Newly Diagnosed T1

[VickyT1]

Hi all

My name is Vicky and I am 42 years old, I was diagnosed with Type 1 a week ago which has come as such a shock although I was feeling very poorly for a few weeks leading upto this (with the main symptom being blurry vision - previous to this no problems with eyes). I feel so afraid about the future, I am finding there is so much to learn and I am not quite sure how I will get there with this. I started looking at this forum this morning and already I do feel this is helping me.

I feel like every day is a rollercoaster of emotions but I want to be stronger. My blood sugar levels are very up and down so I think this is adding to the way that I feel. I had a positive day yesterday but then last night had a hypo and think I over treated this (as I was panicking about having a hypo) and my blood sugars rocketed and then I had effects of a hyper. This morning I feel off in myself with a sicky headache and my eyes feel slightly blurry - is this normal?

I am currently doing the finger prick tests but have read a lot about the libre 2 sensor system which sounds amazing. At the moment my nurse says that I need to stick with the finger pricking and not to introduce something else new. I just wondered what people’s thoughts were on this?

Any advice for a newly diagnosed T1 would be much appreciated

Many thanks

 

[JMoli]

Hi Vicky, sending a big hug - it’s quite a shock to get the diagnosis isn’t it and it can feel so overwhelming. I’m a year into my diagnosis now, in my late 40s, and learnt so much here on the forums. It’s good to know you’re not alone with this condition I think, and everyone will understand how you feel - people are very friendly and happy to help.
A Libre is brilliant, it really helps you to understand your reaction to food. Learning to carb count ASAP and asking for help with your carb ratio in the early days is also good. Think Like a Pancreas is a great book, and I was also told that diabetes is a marathon not a sprint, so be kind to yourself as there’s quite a lot to learn xx

 

[urbanracer]

Hi all

My name is Vicky and I am 42 years old, I was diagnosed with Type 1 a week ago which has come as such a shock although I was feeling very poorly for a few weeks leading upto this (with the main symptom being blurry vision - previous to this no problems with eyes). I feel so afraid about the future, I am finding there is so much to learn and I am not quite sure how I will get there with this. I started looking at this forum this morning and already I do feel this is helping me.

I feel like every day is a rollercoaster of emotions but I want to be stronger. My blood sugar levels are very up and down so I think this is adding to the way that I feel. I had a positive day yesterday but then last night had a hypo and think I over treated this (as I was panicking about having a hypo) and my blood sugars rocketed and then I had effects of a hyper. This morning I feel off in myself with a sicky headache and my eyes feel slightly blurry - is this normal?

I am currently doing the finger prick tests but have read a lot about the libre 2 sensor system which sounds amazing. At the moment my nurse says that I need to stick with the finger pricking and not to introduce something else new. I just wondered what people’s thoughts were on this?

Any advice for a newly diagnosed T1 would be much appreciated

Many thanks

Hey! Welcome to the forums.

It is well documented that people (diabetics) benefit from participation in on-line forums. I think there are many reasons for this (including as you will often hear us moaning - doctors don't know much about diabetes). I was 54 at diagnosis and fortunately found this site within a couple of months.

For hypo's I find that about 15grams of carbohydrates is enough to stop the crash and not overshoot in the upper direction too much. This is equivalent to a small container of Glucojuice (can be bought on Amazon) or a medium thick slice of bread. Small cocktail mixer size cans of Coca Cola can be found in most supermarkets and are handy to have around.

Bear in mind when things get desperate that liquids are absorbed by the body more quickly than solids. If you have time to make yourself a sugary coffee or tea, then a single teaspoon of sugar is approx 4grams of carbohydrate.

High blood sugars can cause distortion of the iris and your brain unmuddles this for you inside your head. As your blood glucose reduces relatively quickly, your iris has probably relaxed and your brain is trying to make sense of everything. You should lose the blurryness within a couple of weeks.

Stick with us, we've got your back!

 

[KK123]

I am currently doing the finger prick tests but have read a lot about the libre 2 sensor system which sounds amazing. At the moment my nurse says that I need to stick with the finger pricking and not to introduce something else new. I just wondered what people’s thoughts were on this?

Hi there, I think the reason for this on diagnosis is that they like you to have a good understanding of the condition which at the start is very much trial & error! Having to do it physically means having to think about each stage of what you are doing and why instead of relying on a 'gadget' to do it for you. My Nurse said they see the libre (or similar) as a very useful tool to help you manage diabetes 'later' but it cannot take the place of YOU being in charge, for example if you were put on it straight away you may end up with no understanding of what to do should the thing fail, etc. Carb counting, finger pricking, testing etc all needs to be understood (ie the basics) before any management tools are introduced. Having said that, there is also something to be said for starting as you mean to go on, but not every type 1 (or others) gets given a libre anyway, there is a fair amount of hoop jumping to go through. It could be your Nurse is seeing how things go, (you are likely to be in the honeymoon period too) for a few months before introducing a different way of doing things. x

 

[VickyT1]

Hi everyone and thanks so much for taking the time to reply to me - I am taking all this advice in. I am sure I will have lots more questions and it’s reassuring to know that this forum is here. I will be reading this LOTS!!!!!!! x x x

 

[xxrubywxx_]

Hi Vicky, I hope your doing ok! Nothing can prepare you for the news that your Type 1! I remember feeling confused, angry, scared, sad. All the emotions. It’s great that you have found the forum so early on. I have had type 1 for 11 years and only just joined. In very short space of time this forum has really helped.

With a little time it’s amazing how well you get to know your body and it’s reactions too. Just give it time. Diabetes is one of those conditions that “striving for perfection” is not the way to go as it’s virtually impossible. Think more consistency. Routine for me is key I find eating at same sorts of time and have a good few key meals that you know work for you can really help.

I agree with JMoli carb counting early on will set you up to achieve better numbers and over all Heath. I also use the Libre and it’s great, would definitely recommend.

I hope your find your way and remember we are experiencing or have experienced many similar thoughts feelings and situations to yourself! I hope this helps x

 

[VickyT1]

Hi xxrubywxx many thanks for your reply - yes I am definitely feeling all of those emotions right now and having good and bad days but I know it will get easier. It’s really encouraging being on the forum as it makes you see that people are living full and normal lives which is definitely what I need to hear right now. I have an appointment with the dietician next week to look at carb counting. Will look forward to the day when I can have a libre too. I hope you are well and thanks again for your reply x x x

 

[TashT1]

Hi Vicky welcome to the club.

I was diagnosed 9 months ago & have used the Libra since day 3 and it really helped me take control very quickly.

The quick version is the hospital
DN gave me a sample Libra because I was close to DKA & sent me home, I think got it on prescription for 2 months before it got taken off due to antibody test coming back negative. It took another 6 months to confirm a T1 diagnosis & in the meantime I’ve self funded a Libra & it’s been worth every penny.

Once my diagnosis was 100% confirmed I asked for it back on prescription but got denied because I still produce some insulin & my control is too good.

It’s a bit of a kicker when you put that ‘good’ control down to using the Libra.

A few things that allowed me to get up to speed on my new life were:

Think like a pancreas by Gary scheiner
The Hypo programme - online
Diabetes Uk learning centre
Carbs & Cals app for carb counting
Bertie online for carb counting

It’s a lot to take in, so curate what you learn and when. If you have questions just ask, we will help you in whatever way we can.

 

[VickyT1]

Hi TashT1 - many thanks for your reply and all this helpful advice - it’s good to know that you have been using the libre from very early on and it helped you take control more quickly. The finger pricking is much easier now but I am also working from home at the moment so it’s not too bad - will be a pain when I am back in the real world and the libre would be better. I have ordered the book you have mentioned too and thanks for the heads up on the apps! So pleased I found this forum - the way you guys are helping us newbies is amazing. Big thanks again x x x

 

[d302q1]

Hi Vicky, I was also diagnosed Type 1 (late onset) recently at 34 which was totally random so I know how you feel!

2 things I recommend:

1) I know I sound lazy but definitely push to get a glucose monitor/sensor such as Freestyle Libre 2 or the Dexcom G6 as soon as you can. It's life-changing, gives you super real-time data and therefore you'll have tighter control. And it does away with all that finger-pricking which I found a real faff (although I still always keep all the gear and the testing strips in the cupboard just in case, and it's sometimes nice when I want to "verify" sensor readings I don't feel are right).

Freestyle Libre 2 is available on the NHS nearly everywhere. Dexcom G6 is more patchy. If money is no object (say £160 a month), I highly recommend self-funding the Dexcom G6 sensor as the best. It's similar to the Freestyle Libre 2 except it Bluetooths a glucose result to your iPhone every 5 minutes on a nice graph without you having to physically remember to "tap" your phone onto the sensor on your arm.

I'm on the Freestyle Libre 2 now because it's free (finally after a lot of hoop jumping my diabetic nurse prescribed it) but I don't like it as much as the G6, but I guess it's a personal preference.

2) Once you get a glucose monitor go and find a book called "Sugar Surfing". Written by an endocrinologist who has Type 1 Diabetes himself, he explains how to microdose your way through the ups and downs for super tight glucose control

Good luck!

Oh one more thing because nobody told me when I was diagnosed - when you do eventually feel ill (say the flu) and are in bed feeling sorry for yourself, be prepared for some unexpectedly stubbornly high glucose levels and be assured that it is normal! Everyone is different but I found frequent mini half-unit doses of rapid-acting insulin to nudge it down worked for me.

 

[TashT1]

Here’s the sick day rules in case you do get ill:


https://www.england.nhs.uk/london/w...abetes-Sick-Day-Rules-Type-1-MDI-06042020.pdf


Even if your using a Libra you should carry finger pricking gear with you. It’s the best was to monitor a hypo in real time as CGM’s are 15mins behind. Always double check a hypo with a blood test. It’s hard but your libra could be reading 3 & your really at 2. That’s a big difference in terms of hypos.

 

[VickyT1]

Hi Vicky, I was also diagnosed Type 1 (late onset) recently at 34 which was totally random so I know how you feel!

2 things I recommend:

1) I know I sound lazy but definitely push to get a glucose monitor/sensor such as Freestyle Libre 2 or the Dexcom G6 as soon as you can. It's life-changing, gives you super real-time data and therefore you'll have tighter control. And it does away with all that finger-pricking which I found a real faff (although I still always keep all the gear and the testing strips in the cupboard just in case, and it's sometimes nice when I want to "verify" sensor readings I don't feel are right).

Freestyle Libre 2 is available on the NHS nearly everywhere. Dexcom G6 is more patchy. If money is no object (say £160 a month), I highly recommend self-funding the Dexcom G6 sensor as the best. It's similar to the Freestyle Libre 2 except it Bluetooths a glucose result to your iPhone every 5 minutes on a nice graph without you having to physically remember to "tap" your phone onto the sensor on your arm.

I'm on the Freestyle Libre 2 now because it's free (finally after a lot of hoop jumping my diabetic nurse prescribed it) but I don't like it as much as the G6, but I guess it's a personal preference.

2) Once you get a glucose monitor go and find a book called "Sugar Surfing". Written by an endocrinologist who has Type 1 Diabetes himself, he explains how to microdose your way through the ups and downs for super tight glucose control

Good luck!

Oh one more thing because nobody told me when I was diagnosed - when you do eventually feel ill (say the flu) and are in bed feeling sorry for yourself, be prepared for some unexpectedly stubbornly high glucose levels and be assured that it is normal! Everyone is different but I found frequent mini half-unit doses of rapid-acting insulin to nudge it down worked for me.

Many thanks for all this advice much appreciated! I have been using a libre for the past week and it has been great Will order the book