Diabetes tech

[Jamiejaiden3310]

Any help appreciated please..

 

[porl69]

There are always hoops to jump through with tech! In the Libre example you need to be testing at least 9 times a day! If you are only testing 4 times then you will not qualify. You should be testing before food and after food to see what effect your insulin is having on the food you are eating anyway.
My advice....start testing more

 

[Juicyj]

Hi Jamie

Welcome to the forum.

It's a difficult dilemma to be in - my best advice if you want to win over the DSN's and Consultants is to be the best t1 you can be, when they can see that you are already working at this to get the best results then they will support you, using any form of technology is pointless unless you can make it work for you otherwise you are driving a formula 1 car in first gear and not getting the full potential so the cost of funding for a libre is pointless unless you know how to achieve the best results from it, which is why they are reluctant to fund it, and unfortunately using any technology is not a magic wand to good control either, it's down to you to master it and know what you want to achieve from it.

In regards to your current situation, have you done the Dose Adjustment for Normal Eating course yet ? if not get your DSN to sign you up to the next available course, having done DAFNE is a pre-requisite to become considered for a pump. Get knowledgable and read up, a great read for type 1's is 'Think like a pancreas' written by a type 1.

It's vital you start to test more regularly, testing tells us many things, it's tracking our control, telling us if our bolus ratio worked, if we need to correct. By taking ownership of your control means your team can see you are working hard at this and will support you more. Also a query - why are you taking insulin after meals ? quick acting insulin should always be taken before you eat, some pre-bolus by up to 20 mins to avoid the spike.

I self fund the Dexcom G6, I don't get funding for the libre, I do have the pump but had to push for this for over a year to get access, it was on the basis I was testing regularly had done DAFNE and was still struggling, they could see I was working incredibly hard already and was refused also but didn't give in, since using the pump i've dropped my HbA1c and dropped it even further with the G6 but because I am aggressive with correcting highs and managing my bolus and basal ratios very carefully too, I do put in alot of work each day to keep control still now though, it's not a walk in the park but it's easier because i've gained the knowledge to be the expert at this.

 

[porl69]

Thanks @Juicyj that's exactly how I wanted to put it

 

[tim2000s]

Hi @Jamiejaiden3310, roughly 12% of the adult UK T1 population is using a pump, so it's not really all that widespread as an insulin delivery device. It's just that you tend to see those people on Social Media.

Likewise, Libre (up until last year) and CGM is, in the most part, privately funded by individuals. Until April, accessing Libre on the NHS is fairly tricky, and most CGMs simply don't get funded. Again, Social Media gives a slightly skewed impression as to what the population really uses as by far the majority are still using fingersticks.

 

[Jamiejaiden3310]

Hi @Jamiejaiden3310, roughly 12% of the adult UK T1 population is using a pump, so it's not really all that widespread as an insulin delivery device. It's just that you tend to see those people on Social Media.

Likewise, Libre (up until last year) and CGM is, in the most part, privately funded by individuals. Until April, accessing Libre on the NHS is fairly tricky, and most CGMs simply don't get funded. Again, Social Media gives a slightly skewed impression as to what the population really uses as by far the majority are still using fingersticks.

Hi Tim.. only 12% wow..I wouldn't of thought that

 

[Jamiejaiden3310]

Hi juicy..

Thank you..

I'm going to try my best..you couldn't of put that any better tbh..I know it's not a magic wand just getting to the point of desperation as my readings are so dramatically up and down..

I've done what we call a KAREN course which I think is actually the DAFNE just with a different name..it helped a little..I will try the 'think like pancreas' read..where do I access that if you dont mind me asking?

I take fast acting after meals because I'm simply scared of hypos tbh but like you said it should be taken before so obviously need to change that..

I've got a lot of work to do I know this I'm not asking to be handed these techs with no knowledge and on the NHS.. im just asking for advice really as any advice helps..

Thanks for replies

 

[Jamiejaiden3310]

There are always hoops to jump through with tech! In the Libre example you need to be testing at least 9 times a day! If you are only testing 4 times then you will not qualify. You should be testing before food and after food to see what effect your insulin is having on the food you are eating anyway.
My advice....start testing more

Thanks..I struggle to test before and after food as I dont have set meals per day which is maybe why I'm losing weight rapid..although my white blood cell count is very high and has been for over a year so being tested for underlying conditions e.g coeliac disease..chron's disease..thyroids etc..

 

[porl69]

Thanks..I struggle to test before and after food as I dont have set meals per day which is maybe why I'm losing weight rapid..although my white blood cell count is very high and has been for over a year so being tested for underlying conditions e.g coeliac disease..chron's disease..thyroids etc..

Sorry I was so blunt in my answer....BUT you need to be testing 9 times a day to qualify! I am luckily getting the Libre on prescription but I had to be testing 8 - 10 times a day with proof ie the meter readings. It was difficult to do but I wanted the Libre so for a month/month and a half I did as they wanted. I still finger prick a fair amount of times a day as well (to bolus for food) and to sort my readings for my pump.

 

[Jamiejaiden3310]

It's ok I need blunt.. my mum always says gp's and consultants aren't blunt enough with me..and I agree..I've tested twice so far this morning which is a massive improvement for me..as my son has autism all my attention is on him most of the time but starting to realise he won't have me if I dont concentrate on my health..so enough is enough...I've also downloaded one drop app to input my glucose readings, meals and input what insulin I'm taking to correct..

 

[porl69]

It's ok I need blunt.. my mum always says gp's and consultants aren't blunt enough with me..and I agree..I've tested twice so far this morning which is a massive improvement for me..as my son has autism all my attention is on him most of the time but starting to realise he won't have me if I dont concentrate on my health..so enough is enough...I've also downloaded one drop app to input my glucose readings, meals and input what insulin I'm taking to correct..

Winner
Of course your efforts are going to be 100% on your son, but as you said you need to think about yourself as well. Small steps forward are the way to go

 

[Jamiejaiden3310]

Winner
Of course your efforts are going to be 100% on your son, but as you said you need to think about yourself as well. Small steps forward are the way to go

Definitely..thank you for your advice..its much appreciated

 

[LooperCat]

I’m a bit late to the party, such are the joys of my current job! I’m lucky enough to have both Libre and a pump after twenty years of doing it the old fashioned way. I got the Libre because my HbA1c was quite high at 94, and I had to drop it by 27 points after a three month trial. I halved it, and now have it long term. The better control highlighted horrendous dawn phenomenon and monthly insulin resistance, necessitating up to 18 injections a day - which is how I got my pump a few months ago. I’m in South Wales, if that’s of any help.

 

[Jamiejaiden3310]

I’m a bit late to the party, such are the joys of my current job! I’m lucky enough to have both Libre and a pump after twenty years of doing it the old fashioned way. I got the Libre because my HbA1c was quite high at 94, and I had to drop it by 27 points after a three month trial. I halved it, and now have it long term. The better control highlighted horrendous dawn phenomenon and monthly insulin resistance, necessitating up to 18 injections a day - which is how I got my pump a few months ago. I’m in South Wales, if that’s of any help.

Wow 20 years that's really long..you deserve to have the tech..good on you..are you all sorted now then?are your sugars constantly better?
And thank you any advice is appreciated

 

[Deleted Account]

After 12 years, I was offered a pump.
The reasons for me are slightly different to most - I am very active and found exercise often led to hypos despite regular testing. The variable/temporary basal has enabled em to continue (and improve) exercise whilst reducing the number of hypos.
However, the pump is hard work. I find I have to be more accurate with my carb counting than when injecting and the wonders of variable basal mean there is more to work out and more that can go wrong.
For this reason, the pump is only offered to people in my area who match criteria for a need to improve their diabetes control AND shown a willingness and ability to put in the effort to do this.

In addition to the pump, I am an occasional self-funded Libre user. This is very useful but NOT as a replacement to finger pricks. I would say anyone wanting the Libre (or a CGM) because they don't test is wasting the tech. The value of the Libre is being able to see the trends. In fact, I don't find it accurate enough for bolusing but combined with finger pricks, my control is better: I can check my BG from my fingers and then work out whether my BG is going up or down and calculate my insulin dose appropriately.

I guess what I am saying is that diabetes tech is great. However, it does not make your life easier. It means you have more data, more control to improve your diabetes. If you do not have time or brain capacity to work with this, I would suggest now is not the time to adopt the tech but it is the time to maximise the tools you have available to you.

As other have said, your son is probably taking up most of your energy at the moment. But don't forget about yourself (and your diabetes). If you can give yourself a little time with your diabetes, you will have more energy to spend with your son.

 

[LooperCat]

Wow 20 years that's really long..you deserve to have the tech..good on you..are you all sorted now then?are your sugars constantly better?
And thank you any advice is appreciated

I think I’m as sorted as a type one can be - my last HbA1c was 37 and I have very few hypos. There’s a lot of numbers to crunch, and I have to count every carb to dose accurately, but I’m really happy with it all.

 

[Jessitalia]

Hi @Juicyj, I’m afraid I have to disagree having been told “a pump wouldn’t improve your [good] numbers much” ‍ I’d been on the same regime for over 12 years (T1 for 27) . I asked for a pump multiple times, including crying once! But nothing. It was frustrating. I left the country and it’s better in Italy

 

[Juicyj]

Hi @Jessitalia - i’m not saying a pump wouldn’t improve your control I think you’ve missed my point, it’s down to how you utilise the tools you’ve got and sadly the nhs fail to support t1’s who aren’t testing regularly, hence why the best advice is to take control prove your willing to put the effort in and you will be supported. I can’t comment on each individual CCG but this is from experience.

 

[Jessitalia]

Hi @Jessitalia - i’m not saying a pump wouldn’t improve your control I think you’ve missed my point, it’s down to how you utilise the tools you’ve got and sadly the nhs fail to support t1’s who aren’t testing regularly, hence why the best advice is to take control prove your willing to put the effort in and you will be supported. I can’t comment on each individual CCG but this is from experience.

Sorry I was misunderstood: the DOCTORS said a pump wouldn’t improve my control, for years. I did everything they told me, so had good control, but the result of that was I wasn’t allowed a pump or libre. Where I was, you had to show that you couldn’t control your diabetes, which leads to some tough choices.

My Italian doctor has seen my libre results, after 2 weeks, and booked me in for a discussion about pumps. I get angry and sad thinking I’ve damaged my body, through no fault of my own, because my U.K. doctors refused to acknowledge my requests and my HbA1c was always acceptable/ good. My doctor here was actually impressed with my HbA1c, but having seen the hourly reality he thinks a pump is best!

An utter relief to be finally heard.