# Thoughts?



## KookyCat (May 15, 2015)

Right next appointment with consultant is in a few weeks, with second additional consultant in attendance.  So I'm trying to work out how to present my case in the most appropriate way without just having a paddy and screaming "give me a different insulin" 

So I'm currently on 12 units of Lantus, basal testing shows the following:
1.  It keeps me very stable until 6hours after I've injected (morning time for me) when it takes a dip.  The dip time moves if I move the time of my morning Lantus jab.
2.  Since the 6 hour mark is lunchtime I get scuppered with further basal testing at that point because I'm too low to continue.
3.  On 10 or 11 units of Lantus the same thing happens but I'm not as low at lunch because my blood sugar starts to rise from about 9am onwards before leaking back down between 12 and 1.  If I then continue with my basal testing after the six hour dip, it stays stablish with a slight rise mid afternoon until approximately six hours after lunch (dinner time ) where it has another dip.
4.  On 13 units I'm stable until lunch then hypo between 12 and 1.

I conclude from this irritating situation that Lantus is the problem not my slightly weird basal requirements.  10/11 units is clearly not enough because it allows my blood sugar to creep up in the morning, so reducing it any further just doesn't work.  The only thing that can work is getting rid of the ruddy Lantus.  Does that sound convincing?  Am I missing anything obvious?


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## Northerner (May 15, 2015)

I don't think you have anything to lose by trying levemir (or even possibly tresiba), you might find you respond differently to it, or that you find it easier to split. An alternative to try might be to get a half unit pen for your lantus to see if that half unit tweak can more closely match your basal requirements. Ideally, of course, you could do with a pump!


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## AJLang (May 15, 2015)

I think KookyCat that, although it might be frustrating to hear, that the consultants may try to suggest that you are trying to keep your control too tight. They're not right if they say this but it's a problem that I've come across before - my clinic thinks that a diabetic is doing brilliantly if 50 % of BGS are under 8 and the rest above. When you say that your BGs are going high what are the levels?
I found that Levemir twice a day worked very well for me until the gastroparesis.


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## stephknits (May 15, 2015)

I agree, the Levemir might work better for you, especially split.  You have done everything possible to test your basal it seems, so can offer no useful advice. I hope they listen in your appointment and you feel you get the best outcome.  It all takes so long though, doesn't it.  I get this is forever and everything, but it would be great if for large parts of the forever we could be relatively happy with our regime.  Best of luck


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## Robin (May 15, 2015)

good luck Kooky. I find it hard to get past my GP's attitude of 'Well you're doing better than everyone else on my books' when I expressed concern that my HbA1c had drifted from 6.5 to 6.9 to 7.1. No, just because everyone else doesn't bother. ....


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## KookyCat (May 15, 2015)

AJLang said:


> I think KookyCat that, although it might be frustrating to hear, that the consultants may try to suggest that you are trying to keep your control too tight. They're not right if they say this but it's a problem that I've come across before - my clinic thinks that a diabetic is doing brilliantly if 50 % of BGS are under 8 and the rest above. When you say that your BGs are going high what are the levels?
> I found that Levemir twice a day worked very well for me until the gastroparesis.



They already think I'm obsessed with tight control but I'm honestly not.  My problem is I have a HBA1C of 39-43, because I run low over night (usually very low).  When I talk high I mean 9 and 10 because I feel crappy at that level.  I have had two double figures (over 10) in the last 18 months, but I am extremely sensitive to insulin so it's hardly a surprise.  I am extremely controlled with food, but that's just the way I've always been.  It's really the restriction of it all that is causing me a problem.  If I do any activity for a sustained period I take a nosedive, I can't inject insulin after six in the evening or I go hypo at some point, no hoovering in the evening (that's a plus ), if I eat a salad at night I'll go hypo etc, etc.  they just don't seem to compute that being this sensitive the stuff is just as difficult as being resistant to it.  

Levemir seems to be off the table he doesn't think it will help.  I just want to try a different insulin, and if the same thing happens then clearly it's me and I'll address it.  Lantus has never worked for me really.  Sorry I'm ranting now because it gets me so worked up


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## AJLang (May 15, 2015)

It's good to rant  You will feel high/awful at 9-10 because your BGs are generally so much lower and it is great that you are getting so few BGs in double figures. However if you started running your night BGs slightly higher then the 8/9's may not feel quite so bad.  I'm NOT advocating being in 8's/9's very often but sometimes you need the flexibility so that you can feel confident that you can go out for a walk etc without the worry of a hypo. Tight control can cause it's own problems if you are running low during each night e.g. risking losing hypo awareness and feeling awful when not much above 8.  Mega apologies if I'm saying the wrong thing but are you able to set a basal level that will keep you around 6/7/8 overnight?  I know this is slightly higher than you would like but as well as good control yo u also need a good quality of life.
Why does the consultant not think that neither a pump or Levemir will help?  That sounds like they are not being very helpful.


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## Redkite (May 15, 2015)

KookyCat, my son's experience with Lantus was awful - he was on tiny amounts, but the smallest increment available was a whole unit (though I think there may be half unit pens around now?).  Nevertheless, he would crash a few hours after the Lantus was given, and then run out of basal entirely at about the 20 hour mark.

Are you against the idea of a pump?  With pumps, you can program a basal profile that is unique to you - as opposed to having to work around the action of a long-acting insulin.  A pump would solve many of the issues you have!  You could ask for a trial, perhaps?


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## KookyCat (May 15, 2015)

Northerner said:


> I don't think you have anything to lose by trying levemir (or even possibly tresiba), you might find you respond differently to it, or that you find it easier to split. An alternative to try might be to get a half unit pen for your lantus to see if that half unit tweak can more closely match your basal requirements. Ideally, of course, you could do with a pump!



I'll give anything a go at this stage although I'm scared rigid of injecting insulin in the evening so that might be interesting   I asked for a half unit pen and they told me there wasn't one on the rosta (which I assume means it not on the NHS prescribing list) I know there is one because you'd mentioned it before so I'll try again on that one.   It's really really frustrating because I know it's the Lantus, there's a bit of my Timmy body too with it's weird requirements but I reckon I could accommodate that if the Lantus wasn't so freakishly unstable.  Pumps are a sore point, we're not pump friendly here, Manchester are and that's why there's a second consultant coming.  At least we've abandoned the honeymoon theory now though, I'm like Benjamin button, going in reverse 

Also, this freakish occurrence has thrown a spanner in their works, I never have to change my mealtime ratios when the basal goes on a bender, that stays totally stable.  So much so he mumbled something about MODY last time, then chunnered about antibodies ruling that out.  Then mumbled something about brittle diabetes, and sensitivity.  I think I've flummoxed him


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## everydayupsanddowns (May 15, 2015)

I would present it just as you have said. Explain the problem that you have been trying to fix... Explain that you have fasting tested to rule out bolus/ratio errors. Explain that you would like to try Levemir, even if they do not think it will work, just because diabetes doesn't always play by the rules!

Interestingly the draft NICE guidelines for T1 that went out for consultation and are currently being finalised listed Levemir 2x daily as the best basal replacement for most people, based on the evidence. 

Hope that in the end you are listened too and the conversation flows really easily. Most of the times I have really prepped and tried to get my 'negotiating head' on before a consultation, I've not needed it at all and they have just said Yes straight away 

FWIW, my bolus ratios almost never change either. Most of my tweaks/changes through the year are basal only. It is only when my basal needs have changed by upwards of +/- 20% do I even need to think about tweaking meal ratios


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## KookyCat (May 15, 2015)

AJLang said:


> It's good to rant  You will feel high/awful at 9-10 because your BGs are generally so much lower and it is great that you are getting so few BGs in double figures. However if you started running your night BGs slightly higher then the 8/9's may not feel quite so bad.  I'm NOT advocating being in 8's/9's very often but sometimes you need the flexibility so that you can feel confident that you can go out for a walk etc without the worry of a hypo. Tight control can cause it's own problems if you are running low during each night e.g. risking losing hypo awareness and feeling awful when not much above 8.  Mega apologies if I'm saying the wrong thing but are you able to set a basal level that will keep you around 6/7/8 overnight?  I know this is slightly higher than you would like but as well as good control yo u also need a good quality of life.
> Why does the consultant not think that neither a pump or Levemir will help?  That sounds like they are not being very helpful.



This is the crux of the issue AJ, I actually can't get that high at night/evening, I take a tiny amount of insulin (between 1:25 and 1:40) and can't get it to go that high, it just doesn't.  I got it to 10 once with some chocolate that I didn't bolus for and it still dropped (I think my pancreas "helps" overnight).  I could go that high on mixed insulin very very easily but the second I started MDI it got tricky.  i can make it go up through the day, with relative ease, just not at night.  I'm not sure why he's so against Levemir to be honest, but I know he think pumps are a lot of fuss and bother (probably not a great stance for a consultant ).  Don't worry about saying the wrong thing, I genuinely want everyone's opinion, i can be very controlled so I'm open to that, but I think that's what I find so frustrating, I'm on my lowest control setting!






Redkite said:


> KookyCat, my son's experience with Lantus was awful - he was on tiny amounts, but the smallest increment available was a whole unit (though I think there may be half unit pens around now?).  Nevertheless, he would crash a few hours after the Lantus was given, and then run out of basal entirely at about the 20 hour mark.
> 
> Are you against the idea of a pump?  With pumps, you can program a basal profile that is unique to you - as opposed to having to work around the action of a long-acting insulin.  A pump would solve many of the issues you have!  You could ask for a trial, perhaps?



I'm not against a pump, if I'm honest I'd rather do injections if it works because it's easier, but I just want some stability, so I'd blow insulin through a straw if I thought it'd work.  They are not pro pump though so I've got a second consultant coming from Manchester who are.  I seem to have a similar issue to your young gent, except I react to it more violently as the day progresses, it's almost like my body doesn't bother with it and then notices a puddle and uses it all at once.  Apparently my lack of body fat might be a factor.  Glad your young chap doesn't have to deal with it anymore though


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## Northerner (May 15, 2015)

The half unit pen is the Sanofi Juniorstar, and has been available for at least a year on prescription


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## Flower (May 15, 2015)

I really hope the second consultant gives you some good advice KookyC and is more open to change. You've had such a wrestling match with Lantus and there is every reason to want the best control you can possibly get. 

Lantus caused me serious havoc on many occasions and I was scared to inject it. If it isn't working or helping your control then why the heck don't they try another approach. It's not as if there aren't other options for you to try. Your consultant should be happy you are proactive and wanting to solve the issues you are having. I really hope something good comes out of your next appointment that can give you stability.


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## trophywench (May 15, 2015)

Lantus is a SOD for causing 'puddles' - it's well known for it!  (actually it ain't a puddle, it's a secret cache of crystals and I DO think lack of body fat is one of the exacerbating factors - if it has no body fat to disperse into, it will stay in a lump, you can picture the difference in injecting ink into cotton wool or teak)And when they decide to let go, well where did I put that tanker of Lucozade now?

I really really cannot see ANY reason why your man refuses to let you try Levemir.  Lev does not 'hang around' for anywhere NEAR as long as Lantus.  That's the beauty of the stuff.

The word I always use to describe it in comparison to Lantus, is that Levemir is just more 'biddable'.

Although all the caveats about not changing stuff again for a few days still apply - in truth - you can usually tell within 12 hours if the dose you took is working as you want it to, or not.  Such a relief.


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## Northerner (May 16, 2015)

If you haven't already read it, it's useful to know how lantus and levemir work, and how different they are:

http://www.diabeteshealth.com/blog/lantus-and-levemir-whats-the-difference/?section=200


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## KookyCat (May 16, 2015)

Thank you all, at least I feel confident again that I'm not the only person who struggles with Lantus.  I don't really understand what he's got against Levemir at this point, he offered it to me last year but then withdrew the offer when I said I wouldn't inject it at night, he also at the same time flatly ruled out a pump.  He seems to have had a it of a turn around now and decided that I'm not box of frogs and I really don't need background in my system at night.  Maybe he's got a cunning plan up his sleeve....or maybe he's related to tortoise and can only move at crunchingly slow speed   I think the main problem is they spent 12 months thinking I'm a type A over achiever striving for the lowest HBA1C, when actually I was striving for something akin to stability, so they minimised my concerns (in their heads not to my actual face).  We did have a chat last time, I told them I needed them to use their words more effectively, but I suspect they just wrote "obsessed" on my file and toddled off to lunch.

What I find really annoying is they don't actually refuse anything, so twice he's said he'd think about suitable options and leave a prescription and twice no prescription.  I'm wise to that one now though, and I'm taking a flask, some sandwiches and a picnic blanket with me to perform a sit in.


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## Bloden (May 16, 2015)

I like the idea of taking a picnic! What bugs me the most about these doctors is how they decide what type of person you are based on 2 or 3 emotionally-charged meetings a year. Apparently I'm riddled with anxiety and have an irrational fear of hypos - it's so insulting! I'd like to let them know what I think of them...but then I'd get some other 'type of personality' labels attached to my file - and not very nice ones!

Good luck with the appt, Kookycat.


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## Amigo (May 16, 2015)

I can't imagine the difficulties associated with trying to achieve effective balance for Type 1's....it all sounds incredibly technical and I'm in awe of the level of knowledge needed. However, recent serious illnesses have necessitated me becoming a 'career patient' with all the resultant frustrations of dealing with God-like medics. So I penned this and am highly tempted to make it into cards to present to any future medic I may encounter who views me as an impediment to an easy life!

'If you perplex me, test me or exceed my medical knowledge, then the only possible answer is you must be suffering from a psychosomatic illness and I'll take refuge in that belief a safe distance from your suffering.'

 Amigo


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## Northerner (May 16, 2015)

I like that Amigo!  

If there's one thing I can't stand it is medics who won't listen to you, as though you can't possibly know anything without having all their medical training. I sometimes remind them of the fact that I have experience of thousands of 'case studies' covering all aspects of diabetes, due to my time here on the forum. I have read extensively around the subject, keep right up to date with the latest news and advances, plus - and probably most importantly - I have 24/7/365 personal experience, which in the majority of cases I would imagine knocks their experience into a cocked hat! And just because I do not have medical training it does not mean I am unable to understand medical processes and concepts, unless they are sheathed in jargon and vocabulary used only by the 'elite' few.

Bit of a rant there, sorry!


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## stephknits (May 16, 2015)

I think what comes across here and time and time again is the differences we all have in our care.  I know it has been said before but it really is incredibly frustrating to hear Kooky's struggles in what could be a Really simple solution.  Ok it might not turn out to be simple, but they could just TRY other options, like levemir. If Lantus is known for causing problems if you don't have lots of body fat then why aren't there some sort of guidelines that say in this case, try Levemir, or something else?
At my place I only see the consultant every 9 months, but if I have a problem I ring the DSN team, who are really great and give me advice on basal adjusting, or whatever.  I know that if I was having the problems kooky was having they would invite me straight over to discuss it in detail, we would work out something to try, they would let the consultant know the plan, who would then advise accordingly.
It is so hard to get the balance right in their eyes between proactive helpful patient and obsessive.and really we are just individuals trying to get a decent solution.  
Let's hope the Manchester consultant is much more helpful.


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## Amigo (May 16, 2015)

Absolutely agree with you there Northerner! Doctors quite often know a little about a lot. When we have a deep personal investment in our own condition, it helps to know a lot because a safe passage through life depends on it! 

I have CLL which many medics rarely experience in their career and I'm quite sure some think is the acronym for a sofa shop!


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## pippaandben (May 16, 2015)

Reasons I demanded to go on Levemir was because it is designed to be a split dose ABD half unit pens are available for use with it. I was originally told no-one was to go on Levemir and everyone was being moved to Lantus and that they - the surgery had no say in the matter as it came from the PCT. When I asked to see the decision in writing it was not forthcoming after 3 weeks and surgery said they would try a single prescription and see if it was refused by PCT for payment (?). Needless to say I heard nothing further and have been on Levemir ever since with no queries. I use Novapen Echo for Levemir and Humapen Luxura pen for Humalog bolus both of which allow for half units.
You may need to say the costings are the same or minimally different - there is a link which I have now lost  which was given on this forum. 
Hope fighting your corner is successful - it really is ridiculous the hoops that some surgeries make you jump through. 
PS Just noticed on checking repeat prescription that BOTH pens are no longer listed!!!
Just how am I supposed to get the insulin (which is on repeat) into my system??
Of course I do have a spare of each as was recommended on here in my early injecting days but........


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## Northerner (May 16, 2015)

pippaandben said:


> ...
> PS Just noticed on checking repeat prescription that BOTH pens are no longer listed!!!
> Just how am I supposed to get the insulin (which is on repeat) into my system??
> Of course I do have a spare of each as was recommended on here in my early injecting days but........



I recently needed a new novopen echo so I just put a note on my repeat requesting one - I didn't encounter any opposition, so I would just do that should you need to (of course, surgeries have all got their own way of working though! )


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## Robin (May 16, 2015)

Northerner said:


> I recently needed a new novopen echo so I just put a note on my repeat requesting one - I didn't encounter any opposition, so I would just do that should you need to (of course, surgeries have all got their own way of working though! )


our surgery certainly has its own way of working. when I needed a replacement, they told me there wasn't a single unit pen, luckily our antipodean pharmacist at the local pharmacy, with a can-do attitude, told me that pharmacists are allowed to substitute items, so after beating his head against the GPs wall trying to get them to prescribe one, he just went ahead and got me an Echo anyway.


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## KookyCat (May 16, 2015)

Ooh don't even get me started on repeat prescriptions, it takes three attempts just to get them to send the prescription to the right pharmacy 

I'm struggling at the moment just to stay motivated to be honest.  I don't understand why it has to be so difficult and I think they're actually having a negative impact on my mental health.  I'm generally very focused and positive, I'm a can do sort of a gal, and don't cope well when I feel boxed in without the power to fix things.  Feeling a bit flat, and pointless, very unlike me.  Oh well tomorrow is another day


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## stephknits (May 16, 2015)

Totally understand where you are coming from Kooky.  I defy anyone to not feel down after investing all that you have in helping yourself to find that the people who's job it is to help you dismiss all your work and worse, they deceive you in saying they are going to perscribe things and then not doing it.    We need these people fighting our corner   Take good care, we are all rooting for you.


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## Bloden (May 17, 2015)

KookyCat said:


> I'm struggling at the moment just to stay motivated to be honest.  I don't understand why it has to be so difficult and I think they're actually having a negative impact on my mental health.  I'm generally very focused and positive, I'm a can do sort of a gal, and don't cope well when I feel boxed in without the power to fix things.  Feeling a bit flat, and pointless, very unlike me.  Oh well tomorrow is another day



Aw, chin up, Kooks. I'm sure you've got some treat up your sleeve to get yourself back on track. 

Also, you want to let them know how let down by them you feel - it's time for action.


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## Maryanne29 (May 17, 2015)

Interesting about not being pump friendly in Manchester KookyCat, because a pump could solve your problems. A friend of a friend lives in your area and wants a pump but his GP said it would be unsuitable given his job - he's an anaesthetist so works long and varied hours, which would suit a pump perfectly. He's doing a lot of research to prove his GP wrong! 
But if you can't get your doc to even change your insulin I'm not sure s/he is going to consider a pump.
Good luck though!


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## trophywench (May 17, 2015)

Maryanne - your friend should definitely contact INPUT.  That's what they do - advocacy for people who want pumps !!!!


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## Northerner (May 18, 2015)

KookyCat said:


> ... think the main problem is they spent 12 months thinking I'm a type A over achiever striving for the lowest HBA1C, when actually I was striving for something akin to stability, so they minimised my concerns (in their heads not to my actual face).  We did have a chat last time, I told them I needed them to use their words more effectively, but I suspect they just wrote "obsessed" on my file and toddled off to lunch....



I just read this article, and this made a lot of sense:



> A perfectionist doesn’t hope for the best version of a task given her best ever performance, to be delivered in unlimited time. A perfectionist works to produce the best possible version of a task given her best achievable performance, all inside the given time constraints.



http://www.theguardian.com/commenti...fectionists-not-procrastinators-or-obsessives

We're not obsessive, just trying to find a best fit with the things we have some control over, given the myriad other factors that can get in the way.


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## KookyCat (May 18, 2015)

Northerner said:


> I just read this article, and this made a lot of sense:
> 
> 
> 
> ...



Well that cheered me up!  My first manager in my first proper job was actually the first person to recognise that I don't want perfection, I want the most perfect I can have given the other factors I have to work with.  In diabetes terms that means I want the best control I can have within the framework of the six million things I can't control.  That's the bit they don't understand, if I have to compromise I will, but when there is an alternative solution that doesn't require compromise, incurs no risk or excess cost, why wouldn't you take that.  It goes so completely against my grain to not seek the best solution.  At least someone gets it


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