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New T1D - 10 months in, I'm still terrified

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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d1jon

New Member
Relationship to Diabetes
Type 1
Hi,

First post here though I have been lurking for a while. I was diagnosed Type 1 at 44yrs old last September.

I had the classic symptoms throughout 2021, losing weight, thirsty, tired all the time, lots of trips to the loo. After finally getting checked out, I had HbA1c of 117.

The last 10 months have been a mixture of anger, denial, acceptance, apathy, intense obsession. Being ridiculously busy at work at the same time has not helped one little bit, but my control is nowhere near where I would hope to be.

I'm terrified that I seem to be taking loads of insulin, and yet I can never get the reaction to it that others seem to suggest I should. I don't know if I'm just insulin resistant because of my weight (i've gained 15kg since diagnosis) or taking too much / too little. My average units with a meal is now 14, because I'm constantly correcting high blood sugar.

I'm terrified that without improving my glucose control, I won't get to ever feel 'well' again. I've been constantly tired for 2 years now, moody, ineffective, etc.

I've got 2 kids and they deserve better.

As you can probably tell, my mental health isn't great, but tomorrow is a new day. Assuming i can get hold of some Novorapid.
 
Welcome to the forum 🙂

What are your numbers like? What insulins are you on?

Everyone needs what they need when it comes to insulin so as soon as your numbers aren’t constantly hyper or hypo that seems OK
 
Hi there, I've been T1D for a little bit longer than you, but diagnosed around the same age, and it is certainly a shock to the system isn't it. If you are high all the time it might suggest your basal needs a tweak? One other thing might be to look at how far in advance of your meals you are bolusing, you made need a bit more time for your insulin to get going. Is this something you could discuss with your DSN perhaps? It sounds like a chat with someone could help you to work out what's going on.
 
Hi d1jon, lovely to have you here on the forum.

It's totally understandable that you feel fearful as it's a lot to take in no matter when you're diagnosed. Managing type one isn't always easy at the best of times let alone with a full family life and a busy job.

I was wondering what support you're getting from your GP or similar? It might be worth having a chat with them to make sure that you've got the info and instructions that you need.

Many people have been in a similar situation and things have changed with the right support so please do keep reaching out and let us know how you get on as we're here to help.
 
Welcome to the forum @d1jon. It is very understandable that you are frightened by all that you have had to deal with, but it definitely does get easier.

In managing our diabetes each of us needs what we need, so don’t worry about the doses of insulin compared to other people, just work with your team to find out what YOUR doses need to be. I am not sure whether you are in the hands of the specialist team (probably at your local hospital) or Your GP Practice. It is important to be working with the specialists especially in the early stages, so ask for a referral if you do not have access to them at present.

If you can tell us a bit more about the insulins you are using and any strategies you have tried it will help us to help you more. Have you been taught about carb counting? There are courses such as DAFNE which teach you how to adjust your doses of insulin to match what you choose to eat. This flexibility could help you if you are wanting to reduce you weight increase.

Come back with any questions you have. There is loads of experience to tap into on here.
 
Thank you. My numbers are generally anywhere from 6 - 18.

I’m on Levemir (22 units twice daily) & Novorapid for bolus. My ratio currently is 3:1, having steadily increased during and after the DAFNE course I took earlier in the year and I try my best to carb count every meal. This is becoming easier as I tend to have fairly consistent portions. The course I feel gave me a lot of confidence to start taking control, but I get frustrated when I don't see the results I am expecting & start to doubt my understanding.

My gut feel at the moment is the basal is where my problems lie. I will freely admit I’m not perfect at allowing time for the Novorapid before eating while I’m working, I see a steady but significant rise in my glucose levels even when I'm not eating (and not just in the early morning). For example yesterday, my Glucose rose from 6 -> 11 without food from 8-12:30.

My most recent HbA1c was 71, so I know things are improving but I expected that having started on insulin.

The support I'm getting has been good so far (mainly the local specialist team), but I do find it difficult to remember all the things that I struggle with by the time I actually get to speak to the DSN or my consultant - by that I mean I may remember to talk to them about (for example) my injection sites, but then forget I was also going to ask about something else. A lot of this is just having a really busy job, which I know I shouldn't prioritise over my health, but find the day is just gone before I get time to do something else. Like today, where I've spent all day writing this post in between calls.

Thank you all for taking the time to reply, from your responses I probably need to get back in touch with my local diabetes team and see if there's anything they can suggest I try that I've not already done. That and try to break 40+ years of eating habits where I never had to think about anything.

Thanks again. I will get there, one day.
 
d1jon said:
Thank you. My numbers are generally anywhere from 6 - 18.

I’m on Levemir (22 units twice daily) & Novorapid for bolus. My ratio currently is 3:1, having steadily increased during and after the DAFNE course I took earlier in the year and I try my best to carb count every meal. This is becoming easier as I tend to have fairly consistent portions. The course I feel gave me a lot of confidence to start taking control, but I get frustrated when I don't see the results I am expecting & start to doubt my understanding.

My gut feel at the moment is the basal is where my problems lie. I will freely admit I’m not perfect at allowing time for the Novorapid before eating while I’m working, I see a steady but significant rise in my glucose levels even when I'm not eating (and not just in the early morning). For example yesterday, my Glucose rose from 6 -> 11 without food from 8-12:30.

My most recent HbA1c was 71, so I know things are improving but I expected that having started on insulin.

The support I'm getting has been good so far (mainly the local specialist team), but I do find it difficult to remember all the things that I struggle with by the time I actually get to speak to the DSN or my consultant - by that I mean I may remember to talk to them about (for example) my injection sites, but then forget I was also going to ask about something else. A lot of this is just having a really busy job, which I know I shouldn't prioritise over my health, but find the day is just gone before I get time to do something else. Like today, where I've spent all day writing this post in between calls.

Thank you all for taking the time to reply, from your responses I probably need to get back in touch with my local diabetes team and see if there's anything they can suggest I try that I've not already done. That and try to break 40+ years of eating habits where I never had to think about anything.

Thanks again. I will get there, one day.
Click to expand...

Allowing time for insulin to get going is key to reducing spikes after eating, so try to find time to prebolus it should keep you in single figures when you get basal sorted.
 
Bruce Stephens said:
Given that you've done a DAFNE course I imagine this course will be going over the same material. But I guess you can skip the boring bits (and maybe the Q&A will still be useful).
Click to expand...
Thanks, even if its to re-affirm my learning I'll take what I can out of it. Thanks!
 
Your phone will have a notes app. Use it. When you’re leading a busy life and parenting you have very little brain space to remember things and that’s fine. Just jot it down in your notes app and it will be there so you can review it and decide what you can ask here or find out on your own and what you want to ask at clinic. It will save you feeling like you’ve missed out of help.


As others have said how many units you need varies from person to person so it’s impossible to compare but just to give you an idea my 12 year old was on 24 units of tresiba and would often have more than 20 units of novorapid with a meal when he was injecting. You need what you need. If you’re not hitting your target BG then doing a basal test can help you determine if it’s the basal or bolus that needs changing and you can go from there.

The key is to improve your control not to be perfect. You’ll get there.

We are here for moral support and for you to offload your stress and frustrations. Managing diabetes is a marathon and you will have some days when it’s a slog and some days where it all seems a breeze. Having support through all the ups and downs is what we’re here for.
 
Thanks @Thebearcametoo. I'm going to be running some basal tests (made a bit easier by the Libre!) and made a start on some notes.

Having moral support has definitely helped me get through the last few days and is very much appreciated.
 
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