Newly Diagnosed T1 and Terrified

[disgruntled0x]

Hi all, hope you've had an excellent Xmas and New Years.

Wanted to start this thread as I'm newly diagnosed (30/12/22, Happy New Year to me) after self-testing my BS and getting 30 mmol/l with ketones.

On the advice of NHS 111 I went to A&E who promptly got me dripped up and informed me that it is heavily suspected that I am type 1 diabetic. As a hypochondriac, this quickly put me into a spiral during my three day stay in hospital and it has not stopped since. This forum was invaluable to me whilst hooked up to insulin, so I'm seeking advice of more experienced T1's.

I was handed insulin pens (Lantus 12 units for basal and Novorapid 4 units for meals) and was told when and how to inject. As a smoker, and well aware of how detrimental this can be, I instantly switched to a lower nicotine vape and plan to drop this down until it's just pure water vapour. I've also been following a very LCHF diet, however my BS levels are still relatively high (between 7 and 15). My DSN assured me that this is just my body stabilising, however.

I haven't been able to stop myself going down the rabbithole of complications related to T1, and effectively feel that my life is over already. I've read so much about what can happen if BS levels aren't tightly monitored, and I'm absolutely terrified that these will come to pass at some stage in the not so distant future.

I am using this fear, though, to make sure I keep fit, stop drinking and eat well, but I'm so petrified that regardless of what I do I'll still end up with an endless list of complications. I'm hoping that those here with more experience can give me whatever advice they can to help stall or prevent this.

I've done nothing but read about T1 for the past week, but any additional or anecdotal info is welcome.

Thanks all.

 

[VashtiB]

Hello and welcome @disgruntled0x

I love the name by the way.

I'm a type 2 but will tag in @EllieM and @Antje77 who are both type 1s and may be able to give some advice.

But from what I know- the feeling that your life is over can be very common- it's certainly how I felt when first diagnosed but I think you will find out that it is not over yet. A bit of information and confidence and support will make a lot of difference.

 

[EllieM]

Hi @disgruntled0x and welcome to the forums.

If it's any consolation (and speaking as an n=1 sample so maybe I'm just lucky) I've been T1 since the age of 8 in 1970, and had truly awful control until the age of 20 (when I got my first glucometer). I have also had periods of quite mediocre control since then, though with the advent of cgms I have improved.

Still have all my organs working and limbs intact, no major diabetic complications, (bit of background retinopathy for a decade or so which still doesn't require treatment). Maybe I'm lucky (and maybe I've just jinxed myself) but there are a lot of older T1s out there who've spent long periods with less than perfect control (glucometers only became available in the 1980s).

And as I enter my 60s I see friends develop non diabetic age related conditions that seem (to me) much worse than my T1.

My advice would be to take advantage of the modern technology and don't let your levels go out of control, but you don't have to have perfect bgs to avoid complications and there is a balance between living your life and controlling your diabetes.

My T1 mother had over 50 years of diabetes before she died at 78, half of it pre glucometer, and it was the smoking that killed her, not the T1. (She gave up aged 70 which gave her an extra 8 years, since she would have died of heart issues at 70 if she hadn't, but the condition of her lungs was what killed her, maybe aided and abetted by the T1).

So yes, please give up the nicotine. But embrace the technology and believe that T1 does not need to stop your life or prevent you achieving your dreams (OK, astronaut is out). The future is bright, specially for for young T1s like you.

Once more, welcome

 

[becca59]

Welcome@disgruntled0x
Early days obviously. You have already taken the first steps to a long life. Your determination to quit smoking. Far more likely to shorten your life and give complications ironically.
I personally found that this unwanted diagnosis which came 9 years ago this week has made me far healthier than I would have been. I watch my weight, which is the lowest it has been most of my adult life. Eat as healthily as possible and exercise regularly as that helps with control. Put your hypochondria to good use, instead of worrying something will happen. Tell yourself I am going to eat well to stop that happening.

 

[JoeyGraf20]

Sounds correct that you're body is judt adjusting to it all, when I was diagnosed and released from hospital, like you went in with a BS of 38, my sugars would constantly go up to high teens. My long lasting insulin I was taking in the morning, but found a switch to take it before bed helped massively (only do that after you speak to your specialist) and my dose originally was like 10 units, which is now 25 if I don't exercise and around 20 when I up my cardio.

Cutting the smoking will help, I have the occasional beer but nothing crazy (couple binges a year - my old director gave me the 2 beers and 1 bag of crisps rule which helps stabilise my sugars while drinking- they will be slightly high but counteracts the sudden drop) and just try and get in a few more steps a day.

I would suggest not to completely change your food as you'll start having a bad relationship with it, but to experiment, try the foods you like and try to inject accordingly so you are able to have treats etc - I can nail a tub of Ben & Jerry's and stay relatively in range (obvs not a daily occurance but treats and good)

Keep doing your research but make the whole experience work for you, don't get too down about it, it's always a learning curve but perfect way to get to know your body better than the average person

 

[RoughcutAU]

Welcome to our unenviable club!

I too read everything and anything I could about T1D when first diagnosed in Aug 2021 … especially during that initial 3 days in hospital.

This forum has been amazing to help digest and process that information in a useful way - rather then panicing/stressing on what i have/haven’t done and what will/won’t happen to me.

If you get the opportunity I highly recommend the DAFNE course not just for the content (i already knew most before i did it) but to meet and share experiences/stories with other T1Ds.

I’m horrible at advice .. but if I can say one more thing … don’t stress the odd slip up - it happens to everyone and good overall control does allow us to be human (make mistakes) sometimes.

 

[plantae]

I'm newly diagnosed as T1 as well (I know my profile says T3c, but I'm in the system as T1). I think I did all the same things and had all the same thoughts. I was really down about a month after the diagnosis. Last week I was down as well but this week I'm feeling ok... especially after some conversations I had on here. I decided the other day that my moods being up and down might continue for a while. But I'm taking things one day at a time. My blood sugars are, I think, well controlled -- I've not been out of range for a week now. So that's positive

 

[JoeyGraf20]

I'm newly diagnosed as T1 as well (I know my profile says T3c, but I'm in the system as T1). I think I did all the same things and had all the same thoughts. I was really down about a month after the diagnosis. Last week I was down as well but this week I'm feeling ok... especially after some conversations I had on here. I decided the other day that my moods being up and down might continue for a while. But I'm taking things one day at a time. My blood sugars are, I think, well controlled -- I've not been out of range for a week now. So that's positive

Good and bad days will always be there but forums like this are great I find. A lot of people who don't have to deal with the constant calculations of carbs and insulin etc etc will not have the same understanding, but just keep going 1 bad day, 2 bad days...there is always a good day around the corner

Just over 2 years in for me, found myself just embracing it. Can't do anything about it so just find it best to manage as best I can but still allow myself fun and treats occasionally

A week in range is fantastic