My team won't consider an insulin change

[JoshPowJenks]

Hey,

So, a bit of background - my diabetes team....aren't great. I don't like even calling them my team because I barely ever hear from them, even when I reach out for support - for example, I've had to leave them 5 voicemails and 3 emails this month until they eventually responded today. I'm loathed to talk about them in this way because I know how thin the NHS is stretched, but I have to.

Anyway, over the last few months I've started a low carb diet which has drastically improved my blood glucose levels. However, I'm not quite where I want to be - I'm still regularly around 10-12mmol, and long story short I'm interested in switching from Levemir to Tresiba for my basal, and incorporating R insulin into my regimen. The Tresiba is because I don't feel like I'm getting a full 24 hour coverage from my Levemir, even when I split it, which means I spike heavily in the morning, and the R insulin because I very slowly rise on a fairly high protein diet, and R insulin seems to match the peak of this perfectly.

Anyway, the nurse I just spoke to point blank refused to even entertain the idea of switching to these insulins. I'm not surprised she didn't go for the R insulin suggestion - my team don't seem to be familiar with R insulin and think it's a basal when I try to describe it to them - but I'm really surprised she was so against Tresiba as I thought it was quite a common basal. She kept saying I can't split it so I won't get full 24 hour coverage even though the idea of Tresiba is that it covers up to 36 hours.

Does anybody have any similar experiences? If so, how did you tackle it? I'm not sure what to do now, because I came off the call with no real solution or action.

 

[Rokaab]

Maybe they wont do anything like that without a consultants approval, I know when I last got mine changed I didn't even bother going through the nurses at the hospital clinic about it (they sound like yours, you have to ring fifteen times and then rarely get a useful answer), I spoke to the consultant, who listened to my reasoning and accepted it - the libre graphs helped prove the point.

 

[ert]

Hey,

So, a bit of background - my diabetes team....aren't great. I don't like even calling them my team because I barely ever hear from them, even when I reach out for support - for example, I've had to leave them 5 voicemails and 3 emails this month until they eventually responded today. I'm loathed to talk about them in this way because I know how thin the NHS is stretched, but I have to.

Anyway, over the last few months I've started a low carb diet which has drastically improved my blood glucose levels. However, I'm not quite where I want to be - I'm still regularly around 10-12mmol, and long story short I'm interested in switching from Levemir to Tresiba for my basal, and incorporating R insulin into my regimen. The Tresiba is because I don't feel like I'm getting a full 24 hour coverage from my Levemir, even when I split it, which means I spike heavily in the morning, and the R insulin because I very slowly rise on a fairly high protein diet, and R insulin seems to match the peak of this perfectly.

Anyway, the nurse I just spoke to point blank refused to even entertain the idea of switching to these insulins. I'm not surprised she didn't go for the R insulin suggestion - my team don't seem to be familiar with R insulin and think it's a basal when I try to describe it to them - but I'm really surprised she was so against Tresiba as I thought it was quite a common basal. She kept saying I can't split it so I won't get full 24 hour coverage even though the idea of Tresiba is that it covers up to 36 hours.

Does anybody have any similar experiences? If so, how did you tackle it? I'm not sure what to do now, because I came off the call with no real solution or action.

I use a split-dose Levemir and get a brilliant cover. I'm also on an LCHF diet (20 grams of CHO a day or less.) Have you tested your basal by meal skipping? Also, I change my basal dosing based on how much I run. My BS's sit mostly between 4 - 5 mmo/l. Do you use a Libre or Dexcom FGM? I don't think any insulin is a miracle fix - it's all about following your numbers.

 

[CrazycatYork]

Hiya, sorry to hear you're having a tricky time with your hospital team, sounds like you're not being listened to, while your diet is probably going to have a big impact on your insulin needs. Plus your dietary changes might result in weight-loss too, which should help you reach your target blood glucose levels but will impact insulin requirements. Back to your question: I use an insulin pump which releases tiny amounts of basal insulin every five minutes, thus eliminating the need for long-acting insulin shots and any resulting spikes or gaps in basal dose coverage. Maybe a pump isn't something you want to try? Personally, it's helped me a lot because once your basal dose is sorted, dosing for food becomes soo much easier!
Just a thought, but do you keep a blood sugar diary with annotations re correction doses etc (boring, I know) and have you shown it to the diabetes nurses? It might help your cause re looking into alternatives to your current regime.
One last thing: if you're having a morning blood sugar spike, it could be that your metabolic 'dawn phenomenon' glucose levels have changed over time. (I need about 70% more basal insulin in the early hours of the morning compared to my basal dose from 1am - 5am! My diabetes is very brittle so my dosing has to be closely fine-tuned.)

I hope this helps and I hope you get more medical support soon. I congratulate you on your low-carb diet, I find it hard work but I feel soo much better when I go easy on carb intake.

 

[JoshPowJenks]

Maybe they wont do anything like that without a consultants approval, I know when I last got mine changed I didn't even bother going through the nurses at the hospital clinic about it (they sound like yours, you have to ring fifteen times and then rarely get a useful answer), I spoke to the consultant, who listened to my reasoning and accepted it - the libre graphs helped prove the point.

It's not the impression I got from today's call, I got the impression that they flat out won't consider the benefits of Tresiba because it's not the basal DAFNE recommends (and they seem dead set on DAFNE rules being the be all end all of diabetes care), but you could be right. Annoyingly, Covid means I haven't had an in-person appointment with a consultant in over two years, and the telephone appointment I had at the end of last year was with a consultant who I had never spoken to before with no knowledge of my medical history and didn't seem to have any information on me at all. I even had to tell him my most recent hba1c result because he didn't have that information.

I use a split-dose Levemir and get a brilliant cover. I'm also on an LCHF diet (20 grams of CHO a day or less.) Have you tested your basal by meal skipping? Also, I change my basal dosing based on how much I run. My BS's sit mostly between 4 - 5 mmo/l. Do you use a Libre or Dexcom FGM? I don't think any insulin is a miracle fix - it's all about following your numbers.

I have tested my basal with slightly mixed results, and it can change quite frequently. My issue with Levemir - and I'll go into some detail here - is that I need very little at night (currently 2 units at 9pm) or I drop too much overnight. Due to this being quite a small amount, I don't think I'm getting full basal coverage in the morning, because after my morning Levemir (13 units at 9am) I'll gradually rise through the morning and afternoon where I'll sit anywhere between 9-12mmol/L until about 5pm when it seems to peak and I spend a few hours dropping. Tresiba interests me because it's longer lasting and has no "peak" per se, at least in comparison to Levemir.

I use a Libre which definitely helps to see how foods affect my BG. Protein really affects me, and I have to bolus twice for most meals due to the slow action of high protein meals, but I have quite brittle diabetes and it's always a guessing game whether 1 unit of Novorapid will drop me 5mmol/L or won't drop me at all. I'm very jealous of your 4-5mmol/L readings suffice to say!

Hiya, sorry to hear you're having a tricky time with your hospital team, sounds like you're not being listened to, while your diet is probably going to have a big impact on your insulin needs. Plus your dietary changes might result in weight-loss too, which should help you reach your target blood glucose levels but will impact insulin requirements. Back to your question: I use an insulin pump which releases tiny amounts of basal insulin every five minutes, thus eliminating the need for long-acting insulin shots and any resulting spikes or gaps in basal dose coverage. Maybe a pump isn't something you want to try? Personally, it's helped me a lot because once your basal dose is sorted, dosing for food becomes soo much easier!
Just a thought, but do you keep a blood sugar diary with annotations re correction doses etc (boring, I know) and have you shown it to the diabetes nurses? It might help your cause re looking into alternatives to your current regime.
One last thing: if you're having a morning blood sugar spike, it could be that your metabolic 'dawn phenomenon' glucose levels have changed over time. (I need about 70% more basal insulin in the early hours of the morning compared to my basal dose from 1am - 5am! My diabetes is very brittle so my dosing has to be closely fine-tuned.)

I hope this helps and I hope you get more medical support soon. I congratulate you on your low-carb diet, I find it hard work but I feel soo much better when I go easy on carb intake.

I'm definitely interested in the pump. I recently did the DAFNE course (which I thought was rubbish, but that's another story) with the aim of getting onto the pump but, as you've probably gathered from my post, my hospital team aren't proactive enough so I don't anticipate I'll get one for a long time yet.

I do keep a pretty detailed diary, and I did show it to one of the nurses last time I had an appointment, but she was living in the stone age in regards to diabetes technology etc., and her only real advice was essentially "just take more insulin", so pretty unhelpful.

I feel your pain with the brittle diabetes, though, which is why I feel a pump would be beneficial.

 

[ert]

It's not the impression I got from today's call, I got the impression that they flat out won't consider the benefits of Tresiba because it's not the basal DAFNE recommends (and they seem dead set on DAFNE rules being the be all end all of diabetes care), but you could be right. Annoyingly, Covid means I haven't had an in-person appointment with a consultant in over two years, and the telephone appointment I had at the end of last year was with a consultant who I had never spoken to before with no knowledge of my medical history and didn't seem to have any information on me at all. I even had to tell him my most recent hba1c result because he didn't have that information.



I have tested my basal with slightly mixed results, and it can change quite frequently. My issue with Levemir - and I'll go into some detail here - is that I need very little at night (currently 2 units at 9pm) or I drop too much overnight. Due to this being quite a small amount, I don't think I'm getting full basal coverage in the morning, because after my morning Levemir (13 units at 9am) I'll gradually rise through the morning and afternoon where I'll sit anywhere between 9-12mmol/L until about 5pm when it seems to peak and I spend a few hours dropping. Tresiba interests me because it's longer lasting and has no "peak" per se, at least in comparison to Levemir.

I use a Libre which definitely helps to see how foods affect my BG. Protein really affects me, and I have to bolus twice for most meals due to the slow action of high protein meals, but I have quite brittle diabetes and it's always a guessing game whether 1 unit of Novorapid will drop me 5mmol/L or won't drop me at all. I'm very jealous of your 4-5mmol/L readings suffice to say!



I'm definitely interested in the pump. I recently did the DAFNE course (which I thought was rubbish, but that's another story) with the aim of getting onto the pump but, as you've probably gathered from my post, my hospital team aren't proactive enough so I don't anticipate I'll get one for a long time yet.

I do keep a pretty detailed diary, and I did show it to one of the nurses last time I had an appointment, but she was living in the stone age in regards to diabetes technology etc., and her only real advice was essentially "just take more insulin", so pretty unhelpful.

I feel your pain with the brittle diabetes, though, which is why I feel a pump would be beneficial.

I think the 2 units at night and 13 units during the day is a dosing flag. They don't have to be equal be they should be in the same ballpark. Record your waking, bedtime and before meals finger-prick blood sugars as well as your insuin doses, and meals and mealtimes, over a number of days and email them into your DN for comments. What are your bedtime and morning blood sugar readings like on 2 units?

 

[JoshPowJenks]

I think the 2 units at night and 13 units during the day is a dosing flag. They don't have to be equal be they should be in the same ballpark. Record your waking, bedtime and before meals finger-prick blood sugars as well as your insuin doses, and meals and mealtimes, over a number of days and email them into your DN for comments. What are your bedtime and morning blood sugar readings like on 2 units?

I’ve considered this, but I’ve tried a number of different basal doses and anything more than 2 or 3 units before bed will send me low in the middle of the night.

I usually go to bed between 7 - 9mmol/L and I’ll usually wake up between 4.5 - 7mmol/L on my current basal dose.

Before I got my Libre, I would take about 8u basal at night, drink a full pint of milk and occasionally 2 bags of rice cakes before bed, and I’d wake up between 4 - 7mmol/L, so that’s clearly far too much.

 

[ert]

I’ve considered this, but I’ve tried a number of different basal doses and anything more than 2 or 3 units before bed will send me low in the middle of the night.

I usually go to bed between 7 - 9mmol/L and I’ll usually wake up between 4.5 - 7mmol/L on my current basal dose.

Before I got my Libre, I would take about 8u basal at night, drink a full pint of milk and occasionally 2 bags of rice cakes before bed, and I’d wake up between 4 - 7mmol/L, so that’s clearly far too much.

You should still discuss three to four days of recorded data with your DN or team. How many hours before your recorded bedtime blood sugar did you inject fast-acting? Aren't you going high overnight with 2 units?

 

[Daibell]

First, what's R insulin? I take Levemir and split it which is essential. My Libre 2 has shown I was splitting incorrectly and have found the self-funded, but not cheap, Libre 3 very useful in correcting it. Tresiba is a bit more expensive and due to it's 36 hour working time you don't split it. This is a real disadvantage it you need flexibility so personally knowing that I would not swap it for myself.

 

[JoshPowJenks]

First, what's R insulin? I take Levemir and split it which is essential. My Libre 2 has shown I was splitting incorrectly and have found the self-funded, but not cheap, Libre 3 very useful in correcting it. Tresiba is a bit more expensive and due to it's 36 hour working time you don't split it. This is a real disadvantage it you need flexibility so personally knowing that I would not swap it for myself.

R insulin is regular/soluble insulin, which is a short acting insulin which has a later peak than rapid acting insulins like NovoRapid or Humalog.

Out of curiosity what in your Libre readings suggested you were splitting incorrectly? I think I could use that knowledge at the moment.

 

[JoshPowJenks]

You should still discuss three to four days of recorded data with your DN or team. How many hours before your recorded bedtime blood sugar did you inject fast-acting? Aren't you going high overnight with 2 units?

I usually take my nighttime Levemir at about 9:30 and then go to bed at about midnight, so 2.5 hours roughly. I rarely go high with 2 units unless I go to bed high, or if I eat something for dinner that promotes a late spike, although that’s not often.

 

[ert]

I usually take my nighttime Levemir at about 9:30 and then go to bed at about midnight, so 2.5 hours roughly. I rarely go high with 2 units unless I go to bed high, or if I eat something for dinner that promotes a late spike, although that’s not often.

I take my night dose at about 11 pm when I go to bed. Last night my blood sugar was 5.3 at bedtime and this morning 4.9. I'm using a Dexcom with alarms set for 4.3 and 5.6 so I felt safe.

 

[JC Durant]

Hi mate. I have had to push hard for insulin changes 1) Find out if Tresiba costs the what currently have. 2) Tresiba reducers hypos dramatically especially at night. For me Tresiba has been the single best insulin improvement in the last three decades. It is freely available on the NHS and quietly discuss it with your doctor and insist on it.

 

[NicoleC1971]

It's not the impression I got from today's call, I got the impression that they flat out won't consider the benefits of Tresiba because it's not the basal DAFNE recommends (and they seem dead set on DAFNE rules being the be all end all of diabetes care), but you could be right. Annoyingly, Covid means I haven't had an in-person appointment with a consultant in over two years, and the telephone appointment I had at the end of last year was with a consultant who I had never spoken to before with no knowledge of my medical history and didn't seem to have any information on me at all. I even had to tell him my most recent hba1c result because he didn't have that information.



I have tested my basal with slightly mixed results, and it can change quite frequently. My issue with Levemir - and I'll go into some detail here - is that I need very little at night (currently 2 units at 9pm) or I drop too much overnight. Due to this being quite a small amount, I don't think I'm getting full basal coverage in the morning, because after my morning Levemir (13 units at 9am) I'll gradually rise through the morning and afternoon where I'll sit anywhere between 9-12mmol/L until about 5pm when it seems to peak and I spend a few hours dropping. Tresiba interests me because it's longer lasting and has no "peak" per se, at least in comparison to Levemir.

I use a Libre which definitely helps to see how foods affect my BG. Protein really affects me, and I have to bolus twice for most meals due to the slow action of high protein meals, but I have quite brittle diabetes and it's always a guessing game whether 1 unit of Novorapid will drop me 5mmol/L or won't drop me at all. I'm very jealous of your 4-5mmol/L readings suffice to say!



I'm definitely interested in the pump. I recently did the DAFNE course (which I thought was rubbish, but that's another story) with the aim of getting onto the pump but, as you've probably gathered from my post, my hospital team aren't proactive enough so I don't anticipate I'll get one for a long time yet.

I do keep a pretty detailed diary, and I did show it to one of the nurses last time I had an appointment, but she was living in the stone age in regards to diabetes technology etc., and her only real advice was essentially "just take more insulin", so pretty unhelpful.

I feel your pain with the brittle diabetes, though, which is why I feel a pump would be beneficial.

That is frustrating but well done on the improvements made to date.
I ditched my hospital team as I did not get on with the consultant and ask the GP to write to the alternative CCG who I felt to be more enlightened. I have no idea if that is even practical for you. I've since moved back but have pump funding secured for past 8 years and have been approved for the Dexcom + tandem iq system. With active life and low carb it is frustrating not to be fully supported when you are clearly motivated to make things better for yourself. I hope you can push through this somehow.