An Update

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TheClockworkDodo

TheClockworkDodo

Well-Known Member
Relationship to Diabetes
Type 1
Hello! 🙂

I've not been around for a while, had a week's holiday in Cheddar at the end of September, and then R had another week off work so we could do stuff like gardening, and since then I've been catching up with things.

Got back from holiday to find a letter from local hospital inviting me to take part in group trial of Libre - they were giving participants a free Libre and a sensor and the chance to get together and discuss it with each other & with Abbott rep. Wish I could have taken part but just not well enough, so had to decline - on the plus side I had a friendly email back from one of the DSNs I haven't met, and she is investigating whether the Abbott rep will visit my surgery and give me a Libre there. Unlikely, but I'll give it a couple of weeks before buying my own - I had only just emailed Abbott before I went away to ask whether I could return it if I bought one and turned out to be allergic to it and I can.

The DSN has also now put me on the waiting list to borrow their CGM (which I was supposed to be on already!) so hopefully that should happen sometime in the next year or six ... 🙄

My hypo awareness is still interestingly varied, and the other week I had 14 hypos, so feeling a bit drained after that. I have dropped my Lantus dose again, and raised my Novorapid. I'm sure the Lantus is the problem.

I have broken my new Lantus half-unit pen 😡 Very cheap plasticy thing - I'd only changed the cartridge twice and the screw mechanism won't turn any more. I've had the Novorapid one for nearly seven years now and never had a problem with it. Haven't tried to get a new Lantus one because I'm hoping very much that I will finally get Tresiba instead after my appointment with diabetes consultant next week (any tips on getting diabetes consultant who's never met me to agree to prescribing me a more expensive insulin very welcome! Other than - I might die if I keep reacting to Lantus this way - which he might feel is too melodramatic 😉 ).

So what have I missed here over the last month or so?
 
Hi Juliet, good to hear from you again 🙂 Sorry to hear about all the hypos, it does sound like lantus is not working very well for you (not uncommon, it seems). I hope you can get the Tresiba soon and that it brings better control 🙂 In the scheme of things the price differential is negligible - if you like you can tell the consultant I stopped using basal (lantus) 4 years ago, so they can subtract that expense from the sums and buy you the Tresiba 😉 🙂
 
Nice to hear from you, I was worried our Dodo had become extinct (boom boom 😉). Lantus got me that way towards the end, I was literally having a hypo every six hours, it was exhausting. I suggest data, and lots of it, my problem was the lantus peaking every six hours and then not doing much inbetween so I'd shoot down about 6mmol/l in 30 minutes and I felt every minute of it. So I took readings from a day when I ate absolutely nothing to show that the pattern was still the same, and adjusted the time I took basal over a week (starting at 5:30am and moving it to 6:30, 7:30) and graphed where the hypos struck, it was impossible not to see that pattern when it was right there. He relented very grumpily, then told me it's relatively common for Lantus to become unstable at lower doses. I could cheerfully have eaten him alive at that point 😡. I'm still a bit angry with him over that and it was 15 months ago, mainly because I wonder if I hadn't been able or comfortable fighting would he ever have got round to that startling realisation? Anyway I'm rambling, hope you had a good holibob and enjoyed the gardening week, sounds lovely 🙂 and fingers crossed you get that libre trial it might be useful!
 
Hiya, Juliet.🙂 Great to have you back! Good luck with the Tresiba.😛
 
Welcome back Juliet. Glad you had a nice holiday but sorry to hear about your hypo. X
 
Welcome back Juliet. I know what you mean about the Lantus pen, it feels really flimsy, considering it's intending for children, I'm surprised they think it's robust enough!
 
Good to see you back Juliet 🙂
Good lock with getting things sorted.
 
Good to see you back! Hope you had a good holiday 🙂 good luck with the libre trial. I know recently many members on here have loved it!
 
Thanks everyone, nice to feel welcome back 🙂

Kooky, my hypos are completely random - my own diabetes nurse has looked all through my diary and agrees they are random, there just doesn't seem to be a pattern anywhere. But like you, if I don't eat carbs and don't inject Novorapid, I still hypo - when I tried doing that 5:2 thing to keep R company I had to give up because I had double hypos during the night afterwards.

Trouble is the consultants tend to look at the most recent page of my diary and say "oh, you've had a few hypos at lunchtime, drop your morning Novorapid 2 units" and I have to point out that a) if I drop it more than half a unit my mid-morning readings will be 18 and b) if he turns the page back he'll see that as well as the ones at lunchtime I've also had a few hypos at dinner time and a few at bedtime, and one or two first thing in the morning, and the odd one mid-afternoon, and that I've tried lowering the Novorapid doses and it makes no difference except to raise my readings 2 hours after meals ... 🙄

I think I will print out the email from my diabetes nurse where she basically says "you've tried everything else, I agree you should try Tresiba now" and take that with me, along with my last 2 diaries so he can see all my experiments, and maybe direct him to this forum too!
 
Had my annual appointment with consultant today and <drum roll> ... I am going to be able to change to Tresiba, and also get the Glucagon injection kit I asked for
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It was actually the same locum I saw last year, so not quite as bad as seeing a total stranger, which is what I was expecting. I'd typed out all the info. about my hypos and everything I've tried and why I want Tresiba instead of Lantus, in case I wasn't coherent enough to explain, and I managed to get him to read it all through (it was quite long 🙄). He did put up a bit of a fight (lots of other suggestions, to all of which I was able to say "I've tried that, it didn't work") but in the end he said that Tresiba does have a better reputation so far as hypos are concerned and he'd write to my surgery and ask them to add it to my prescription. He warned me it might not be the solution (well, I knew that, I just want to try) and that there may be other issues with it (obviously) but I'll deal with those when/if they happen - at the moment I am just so pleased I will be able to ditch the Lantus!

I think that may be the first time I've come out of a diabetes clinic feeling that I've browbeaten a consultant rather than having been browbeaten by one though ... would be so nice if consultants would work with me instead, the way the nurses do, and no-one had to browbeat anyone, but this one shows promise, so I hope he stays! Would be nice to have some stability too, rather than having a different one every time.
 
I'm so glad your appt went well Juliet and you are at least able to give the Tresiba a chance. Hoping it helps you as much as you're hoping. Good luck and let us know how things go 🙂
 
Yay
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