Need help

[Nicola23]

Hello
I have had had type 1 for 17 years and come to a point on my life where I’m really struggling with my blood sugars and control. I’ve always been a good diabetic but Over the past five years having 2 children under 5 (husband also works away all week) and working full time my control is terrible. With current climate I’ve not had a hbac1 in a year and I know it’s going to be high. I am a teacher and i struggle to do readings at work in day (I test about 5 times a day). I’ve asked for a flash monitor and been told no because I don’t test enough and I feel like I’ve given up all hope. I’ve never liked the idea of a pump as probably I’m still in secret denial about having the condition wanting to be as normal as possible. I am healthy and I exercise a lot I just eat on the run a lot and eat too many biscuits to get me through the week. I hope joining these forums I can get some help from everyone. I’m reaching out because I’ve hit rock bottom with my control. Help!!

 

[Amity Island]

Hello
I have had had type 1 for 17 years and come to a point on my life where I’m really struggling with my blood sugars and control. I’ve always been a good diabetic but Over the past five years having 2 children under 5 (husband also works away all week) and working full time my control is terrible. With current climate I’ve not had a hbac1 in a year and I know it’s going to be high. I am a teacher and i struggle to do readings at work in day (I test about 5 times a day). I’ve asked for a flash monitor and been told no because I don’t test enough and I feel like I’ve given up all hope. I’ve never liked the idea of a pump as probably I’m still in secret denial about having the condition wanting to be as normal as possible. I am healthy and I exercise a lot I just eat on the run a lot and eat too many biscuits to get me through the week. I hope joining these forums I can get some help from everyone. I’m reaching out because I’ve hit rock bottom with my control. Help!!

Hi Nicola,
It sounds like you're doing an incredible job, mother, teacher, wife and type 1. It sounds like your life would be easier with a freestyle libre. Usually, if you test 8 times a day, they will consider you for a free NHS trial which is usually extended, provided there is some improvement. It can also be bought at some pharmacies, the reader can be purchased online from Abbott and the sensors for around £40 each and last for 2 weeks.

 

[hdee]

You do sound amazing. I’ve just be semi-diagnosed. I’m not on any insulin yet but I think covid has pushed me into type 1.
Be positive think of your children and their long term future. You can do this

 

[Bruce Stephens]

I am a teacher and i struggle to do readings at work in day (I test about 5 times a day). I’ve asked for a flash monitor and been told no because I don’t test enough and I feel like I’ve given up all hope.

Might be worth hassling them a bit more, making sure they understand the difficulties you're having in testing at work.

 

[Nicola23]

Thank you for your help already. Do you know if you self fund the libre and that makes improvement whether the nhs would fund it after that?
I think you are right about hassling I feel like I wasn’t really understood how much it could help my control. I’ll find the time for a hassling email!!
thank you

 

[Robin]

Thank you for your help already. Do you know if you self fund the libre and that makes improvement whether the nhs would fund it after that?
I think you are right about hassling I feel like I wasn’t really understood how much it could help my control. I’ll find the time for a hassling email!!
thank you

The test for getting a Libre prescribed after you’ve been self funding is, 'Would you have qualified for one when you first started using it' ie, fulfilled one of the criteria such as needing to test 8 times a day, or having poor hypo awareness. We have one member, @grainger , who was turned down, even though she’d seen a good improvement in her Hba1c, because she wouldn’t have qualified to start with.
See here

Any ideas?

Hey all Hope you are all good. I’m after some advice... So about 18 months ago I didn’t qualify for a libre so 14 months ago I decided to self fund. I love it and my hba1c has improved, quality of life etc all better and works brilliantly with the exercise I do etc... Anyway, I’m trying to get...

forum.diabetes.org.uk

 

[Bruce Stephens]

I’ll find the time for a hassling email!!

If you possibly can, showing how your situation fits in with the NHS criteria will probably help. Specifically, it looks like you'd fit with number 4 (in Annexe A) of https://www.england.nhs.uk/publicat...ts-for-funding-of-relevant-diabetes-patients/

You'd need to ask whether you self funding might help. My reading of the criteria suggests it probably wouldn't (that was really to cover people who were self funding before the criteria came into effect), but your team might regard it as significant, and ultimately it's probably up to them. (Likely the criteria aren't really critical: they were to help get the proportion over 20% in each CCG and I think we're mostly there by now.)

 

[trophywench]

Thank you for your help already. Do you know if you self fund the libre and that makes improvement whether the nhs would fund it after that?
I think you are right about hassling I feel like I wasn’t really understood how much it could help my control. I’ll find the time for a hassling email!!
thank you

Yes it absolutely would!!

 

[trophywench]

The other thing you could do is literally grit your teeth and test more.

 

[Bruce Stephens]

The other thing you could do is literally grit your teeth and test more.

Is just testing enough? I thought it was necessary for the testing to be "clinically justified" or something? Though maybe it's turned in to just a hurdle to jump over now.

 

[trophywench]

I could fairly clinically justify testing my blood quite a few more times a day than 5 Bruce. Couldn't you? I know damn well I guesstimate the carb content of lots of my meals and therefore the bolus dose for them is also a guesstimate. Best to test several times after any such meal to check on whether that bolus was spot on or not, wouldn't you say?

There again if you drive anywhere, you simply never want to test half an hour before then suddenly go hypo soon after you start off, do you? Must ensure you NEVER risk that, wouldn't you say?

 

[Bruce Stephens]

I could fairly clinically justify testing my blood quite a few more times a day than 5 Bruce. Couldn't you? I know damn well I guesstimate the carb content of lots of my meals and therefore the bolus dose for them is also a guesstimate. Best to test several times after any such meal to check on whether that bolus was spot on or not, wouldn't you say?

There again if you drive anywhere, you simply never want to test half an hour before then suddenly go hypo soon after you start off, do you? Must ensure you NEVER risk that, wouldn't you say?

Yes, all those are reasonable. My point was just that the wording of the criteria suggests there might be cases where someone would do 8 tests a day, and that wouldn't be accepted because your doctor said that seemed too many. (It's something that's happened to people in the context of getting test strips, for one thing.)

 

[trophywench]

Ah well ' see, Alan Shanley is 100% correct, isn't he? Test, review, adjust.

No point in testing BG in the first place whatsoever - unless you always review that and then adjust whatever needs adjusting!!

 

[SB2015]

Thank you for your help already. Do you know if you self fund the libre and that makes improvement whether the nhs would fund it after that?
I think you are right about hassling I feel like I wasn’t really understood how much it could help my control. I’ll find the time for a hassling email!!
thank you

I self funded and they looked at the improvement from when I started it to when I asked for NHS funding, and as my HbA1c had dropped by 10 they were happy to prescribe. The criteria have changed since then, and eight tests a day is enough to qualify. Not difficult with meals, bedtime, driving, ... well worth a few extra tests, and at school I was testing loads but it was just after diagnosis.

I think it would be easy to argue a case for it. You are responsible for a class of students and the Libre would really help you to know you are at a safe level. Mind you I used to find my students would spot a hypo before me on occasions!

 

[Paulbreen]

Hello
I have had had type 1 for 17 years and come to a point on my life where I’m really struggling with my blood sugars and control. I’ve always been a good diabetic but Over the past five years having 2 children under 5 (husband also works away all week) and working full time my control is terrible. With current climate I’ve not had a hbac1 in a year and I know it’s going to be high. I am a teacher and i struggle to do readings at work in day (I test about 5 times a day). I’ve asked for a flash monitor and been told no because I don’t test enough and I feel like I’ve given up all hope. I’ve never liked the idea of a pump as probably I’m still in secret denial about having the condition wanting to be as normal as possible. I am healthy and I exercise a lot I just eat on the run a lot and eat too many biscuits to get me through the week. I hope joining these forums I can get some help from everyone. I’m reaching out because I’ve hit rock bottom with my control. Help!!

Nicola, I was the same as you, in complete denial for 15 years then this year I swallowed my pride and went for the CGM and pump, I have the Medtronic 670G and it has changed my life, I have forgot how the hyperglycaemia feels it’s that long since since I was high and hypo‘s which were happening at least 2 times a day in my battle to keep my bloods in reasonable condition. Now I have a swing from 5.5 - 6 when I’m fasting and I’ll spike at 10 at the most and I just changed my insulin from novarapid to Fiasp to try and improve that as well. I have a demanding job as a field engineer and I’m the laziest S¥*t with paying attention to my blood so if I can do it so can anyone. The 670G system has it’s issues but it’s 60% there as an artificial pancreas and I’m getting the latest 780G system in a few weeks which I’m told takes the next step and can automatically bolus on its own... my advise is go get a CGM & pump, it will change your world

 

[Nicola23]

Thank you everyone for you advice it’s really helpful. I am talking to the doctor on Tuesday so hopefully I can use what you have told me to aid my argument if not like you have all mentioned I need to test more. Thanks Paul for your advice It’s good to here someone who was like me and now things are better. My lack of control is definitely affecting my mental health as well so the maybe I do need to look at the pump. To be honest I cannot believe I haven’t joined one of these forums before your support has already helped I appreciate all the points above...thank you!

 

[Paulbreen]

Anytime, I hope it all works out for you

 

[everydayupsanddowns]

Welcome to the forum @Nicola23

So pleased you have joined the forum, and I really hope we can support you through the coming weeks and months.

It sounds like you are doing an amazing job, juggling so many competing requirements. and erratic BGs are very challenging to live with and can directly affect mood and emotions.

Have you ever done a course in diabetes management like DAFNE or a local equivalent that can help you juggle the many many factors that can impact on BG levels?

Extra data from something like Libre can really help, as can having the ‘hive mind’ of the forum to bounce ideas off... but having a bit of a skills and strategies refresher can be really helpful too.

DAFNE and BERTIE are both available as e-learning courses that you can do in your own time at home if this appeals to you?

 

[Annemarie]

@Nicola23 you certainly have a challenging time I really feel for you. My husband worked away for weeks at a time, I only had 1 young child, my teaching was part time but even then I felt like a manic hamster in a wheel on overdrive. Adding the increased demands you have and diabetes to deal with, I think you deserve a medal and hopefully you’ll get one in the form of a monitor. My diabetes was erratic, I had to test at least 8 times a day and my fingers were oh so sore from testing making some activities difficult so I self funded my Libre for 4 months. I found it extremely effective, I gained confidence and awareness - and it helped my fingers to heal! I had the data to prove it was effective so the diabetic nurse put me forward for consideration and since then I get them courtesy of the NHS. I hope you find the same. Good luck!