Newly diagnosed type 1

[betheaton]

Newly diagnosed type 1 diabetic here! Had to deal with the diagnosis alone due to coronavirus and have been in hospital since Friday morning due to having DKA. Been discharged and feeling pretty apprehensive about managing life outside of hospital. Has anyone got any useful advice or hacks which would make my life easier? Thanks!

 

[MrDaibetes]

Hi & welcome to the forum. Type One Diabetes may sound scary but you'll be fine.

My Advice would be peer support is something I struggled with at first but now it's something I couldn't live without. There's a lot of information about T1D, but if you have any questions please ask away.

 

[Ralph-YK]

Welcome to the forum Beth.

 

[Flower]

Hello and welcome @betheaton , glad you've found us🙂

Sorry to hear about your diagnosis and having DKA. It is a frightening thing to go through. I hope you are starting to feel a lot better with an insulin supply and lower blood glucose. What insulins have you been started on? Are you using fixed doses of insulin for meals for now? - If so over the next few weeks/months you'll be shown how to carb count and match the insulin you need to take to cover the carbs you're eating - it makes life a lot more flexible.

There is a lot of information to take in very quickly at diagnosis. I think one of the best things to do is write down or log each detail about blood sugar values, insulin taken, food eaten and start to build up a bigger picture rather than a lot of individual bits of information. It really helps when you can look back at what worked well and what didn't quite go to plan!

There is an excellent reference book by Ragnar Hanas 'Type 1 diabetes in children, adolescents and young adults' - the age groups are irrelevant as it's an excellent resource whatever age and covers what you need to know. It is approx £25 but worth its weight. If you do order it get the latest edition as it is updated from time to time.

Please ask questions you have, there's a wealth of experience on here and please use your diabetes team for medical input. It is a steep learning curve to start with. Best wishes.

 

[Thebearcametoo]

Hi. Welcome. I’m sorry about your diagnosis. There’s a lot of information to digest at the beginning and it will feel like you can’t get your head around it but you’ll soon adjust to testing and injecting. To begin with you’re looking to have some control over your glucose but as everyone’s insulin needs vary it will take a little while to get your doses right. Have some hypo treatment with your always and don’t be afraid to test often if you feel odd (both hypers and hypos can have you feeling off). Have they talked to you about carb counting? How are doing with testing and injecting?

 

[rebrascora]

Welcome from me too.

Must have been very frightening going through DKA particularly without family support... I managed to dodge that black ball! I am a year and a half down the line and all I can say is that it is totally OK to feel overwhelmed at first but you will get the hang of it and it definitely gets easier....

Biggest tip is to test lots and to always carry something to treat a hypo. If you have not yet had one, you might not realise how scary they can be and perhaps forget.... but don't.... always have something by the bed and something in your pockets and handbags and in the car if you have one.... A few jelly babies/tangfastics etc or dextrose tablets of full sugar coke or lucozade or a small carton or orange juice. Have stashes all over the house so you don't have to go looking for them.

I got a neutral coloured (goes with everything) trendy backpack handbag thing and that contains everything I need for testing, insulin, spare needles, phone and hypo treatments and goes with me when I leave the house.... even to muck our my horses and feed my chickens.

Downloading an app like "My Sugr" really helps with logging everything and I keep a record of readings, insulin injections, food and exercise on my app. It then collates the data into graphs and charts so your team can see any oddities etc.

Anyway, those would be my top tips to get started. The support on this forum is second to none and without it I would probably be sitting in a corner whimpering and waiting for people in white coats to come and take me away, so you have come to the right place for help!

Anything you are unsure about or don't understand just ask and we will do our best to put you in the picture.

Good luck and keep us posted with your progress.

Out of curiosity, have they given you a Freestyle Libre sensor ... some of the newly diagnosed in my area get them straight away now..... it is a sensor which sticks to your arm and you swipe it with a reader to get an approximation of your Blood Glucose reading instead of having to prick your finger every time. Also, as others have asked, which insulins have they given you?

 

[everydayupsanddowns]

Welcome to the forum @betheaton

You sound like you have done amazingly well despite being diagnosed at a very difficult time.

There are a bunch of useful resources and links here:

Useful links for people new to diabetes

These links provide useful information, particularly to those newly-diagnosed. You can also browse the Recommended Books and Links sections for further information :) Contents: Type 1 Section Insulin Pumps Section Type 2 Section General Help and Information Section Complications and screening...

forum.diabetes.org.uk

Many members also find Ragnar Hanas’s book a very helpful and understandable introduction - useful whatever age you are!

I’d agree about keeping notes - if can feel a bit tedious initially, but once you get used to it you’ll hardly notice you are doing it. Then you’ll be able to look back and try to spot patterns that you’d never notice without notes.

Have you been told about carb counting yet? Matching the amount of carbs in your meals to your insulin doses?

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

 

[SB2015]

Welcome to the forum @betheaton from another late starter. Glad that you have found us.

You have had loads of ideas and information already. The Rgnar Hanas book that you have been recommended is very useful. It explains things very clearly. Ignore the age reference. I was 53 at diagnosis and T1 is T1.

Take your time to read through, keep in touch and ask absolutely any questions that you have.
There is plenty of help and advice available on here.

 

[betheaton]

Hello and welcome @betheaton , glad you've found us🙂

Sorry to hear about your diagnosis and having DKA. It is a frightening thing to go through. I hope you are starting to feel a lot better with an insulin supply and lower blood glucose. What insulins have you been started on? Are you using fixed doses of insulin for meals for now? - If so over the next few weeks/months you'll be shown how to carb count and match the insulin you need to take to cover the carbs you're eating - it makes life a lot more flexible.

There is a lot of information to take in very quickly at diagnosis. I think one of the best things to do is write down or log each detail about blood sugar values, insulin taken, food eaten and start to build up a bigger picture rather than a lot of individual bits of information. It really helps when you can look back at what worked well and what didn't quite go to plan!

There is an excellent reference book by Ragnar Hanas 'Type 1 diabetes in children, adolescents and young adults' - the age groups are irrelevant as it's an excellent resource whatever age and covers what you need to know. It is approx £25 but worth its weight. If you do order it get the latest edition as it is updated from time to time.

Please ask questions you have, there's a wealth of experience on here and please use your diabetes team for medical input. It is a steep learning curve to start with. Best wishes.

Thank you for your reply! I’m currently fitted with a libre sensor so I can monitor my sugars that way, nice in theory but I’m obsessing over testing my sugars which I suppose is good but it freaks me out when my sugars go up unexpectedly as I’m not sure what that means for me yet. I’m on fixed bolus insulin (tresibia) and supplemental fixed units of novorapid before meals.
I’ve been told about carb counting roughly, but until I have a better idea of how to do it I’m sticking with the set units of insulin and hoping my meals arent too carb heavy. I have the carbs and Cals app which helps.
First night at home after 4 days in hospital was pretty scary! Felt really odd and light headed but put that down to being laid in bed for nearly a week and getting no exercise (as well as stress) as my blood sugars were pretty stable (9 is about what my body sits at at the minute which I’m told is high but okay for now since it’s a new thing).
looking forward to learning more and getting used to things, pretty overwhelmed with everything right now but it can only get easier.

 

[Thebearcametoo]

Yeah 9 is above target (4-7) but a really good level for someone who has been newly diagnosed. You may find you get some hypo symptoms above 4 because your body has been used to being a lot higher but you will soon adjust.

 

[Bruce Stephens]

I’m on fixed bolus insulin (tresibia) and supplemental fixed units of novorapid before meals.

Tresiba's a basal insulin, the Novorapid is the bolus. And don't worry too much about going too high (especially after meals). That's normal and since you're not yet adjusting your doses there's not much that you can do about it. (If you wanted, you could go for a quick walk after eating, and then see what that does to the graph.)

 

[Ralph-YK]

Fixed doses are standard, as least to begin with, I believe.
If you keep a food diary, along with a note of does and your BG levels. Possibly exercise etc as well. Hopefully you'll start to see a pattern. And the info could help when it comes full carb counting & adjusting your doses. May help the hospital set your base dose.
There's a course called DAFNE that covers some of this I believe.
Being newly diagnosed, you're BG will be on the higher side. Usually is.

 

[betheaton]

T

Yeah 9 is above target (4-7) but a really good level for someone who has been newly diagnosed. You may find you get some hypo symptoms above 4 because your body has been used to being a lot higher but you will soon adjust.

Thank you for this. My body has felt WEIRD since I’ve left but we were saying it’s because I’m probably on “withdrawal” as my body is so used to being in a hyper state. Put my mind at rest a bit! So grateful for this forum already and it’s not even been a day!

 

[Bruce Stephens]

My body has felt WEIRD since I’ve left but we were saying it’s because I’m probably on “withdrawal” as my body is so used to being in a hyper state.

Probably, yes. There's a fairly new NHS website you may find useful (and may well have been told about already, for all I know): https://mytype1diabetes.nhs.uk

 

[Thebearcametoo]

I think also your body has had months of being stressed because there was something wrong and now it’s being dealt with on a physical level all those stress responses can be dealt with so you feel terrible because you need time to recover. It will get better though.

 

[trophywench]

Hiya - I was 22 - so I hear you! At least the forum exists (whereas they hadn't invented home computers yet, only mainframes which used punch tape or punch cards, one of my employer's mainframes (the Powers one, not the IBM) appeared in an early Bond movie. The programers had to write some really rubbish progs just to make all the discs in shot to spin fast for it!)

What are your home arrangements - with mum & dad or your own home? I ask because you not only need expert medical support and peer support (eg from here) it's helpful to have home support on hand too - but if so, they'll need educating as well if they're going to be helpful when things fall apart. Sometimes just needing a big hug from whoever is reliable is enough - and two heads are often better than just one anyway if only to check that what you think you ought to do in a situation, does sound sensible!

 

[stephknits]

Welcome from me too. A scary time to be in hospital by yourself. Glad you found us

 

[betheaton]

Hiya - I was 22 - so I hear you! At least the forum exists (whereas they hadn't invented home computers yet, only mainframes which used punch tape or punch cards, one of my employer's mainframes (the Powers one, not the IBM) appeared in an early Bond movie. The programers had to write some really rubbish progs just to make all the discs in shot to spin fast for it!)

What are your home arrangements - with mum & dad or your own home? I ask because you not only need expert medical support and peer support (eg from here) it's helpful to have home support on hand too - but if so, they'll need educating as well if they're going to be helpful when things fall apart. Sometimes just needing a big hug from whoever is reliable is enough - and two heads are often better than just one anyway if only to check that what you think you ought to do in a situation, does sound sensible!

Living at hone with parents currently, although I’ll be back living at uni come September. Hopefully time to get used to everything!

 

[trophywench]

House share or what? - need to bag own sacrosanct fridge space for insulin for starters, and Private space for Hypo remedies stash. Also educate other home occupants. If same folk as last year - start right now if you haven't already.

Uni healthcare is usually very good - but YOU have to ask for it. Which Uni, cos someone on here may already know who/what/why/when !

 

[everydayupsanddowns]

This DUK Houselate checklist is quite useful for Uni I think

DUK housemate checklist

PDF from Diabetes UK with useful information for those starting university or moving in with new housemates.

www.t1resources.uk

and JFRF’s University toolkit

JDRF University Toolkit

JDRF guide to starting and surviving at university.

www.t1resources.uk