a super fast insulin? Also any views on what I should be researching to decide on another basal?

For a few reasons: they’re either too fast, unpredictable, or rubbish when your blood sugar is higher. Although people have their individual workarounds for this, eg bolusing at different times depending on blood sugar, stacking corrections, etc, that’s far too much faff for me and it would annoy me. Also, I wouldn’t want something superfast in me, and always remember the initial,concerns when analogues were introduced (the first analogue was stopped due to an increased cancer risk, related to insulin being a growth factor). I think you can over-engineer things, and superfast insulins are an example of that to me.

For basal - look at the other basals available and see what would suit you by reading their profile of actions and injection frequency and timing.

 

[Bloden]

Wow! @Inka - I’m amazed you don’t have to pre-bolus with NR. If I don’t pre-bolus, I go as high as a kite and struggle to get back in range for hours. We’re all different, tho.

I was on Apidra before switching to a pump and NR @MollyBolt. I really liked Apidra because it was properly rapid which meant I didn’t have to pre-bolus and could rely on correction doses actually working. I was told I couldn’t use it in my pump tho. My basal was Tresiba which I also really liked, but it’s very different from Levemir (which I’ve never used).

Diabetes is so personal - whenever I’ve made any changes to my treatment, I’ve read other people’s advice / opinions as well as doing lots of research online. Good luck with your appointment.

What’s TITR btw?

 

[rebrascora]

I don't find Fiasp "superfast" and in fact I was a bit disappointed that it wasn't faster, but it will all depend on how fast or slow you find NR and that is different for each individual. I was having to prebolus 75 mins in advance of breakfast to prevent spikes in the morning and occasionally I would leave the house and simply forget that I hadn't had my breakfast because it was so long since I injected or I would pop out to the village shop for some milk or whatever in that time and end up hypo.
If your TIR is currently 80% then your team may just say that NR is working fine for you. That said, my TIR was also really good but my consultant was very open to me trying it because of my long morning wait for breakfast.

 

[John Gray]

Like @rebrascora I am also on Levemir and Fiasp, but unlike her I have experienced no problem at all in transitioning from Novorapid to Fiasp, which I did gradually to use up my previous stocks of Novorapid. [Point to note for the doctor: Novorapid and Fiasp cost the same to the NHS!]

I've been on Levemir ever since I went onto insulin from metformin only (20 years ago, since you ask!) but now I'm also on Empagliflozin and Mounjaro, I'm questioning whether I still need to take a long-acting insulin at all. To be discussed further closer to the demise of Levemir...

 

[helli]

Like @rebrascora I use Fiasp.
Unlike her, it did not take me as long to work out the quirks and how to adapt for them. I think they are understood much better now so the adjustment should not be that great.
That is, if it works for you. We are all different and react differently to different insulins.
I used NovoRapid before Fiasp for about 15 years. Most of that time, I was unaware of its sluggishness because I had no CGM. Like Inka, I would inject just before I started eating and, as long as I was back in range before the next meal or sleep, I didn't worry. Nowadays, this sounds a rather lasse faire attitude. However, if you consider I was diagnosed over 20 years ago and have no complications, it doesn't feel such a terrible approach.
Like many, I have become slightly obsessed with TIR with my CGM. Yes, there are good things about this but, given the 15 years without, I sometimes wonder if the value outweighs the cost to quality of life.

I now have a pump but not closed loop. The closed loop is not an option for me because I manage too well without. But, after some investigation, I decided it was not worth pushing. I work with technology and love a new gadget to play with but I do not believe closed loop would work with my lifestyle.
The standalone pump, on the other hand, has been a huge benefit compared with injections. It has given me far more freedom. When I was last forced to go back to injections, it felt like I was using a sledgehammer. I love the variable basal, the small bolus (I can bolus 0.05 units) and the ability to spread a bonus over a few hours.

As a pump has been offered to you, I think it is worth finding out more. Talk to your diabetes team about what they think would be the benefits for you rather than focusing on the experience of your colleague's husband. You don't know his circumstances and how he uses his pump.

 

[MollyBolt]

Thanks all for this. One takeaway is that maybe I am under-estimating how good NR is - basically if I inject 30 mins before it’s fine, as long as I get the right amount, but at least it’s a consistent number of units. But I will ask about Fiasp and see what the doctor thinks.

It sounds like I’ve being too simplistic in thinking: long acting once a day sounds like one fewer injection, that would be nice. Is anyone able to unpack the disbenefits of it for me? Google suggests that my BG control may end up less good - is that reflective of experience here?

Could you say @helli a bit more about the freedom that comes with a standalone pump? I worry that I am not envisaging the pros.

TITR = time in tight range (3.9 - 7.8). I use the Gluroo app sometimes which tells you this and though I don’t fixate on it, I do aspire to have a slightly higher % in TITR. That said, some healthcare professionals say that TITR requires a control that impacts too much on quality of life (reflecting @helli’s point too about CGMs more generally - though also I think I am just that sort of person).

 

[Inka]

3.9 to 7.8 are the pregnancy targets @MollyBolt and they’re exhausting enough during pregnancy without unnecessarily inflicting them on yourself! I’d just go by TIR.

Re basal once or twice a day, it depends on your Levemir split. If you take less at night, for example, a once daily ‘flat’ basal probably wouldn’t work as well.

A pump is just another insulin delivery system. You don’t have to loop and you can control things just like you do on injections. The benefits are getting much, much closer to the exact basal you need every hour; being able to do more precise boluses and corrections, eg 0.25 units; and being able to easily increase or decrease basal as needed, eg for exercise and illness. A pump can sort Dawn Phenomenon - see my first point, as you get the basal you need at that time, ie more.

 

[helli]

Could you say @helli a bit more about the freedom that comes with a standalone pump? I worry that I am not envisaging the pros.

Mostly it is with the ability to adjust my basal on the fly.
For example, if I am heading to my Spin class, I reduce or suspend my basal so I don't have to eat to avoid a hypo. Or, if I am about to have a stressful meeting or presentation work, I can increase my basal to stop the BG rise.
But, if I don't time the basal increase right, I can quickly give myself a bonus correction without the palaver of getting my pen out, putting a needle on it, injecting, getting rid of the needle, putting my pen away. In my case, I just bolus through the app on my phone. I don't think the phone app is common but even if you have to unhook your tubed pump from your belt to bolus, it is easier.
The other thing that is great is the extended bonus. No longer do I need the dual bolus for pizza. I just say "give me this much insulin over that much time".

The possible downside is how much easier it is to eat!

 

[rebrascora]

The thing to consider with your basal insulin is how much you currently adjust your Levemir to cope with changing basal needs. I need to adjust my evening dose a lot sometimes on an almost nightly basis to account for whatever exercise I have done or haven't done. My split is 22u in the morning and anywhere from 0-6 units on an evening. If I don't adjust it I get nocturnal hypos or end up mid teens depending upon what I have been doing activity wise over the last few days.

Another thing to consider is, as a woman, do your monthly hormones mean you need to adjust your Levemir to account for that. If so then something long acting like Tresiba may not be suitable because it is very stable but quite inflexible and takes several days for any changes to be fully effected, plus it gives more or less flat line coverage which is fine if you need more or less the same level of basal insulin day and night but for people like me who need much less at night that would cause a major problem.

 

[SB2015]

Good morning @MollyBolt . Lots to think about and decisions to make, and good that you are doing your research.

I tried FIASp for about 6 months. It did seem to reduce the need for a pre-bolus for me but I reacted to something in it and got such skanky cannula sites that the positives were soon lost and I returned to Novorapid. I accept that I can’t pre-bolus all the time and do it where I can (at home and in certain local restaurants who reliably deliver my meal 25 min after I order it) but accept that I am going to spike after a meal with no pre-bolus.

Pump
I switched to a pump about 12 years ago. It was a game changer for me. I had already got Levemir working well for me with a split dose, but I was still getting night hypos. I also found that having to plan for exercise before I injected my basal frustrating. I could take account of exercise just after a meal but found it frustrating not having the flexibility to do things in a whim. Pumping gave me the opportunity to set my basal rate hour by hour through the 24h and to turn it down an hour before I wanted to do some exercise. Much better. With the pump I could choose how to deliver my boluses (all in one, split, a mixture of both and it would get on and do it for me (when I tried to split I would forget to do the second half). I could turn the basal down at any moment such as out for a long walk switch it down to 50%. When I,l I could switch my basal up and then get some sleep.
It would be interesting to know what negatives made you think that you did not want a pump.

Sensors
My switch to a pump was pre sensors. Like you I like to be in control and I found that the pump increased my ability to manage my diabetes. When sensors became available that showed me my post meal rises and I started to make changes to my diet and timing of bolus. I could head off hypos with the alarms …. The amount of data available led to my micromanaging my diabetes and burnout for me. That was not due to pumping, but due to my determination to ‘get things better’ and my use of the data. I had seen how pumping had improved my HbA1c and then TIR and thought I could get it even better, and it took me time to acknowledge that perfection was not part of the plan.

Looping
This for me has had the biggest impact and if you were given the opportunity to do this it is well worth considering. It was a big step for me going from micromanaging to trusting the loop, and it took me quite a while to adapt. I kept interfering and mucking up the algorithm. Now I have long periods where I am able to simply get on with life and ignore my diabetes except at meals. The basal rate is adjusted every 5 minutes in the background. This has worked very well for me and taken away a lot of the diabetes thinking that I used to do. It still goes wrong at times and you learn to deal with the issues that arise. A bit like life.

Managing our diabetes is so individual, but you are tapping into the hive of experience and from it you can draw your own conclusions. I look forward to hearing what you decide to do

 

[SB2015]

That said, some healthcare professionals say that TITR requires a control that impacts too much on quality of life

I would definitely agree with this statement. I tried and tried to get the tight control, and did myself some mental damage at the time in seeking the impossible. My consultant took a long time to get me to widen my target range to 4.0 -10. I now stick with Partha Karl’s 70% is good.

 

[rebrascora]

I had never even heard of TITR and I also don't think it is a good idea unless you are pregnant which is maybe why it came about but then perhaps got adopted by people who were not pregnant. It is very easy for diabetes management to become competitive even if it is only with yourself and you do have to guard against it. I would not consider TITR and have gradually learned that good enough is good enough. Nice to get a really good TIR occasionally but anything over 70% is a bonus.

For me my diabetes management is just a long running computer game now since I got Libre and I just nudge my levels up a bit with a few carbs or push it down a bit with a unit or two of insulin or some exercise and that makes it really easy for me because I then don't really need to carb count or have to weigh or measure stuff provided I stick to my low carb approach.

 

[SB2015]

Another thing to consider is, as a woman, do your monthly hormones mean you need to adjust your Levemir to account for that

… and with a pump you can set up a basal profile for this time of the month, as well as one for work days, weekends, …

 

[Lucyr]

I use Levemir and Novorapid and am somewhat thinking of asking to change. The prospect of levemir being phased out is depressing me a bit because it works well - so I wondered about just getting it over with?

The advice is not to switch and to stay on levemir at present

What you need to know about insulin supply issues in the UK

NovoRapid PumpCart The Department of Health and Social Care (DHSC) said on 4 June 2025 that supplies of the NovoRapid PumpCart 1.6ml cartridges, made by Novo Nordisk, will be in limited supply throughout this year. The NovoRapid (insulin aspart) PumpCart cartridges are used in the mylife...

www.diabetes.org.uk

 

[rebrascora]

… and with a pump you can set up a basal profile for this time of the month, as well as one for work days, weekends, …

Yes indeed and if the offer of a pump is still on the table then that would obviously negate finding a replacement for Levemir.
The only concern is that some areas have halted/suspended new pump starts in order to convert existing pump users who want it to HCL, so the offer of a pump might be off the table for now whilst staff are busy training people on HCL.

It is definitely worth discussing a pump with your consultant and seeing what the current situation in your area is. Some places would not offer a pump to anyone regularly achieving 80% TIR, so whilst it might have been mentioned before, you may not now be eligible. No harm in seeing how the land lies, even if you are not sure if you want one or not.

 

[rebrascora]

The advice is not to switch and to stay on levemir at present

What you need to know about insulin supply issues in the UK

NovoRapid PumpCart The Department of Health and Social Care (DHSC) said on 4 June 2025 that supplies of the NovoRapid PumpCart 1.6ml cartridges, made by Novo Nordisk, will be in limited supply throughout this year. The NovoRapid (insulin aspart) PumpCart cartridges are used in the mylife...

www.diabetes.org.uk

I think that the problem lies in the fact that some of us only get an appointment once in a blue moon and now we are down to near enough a year to stocks running out, I think you need to at least have a discussion and a plan in place about what options you have and what might be most appropriate. They will not suddenly be able to give everyone appointments next summer to swap them over.