Struggling...

[Mark9739]

Hi Everyone.

Newly diagnosed Type 1 here. 31 years old, extremely fit and healthy (ex military), never out of the gym. Don’t know how I’ve ended up here but here I am.

Wasn’t feeling myself for the past 3-4 weeks. Always really thirsty, always needing to pee! And my eye sight went blurry. Thought I’d better go see my GP and see what’s wrong.

Blood sugar reading of 47.
Hbac1 reading 105.

Now have to inject NovoRapid 4 units 3 x per day and Lantus Long Lasting 10 units 1 x per day as well as carry out 4 x prick tests on my fingers every day, for the rest of my life.

Struggling to come to terms with it all and accept it. How can my life just change like that? I had to ask the doctors 4-5 times if I definitely have Type 1 Diabetes. I’m at a loss with it all and I guess I’m here looking for positivity/guidance.

The last time I needed to use the NHS was over 15 years ago. I never get poorly.

Thanks for reading!

 

[Kaylz]

Hi and welcome to the group 🙂

First things first as soon as you can ask your team about carb counting courses or whether they will allow you to do it yourself (I'm self taught and have been since under a month after diagnosis 3 years diagnosed today) its so much better than being on set units of novorapid as you can count carbs and adjust your insulin to match when you've established your carb ratio

Secondly ask about a Libre, there is national criteria for it so have a google for your hospital and they should have it on there

We all understand how difficult it is and what a blow it is, I was diagnosed after being admitted to hospital with ketones a week before my 25th birthday so that wasn't the greatest birthday I have had

Any questions feel free to ask and also just come for a rant whenever you feel the need, we've pretty much all done it! lol
xx

 

[Mark9739]

Thanks for the reply! I’m not sure what you mean about my team? Am I meant to have one? I was admitted to hospital by my GP, given insulin and placed on a drip for 2 hours and sent on my way. Returned the following morning to get a whole bunch of insulin pens, testing strips, a glucose meter etc. All foreign objects to me but it’s been about 48 hours now and I think I’ve got the hang of it.

I didn’t really let anything sink in because I must admit I was a bit rebellious towards it all. I was upset, overwhelmed and confused. How could this happen to me? The question I keep repeating over and over.

I’ve been doing a lot of research into Type 1 Diabetes and I’ve come across the term “Hypoglycaemia”. Where my body is low on sugar and struggles to operate as normal. So to combat this I need to drink a bottle of lucozade? Madness.

I don’t know what a Libre is or what it means. I’ll ask about this next time I’m at the hospital, whenever this may be.

I definitely feel like I’ve just been given everything I need to deal with Type 1 Diabetes and thrown back out into the world. The education behind it all was left to me to find out.

Maybe I can reverse it? Perhaps in 3 months I will go back to normal despite having no cure for this disease yet. PS - I hate the term “disease” !!

Mark.

 

[Kaylz]

i was also admitted by a GP as I had ketones present, I got there about 9pm and wasn't let go until 5pm the following day

You should be referred to a diabetes team, does your hospital have one do you know?

A Libre is a small sensor (about the size of a £2 coin) that you insert to the back of your arm, its a flash glucose monitoring system, its useful for showing trends etc and helping smooth spikes out, some trust it enough to base insulin doses on however I still test blood 4 times a day as the Libre tests different fluid which lags behind actual blood tests

I too felt like you, I was told if I could inject I could get home so I hovered a syringe and needle over my tummy, asked "here?" and did it so that was me on my way

it does get easier but there will always be ups and downs but you'll learn to manage them better
xx

 

[SB2015]

Welcome to the forum @Mark9739

It is indeed a shock when you are diagnosed with T1. It happens so quickly and there is a lot to take in in a very short space of time, but as @Kaylz said it really does get easier. I was diagnosed at the age of 53, with the usual symptoms which you described, and ended up on a drip in hospital. I like the analogy of learning to drive. That seemed fairly complex for the first few lessons (to me) but now it is very much automatic, and I drive anywhere, but there are detours, obstacles that I need to watch for and deal with as they arise. So it is with T1.

Back to information. If you have T1 there is no chance that you are going to reverse it. That is happening with T2 in some cases, but you May have been told that with T1 (a completely different disease) the beta cells in your pancreas have been destroyed by antibodies that were triggered a while ago (perhaps around a year). Once they have destroyed enough of the beta cells you start to show the symptoms you described: Toilet, Thirsty, Tired and Thinner (The four Ts) as your final beta cells just give up. Ince you have Insulin you should now feel physically better, BUT you will also be in shock, and it will take you time to process everything. Be patient with yourself, and keep asking questions on here. We ‘get it’.

And now for practicalities. You have already got the hang of testing and injecting. You should have contact with the specialist team from the hospital (if this has not happened ask for an urgent referral) of a Diabetes Specialist Nurse (DSN) and a consultant. They will help you to learn how to adjust your insulin to suit what you want to eat and to take account of the level of activity you are doing.

I know that all sounds like loads of stuff to manage, and it is but you just have to plan ahead and be organised. Then it doesn’t need to stop you doing anything.

There is loads of support available on here, and I have learnt most of what I know from others on here who are managing the condition day by day. Keep in touch and keep asking any questions that you have.

 

[everydayupsanddowns]

Thanks for the reply! I’m not sure what you mean about my team? Am I meant to have one? I was admitted to hospital by my GP, given insulin and placed on a drip for 2 hours and sent on my way. Returned the following morning to get a whole bunch of insulin pens, testing strips, a glucose meter etc. All foreign objects to me but it’s been about 48 hours now and I think I’ve got the hang of it.

Hello Mark

sorry you have to be here, but glad you’ve found us. It can be confusing and bewildering to begin with, so it’s great to have some experienced heads to run any confusions or uncertainties past. Most often T1 is treated by a hospital clinic. Some see their GPs only and some see a mix of GP plus hospital clinic. Then there are other HCPs it can help to see, particularly Diabetes Specialist Nurses, but also dieticians, educators, and folks to check feet and eyes. There are 10-15 ‘essential’ checks that you should have every year, with different HCPs for some of them - this is your team

I didn’t really let anything sink in because I must admit I was a bit rebellious towards it all. I was upset, overwhelmed and confused. How could this happen to me? The question I keep repeating over and over.

completely understandable and I think we all feel like that from time to time - even many years after diagnosis! But it’s important to keep your rebellion in check. With a few adjustments and a bit of forward planning there’s no reason T1 should stop you doing almost anything (ultra marathons, flying planes, eating pizza - y’know... crazy stuff!) but as US blogger once wrote, living with T1 is a bit like living with a tiger. You can live with a tiger if you are careful, keep it fed and look after it, but if you ignore it or mistreat it it can turn on you and rip you to shreds.

I’ve been doing a lot of research into Type 1 Diabetes and I’ve come across the term “Hypoglycaemia”. Where my body is low on sugar and struggles to operate as normal. So to combat this I need to drink a bottle of lucozade? Madness.

Not a whole bottle. Generally the advice is the ‘15 Rule’ which is to take 15 grams of fast acting carbs (about half a 380ml Lucozade/coke etc, 2-3 jelly babies, 3 dextrose tablets or similar) then wait 15 minutes and recheck. So keep something fast acting on you at all times. But try not to over treat when you do have low blood glucose because your whole brain will be screaming EAT ALL THE THINGS!!!

I don’t know what a Libre is or what it means. I’ll ask about this next time I’m at the hospital, whenever this may be.

Libre is an alternative to fingerstick BG monitoring. It allows you see results and what has been happening in between your checks and also gives a direction and rate of change. Very useful, but you might want to find your feet first?

I definitely feel like I’ve just been given everything I need to deal with Type 1 Diabetes and thrown back out into the world. The education behind it all was left to me to find out.

Maybe I can reverse it? Perhaps in 3 months I will go back to normal despite having no cure for this disease yet. PS - I hate the term “disease” !!

Mark.

I don’t think of it as a disease either. Or of being ‘chronically sick’ which was another negative term I heard at diagnosis. For me it’s a condition. An inconvenience at times, frustrating, and fickle, but ultimately manageable. I can still eat whatever I want (within reason) and if I can balance food with insulin and activity there’s no reason why I can’t stay healthy and fit for many years yet.

I’m nearing 29 years in now, and don’t have much to show from them aside from some slightly pock-marked fingers!

But no... I’m afraid reversal isn’t possible for
T1. You just have to learn to live with it. Or
More properly, it has to learn to live with you.

 

[trophywench]

Mike's said it all above - I was 22 and fit as a flea until diabetes and haven't let it affect my life to that degree TBH. I was brought up to be risk averse to the Nth degree by my mother and still am at heart - hence I needed to control it - not let IT control me. Once you accept it's a Fact Of Life from this day forward (and that took me several years except I didn't rant and rave openly - just cried a lot in private.) That didn't help exactly, apparently at the time, but later I came to realise that we all have to have some outlet for the sheer frustration, mentally. I recognised that logically none of the angst was going to change anything! That didn't help at all at the time though ! LOL

Mike's final sentence says it all. We need to educate ourselves cos there isn't a school we can enrol ourselves in to teach us - except the school of Life - and you've already joined that by enrolling into this forum!

Next step - ask your GP what the next step is - the first thing your surgery needs to do is to get your details off to the authorities to get you a medical exemption card for prescription charges - we get all of ours free for everything. You also need all your medicaments put onto their system so you can obtain regular repeats with no hassle. They also need to enrol you with the retinal screening programme and for the other annual checks all people with diabetes need to ensure they're doing well. Depending on where you live, you will probably be referred on to your local hospital Diabetes clinic where you'll get to see a consultant and be allocated a Diabetes Specialist Nurse. The DSN is going to be your mate - they are the people who see things more from your POV, the difficulties we might have day to day and best of all - never criticise! Because they spend their whole working lives dealing with the likes of us they very frequently are able to make suggestions that are extremely helpful.

I sincerely hope the hospital have told you that you need to advise DVLA that you're now on insulin ?

 

[rebrascora]

I sincerely hope the hospital have told you that you need to advise DVLA that you're now on insulin ?

And your insurance company .... and the rules regarding driving... ie test before you drive and every 2 hrs thereafter and don't drive below 5 on your BG meter

Also, make sure you always carry hypo treatment with you at all times.... a packet of Dextrose tablets is a convenient item to carry... less bulky than a bottle of Lucozade... which actually is no longer recommended, I believe, because they reduced the sugar content. Hypos can hit at the least convenient or expected moment especially in the early stages of diagnosis when your pancreas may still be managing to squeeze a little insulin of it's own out. They can be quite debilitating and dangerous although at this early stage you should feel it happening before it gets too bad.... Just be aware that hypos happen despite your best efforts and they can be pretty scary.... There are many different symptoms but common ones are legs going to jelly, heart pounds, sweaty and clammy, peripheral vision gets blurry, you feel hungry, your brain doesn't function correctly and you get caught up focussing on irrelevant little things when you should be taking your hypo treatment.

Anyway, welcome to the wonderful world of Diabetes! Hopefully you will be into the swing of it in no time and able to assess the carbs on a plate at a glance and balance your insulin to them. @SB2015 's analogy of driving is very appropriate. There seems to be so much to learn and figure out in the first few weeks and months but you get to a stage where your brain eventually does a lot of the stuff automatically and it just becomes second nature. I find it amazing that I know the carb content of so many foods off the top of my head and how much insulin I need for them and I was only diagnosed in February and didn't start insulin till April. Ask for a referral to DAFNE (Dose Adjustment for Normal Eating) course or equivalent. They like you to have a few months of insulin use under your belt before you attend but the course is really helpful and moreover, meeting and exchanging ideas and tips with other Type 1 diabetics is invaluable.

 

[Martin9]

Thanks for the reply! I’m not sure what you mean about my team? Am I meant to have one? I was admitted to hospital by my GP, given insulin and placed on a drip for 2 hours and sent on my way. Returned the following morning to get a whole bunch of insulin pens, testing strips, a glucose meter etc. All foreign objects to me but it’s been about 48 hours now and I think I’ve got the hang of it.

I didn’t really let anything sink in because I must admit I was a bit rebellious towards it all. I was upset, overwhelmed and confused. How could this happen to me? The question I keep repeating over and over.

I’ve been doing a lot of research into Type 1 Diabetes and I’ve come across the term “Hypoglycaemia”. Where my body is low on sugar and struggles to operate as normal. So to combat this I need to drink a bottle of lucozade? Madness.

I don’t know what a Libre is or what it means. I’ll ask about this next time I’m at the hospital, whenever this may be.

I definitely feel like I’ve just been given everything I need to deal with Type 1 Diabetes and thrown back out into the world. The education behind it all was left to me to find out.

Maybe I can reverse it? Perhaps in 3 months I will go back to normal despite having no cure for this disease yet. PS - I hate the term “disease” !!

Mark.

Not a bottle of lucozade , but if you’re in low blood sugars a fun size can of Coke

 

[everydayupsanddowns]

Not a bottle of lucozade , but if you’re in low blood sugars a fun size can of Coke

I’m not sure what the situation is with those cocktail cans any more. They used to be a perfect amount, but as @rebrascora says above the recipes have recently changed (apart from a relaunch of original Irn Bru I heard today!) so I think those little cand might be a bit light now.

Half a 380ml bottle is pretty much bang-on 15g carbs in the new recipe Lucozade though.

 

[Ralph-YK]

I’m not sure what the situation is with those cocktail cans any more. They used to be a perfect amount, but as @rebrascora says above the recipes have recently changed (apart from a relaunch of original Irn Bru I heard today!) so I think those little cand might be a bit light now.

Half a 380ml bottle is pretty much bang-on 15g carbs in the new recipe Lucozade though.

They were talking about Iron Brew the other day on Radio 4. They mentioned old version coming back. There had been big demand for it, with old stock going for a fortune.
Could be some old advice out there about what or how much to use for hypo (blood glucose (BG)) going too low. I've heard Lucozade and jelly babies a lot.

Half a 380ml bottle is pretty much bang-on 15g carbs in the new recipe Lucozade though.

Is 15g the base unit for hypo treatment?

 

[Ralph-YK]

Welcome to the forum Mark.

 

[Kaylz]

@Ralph-YK I'm Scottish and the only thing I've heard about Irn Bru (as it is) are launching a ginger one for the festive period, only across Scotland though so if it comes in sugar free variant I may well have to try it even though I've been on tap water or coffee for the last 3 years

The general rule regarding hypo's is treat with 15g fast acting carbs and wait 15 minutes and repeat if necessary
xx

 

[Bruce Stephens]

Is 15g the base unit for hypo treatment?

Yes. It's large enough that it's often enough, and having a specific number reduces the temptation to overcorrect too much.

 

[trophywench]

Even if it doesn't Kaylz - allow yourself some treats this Xmas! Just jab for it.

Point is @Mark9739 - hypoglycaemia can actually be more of an immediate emergency than DKA because once our BG is plummeting - it can affect the brain so fast that if we don't treat it with fast acting carbohydrates pdq we can go from just appearing pretty sloshed to being completely comatose in 10 minutes - hence why ALL the proper advice is to treat it pdq with a sledgehammer. Then of course if the lump hammer we used was too big - we then have to sort out the high BG afterwards - but at least we're alive to do it!

 

[Kaylz]

Even if it doesn't Kaylz - allow yourself some treats this Xmas! Just jab for it.

I couldn't lol, last time I tried some sparkling water I wasn't overly keen on the fizz feeling anymore so would only try it if it were "free" just in case haha xx

 

[rebrascora]

I am usually pretty rigid with my diet too but the other day I was at the theatre and decided that an ice cream during the interval was not beyond the pale, especially since my DAFNE course, which has inspired me to be a bit braver with my food choices. Sadly the Stem Ginger and honey ice cream which would normally have been my choice pre diagnosis, was a big disappointment. The texture was gritty and it kept catching my throat and I think it is fair to say that I will not be tempted again... My tastes have changed and I wasted £2.50 and 2 units of insulin finding it out! That said, I may still try a little Xmas pud on Boxing Day. I have also been having the odd Lidl sweet mince pie (they are the best in my opinion) with 3 units of insulin since they came into the shops a few weeks ago and that has been heavenly! I am lucky to see one from the box of 12 that I buy though because my partner scoffs them.

 

[Ralph-YK]

Sadly the Stem Ginger and honey ice cream which would normally have been my choice pre diagnosis, was a big disappointment. The texture was gritty and it kept catching my throat and I think it is fair to say that I will not be tempted again... My tastes have changed and I wasted £2.50 and 2 units of insulin finding it out!

Oh, treat as research. You've got information from it.

 

[Martin9]

I’m not sure what the situation is with those cocktail cans any more. They used to be a perfect amount, but as @rebrascora says above the recipes have recently changed (apart from a relaunch of original Irn Bru I heard today!) so I think those little cand might be a bit light now.

Half a 380ml bottle is pretty much bang-on 15g carbs in the new recipe Lucozade though.

Here is carbs per 100ml from Coca Cola site , a fun size coke is 150ml...

Energy (kcal)
42 kcal
Energy (kJ)
180 kJ
Fat
0 g
of which saturates
0 g
Protein
0 g
Carbohydrate
10.6 g
of which sugars
10.6 g

 

[everydayupsanddowns]

Here is carbs per 100ml from Coca Cola site , a fun size coke is 150ml...

Energy (kcal)
42 kcal
Energy (kJ)
180 kJ
Fat
0 g
of which saturates
0 g
Protein
0 g
Carbohydrate
10.6 g
of which sugars
10.6 g

thanks Martin!