PCT says no to Levemir???!!!

[pippaandben]

Exactly so there should be no margin for error screwing needles on should there?

It was a load of twaddle anyway, their pens were useless and leaked.

If I do have to use Lantus what pen is the best to use? I can only find one that uses single units the Autopen 24 (AN4210) - is this the one that leaks!!! I do not want to use the disposable Optiset on ecology grounds. Also don't fancy travelling abroad with 50+ pens!
Still waiting for PCT answer. Also concerned that I was telling nurse the recommended start doses per kg and % splits and she suggested nothing but accepted what I said and we worked out the maths together. But was saying set doses for breakfast and dinner as I rarely have/need lunch snack - only to feed my insulin mix at the moment. Ignored my attempt at a carb counting and correction exercise - don't even know if she understood what I was trying to show her. She said I was correct in saying I would not be allowed to go on a Dafne course (after she told me she had put my name down for one) but she had asked for appt with diabetes dietician. Got to the stage of not arguing. Even with Lantus I will be started on a split dose 60:40 suggested times 10 am and 10pm c 3 hours after each meal to ensure that max of the rapid acting is working and that I will not have an overlap and cause a hypo. - Once I get my hands on the insulins at least I know the basics of what they are each supposed to be doing. Have a feeling that I will need to do basal testing sooner rather than later. But if Lantus then I will have to suffer it for a week to make sure the doses have settled. I weigh 78kg and on 21 units mix. so 16 basal with 9.5/6.5 based on 80% current. I know you can't give medical advice but I'm prescribing for myself here. Wanted to give 10units each meal but without midday meal agreed keep to units each of the two I do have and see what happens!! Should I carb count from the start on a 1:1CP base? Do I correct from the start on a 1:3mmol differential?
Sorry for the long message thanks for getting to the end of it

 

[PattiEvans]

If I do have to use Lantus what pen is the best to use? I can only find one that uses single units the Autopen 24 (AN4210) - is this the one that leaks!!! I do not want to use the disposable Optiset on ecology grounds. Also don't fancy travelling abroad with 50+ pens!

I was talking about the Solostar disposable pen Pippa. As far as I know the Autopen 24 (by Owen Mumford) is OK. It's a long time since I was on Lantus and then there was a horrible white pen which was difficult to use but has since been discontinued. Had I have continued on Lantus I would have asked for the Autopen 24.

Still waiting for PCT answer. Also concerned that I was telling nurse the recommended start doses per kg and % splits and she suggested nothing but accepted what I said and we worked out the maths together. But was saying set doses for breakfast and dinner as I rarely have/need lunch snack - only to feed my insulin mix at the moment. Ignored my attempt at a carb counting and correction exercise - don't even know if she understood what I was trying to show her.

Is this the nurse at the GP's surgery? Sounds like it. A proper DSN would have been able to help you.

She said I was correct in saying I would not be allowed to go on a Dafne course (after she told me she had put my name down for one) but she had asked for appt with diabetes dietician. Got to the stage of not arguing.

I've never done DAFNE, I taught myself with the help of http://www.bdec-e-learning.com/ Afterwards I had a long appointment with the head diabetes dietitian and we ran through it, but she thought I knew what I was doing by that time (thanks to the online course).

Even with Lantus I will be started on a split dose 60:40 suggested times 10 am and 10pm c 3 hours after each meal to ensure that max of the rapid acting is working and that I will not have an overlap and cause a hypo. - Once I get my hands on the insulins at least I know the basics of what they are each supposed to be doing. Have a feeling that I will need to do basal testing sooner rather than later. But if Lantus then I will have to suffer it for a week to make sure the doses have settled. I weigh 78kg and on 21 units mix. so 16 basal with 9.5/6.5 based on 80% current. I know you can't give medical advice but I'm prescribing for myself here. Wanted to give 10units each meal but without midday meal agreed keep to units each of the two I do have and see what happens!! Should I carb count from the start on a 1:1CP base? Do I correct from the start on a 1:3mmol differential?
Sorry for the long message thanks for getting to the end of it

If you are currently on 21 units total daily dose of mixed insulin then 36u TDD (16u basal + 2 x 10u bolus) seems like a heck of a hike. I think I'd be inclined to start much more conservatively by using a ratio of 1u:10g carb for your meals and see how you go on that. Best case scenario? Ask to see a proper DSN at the hospital clinic.

 

[everydayupsanddowns]

Green Autopen24s are fine (well a bit plasticky, and the lettering wears off... but they work OK). Does 1u increments. The blue ones are 2u only.

clikSTAR is the Sanofi reusable/cartridge one (also 1u), and soloSTAR is their prefilled disposable.

No-one should be suggesting Optisets Opticliks or Optipen Pros - they were discontinued in Dec 2011 😱

 

[Abi]

I am interested to hear that the nurse either agreed to or suggested a split in lantus straight away
Was this at your insistence or was she acknowledging that there is no such thing as an insulin that gives consistent coverage for 24 hours for everybody?
So many health care professionals are still insisting that the basal analogues last for 24 hours and deny that they need splitting- but I wonder if it would have been worth starting off with a single dose and then doing some basal tests after about a week to see if it was running out before 24 hours- I would probably have done so.
However with a split dose `i guess timing of each one is less critical if you want to lie in or go to bed early or something
Just been on a diabetologists forum- general consensus is that only higher doses of lantus need splitting i.e. > 50 units-this seems odd to me- a small amount would have a larger surface area: volume ratio and potentially absorption would be more rapid- hence possibly getting used up more quickly (I think this is a well established scientific rule).
Many of them seemed to agree that twice daily levemir or even isophane are better for flexible DAFNE type regimes as respond quicker to change in dose e.g. for exercise/ alcohol etc
If you can;t get levemir and lantus leaves much to be desired might even be worth a trial of isophane in a split dose- some people still get good results using this insulin as a basal despite it's somewhat poor reputation
Also there appears to be some speculation amongst diabetologists that when the new insulin analog degludec is established novo-nordisk may decide levemir is not lucrative enough and let their newer product take it's place hence discontinuing levemir.
Lantus at the moment has far overtaken levemir in the basal market probably due to reps spouting the 24 hour cover line- so it seems to be a competition to see who can get the longest acting analog and hence fewer injections ( we must save those impious diabetics who want to be able to keep their toes and kidneys and drive a car and have a life, from themselves) grrrr

 

[pippaandben]

Thanks Patti and Abi for the information and advice. I just want to get my hands on something to start having my life. Quick question to add to the last tome - should the TDD on new regime be the same as old if not carb counting? I really do want to carb count from day 1 as I am fed up with feeding the insulin. So even if nurse (yes GP practice nurse but only one dealing with diabetics) says fixed amount for meals I don't want to follow that. Do you think is would be ok? I just don't trust her to give impartial advice now. And yes she did say split Lantus because I said Levemir split gives better control and Lantus does not always give 24 hour cover.

Surprise, surprise when I phoned the surgery this morning they had not received a reply from the PCT. However luckily the person I spoke to was the very one who had done the original email to them and so knew all about it. She checked all 60+ emails in her inbox to double check and then re-sent the original with a chaser whilst I was on the phone. She also said it was unusual for an answer to take a week - normally only a couple of days. Next appt next Thursday - watch this space

 

[Northerner]

I think your practice nurse is out of her depth with this, I suspect she rarely deals with MDI and carb counting (if ever) so is offering advice based on what she knows of other patients' experiences - who may not be achieving the control and flexibility you desire by sticking to her rules. My practice nurse is quite knowledgeable up to a point, but I know when I have had conversations with her that there is a point where she thinks she knows more than me, but doesn't! 🙂

 

[Abi]

From my diploma in diabetes management in primary care ( quite dumbed down and now almost 6 years ago) the general consensus seemed to be add total daily dose on mix- half this and reduce to 60% - start with this as basal
So if you are on 21 units twice daily this would= 60% of 21- lower than current starting dose. But the above is very conservative so probably no harm in starting higher- as long as you have good hypo warnings and plenty of strips
As far as corrective dose- DAFNE teaches one unit drops 2-3 mmol/L. Other methods to calculate this are average total daily dose divided into 100.
Best be conservative when starting especially if correcting pre bed
1:10 is a good ratio to start off with. Seems to be standard DAFNE advice and if you are a type 2 will probably be less at risk of hypos anyhow- Once the lantus has a few days to settle in you will have no problems establishing what you should take
At least nursie seems to be taking on board the fact that you are bothering to educate yourself. I've heard of some instances where people are denied basal bolus
I'm glad you are taking up the fight re levemir as people must have as many options open to them as possible and no two people with diabetes are alike. But I suspect you will get on superbly with the new regime regardless of which basal insulin you have

 

[pippaandben]

Abi - you are a star. Thanks for this. My current TDD units are 21 on humalog 25 mix a day split 8 am and 13 pm. 10 units am. gave me hypos at the least sniff of any exercise (carrying shopping home, light gardening) after 3 hours. Only way I can eat fruit is to have it immediately after a meal. I do find it difficult not to be able to have anything much in the evening.

 

[Abi]

so your total daily dose on the mix is 21 units, not 21 twice daily
16 units basal in that case seems like a heck of a lot especially together with 10 units novorapid each mea
It's not my place to go against the advice given to you but be very careful!

 

[Northerner]

so your total daily dose on the mix is 21 units, not 21 twice daily
16 units basal in that case seems like a heck of a lot especially together with 10 units novorapid each mea
It's not my place to go against the advice given to you but be very careful!

I'd question the doses as well 😱 From 21 to 46 units as a starting point seems to be a huge increase. Can you request a second opinion, or question the recommendation?

 

[PattiEvans]

I'd question the doses as well 😱 From 21 to 46 units as a starting point seems to be a huge increase. Can you request a second opinion, or question the recommendation?

That's almost word for word what I said earlier - though Pippaandben said she only usually eats twice a day so it would be 36u per day instead of 21u, it's still an awful hike!

 

[pippaandben]

That's almost word for word what I said earlier - though Pippaandben said she only usually eats twice a day so it would be 36u per day instead of 21u, it's still an awful hike!

I eat 3 times a day now to feed the insulin - and they say it is the insulin that makes you put on weight! So have I got this worked out correctly

Current TDD 21 units. 60% of half =6.5 (if I can get half unit pen which is only available for Levemir - back to square one) or take 7.
Average Breakfast 4.5 and dinner 8-10 based on my counts recently. Plus or subtract a correction dose based on 1u:3mmol. Add to dinner dose any evening fruit taken within 2-3 hours of dinner in excess of 10g carbs (assuming 10g and under is covered by basal.
So TDD say 23-25. Does that sound better? Then after first week do a proper basal test if on Lantus or after say 3-4 days if on Levemir. Initially single dose and see what happens or split from the start?

As you have gathered I am leading the nurse here - she is fine once you are on a standard regime but when things change - well! That is why when first Dx I referred my self to the hospital (high teens, low 20s always when testing) and they got retrospective referral from Dr after telling him what to prescribe.

 

[PattiEvans]

23 - 25 sounds a lot better. Don't quite understand what you mean by

Average Breakfast 4.5 and dinner 8-10 based on my counts recently. Plus or subtract a correction dose based on 1u:3mmol. Add to dinner dose any evening fruit taken within 2-3 hours of dinner in excess of 10g carbs (assuming 10g and under is covered by basal.

Are those figures units of insulin or carb grams? If you are going to eat fruit up to 3 hours after your meal you have to be aware that your bolus is tailing off by then and may not cover the fruit. Better to eat it with your meal. In a perfect world your basal shouldn't be covering any food whatsoever. If it is then it's likely to be too high.

Incidentally, are you sure you're T2? Your doses sound quite low for a T2.

 

[everydayupsanddowns]

I was wondering the same thing Patti. Referral to a Consultant to review your case and identify possible LADA might be worth suggesting to your GP.

 

[pippaandben]

23 - 25 sounds a lot better. Don't quite understand what you mean by
Are those figures units of insulin or carb grams? If you are going to eat fruit up to 3 hours after your meal you have to be aware that your bolus is tailing off by then and may not cover the fruit. Better to eat it with your meal. In a perfect world your basal shouldn't be covering any food whatsoever. If it is then it's likely to be too high.

Incidentally, are you sure you're T2? Your doses sound quite low for a T2.

They said I was type 2. I'm 68 and when the tablets seemed to stop working end of last summer (2x 1g Metformin and 4xDiamicron daily) levels were all in mid-high 20s - even reached 33+ when my meter just said HIGH and Hb 101 and I was really thirsty and had lost 21lbs weight in a year- 10 in 12 weeks caravannning when chips crept into my diet twice a week!. Each oral medication took about 2 weeks to have any effect which woujld last 6-8 weeks before levels rose again - add a tablet and repeat til on max of 4 most of last summer. Ketones always negligible. All figures in units and based on 1 unit for 10g carbs

 

[trophywench]

Don't care if you are 104, you can still be LADA.

There are blood tests they can do which will establish it one way or the other.

 

[PattiEvans]

It sounds very like LADA to me. I spect they said T2 because of your age. They did it to me (I was 57 at diagnosis and like you had lost weight really fast). I was on insulin from almost day 1 but I was more or less sure I wasn't T2. Eventually the consultant did a C-Peptide test on me which proved I was T1 because I wasn't producing insulin.

 

[pippaandben]

It sounds very like LADA to me. I spect they said T2 because of your age. They did it to me (I was 57 at diagnosis and like you had lost weight really fast). I was on insulin from almost day 1 but I was more or less sure I wasn't T2. Eventually the consultant did a C-Peptide test on me which proved I was T1 because I wasn't producing insulin.

I think I can guarantee that neither my GP or practice nurse will have heard of LADA! What difference will this make to going to MDI - apart from understanding that the goal posts are forever moving and to test, test, test. Having looked up LADA details it does seem to me that I am absolutely typical. I also have underactive thyroid.

 

[Northerner]

It sounds like LADA to me also! I was diagnosed aged 49 and it is thought that I had a slow-onset loss of insulin production over the previous couple of years (with hindsight I had the symptoms - weight loss, thirst, excessive urination, lethargy etc.). My consultant thinks that possibly my running helped to keep me particularly sensitive to the insulin I was still producing. It was only when I caught a virus that my pancreas could no longer cope and I was diagnosed.

Your suggested TDD of insulin would be very similar to mine. You wouldn't be the first member here to be diagnosed T1/T1.5 (LADA) in their late 60s! Definitely worth exploring and hopefully will give you access to more informed HCPs 🙂

Should make it even more suitable for you to be on MDI 🙂

 

[pippaandben]

It sounds like LADA to me also! I was diagnosed aged 49 and it is thought that I had a slow-onset loss of insulin production over the previous couple of years (with hindsight I had the symptoms - weight loss, thirst, excessive urination, lethargy etc.). My consultant thinks that possibly my running helped to keep me particularly sensitive to the insulin I was still producing. It was only when I caught a virus that my pancreas could no longer cope and I was diagnosed.

Your suggested TDD of insulin would be very similar to mine. You wouldn't be the first member here to be diagnosed T1/T1.5 (LADA) in their late 60s! Definitely worth exploring and hopefully will give you access to more informed HCPs 🙂

Should make it even more suitable for you to be on MDI 🙂

If I can persuade Dr to do test and I am LADA can I then go on Dafne course? What do I do if Dr just says treatment is the same so no point in finding out?
Already identifed that my time on sulphonylureas will have helped destroy beta cells even quicker if I am. And I did ask Dr about a year ago if I needed Gad or C peptide tests and he laughed at me.