First couple of weeks - Type 1

[Martin55]

Afternoon everyone 🙂

I've been part of the Type 1 club officially for 2 weeks! I was wondering about other people's experiences on a couple of things

1) Carb counting - I got told not to think about this yet as I've only recently been diagnosed, so have been advised to take 3 units of Novorapid with each meal. Is this something I should be pushing the diabetes team to give me more freedom over? As it seems odd that I can prepare a meal which has say 30% more carbs than the previous day yet I'm taking the same insulin so naturally my blood sugar goes higher than id want it to be and I'm aware that its about to happen.

2) Technology - have any Type 1s had any luck getting flash glucose monitors on the NHS? I was informed there is a big pile of criteria that I would need to meet so not to think about that for at least 12 months, but I would definitely find it extremely valuable to know blood sugars at more than just 4 points in time during the day for sure to better control them and see the impact of food and exercise on my body.

Thanks, hope you are all having a good day!

 

[Bruce Stephens]

2) Technology - have any Type 1s had any luck getting flash glucose monitors on the NHS?

Yes! Most recent figures I've seen suggest it's being prescribed to 37% of all people with Type 1. (Rates vary by CCG but I think all are now over the 20% minimum target.)

 

[SB2015]

Welcome to the forum @Martin55

It will help us to tailor our answers if you are happy to tell us how your diagnosis came about, and what your HbA1c was at that point. I see that your quick acting insulin is Novarapid. Can you tell us what your background one is.

To address your specific questions

Carb counting.
For the first few weeks I was told to take a fixed dose of insulin for basal (background) and Bolus (quick acting mealtime Insulin) . This is often because if you had high levels at the start they will want to bring your levels down slowly to avoid damage from rapid changes. Like you I found this weird and once my levels were below 10. On fixed doses we tried to keep to the same amount of carbs at meals. The DSN was then happy to work with me on making adjustments, using a starting insulin to carb ratio which we then adjusted. One thing I would push for right from the start is a half unit pen. In the early stages you are likely to be in quite low doses, and being able to round off to a half unit will help a lot with both insulins, especially ince you are carb counting.

Tech
The Libre should be available for people with T1, and the criteria are now nationally set, and there is a much shorter list now, which are easy to meet. They are useful for fine tuning your doses and timing of injections.
They may suggest you wait as at present your pancreas will probably have some beta cells left. These will get a bit of a rest now that you are injecting so they might start to play again without any warning. This is know as the Honeymoon Period.

I hope that helps and do come back with any questions. It is a lot to take on board at the start but there is plenty of experience on here to draw on. No questions are considered silly on here. just ask

 

[Boom]

Hi @Martin55 .
It can be frustrating to be diagnosed T1 and wanting all the information and knowledge ASAP.
I’m 30+ yrs in and believe me I’m still caught out by what T1 can throw into the mix.
As a lot of fellow T1’s will tell you “it’s a marathon, not a sprint “ I’d actually take it a step further....” it’s for life, not this year” . Okay as we get older we know more but we still learn new things in life. T1 is no different. Try to imagine your diabetes like a new born child, it will grow , change, evolve and become as individual as you.
Take these little steps now and you’ll reap the benefits with time and patience.
The reason your being given such limited advice so far is because you’re still most likely in the honeymoon period. Your pancreas isn’t quite defunct and with the new treatment you’re now getting your pancreas is going to be given a bit of a holiday for the next few months. Things are most likely to become rather erratic before settling down. They’ll be days when your insulin requirements will vary hugely not because of the carbs you eat but because your pancreas is able to supply a bit more or a bit less insulin as and when required.
In my opinion you can’t conquer T1 but you can train it to respect you. It just takes time without having an intermittently working pancreas.
Don’t rush this.....it’s what T1 wants you to do. It’s a very crafty, cunning and sly condition that will and can impact on every aspect of your life and not just blood sugar.

 

[rebrascora]

Hi and welcome

Some newly diagnosed diabetics in my area have got Libre straight away on prescription (some maybe just for a trial period) and some newly diagnosed members here on the forum have been given them, but many don't and have been trying to get them for a long time, so it is a bit of a postcode lottery. In some respects it would seem fair to dish them out to people who have been finger bodging and waiting for a Libre the longest and in other respects you can see how helpful it must be for monitoring and getting correct doses sorted for Newbies, especially in the current climate when there is less face to face access for support.
It took me 18 months from diagnosis to get one on prescription but I self funded for several months prior to that.

As regards carb counting, it took 6 months before I got a proper course (DAFNE) which covered so much more than just carb counting, but I also had a very short session with a diabetes dietician before that which was minimal help with carb counting but I did get to share that session with another Type 1 which was probably more beneficial. That was maybe a month after starting on insulin but I think I was adjusting bolus insulin doses well before that, mostly because I was following a low carb way of eating and not eating regular meals, so I needed to be more flexible.

 

[Inka]

1) Yes - push for carb counting or teach yourself (it’s not hard). It really annoys me that they think it’s somehow ‘easier’ to withhold this vital info. It’s not - and withholding it is something they’ve only started doing in recent years. They’re wrong.

2) Flash GM depends on the area, despite the national guidelines. My area has done everything it can to make it impossible for anyone else to get. They funded it according to the criteria to start with, then got annoyed too many people were benefitting from it.

However, you don’t need to just test 4 times a day. You can test as often as you want/need. I test numerous times a day as needed.

 

[Flower]

Hi @Martin55

This information covers the main points of carb counting
https://www.diabetes.org.uk/guide-t...ts-of-carb-counting/learn-about-carb-counting

and here

The nuts and bolts of carb counting

When you live with type 1 diabetes, carb counting is a great way of managing your blood sugar or glucose levels. It can give you more freedom and flexibility in what you eat when you're preparing meals at home, grabbing food on the go or eating out. Carb counting does take some time and effort...

www.diabetes.org.uk

As said above do ask for a carb counting education course when you are able to whilst meanwhile teaching yourself. As you've rapidly discovered injecting a set amount of insulin gets you through the initial period after diagnosis but there is a much better way out there to give flexibility and improve control.

At present Abbotts are offering one Libre 2 sensor to try out if you meet the conditions of the offer and have never used Libre before. I took them up on the offer and it is a fabulous piece of tech, you do need a compatible phone as unless you purchase a starter pack you don't have a reader - details here https://sample.freestyle.abbott/gb-en/freestylelibre.html

 

[trophywench]

Dear some members of this forum,

Glad some of you are convinced Martin's ability to produce endogenous insulin is now dead as a doornail. He may well be able to run before he's learned to walk - personally I don't know that so would prefer he took things a bit more slowly, the same as his medical team do.

Yours - an old fart who tries not to be too boring

 

[Deleted member 25429]

For me some of the most important lessons I’ve learnt . For me I don’t go for a walk within 45mins of injecting as I then go hypo . Inject nova rapid then test regularly to see how long it takes to kick in . Don’t have a hot bath for half an hour after a walk results in a hypo with me . Everyday really is a school day certainly keeps you on your toes . This is just me we are all different. Good luck

 

[helli]

@Freddie1966 if you want to go for a walk within 45 minutes of injecting, I would recommend injecting less.
And if you want a bath after your walk, eat a small snack like a biscuit.
Over time, you will learn how to avoid hypos without waiting around.
There will be occasions when it is not convenient to wait 45 before walking so you will need to adopt coping techniques. It’s best to practice when you are not stressed so you know how to manage when such an occasion occurs. For example, if you are running late for an appointment but you haven’t eaten your meal.

 

[Deleted member 25429]

@Freddie1966 if you want to go for a walk within 45 minutes of injecting, I would recommend injecting less.
And if you want a bath after your walk, eat a small snack like a biscuit.
Over time, you will learn how to avoid hypos without waiting around.
There will be occasions when it is not convenient to wait 45 before walking so you will need to adopt coping techniques. It’s best to practice when you are not stressed so you know how to manage when such an occasion occurs. For example, if you are running late for an appointment but you haven’t eaten your meal.

I have found this works for me ... so that’s what I do now . Luckily I work from home so I can sort my working day around what I want to do and when . I made a decision to do this rather than changing my insulin or eating when I’m not hungry. As I said this works for me

 

[helli]

I have found this works for me ... so that’s what I do now . Luckily I work from home so I can sort my working day around what I want to do and when . I made a decision to do this rather than changing my insulin or eating when I’m not hungry. As I said this works for me

Glad it works but there will be times when something happens that is not predictable. You may have to go out at short notice for an emergency. Hence my advice to trial alternative approach that allow you to cope with emergencies.
Managing diabetes whilst managing your life, rather than letting diabetes control your life is about being comfortable with different strategies and being able to select the best at the time which may be at short notice.

 

[Deleted member 25429]

Glad it works but there will be times when something happens that is not predictable. You may have to go out at short notice for an emergency. Hence my advice to trial alternative approach that allow you to cope with emergencies.
Managing diabetes whilst managing your life, rather than letting diabetes control your life is about being comfortable with different strategies and being able to select the best at the time which may be at short notice.

I’m not that inflexible i just choose to on a normal day to manage my diabetes using diet and exercise rather than more insulin. I’m very lucky at the moment as my working day is so flexible. If I need to increase my sugar levels then I do .

 

[everydayupsanddowns]

Welcome to the forum @Martin55

I’m another who started on fixed doses, but alongside them I had fixed quantities of carbohydrate for each meal. At the time they were referred to as ‘exchanges’ (units of 10g of carbs), so I would know I could have x exchanges for breakfast. It didn’t matter what they were as long as I got to the right target and didn't exceed it.

For libre, the national criteria can be found here

Flash glucose monitors (Freestyle Libre) and continuous glucose monitors (CGM)

Update, 11 March 2025: Abbott, the makers of the FreeStyle Libre, have confirmed that FreeStyle Libre 3 sensors will be phased out in the UK by the end of 2025, meaning that people living with diabetes who use the sensors will need to transition to using FreeStyle Libre 3 Plus sensors. If you're...

www.diabetes.org.uk