# Tresiba Review



## KookyCat (Jun 27, 2015)

Hi all

As most know I was using Lantus and having a proper pig of a time with it, no matter what I did with it I just couldn't get it to behave properly.  After lots of whinging I was finally given Tresiba to try.  I've been using it for a month now so I thought I'd do a bit of a review in case it's useful.

So my main Lantus problem was night time hypos, and resulting insomnia and the second joyful problem was it was not at all flat for me in terms of profile.  It was very very peaky.  Oddly the more I dialled the dose down the more peaky it became.  

I was worried about Tresiba because of the 40 hour duration business, that didn't seem like a great idea because of my nighttime issues but that claim is actually very misleading.  There is a complex calculation to use if you want extended duration which I don't yet understand.  Essentially it is broken down much more uniformly so you could take a bigger dose and extend the period of action.  I have to say I haven't tried that though 

So is it stable?  Yes incredibly stable, I haven't had an unexpected drop in blood sugar during the day since taking it, nor have I had an unexpected high.

Nighttime hypo reduction?  Yes, I've had a couple of events but both were rapid related and because I bolused after 7pm (I get more sensitive at night so the sting in the tail of the rapid gets me).

Unpleasant injection site reactions?  None at all, no stinging, bruising or red welts and no bleeding.  I had some form of issue every time I used Lantus, although interestingly it stopped stinging when I got below 15 units of Lantus.

Other interesting differences include the complete elimination of the strange episodes of nausea and feeling slightly faint (that nobody could find a cause for), a slight return of the painful neuropathy I got when I switched to Lantus (ear and jaw) no idea why!  The intensely dry skin issues I had (fingers were splitting) have gone, and I am no longer frozen the entire time.  On that last point I realise it's warmer this time of year but last year I was wearing jumpers in August, now I'd contemplate a tshirt . The problem with peeling lips has also disappeared, could be coincidence but it went about a week after the switch.

Dose wise I'm on 6 units of Tresiba and it works well, I was on 10/11 of Lantus and was up and down like a yoyo.  The pen is also be very easy to use with a lovely single click.  Would be much easier for those on larger doses, but is also handy (pardon the impending pun) for those of us with nerve damaged hands.  All in all its a massive relief to have stability and know that I wasn't going insane, the Lantus really was the main problem.  Tresiba hasn't solved all my issues, I'm still super sensitive at night but at least I only have to focus on one problem at night rather than two.  

In conclusion Tresiba gets the thumbs up from me


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## Lindarose (Jun 27, 2015)

Hi Kooky I can't pretend to understand a lot of your post but the main thing is that the Tresiba is making an improvement for you which is really good news. You've certainly had your work cut out using Lantus and I'm so glad the change is helping you cope better. Long may it continue


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## KookyCat (Jun 28, 2015)

Lindarose said:


> Hi Kooky I can't pretend to understand a lot of your post but the main thing is that the Tresiba is making an improvement for you which is really good news. You've certainly had your work cut out using Lantus and I'm so glad the change is helping you cope better. Long may it continue



Thanks Lindarose


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## Mrs Mad Ronin (Jun 28, 2015)

With me not taking insulin your post didn't make sense to me lol but i got the main thing which was it's an improvement and that is why i am posting. That is fantastic to hear  

*happy dance* - well it deserves it


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## Robin (Jun 28, 2015)

Kooky, I'm really pleased the Tresiba is working for you. I think a lot of doctors swallow the publicity when something new is introduced, ( unless it costs a lot!) and Lantus at the time was hyped up as the best thing since sliced bread. it seems to work for me, but I think doctors fall into the trap of seeing that it's successful in some of their patients, and blaming the patient in the cases where it doesn't work. Well done for persevering and getting them to see sense!


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## Flutterby (Jul 1, 2015)

Hi Kooky, glad to hear that the Tresiba is working for you.  It has been sucessful for me in eliminating (almost) night time hypos and I get much better results before breakfast.  Still a bit rocky throughout the day but probably rapid related as my bolus needs seem to change like the weather.


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## KookyCat (Jul 1, 2015)

I've had some rocky daytime figures too but I think that's the stability, with Lantus for me I had to change ratios up and down to accommodate it's odd behaviour, the stability of this one takes some getting used to.  I'm still a bit skittish about using my "real ratios" because I expect hilarious random results, taking me a while to get used to being less cautious with rapid.  In fact I didn't realise what a nightmare it was before, I knew it was bad but seriously it was ridiculous 

Thanks everyone for your nice words, it is rather lovely to be able to eat food without fear that the basal will join forces with the rapid and plot my downfall.  I even managed hummus which for some reason was impossible before


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## newbs (Jul 1, 2015)

I'm really pleased Tresiba is working well for you - I give it the thumbs up too.  

I've been on it a few months and my control is a lot better than it was, with a definite reduction in hypos, and I need only 13 units in comparison with 19 Levemir.  I previously tried Lantus but my control was even worse on that. I still have problems, like you, but things are definitely heading in the right direction. 

Long may this good control for us all continue!


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## KookyCat (Sep 29, 2015)

Well I thought I'd add to this some months on just in case someone in the future is offered Tresiba and like me wants to find out details but can't find them.

Do I still like Tresiba, most definitely yes, although I admit it might have a Stockholm syndrome edge to it because Lantus was so impossible for me. In fact for the sake of full disclosure I didn't know just how impossible Lantus was until I stopped taking it.  Tresiba is the calming adult figure in my life, whereas Lantus was the naughty petulant toddler.  

So in the 4 months I've been taking it some things have changed, no hypo drenches at night still stands, in fact I can go to bed on a 5 point something quite comfortably which is good because I struggle 95% of the time to get it above that level.  That's good given that that was the most pressing problem.  The big change is not so much a change as proof of concept.  I've "known" for a good while that I have an odd profile when it comes to background insulin.  I need very little overnight and in the morning but there's a huge hike in requirements between 11am and 3pm.  The lack of predictability with Lantus was making it tricky to establish and prove, but with Tresiba it's patently obvious.  If I take 7 units I lose control at bang on 11am, I compensate with extra bolus insulin at lunch but will most likely go hypo at 3:30pm because my background requirements have started to fall.  If I take 8 units I'll circle a hypo at around 10am but just retain control over the 11am to 3pm period, then go towards hypo territory before dinner.  That doesn't sound great I admit, but the important thing is the stability of it actually allows me to choose which option and play with the rapid to get the results I can cope with.  No more Hobson's choice.

I don't feel cold all the time, Tresiba doses need to go up in summer for me (Lantus had to go down), I don't react to the injections at all skin wise (Lantus caused local reactions from the start, nothing startling but still obvious), and Tresiba stays more stable during exercise.

Weirdly Tresiba was marketed quite firmly as good for those who need large doses of insulin, but I've talked to two consultants about it and they both say it seems to have more advantages for the insulin sensitive amongst us.  I was slightly freaked out by it at first, because of the hype around duration, but I didn't understand how freakishly stubbornly stable it really is.  I've challenged it and it's held its nerve incredibly well.  I'll stop rambling now!  Except to say don't be afraid to ask for a different insulin, I didn't expect such a marked difference in quality of life, for the NICE folk there would be little evidence of benefit, a reported lack of night time hypos, very little change in my HBA1c to show (mine was low and that's the way I like it), but you can't measure everything with numbers, quality of life is just as important, and mine is certainly better.


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## Redkite (Sep 29, 2015)

Really interesting stuff Kooky, and I'm so glad this is making life easier for you.  I can completely identify with your experiences of Lantus - my son was on it between the ages of 5 and 7 - it hurt a lot when injected, and he'd have to go to bed on 16+mmol to prevent a hypo by the early hours, yet by the afternoon he would have a total lack of basal and any energetic activity would send his BGs sky high.  It was a complete nightmare!  For him, a pump was the answer, with basal tailored by the hour to his needs.  Glad that Tresiba is working so well for you


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## KookyCat (Sep 29, 2015)

Thanks Redkite.  Ironically the switch to Tresiba has actually convinced me a pump would be much better for me than I initially thought.  No chance of getting one here, so for the moment Tresiba is fine but we'll see!


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## everydayupsanddowns (Sep 29, 2015)

Thanks for sharing your experience with Tresiba Kooky, really interesting to see how you have been getting on with it.


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## DerryUK (Sep 30, 2015)

I was referred to my local hospital clinic by my GP when I was having night time hypos. I had tried Lantus and Levimere with no effect on the hypos. The only way I could guarantee not to have one was to go to bed with a BS of over 10.

I was put on 12 units of Tresiba about 9 months ago. This gradually increased until I got to 22 and I have since reduced it to 20. I can't remember when I last had a night time hypo. I now go to bed with BS of between 8 - 10. That level gradually falls during the night with the low point (BS around 5) at 3 AM. My BS then start increasing again until I have a morning Novorapid.

My meter average BS is 9 -10 and my HBa1c is 50. I did complain to the clinic doctor about my averages and he said carry on with what you are doing and maintain your HBa1c.

Derry.


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## driis01 (Jun 29, 2016)

Hi KookyCat,

I'm new to taking insulin - I just took my 1st Tresiba dose 2 days ago.  I take 8 units at bedtime.  Is that a lot or a little compared to what you know?   I've been a type 2 diabetic for almost 20 years and for me, having to take insulin is a very big emotional hurdle to accept.  I basically cried all day Monday when the doctor told me.  I know - I'm being an emotionally baby about it but I've always had a fear of insulin.  

I've been searching for reviews on Tresiba and found yours.  It sounds like you're pleased with the results and that gives me hope.  Did you experience any weight gain?  When my endocrinologist told me that was a possible side effect, I was so bummed out (and more tears).   I had previously taken Invakomet and that actually helped me drop about 6 pounds but the side effects of Invakomet were too much and my doctor changed my meds.  I was put on Bydureon for 5 weeks but instead of getting better blood sugar control and dropping a few more pounds, my blood sugar went up, gained weight and all I got for my efforts were these lumps under my skin where I injected.  Totally sucks!!  

I will say that the needle for the Tresiba is a lot better than the needle that's used for Bydureon.  You would think after almost 20 years of pricking my finger I wouldn't mind needles but I do.  

I was pleased that this morning when I got, after taking only my second dose, my blood sugar was 144!!!!!  I haven't see 144 in the morning in a very long time - usually it's between 180-220.  

If you did gain weight using Tresiba, if you don't mind me asking, how much?  It just seems like a vicious cycle - the more you weigh, the harder it is to maintain bs control but if the insulin you take to control your bs is going to make you gain weight- what's the point?  

I am curious to know if it's possible to get off of insulin once you've started or does your body get used to having insulin and won't let you quit?  I used to be pretty active - running marathons and half marathons, but when my father fell ill last year, it was too much to train anymore so I haven't exercised in almost a year!  I plan on getting back to the gym and running again with my running club -in the lovely Houston heat and humidity.  

Any insights you have will be appreciated.  Thanks for your time.


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## trophywench (Jun 29, 2016)

Kooky is a T1, driis - so it's not possible for a single one of us to come off insulin without dying LOL

However - it has been known for some T2s to do so.

Why not start another thread ?  or, is there not a US T2 forum that could help you and will obviously also be used to  BG readings being 18x more than ours! - the difference is so huge that even though I know that, I always do a double take when I read them.


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## KookyCat (Jun 29, 2016)

Hi driis01
Sorry to hear you're struggling a bit with the transition to insulin, I know it must feel like a big step, and I think everyone finds it hard.  I'd say 8 units is quite a small dose, I take 51/2 units a day and generally people with insulin resistance require more, some folk with type 2 will take much much bigger doses.  I haven't really gained weight, well a couple of kilos but I was actively trying to put weight on so I wouldn't worry too much.  Insulin itself doesn't make you gain weight exactly it's a bit more complex.  If your body couldn't use the glucose in your blood effectively pre insulin then you could have been maintaining your weight but still taking in too many calories.  So let's say your body could only process 75% of what you were eating before, the insulin is kind of like the key that lets your body use the other 25%.  If you were maintaining before then you might put on weight because your body has become more efficient and it's using the full range of calories you're taking in.  In which case you may need to reduce your intake a bit to rectify it.  So if you keep an eye on it you should be OK.  There is another potential issue around large amounts of circulating insulin which can be an issue for those with type 2 but it's a bit of a contentious area.  People with T2 tend to produce insulin but can't use it, so putting extra insulin in can stimulate the body to store fat (some believe), so there's a potential chicken egg situation around weight and type 2, but I don't know a great deal about that theory I'm afraid.

The good thing is the blood sugar is responding (I'm sorry I don't really understand the figures we have a different measurement system here) I know it feels like a frightening step into the unknown but insulin might actually be the best thing that's ever happened if it brings the blood sugar under control and you start to feel a bit more human again.  I've found Tresiba to be much better for me than Lantus, much more stable and generally easier to control.  I think there are some other T2 members on here who've managed to come off insulin and some who've managed to get off medication altogether but I think that largely depends on individual biology, perhaps one of them might come along and offer some insight.

I hope you start to feel better about it soon, and the Tresiba works for you.  It might be worth starting a thread in the general messages too, so more people will see it and respond, my experience of Tresiba may be a little different and I wouldn't want you to miss out on advice from our knowledgeable T2 folk who might offer a better insight than I can


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## driis01 (Jun 29, 2016)

Thanks so much KookyCat.  I've been searching the internet to find someone who actually had experience w/ using Tresiba and your post was the first one I found.  All of the rest have been reviews from the pharmaceutical company.   Reading your review was helpful b/c it gives insight from your experience and not a drug company.

That's an interesting point about how insulin can make the body produce extra fat. I was unaware of that and that's what I'm trying to understand is how insulin affects the body.   It's all a big chemistry experiment I guess.   Obviously I have a lot more research to do and I'm just beginning my search.  Thanks for the quick reply!

Take care,


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## KookyCat (Jun 30, 2016)

Glad it was helpful.  You could look at Dr Bernstein's stuff in relation to the insulin/fat storage issue, it's easy to read and might be helpful.  As I said its a bit of a contentious area but interesting stuff.  The essential premise is that carbohydrate rather than fat in foods will stimulate fat deposits, and insulin of course is the key to using glucose (which carbohydrate is).  His thoughts on insulin resistance are interesting too.  Let us know how you go on


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## TheClockworkDodo (Nov 10, 2016)

Thanks for this thread, @KookyCat - I've been looking for more info. on Tresiba and it's very interesting 

The huge hike in your insulin requirements between 11-3 is interesting too - I'm still having highs mid morning every day, no matter what I try, and then plummeting and often hypo-ing by lunchtime (which for me is often around 2 or 3pm).  I'm hoping the Tresiba will give me a bit more stability hypo-wise so I can increase my breakfast bolus to deal with the highs.


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## TheClockworkDodo (Dec 24, 2016)

Well, I have now been on Tresiba for just over a month.
I no longer have red blotches all over my legs from the Lantus - yay! (the negative side of that is that it's a lot harder to rotate my injection sites now I can no longer see exactly where I injected for the last fortnight or so  )
I am still hypo-ing for England, but I'm having more hypos over 3 and fewer under 2!  They are also more predictable - I can see a pattern to them, which I never could with Lantus.  And that means I can adjust doses of both basal and bolus to get things more stable, which I am gradually trying to do.
I no longer seem to rocket into the mid-teens mid morning.
Other than that I haven't had any noticeable changes - no change to my thermostatic instability, or weight, or anything else that I can tell.

The other good thing is that, having managed to get a nice new blue Novopen Echo on prescription for my Tresiba, I was able to point out to the surgery that the instructions said that 
a) I should have a spare and 
b) I had been using a clunky old half unit pen for my Novorapid for 6 years and should probably have replaced it by now
- so they prescribed me a nice new red Novopen Echo for my Novorapid (I'm keeping the old pen as a spare)


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## mikeyB (Dec 25, 2016)

This is all interesting. I made the switch from Lantus to Levemir on the advice of the consultant to whom I was referred for a pump, the main problem being pesky nighttime hypos which I couldn't stop no matter what I did with bloody Lantus. These have virtually disappeared on split dose Levemir, but all this has shown is that I need wildly different basal levels through the day. The end result of this is that I will be getting a pump come April. 

If this sounds similar to Kooky's story, it is, almost identical. When the consultant saw my Libre record, he said there and then I scored all the points needed for a pump. So I'm getting one. And so should Kooky.


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## KookyCat (Dec 25, 2016)

I'm glad you've decided to go for the pump, I read your post about it earlier in the week and keep trying to respond in a way that makes sense but it's hard to articulate a response.  I think you're doing the right thing btw.  The consultant patently didn't believe me until the three CGM results came through, then he had to admit I might be right, only might you understand .  He was still muttering about trying other basal options at that point but he seems to have given in now.  I realise it must be tricky for them, I really do, I mean I don't understand my weird reaction to insulin either, but I know it's not my bolusing skills, or my basal dose because I test everything to death.  Yesterday I managed to go hypo from a substantial mince pie despite under bolusing, I know it's because it was cold and I was running around trying to exchange a faulty gift I bought and because i'm currently doing 7 units of basal so I can keep the 11:30am to 3:30pm slot under the wire (6 wouldn't quite cut it, 6.5 is perfect but I'm trying to use up a stock of disposable pens they kept prescribing instead of cartridges) and I bolused at 11:20 just the exact wrong time.  Seriously though who wouldn't think I was box of frogs when I wheel that explanation out 

I've been told now I qualify for the pump but there's no funding in my area.  That said they got in bother from the CQC for failing to meet the target level of pump users so that seems to be changing slowly.  They didn't have a single adult pump user (not one) and no pump specialist at all in adult services.  I met one lady who had one as a kid and then they took it off her when she transitioned to adult services, I couldn't believe it but I ive heard since it might be a common tactic.

Rambling aside best of luck with the pump, it makes sense it will help with that weird profile but let me know how it goes, I'll be watching with interest . 

Juliet, I'm glad you're finding the Tresiba useful, let's hope we all have more luck with the insulin in 2017   Ooh and MERRY CHRISTMAS


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## TheClockworkDodo (Dec 25, 2016)

Good luck with the pump, Mike, and I hope you manage to get one too in the end, Kooky - it helps that you are a fighter.  I am wondering about one too, now that Steph has told me that you can get one which sticks the cannula in itself, so I wouldn't have to see it.



KookyCat said:


> Yesterday I managed to go hypo from a substantial mince pie despite under bolusing ...



That sounds familiar - I had an extra half unit today for the large slice of chocolate brownie I had with my lunch and I still managed to hypo.  I couldn't exactly have bolused any less, could I?! 



KookyCat said:


> Juliet, I'm glad you're finding the Tresiba useful, let's hope we all have more luck with the insulin in 2017   Ooh and MERRY CHRISTMAS



Merry Christmas to you too!


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## mikeyB (Dec 25, 2016)

Thanks girls. It bugs me no end that getting a pump when your basal needs go up and down like a whores drawers, and you are crying out for a pump to cover that, it's a bloody postcode lottery whether you get one, not a medical imperative. Why should I get one and not Kooky? It is so unfair.

Which underfunded area of Lancashire is refusing your pump, Kooky?


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## trophywench (Dec 26, 2016)

What scares  you about approx. 8mm of Teflon tubing Dodo?

Or - is it the introducer needle that put the wind up you?  LOL - I fully expect it's the latter.

The cannula inserter for the Insight pump doesn't show you the needle either.  You insert the hard plastic cover of the new cannula into the 'bonker' (it makes a 'bonk' noise when you 'fire' it LOL) and remove the waxed paper protective layer from the stick pad of the cannula.  Still no needle in sight.  Then holding the inserter away from you, you load the latter by sort of pulling the middle towards your body, which pulls a spring back.  This actually does now expose the needle but you have absolutely no need to look, in fact mustn't since if you haven't pulled the spring back quite enough, it can go off accidentally and shoot the cannula and thus that needle wherever you happened to be pointing it, and when this happens (I've done it twice in 18 months, luckily no-one was in the way) it travels surprisingly quick!

So you then place the business end of the inserter firmly against wherever you've chosen as a site. and press the trigger button.  This shoots the cannula needle into you.  Lift the inserter off your skin and there's the cannula covered by a plastic cover except the edges all round the oval sticky pad.  Hold the sticky down (smooth it onto the skin) then lift the plastic cover vertically upward off you.

The needle comes  out of the tubing as you do this and folds back into the cover as you lift.  If you look at the bottom of the cover now you can see the needle folded horizontally within the cover.  But - you don't actually have to look - so don't! - just chuck the cover straight in the sharps bin!

The tubing to the pump attaches to the cannula with a plastic fitting.

Like the needle cover gadget you use with pens - you still HAVE to have a needle with any pump - but as far as I know only the Omnipod and the Insight make it so you don't HAVE to see it if you don't want to.

For all I know there may be others too - but I also know very well that some don't.  Even for the Insight - if you need angled cannulas - you can't use the inserter.  Only right angled ones fit them.


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## TheClockworkDodo (Dec 27, 2016)

Thanks for all the info., Jenny   It's not fear so much as the knowledge that if I see a needle going in I'm probably going to pass out and possibly to vomit so it's just not something I can do.  A few times diabetes nurses have looked at my bgl results and said to me "have you thought about going on a pump?" and I've said "well, I'd like to, but I wouldn't be able to insert the cannula because of my needle phobia", and not once has any of them ever said "oh, that's alright, you can get one which inserts itself, you just press a button"  

But I had this exact conversation with Steph on this thread a couple of months ago and I'm planning to discuss it with my DSN next time I see her!

There is of course also the issue of whether or not I will be allergic to teflon (quite possible) or indeed to the sticky pad (highly likely), but I'll cross those bridges when I come to them ...


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## mikeyB (Dec 28, 2016)

Juliet, have you investigated the Clickfine Autoprotect pen needles I suggested? They fit nearly every pen, and you never see the needle before, during, or after the injection. They are prescribable in Scotland, so should be in England. Discuss those with your DSN, because they could solve your problems at a stroke, without the need to find out if you're allergic to pump kit.


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## TheClockworkDodo (Dec 28, 2016)

Mike, I've had covered needles from diagnosis, I would never have been able to cope otherwise.  The ones I have are Novofine autocover - I'm really sorry, but (probably because of my cognitive dysfunction) I don't remember you suggesting different ones, or why they might be better?  Are they shorter?  The only issue with the Novofine ones is that they are 8mm, but I can live with that.

Because of having the Novofine covered needles, I've never actually had any problems injecting myself - all my problems with my diabetes have been to do with my level of insulin sensitivity, huge numbers of hypos, and the way (because of my ME) that things like temperature have a much bigger effect on my bgl than the things I eat - none of these at all helped by my adverse reaction to Lantus! - pretty much identical to Kooky's problems, in fact.  So really the only things which would solve these are being able to change my doses by much tinier amounts of insulin at a time - tenth units rather than half units.  But unlike Kooky I've been asked if I wanted a pump, it's just that I said it wouldn't be suitable for me because I thought I'd have to be able to insert the cannula manually.


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## mikeyB (Dec 29, 2016)

Ah, I see Juliet. I was preaching to the converted! But now TW has explained how you can insert the cannula using an inserted without seeing a needle, you can perhaps give a pump a try. There is, of course, the possibility that you may react to the sticky, but you won't know till you try a sample before committing. I shouldn't worry about teflon, it's completely inert.


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## TheClockworkDodo (Dec 31, 2016)

Thanks, Mike - I'm planning to talk to my diabetes nurse about it when I see her in April, though I might email her before that.  I'm still adjusting to the Tresiba though and also planning to get a Libre in the new year, so I'm trying to do one thing at a time!  Useful to know that about Teflon - I react to a lot of plastics, but I suspect it's likely to be the petrochemical-based ones which are the problem.


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