Should I try a different basal?

[Robin]

What would happen if you phoned the specialist nurses directly? I'm fairly certain you can do that locally to me.....but one of the things that stands out from the forum is how areas can differ.

That's plan B! I thought I'd try official channels first. Plan C if all else fails is to ask my GP to re-refer me, which the hospital said was always an option when they discharged me. To be honest, I haven't felt the need for specialist input for the last five years, and my surgery is a five minute walk from my house, as opposed to a Sabbath Day's journey to the hospital the wrong side of Oxford! I'm busy collating data at the moment, so I've got my thoughts together whichever route I end up taking, then I'll broach it at my annual review at the beginning of next month.

 

[Robin]

I'm with you in the frustrations of trying to sort basal. After donkeys years toddling along very nicely on Levemir I started getting a few 3am-5am hypos or waking up in the 3s, but then it seemed to be running out in the evening. I tried splitting the dose, didn't really seem to work for me, but maybe I should have persevered and played around a bit more. I'm now a few weeks into trying Tresiba, not convinced either way yet, however it does have a lovely flat line and have not had a nighttime low since starting.

It's interetsting that you've gone the other way, so to speak! I'm not convinced Levemir will be the whole answer, but I'm hoping it might be a bit more biddable than Lantus!

 

[Bloden]

For what it's worth Robin, I like Tresiba.😛

I had all the classic problems with Lantus - perfect all night = too little all day, perfect all day = hypos at night, and finally mega-highs in the afternoons/evenings cos it'd stopped working at about 18 hours.

After just a month on Tresiba, my Libre predicted an A1c of 7.3, down from 8.1. Wow!

Lantus isn't for everyone. Good luck deciding your next move - and getting access to a DSN.

 

[Robin]

For what it's worth Robin, I like Tresiba.😛

I had all the classic problems with Lantus - perfect all night = too little all day, perfect all day = hypos at night, and finally mega-highs in the afternoons/evenings cos it'd stopped working at about 18 hours.

After just a month on Tresiba, my Libre predicted an A1c of 7.3, down from 8.1. Wow!

Lantus isn't for everyone. Good luck deciding your next move - and getting access to a DSN.

That's useful to know, thank you. I currently take my Lantus at lunchtime because it was the least worst time, but my Libre trace shows a steady rise from mid morning as it runs out, followed by a downward swoop at about 4-5pm when the new dose has a bulge. I'd been thinking the disadvantage of Tresiba would be not being able to adjust it quickly ( for when we go on a walking holiday for example, and I might want to lower basal), but it may be worth living with that just to get a flatter profile.

 

[Lisa66]

Sounds like a good plan Robin. I think I must be quite lucky where I am. The consultants and DSNs seem to hold their clinics at various gp surgeries, so I get appointments to see them at my Drs or I could see them elsewhere if dates don't suit. I've definitely put in a few calls to the nurses this year having rarely done so before and they've been really friendly, helpful and understanding.

Who knew sorting basal insulin could be so frustrating, not me? Probably like you, I feel likeI have a school project going on, downloading data and then there's my a4 notebook...keeps me out of mischief I guess.🙂

 

[SB2015]

It was the frustrations with highs and lows that took me to the pump. I had no idea what else I could do to get HbA1 c any better in MDI but the pump, along with the Libre has got me to mid 40s for past year now. I guess that is the advantage of being with DSNs as they have that as an option, whereas the GP can not deal with pumps. I also feel that I am in much safer hands at hospital and with contact with DSN via email or phone as they are gathering data from many more people than a GP. our Practice only has two of us on pumps, and we are each with a different GP.

I hope your u get things sorted soon Robin.

 

[SB2015]

I'd been thinking the disadvantage of Tresiba would be not being able to adjust it quickly ( for when we go on a walking holiday for example, and I might want to lower basal), but it may be worth living with that just to get a flatter profile.

This is when the pump comes into its own. I have als found that after a month and a half on FIASP I get a faster response to corrections and I am finding it a lot easier to deal with meals whilst away as I don't need to pre plus as much.

Mind you I still get the carbs wrong as it is all a bit of guess work with such unfamiliar food. Sat here at 16.3, very much looking forward to getting some sleep but waiting for levels to drop before going to sleep.

 

[Bloden]

That's useful to know, thank you. I currently take my Lantus at lunchtime because it was the least worst time, but my Libre trace shows a steady rise from mid morning as it runs out, followed by a downward swoop at about 4-5pm when the new dose has a bulge. I'd been thinking the disadvantage of Tresiba would be not being able to adjust it quickly ( for when we go on a walking holiday for example, and I might want to lower basal), but it may be worth living with that just to get a flatter profile.

Re: adjusting Tresiba - I've found it takes three days to show an effect, more or less the same as Lantus (but we're all different, of course). 😛 What I didn't mention before was Tresiba's flat as a pancake profile...I'm even able to have a bedtime correction dose - there's no WAY I'd've been able to do that with roller coaster Lantus! 😱 I wish I'd ditched Lantus years ago.🙄

 

[trophywench]

The trouble is with any basal insulin - if its particular profile doesn't near as dammit match your own body's actual requirement you'll be stuffed - whatever insulin you use on MDI.

Humulin I - was on that after I became immune to porcine and had disastrous totally unpredictable hypos on the pillion of Pete's motorbikes and only by brute strength did he keep the bikes upright when that happened - and whilst driving a car myself as the crash barrier on the M42 can testify in two places - wrote off one company car and severely damaged another but TG no other cars or any other people affected by the two events - and I never was injured and only lost my licence for 12 months.

Lantus - highs, lows, stored pockets of it suddenly letting go with no warnings other than Oh **** I have hypo symptoms and wham - even many years later well after I got my first pump! Of course I tried splitting it not splitting it and changing timings etc etc etc ad infinitum. So I changed to twice daily

Levemir - Oh peace, perfect peace for years with only minor tweaks to timings and doses - but those made HUGE differences to my control and my BP and my A1c both appreciated it by that time! Best thing was, I could actually see the effects of ANY change within HOURS - incredible! - although of course, I always allowed it a few days to be convinced and actually say it our loud LOL Biddable is the right word as far as I'm concerned and it's the one I've always used to describe how it worked for me!

Now - when I see how many - some vastly different - different basal rates I REALLY need to swap between hour by hour during each 24 hours on the pump and see how little basal my body actually needs - I seriously wonder how the hell I managed to stay alive and functioning for all those decades previously!

Robin take an enlarged screenshot of the Levemir graph (see http://www.diabetes-support.org.uk/info/?page_id=428) to show your nurse to explain to her how different it is to eg Lantus - the graph speaks for itself really. The length of action and the peak of it, depends on the dose per kilo of body weight - I took 14u in a morning on rising around 7am and then another 4u at 9.30 to 10pm at night to counter my 2am high and slightly later, low BG and last me through till 7am again. You'll be different of course - and I started off 12 hours apart and had to tweak timings and reduce/increase over a period until I eventually got there to what and where was best for me - but because the results were virtually instant (and you have to give it a whole week if not longer for the effects of Lantus to leave your body so you kind of have to ignore much of what happens in week 1- so I mean after that was over and done) it's much less tedious making changes and not so much of a mental mountain to climb. The disastrous changes also showed themselves quickly too - but I only gave them three days max trial if they seemed that way!

 

[Robin]

The trouble is with any basal insulin - if its particular profile doesn't near as dammit match your own body's actual requirement you'll be stuffed - whatever insulin you use on MDI.

Humulin I - was on that after I became immune to porcine and had disastrous totally unpredictable hypos on the pillion of Pete's motorbikes and only by brute strength did he keep the bikes upright when that happened - and whilst driving a car myself as the crash barrier on the M42 can testify in two places - wrote off one company car and severely damaged another but TG no other cars or any other people affected by the two events - and I never was injured and only lost my licence for 12 months.

Lantus - highs, lows, stored pockets of it suddenly letting go with no warnings other than Oh **** I have hypo symptoms and wham - even many years later well after I got my first pump! Of course I tried splitting it not splitting it and changing timings etc etc etc ad infinitum. So I changed to twice daily

Levemir - Oh peace, perfect peace for years with only minor tweaks to timings and doses - but those made HUGE differences to my control and my BP and my A1c both appreciated it by that time! Best thing was, I could actually see the effects of ANY change within HOURS - incredible! - although of course, I always allowed it a few days to be convinced and actually say it our loud LOL Biddable is the right word as far as I'm concerned and it's the one I've always used to describe how it worked for me!

Now - when I see how many - some vastly different - different basal rates I REALLY need to swap between hour by hour during each 24 hours on the pump and see how little basal my body actually needs - I seriously wonder how the hell I managed to stay alive and functioning for all those decades previously!

Robin take an enlarged screenshot of the Levemir graph (see http://www.diabetes-support.org.uk/info/?page_id=428) to show your nurse to explain to her how different it is to eg Lantus - the graph speaks for itself really. The length of action and the peak of it, depends on the dose per kilo of body weight - I took 14u in a morning on rising around 7am and then another 4u at 9.30 to 10pm at night to counter my 2am high and slightly later, low BG and last me through till 7am again. You'll be different of course - and I started off 12 hours apart and had to tweak timings and reduce/increase over a period until I eventually got there to what and where was best for me - but because the results were virtually instant (and you have to give it a whole week if not longer for the effects of Lantus to leave your body so you kind of have to ignore much of what happens in week 1- so I mean after that was over and done) it's much less tedious making changes and not so much of a mental mountain to climb. The disastrous changes also showed themselves quickly too - but I only gave them three days max trial if they seemed that way!

Thank you, Trophy, food for thought. I've got appointment booked now, for when we get back from hol in a couple of weeks, and I'll be pursuing Levemir,

 

[mikeyB]

Well, when I was on Lantus I was night time hypo king. Switching to split dose Levemir, morning and bedtime, got rid of night time hypos and the dawn phenomenon. I was like you, wake with 6, an hour and a half later 10 with no food. Now I wake with 6, two hours later still 6-7. Levemir is wonderful😉j

 

[Robin]

Well, when I was on Lantus I was night time hypo king. Switching to split dose Levemir, morning and bedtime, got rid of night time hypos and the dawn phenomenon. I was like you, wake with 6, an hour and a half later 10 with no food. Now I wake with 6, two hours later still 6-7. Levemir is wonderful😉j

Thank you, that's what I'm hoping for.
I've had really useful feedback from a lot of you, and thank you all very much. I know Tresiba works for some people, and I think if I needed a really flat basal, that would be the way to go. But I don't have a flat glucose output, so there'd still be the mismatch, and I'm hoping I can work with Levemir and get as close a match as possible.
(and for days like today when I've walked miles round the Blenheim three day event, watching the cross country, and am now treating a 2.7!)

 

[trophywench]

Robin - why on earth didn't you reduce your bolus amount - or eat more and ignore the carbs - to compensate - you planned this outing I presume? LOL

Or - did you?

 

[Robin]

Robin - why on earth didn't you reduce your bolus amount - or eat more and ignore the carbs - to compensate - you planned this outing I presume? LOL

Or - did you?

I planned the outing, but it didn't work out as planned!
I bolused conservatively for lunch, half an hour before I planned to eat it, ( because it was a carby roll) sitting down for an hour's break in the action. At which point, we realised we were both very tired, it looked like rain, and we'd rather go home and watch the rest on TV. So I rang OH to pick us up at the nearest road, a mile and a half from where we were at that point, so instead of sitting down, we walked to the rendezvous briskly, stuffing our rolls in as we went. I ate a couple of Belvitas in the car to compensate, and some fruit when I got home,so all in all, I'd eaten double what I'd bolused for, which I thought would be enough. Once my Bolus had worn off, I'd still got basal circulating, which was a contributary factor, although not the only factor, obviously. My liver was obviously beginning to replenish itself, but my lunchtime Lantus was having its peak, all at the same time.
The best laid plans!

 

[trophywench]

Oooopsie! LOL

 

[trophywench]

PS Didn't know you were either a mouse or a man?

 

[Lisa66]

Well I've given Tresiba a few weeks try (some may say I should have given it a bit longer) and I did wake up every morning to a lovely flat line on my Libre. However, I have now gone back to Levemir, it seems to suit me better. I feel more in control being back with my old friend, even though we seemed to have a bit of a falling out earlier in the summer, no idea what was going on there. I can definitely appreciate why people like it, I did gain more knowledge, which of course is always good, but as my days activity wise can vary quite a bit Levemir seems to be the one for me, for now anyway, not perfect, but not sure anything ever can be. I actually just feel better on it. Anyway, it's all very personal isn't it?

Not long to go now until your appointment Robin. Hopefully, with all the information you've gathered you'll find "the one" for you.🙂

 

[Robin]

Not long to go now until your appointment Robin. Hopefully, with all the information you've gathered you'll find "the one" for you

I'm looking forward to getting on with it, and I'm thinking, unlike relationships with men, if I find the new model doesn't suit, I can always go back to the old!

 

[Lisa66]

Ha ha, I'm sure there's a funny comment to make there...but I won't. Instead I'll just take the opportunity to wish you a happy and relaxing holiday. 🙂