Newly diagnosed type 1 autoimmune

[Tori]

Hi, I'm Tori.

I recently went into hospital with a severe chest infection and came home with diabetes whilst in hospital my blood sugars were between 19 and 27 and they kept saying don't panic it will be because of the steroids you're on. Turns out they had done the hbc1a the day I went in and it was 63. When repeated 10 days later it was 80.
I'm still waiting for results of the gad antibodies test but they are fairly certain its type 1 autoimmune as I also have Rheumatoid Arthritis, Fibro, Coeliac, reynauds, hypothyroidism, non alcoholic fatty liver disease, tmj issues, functional neurological disorder, sleep apnea, and to cap it all, in the last 15 months I've had 1 confirmed TIA possibly more and that's left my left leg dead. Several massive bilateral pulmonary emboli (the consultant himself doesn't know how I survived them!!) So now I'm on blood thinners for life too. And its left my lung linings damaged so I'm dealing with pleurisy on a regular basis. Asthma that's never been a big issue has now decided to join the party ‍♀️ so once I got to the specialist diabetic team they were quite surprised at how calm and accepting i was about it I explained when I survived the clots I said I would happily deal with any illness or condition as long as I'm still here! It seems my body may have taken that as a challenge!!
Anyway...

I'm so lost with it all! I'm on semglee for basal and novorapid with meals and don't have any issue with that side of it. Really and truly my main worries are food related. I don't know what I'm supposed to eat/avoid as carbs is the go to avoid thing but in the next sentence you shouldn't eat too little carbs....help!! My blood glucose is still between 11 and 16 at the min but that's a huge improvement! I'm checking in every week by phone and they are increasing it gradually. Any tips at all will be so gratefully received...and also huge apologies for this turning into a mega essay, congrats if you made it this far!
Thanks in advance xx

 

[SB2015]

Good morning Tori, and welcome to the forum. Sorry to hear that you are dealing with such a complex list of conditions, but impressed with your attitude towards this.

As you have said the specialist team will work with you to gradually sort out the appropriate dose of your basal ( background) insulin which will deal with the glucose that your liver releases to keep you ticking over, and the Bolus insulin (Novorapid) which will deal with the carbs you eat. This does take time to get right as it is different for each of us, and they will want to bring your levels down gradually, to allow your body to adapt back to normal levels of glucose. It sounds like you are in safe hands.

With regard to what you can eat, for T1 there are no restrictions, just eating a sensible healthy diet. What they will teach you is to count carbs, so that you can in the future you will be able to adjust the doses of Novorapid that you need at each meal. The more carbs you eat at a meal the more glucose you will make, the more insulin you will need. At this stage you could start to look at the info on the packaging of the ingredients you use and start to calc7late the number of carbs you are eating.

Keep in touch and keep asking questions. It is a lot to take in at the start but there is plenty of help on here from people who understand it all and live with it Day by day.

 

[Ralph-YK]

Welcome to the forum Tori from a T2. I had a big infection at diagnoses too, in my legs (cellulitis).
Normal procedure (as far as I know) is for the hospital to adjust insulin levels at the beginning to find the right dose for you. And you've to match up what you eat and the insulin does.
There's a course on adjusting you're does for the carbs you eat, called Dose Adjustment For Normal Eating (DAFNE).
Diabetes UK also have a page about carb counting https://www.diabetes.org.uk/guide-to-diabetes/enjoy-food/carbohydrates-and-diabetes/nuts-and-bolts-of-carb-counting/learn-about-carb-counting.
I'd suggest keeping a food diary, along with a record of your levels. This will be useful for both you and the hospital. Hopefully, in time, you see a pattern.

 

[Jodee]

Hi Tori Welcome

My diabetes was steroid induced too - they really do hike up the blood glucose levels. So sorry you've had to experience same thing.

The doc on 111 service told me recently when mine were up to 21, that they only start to get worried when it reaches 27, I said but would I even be capable of phoning 111 service if levels reach that high, he said you would certainly be presenting a lot more symptoms ! mmmm

Good you were in hospital at the time yours went so high. Also if you have to go into hospital again, its worth asking for diabetic monitoring from that Department at the hospital.

So sorry you are dealing with so many other health issues too.

As suggested ask for referral to the DAFNE course through GP, diabetic nurse or specialist.

Take good care.

 

[Thebearcametoo]

Wow that’s a lot going on. Ralph has already pointed you to the main resources. It can be worth getting the carbs and cals app and/or book as a way to work out carbs. You’ll work out what level of carbs works for you over time but going gently at the beginning and working with a slight modification of what you’d normally eat will help your team slowly bring your glucose levels down. It’s as much about mixing your carbs with fat & protein as the carbs themselves so a balanced diet is the aim. You may find some foods make you spike really quickly and need different insulin timings (rice is one of these for my daughter). Some people work really well with low carb and that helps them to reduce their insulin but others don’t suit it so it really is personal. For what it’s worth my daughter (9) has around 60 carbs each meal and rarely over 80 but as an adult you may find that’s not enough or that you can cope with fewer carbs. It’s all about finding what works for you once you have a hang of the basics.

 

[everydayupsanddowns]

Welcome to the forum @Tori

Unfortunately those pesky autoimmune conditions do tend to flock together and you seem to be gathering quite a little collection

Try not to worry though, while potentially serious, diabetes can usually be managed well, and because T1 requires insulin replacement it can mean that you are less restricted food-wise than others who are mainly using diet as a means of blood glucose management. It just means that you have to match the insulin you are taking with the food you are eating - which is fairly straightforward in theory, but can be a little frustrating and fickle in practise!

You may find there are some helpful links, resources and starting points in the Useful Links thread https://forum.diabetes.org.uk/board...for-people-new-to-diabetes.10406/#post-938456

Particularly Ragnar Hanas's book Type 1 Diabetes in Children Adolescents and Young People -which is very well regarded on the forum and gives a clear overview of life with type 1. Don't be misled by the title - this book is relevant to people of all ages!

Good luck with adjusting to your new condition, and keep asking questions - nothing will be considered too obvious or silly here, and you are likely to have lots and lots in the early weeks!