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Feeling down as I don't feel my control is a priority for my diabetes team

I

isjoberg

Well-Known Member
Messages
268
Type of diabetes
Type 1
Hi all,

I've been T1 since I was 1.5 years old, and although I had fantastic control as a kid (thanks parents), it's just been a rollercoaster since my teens. I am now 21 and working six days a week with changing hours. I'm currently on levemir and novorapid (after being on lantus and novorapid for over 10 years and no new insulins ever considered until I got a new doctor) and I just feel quite frustrated. I am self-funding a freestyle libre which has given me a far better overview of my control (and how quickly it can get off track) which has been immensely useful, but I am really getting tired of trying to stay within the blue lines with up to ten injections a day, lots of alarms set to make sure that I can give my long acting in the mornings after working till 3am and prevent my bs from sky rocketing before I wake up.

I don't have great control, for the past few years my hb1ac has fluctuated slightly between 8.1 and 7.6 but has not been below 7.4 in ages. I am trying to adopt a difference approach to diet and also doing exercise at home to see how this helps. The main thing I was told by my GP was to always ask for a pump when I go to the clinic, but as my control is OK and I haven't ever been hospitalised for diabetes, I feel like I am just being ignored as I am not a priority for anyone on my diabetes team. I struggled to get an appointment within 12 months of my last one - not aided by the fact that I work away from home for long periods of time and don't want to change diabetes team every time I travel for work (I've been home for 10 days in the past 5 months and have been in 7 cities in that time..).

This is mainly a rant about how it's just a bit rubbish, I don't know if anyone else has had experiences like this. I'm travelling from Glasgow on my one day off to attend my appointment in London and it all just feels a bit hopeless.
 
Diabetes is a nightmare to manage so you're not alone in the way you are feeling, @isjoberg.

Would you use a pump if given the option?

I, like you - have reasonable control. Albeit my numbers are even lower than yours, so less likely to approved for pump therapy. I also inject around 10x per day and combined with DP, I am in the very early stages of pump referral. The suggestion was made by the specialist Dr at my clinic, I never even bothered asking as I never thought in a million years that I would be considered.

The Scottish government have recently promised increased funding to our section of the health service for insulin pumps. Every region in Scotland is under-acheiving in their targets for pump users - so the uptake needs to increase... This should mean "easier" access for people like you and I with reasonable control.

I'm not sure of your position, do you live and work in Glasgow but visit a clinic in London?
 
As long as it's a priority for you, does it really matter?

Take control of your destiny..;)
 
I'm in Glasgow for 8 weeks for work - normally am in a new place every 2/3 weeks due to the nature of my job. Devastating to pay £150 for train tickets to make sure I make my appointment on time!
 
What hospital do you attend.....

I would try and get your BG readings all written down on paper so you can identify the problem areas and then show them to your team, together with anything you have tried to combat the problems....

you sound a bit like me in terms of control although mine has become easier since going on the pump.....

the problem I had was dawn phenomenon, and it was for this reason, together with a full history of written readings and all sorts of tactics employed, that I was put forward for one....
 
Hey @isjoberg Try not to feel hopeless, I know easier said than done, but things can improve.

Just because you have not been hospitalised over your type 1 does not limit your access to a pump. Your type 1 is affecting your quality of life, they can see you are trying already, I think you would be a perfect candidate.

My one tip for you is to get your basal changed to Tresiba, it's a long acting, very stable basal, one injection a day and helps keep you on a level playing field, then it's just down to fine tuning your bolus injections, but as you're working so much and managing so many injections it's one less thing to worry about - please ask about getting switched over.

There is hope, try and stay positive ;)
 
Juicyj said:
Hey @isjoberg Try not to feel hopeless, I know easier said than done, but things can improve.

Just because you have not been hospitalised over your type 1 does not limit your access to a pump. Your type 1 is affecting your quality of life, they can see you are trying already, I think you would be a perfect candidate.

My one tip for you is to get your basal changed to Tresiba, it's a long acting, very stable basal, one injection a day and helps keep you on a level playing field, then it's just down to fine tuning your bolus injections, but as you're working so much and managing so many injections it's one less thing to worry about - please ask about getting switched over.

There is hope, try and stay positive ;)
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Tresiba is something I wish to try, however it's not available in Scotland. Good advice @Juicyj. Good basal is the foundation of solid BG management.
 
GrantGam1337 said:
Tresiba is something I wish to try, however it's not available in Scotland. Good advice @Juicyj. Good basal is the foundation of solid BG management.
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Thanks Grant - I only mentioned this as the apt was in London and wasn't sure if they could prescribe it there. Worth a shot ;)
 
Juicyj said:
Thanks Grant - I only mentioned this as the apt was in London and wasn't sure if they could prescribe it there. Worth a shot ;)
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Yeah it's a good recommendation as I've only heard positive things about that basal insulin:)
 
Juicyj said:
Thanks Grant - I only mentioned this as the apt was in London and wasn't sure if they could prescribe it there. Worth a shot ;)
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Yes, based in London normally.. I was offered Tresiba when I switched to Levemir but the only issue was that I was at university in York at the time (never in one place for long!) and my consultant wasn't sure about the availability and mentioned it could be an issue.. As I spend so much time hassling pharmacies anyway I went for the more widespread one, but will ask for Tresiba at my appointment (now that I will be touching base at home hopefully every month or so). I was impressed when someone posted their overnight graph from their libre where it was flat at 4.2!!
 
I was on Tresiba before the pump and if you're struggling then I definitely recommend it, it suited me much better than levemir or lantus, also one injection a day and it doesn't matter if you miss an injection (obviously taking it though when you can) as it lasts somewhere around 36 hours.
 
@GrantGam1337 Tresiba was hard to get in England due to the cost but my CCG changed their policy this summer after the price dropped. I still had to argue for it even then! It might be worth checking again on scotland point policy
 
Why dont you have a chat to Input re pump and see if they canmt help you out? it sounds to me like a pump would be a much beter fir for you?
@isjoberg
 
I don't know if it helps, but after I went on a carb counting course they said I'd be eligible for a pump should I want one... Perhaps worth a try?
 
Just my 2 or 3 pennies worth:

Push for a pump at your next clinic. As you sound as if you're doing some sort of shift work, doing 10 injections a day, show that you are engaged with your T1D you're an idea candidate for a pump looking at NICE guidelines. Also I would assume having a varied work 'schedule' (put it that way), your basal requirements probably change a bit too hence the micro management and lots of injections - why would tresiba be any better for you?
 
I think a lot of it will be down to who my doctor is when I get to my appointment! I see four doctors on rotation (they're all part of the same team) and only one has ever considered other options (the one who offered levemir or tresiba) so fingers crossed it is him! I think I will get in touch with input and see what they can help me out with.

@MelissaClayton only problem with carb counting courses is it seems to require a week off work! Unless I can get one over Christmas (unlikely), the next time my schedule will allow for one will be in May 2017. It's always a bit awkward I find being diabetic for this long as doctors seem to assume you know everything (who does?!) and are well read on new diabetes stuff. This forum has been fantastic for teaching me about so many new things and also giving me far more specific questions to ask my doctor!

Thank you everyone!! I am looking forward to my appointment as it has been a long time since I've seen a doctor and I'm curious to see what my hb1ac will be.
 
isjoberg said:
I am now 21 and working six days a week with changing hours. I'm currently on levemir and novorapid (after being on lantus and novorapid for over 10 years and no new insulins ever considered until I got a new doctor) and I just feel quite frustrated.
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I've been on a pump for the last 20 months, looking back to when I worked 6/7 days a week with various shift patterns I can now see how a insulin pump would have been so useful in helping to control my diabetes.

So do push for a pump @isjoberg , if you don't fit the NICE criteria you certainly fit the ABCD recommendations as your present insulin regime (injecting 10 times a day) is effecting your quality of life. Good luck.
 
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