Trouble

[OscarT1]

Ordered my prescription (17th December) with an app called Echo.

I was using Pharmacy2U and they were good but I thought I’d try a new app I was curious bad mistake I guess...

They had my prescription delayed sinc Ethan due to being “out of stock”.

I contacted them (this week 13th January) as it had been so long.. and I explained that I needed my prescription and considering that it’s super important I get it.

They cancelled my order and just gave me the NHS order bar code and that was the end of that.


Since it had been so long Libre sensor has expired now since it’s been so long since I ordered...

I’ve given my order to a local pharmacy and they said they’d order it in and it’ll take a few days.

Confused why this Echo app (linked to Greenlight Pharmacy in London) has taken so long to order my prescription in?


Has anyone got to a point where your blood sugars have got so high that you’ve drank so much and craved sugary drinks.

Ended up spending like £10 on drinks today.
Drankx3 lucozades (750 ml) and 2x (500 ml) lucozades (the Raspberry flavours). Has anyone else ended up craving drinks like these when BG is high?

I’ve taken insulin but I have no idea what my BG but still craving more.

Really need my Libre sensors to test but I think it’ll be a few more days. :/

please no judgement on this thread, I know I’m a bad diabetic.

 

[Kaylz]

You should have test strips to test your BG and I suggest you do it as a matter of urgency, I'm not judging in anyway but you don't know what your BG is and you could be starting to produce ketones in which case depending on level you'll need to correct with insulin or head to the hospital as you could be at risk of DKA

Also there are big problems with places getting supply of the Libre sensors and people are having to wait 2-3 weeks for sensors at the moment all across the UK on prescription so you cant just rely on them being available in the near future

 

[Robin]

No judgement (I don’t want to sound like your mum!) but you need to find out what your blood glucose number is asap.So, practical advice coming up!
A lot of pharmacies will do a spot glucose test, so google where your nearest one that’s open for the weekend is (there’s always an emergency one open somewhere at weekends in every area) or a walk in centre if there's one near you, so go and ask, then you’re armed with the knowledge and can get some insulin into your system.
Then first thing Monday, get on to your Gp surgery and ask for an emergency prescription of test strips either for your Libre sensor, which will act as a glucose meter as well as a reader, or for whatever meter you had before you went on to the libre.
Then long term, make sure you’ve got a system in place for having a meter and test strips available in case there’s a delay with your Libre again (the system seems notorious for delays, so don’t rely on it)

 

[Thebearcametoo]

Even when using the Libre you should be finger pricking to check it’s accuracy
Do you have a meter and strips still?

I think sometimes when your body is struggling you crave easy calories. Unfortunately for diabetics you need to liquid and not the sugar. If you’re high enough to be noticeably drinking more then you need to know your glucose level. If you don’t have a meter you should be able to get checked at a pharmacy or your out of hours doctor. It’s ok to go to A&E too. Being hyper can be dangerous and you need to know what your levels are.

the prescription mess up is terrible. I’m so sorry you’ve been let down so badly.

 

[Jodee]

mmmmm no idea about libre but hasn't lucozade for a long time been sugar free or reduced sugar content !!

https://diabetestimes.co.uk/hypo-warning-over-lucozade-sugar-reduction/

 

[trophywench]

Yes but it isn't by any means sugar free Jodee.

Normally in T1 if we crave sugar (which is what Oscar is asking about) it's a sure sign there isn't anywhere near enough insulin circulating in the body.

 

[rebrascora]

It also sounds like he is thirsty which also indicates he is very high and the Lucozade will only be making that worse.

@OscarT1
I second the advice to seek medical help if you have no means of checking your BG levels yourself now that the Libre sensor has expired and ensure that you obtain a back up system asap.

 

[OscarT1]

Hi
Thanks for your replies
I just woke up, with a really bad headache and super thirsty, in the night I did do an injection but not really sure what my BG was.

I was super hungry so I did just have a bowl of pasta and some soup tho.

I just feel extremely heavy all over, so I’ll probably just spend the rest of the day in bed..

 

[Sally71]

Headache and super thirsty = high blood sugar
If you don't know how high you are how do you know how much to inject?
Pasta = carbs which will just send you straight back up again! Do you carb count or do you just inject fixed doses?
I'm with the others, please please get yourself somewhere where you can get blood tested if you don't have a kit at home, and then as soon as possible make sure you get a kit from somewhere! Yes it's bad that they chemist has let you down, but for that reason you should always have back ups - spare test kits in case the Libre fails or there are supply problems, always order new prescriptions of everything when you have at least a week or so's worth left in stock, spare pens in case you break the one you are using etc etc.

 

[everydayupsanddowns]

Welcome to the forum @OscarT1

I’m sorry to hear about the problems you have been having getting hold of Libre. This is a known problem at the moment, and is affecting many pharmacy supply chains, with a big backlog of orders building up.

Do you have alternative fingerstick BG monitoring methods in place - your GP should also be prescribing you strips for a BG meter (partly so that you can check if Libre readings don’t match how you are feeling).

Drankx3 lucozades (750 ml) and 2x (500 ml) lucozades (the Raspberry flavours). Has anyone else ended up craving drinks like these when BG is high?

I’ve taken insulin but I have no idea what my BG but still craving more

Hunger can be a symptom of high BG, because the body knows that it is not able to access the energy from the food. Unfortunately if your BG is high already you are craving the very worst things and Lucozade will only be pushing your BG higher.

As others have said, there is a real risk that your BG could be running out of control, and you could begin to produce ketones and risk DKA.

It’s important to get help urgently if this is the case. If you begin to have abdominal pain, vomiting or shortness of breath go immediately to A&E

In the meantime, keep taking your insulin, and try to get hold of some way of monitoring your BG as soon as possible next week.

 

[OscarT1]

Someone said that pasta would push my BG higher, it’s true it would but at the same time, I feel like I’m craving carbs like I’m craving lucozade, and it feels good to drink and eat them, I don’t know why?

I’ve been sleeping all day and I feel like I’ve just wasted the day away :/

My GP won’t prescribe the “Freestyle test trips” because “they’re too expensive so I don’t know what to do?

 

[Sally71]

You are craving carbs because the ones you are eating are not getting to where they are needed, because you don't have enough insulin in your body. Once you have enough insulin inside then the craving will go away. You sound like you need some help with your diabetes, do you see a hospital team or just your gp? If you have a hospital team then please arrange to see them as soon as possible to ask about carb counting and how to adjust your insulin doses to manage your diabetes effectively. If you only have your gp then go and see him.

If your gp won't prescribe Freestyle test strips because they are too expensive then ask him for a test meter and strips which he is prepared to prescribe, there are many different ones available and they all do the same job. You are type 1, he must provide you with some way of testing your blood!

 

[Thebearcametoo]

You are type 1 you need reliable and regular testing (at least 4 times a day). Your lethargy suggests to me that you are in danger of becoming seriously ill. Please call the out of hours GP tonight or go to your local A&E so you can find out what your glucose and ketone levels are.

 

[Wirrallass]

@OscarT1 Sorry to learn of your struggles. Our local Asda tests blood for Diabetes and gives readings of our bgs. I think any well known chains will test your blood for you ~ and probably give you advice accordingly. Good luck.
WL

 

[Bruce Stephens]

I agree with everyone else: you need a blood glucose meter and test strips in addition to the Freestyle Libre sensors. I'm surprised your healthcare team has let you end up without that, so apparently without any way of testing your blood glucose. You should make sure they sort it out on Monday morning.

 

[everydayupsanddowns]

Under the national guidance T1s are to be prescribed a BG meter 'that suits their needs' - so you should have full choice of the available options - and as many strips as they need to manage their diabetes effectively.

From what you have said today, you do NOT have a meter or strips to allow you to do that. If you stick with the Freestyle meter you could use the in-built bolus calculator from BG strip readings, which you might find very useful.

But it really does sound like you need more support (and equipment!) to help you manage your T1. It saves no cost AT ALL if you end up having to go to hospital because you lack the basic equipment and haven't been given the support and know-how to manage the situation you are currently in. We re here to support you, but it does feel like you are being a bit let down by your healthcare team - or maybe they just don't realise how difficult you are finding things.

I think it would help you a great deal to get referred to your nearest hospital clinic for more specialist support. This can help get relictant GP practices to prescribe appropriate diabetes stuff too, because it's not just you asking it's your consultant or DSN who have reviewed your case and decided what you need.