Newly diagnosed type 1

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Heather77

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Type 1
Hi everyone,

I've just been diagnosed with type 1 at 35, so it's all a bit new for me and would be really greatfull for any advice but also just need a bit of help since being diagnosed 3 weeks ago ive started to gain weight as I'm have a constant hunger, I'm going on holiday in 4 weeks so still want to fit in all my clothes 🙂, I'm thinking about starting swimming do I need to speak to my diabetic nurse before I do? Very confused!!!
 
Hi Heather, welcome to the forum 🙂 Sorry to hear about your diagnosis - how did it come about? I was diagnosed aged 49, and it's a bit of a shock isn't it, especially when Type 1 is generally thought of as something that develops in childhood. What insulin regime are you on? Had you lost much weight befre diagnosis? It's very common to put on weight when you are newly-diagnosed and start receiving the insulin that your body has been lacking. All of a sudden, your body can use the energy supplied by your food, and store any unused energy as fat - it can't do this if there is not enough insulin. After I was diagnosed I could happily eat a horse between two bread vans and then come back for seconds! 🙂 Before too long you should be back to your normal appetite.

I would highly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas. Don't be misled by the title, it is an indispensible guide to everything to do with living with Type 1 and will answer many of your questions - for those it doesn't, you now have us, so please do ask away! 🙂

Regarding swimming (and exercise in general) - you will need to find out what suits you best as people can vary a great deal in their requirements for food and insulin before and after exercise. The best advice is to eat and inject normally, test before a short session (half an hour, maybe), and then test regularly afterwards to see what happens to your blood sugar levels. It's very much a case of trial and error - some people need to reduce insulin doses before exercising to prevent a low, others (like me!) inject normally before, but decrease doses for meals after exercising - some people need to do both! So, let your meter be your guide, testing a lot and building up your own personal experience. Always have some fast sugar at the ready in case you drop low, and avoid exercise if your levels are high (above 15) as your levels can climb higher.

I look forward to hearing more from you 🙂
 
Hi Thank you for your reply, well my doctors missed it a few times so i actually was admitted into a&e in DKA, so I was really poorly I only got out of hospital 2 and half weeks ago, but now I'm on insulin I feel like a different person and your right it is a complete and utter shock and like you said I have since found out that it normally develops in childhood so part of me feels lucky that I've got to this age without it developing, I'm currently injecting twice a day with insuman comb 25 half an hour before breakfast and evening meal. Well yes I had lost weight so here's the thing I was conciously losing weight I gave up smoking so I was probably before I got ill the healthiest I've been since leaving home at 18 🙂, I did lose an extra stone that fell off me rapidly so I know that was because I was ill and then the week going up to diagnoses I lost another stone due to dehydration, so 3 weeks ago I had lost over 4 stone however since being rehydrated and eating constantly I've put back on that 2 stone so I really just want to lose another stone!!! How Im going to go it I don't know at the mo!! So your advice is gratefully recieved as I was doing really well and yes at the moment I could eat anything in my sight range 🙂.
I definetly going to get the book as I would like to be more informed

And thank you again for your advice with the swimming, I may have to decrease my insulin in the morning as I do keep lowering at the moment anyway still having too many hypo's now I've returned to work and I walk everywhere, and you've given me the best advice since being diagnosed by saying let my meter be my guide


Thank you so much for your advice and your welcome
 
Meant to finsh that off with -thank you so much for your advice and your welcome to here
 
Heather, I don't want to overload you with advice at this early stage, but you should ask your DSN about going on to MDI (Multiple Daily Injections), also known as 'basal/bolus' insulin regime. This involves taking a slow-acting insulin (such as levemir or lantus) once or twice a day, and a fast-acting insulin (such as novorapid) for each meal. This is MUCH more flexible that two injections a day as you can adust your fast acting doses according to the amount of carbs in the food you wish to eat, and also make more subtle adjustments to cater for things such as exercise and illness. You should also ask about what diabetes education courses are available to you in your area - DAFNE (Dose Adjustment For Normal Eating) is one of the more popular ones, but your PCT may offer something different.

Also, when you were diagnosed with DKA, although you will have lost weight through dehydration you will also have lost weight due to your body having to convert your fat stores (and possibly also muscle tissue) for energy as it was unable to use the glucose in your blood. This fat-conversion process produces toxic by-products called 'ketones' which are acidic and build up in your blood - hence DKA 'Diabetic Ketoacidosis'. In these early weeks your body will be trying to replace this lost tissue.

Try not to become too concerned about your weight at this time. I know it must be disappointing if you were trying to lose weight and now appear to be gaining again, but the most important thing right now is to get back to full health and fitness and learn about what you need to do to maintain good blood sugar levels, retain flexibility in your diet, and exercise safely. As your activity levels increase you will naturally be able to stabilise your weight. The MDI I mentioned will also give you greater control as you will be only injecting for what you wish to eat, not 'eating to the insulin' which is inevitable with a two injection regime. 🙂

I felt like you - that I was lucky in lots of ways to have only been diagnosed after being able to enjoy my childhood and early adulthood without having to deal with diabetes, although many here who were diagnosed as young children often say that, sice they have never really known anything different it is less of a problem than you might imagine.

Early days, but it sounds like you have made a good start! 🙂
 
Hi Heather

Welcome to the club no-one wanted to join! LOL

I echo everything Alan has said to you.

I'd just add - when you are ravenous, do you test your BG with your meter? - because hunger and/or thirst are symptoms of HIGH blood sugar. The trouble with the insulin you are on now is it's a mixture of fast and slow acting ones, so you can't increase one without the other.

Moreover - if you ARE on fixed doses of mixed insulin, then you should also be eating fixed amounts of carbohydrate at fixed times of the day - every single day. This regime includes 3 meals a day with snacks in between. You can't have more or less than the amounts calculated. Did they do that?

It's VERY restrictive in this day and age and doesn't give you much leeway at all. I know this because the old insulins, which we had when I was diagnosed - you HAD to do it because you had no choice at all. It was a right PITA trying to lead a normal life, like e there was some problem on the train coming home from work or something - you couldn't stop the ruddy insulin working and your tea was getting further and further away ......

It sounds like an awful lot of injections and rather daunting - but Hey! - how much better do you feel by having insulin in the first place? Well - you can feel that much better AGAIN by changing to a better routine. I HAVE been there, I HAVE done that ! so this isn't a load of old cobblers that medics tell you, it's true.
 
I couldn't agree more with Trophywench regarding MDI and Northerner has also given you some sage advice. I was 57 at diagnosis and going onto (mixed) insulin was initially like feeling someone had saved my life, but a few months on I realised that it wouldn't fit my lifestyle at all. The basal/bolus regime is so much better.
 
Hi Heather

Welcome to the forum. I was diagnosed Type 1 10 months ago age 33. I too ended up in A&E and that was the first I ever heard about Type 1 diabetes. The first few months can be quite hard - lots of different emotions. There is a lot to learn and I have learned so much from reading and then joining in on this forum so keep asking questions. As everyone will tell you no question is stupid. I, like you, was put on 2 injections a day but I couldnt improve my control on this regime as it just didnt fit my lifestyle. I wasnt used to eating at the same time each day, usually didnt eat 4 times a day and certainly didnt eat the same amount of carbs through the day (I have to admit I didnt even know what carbs were 10 months ago). After much pleading with my DSN I got moved to multiple injections (MDI) 2 months ago and feel I finally have control over my blood sugar levels (most of the time - still have some ups and downs). But overall feel better day to day. Eating no longer feels like a chore as it did in those first few months, so MDI is worth asking about. There is a lot for you to take in just now but take it day by day. I still have good and bad days and still get angry and sad and annoyed and frustrated and wish I could have a day off from it all .... but like you say I too had my first 30 odd years without it and am grateful for that too. Well I'll stop rambling for now (and get back to work :D) I sure we will speak again soon. Take care. Melissa
 
Can't really add much to what's been said already, but just wanted to say, "Hi".
 
Hi welcome! I know how you feel I am 35 and was diagnosed as type 1 two months ago. I too ended up in hospital with DKA. I am still in shock! You sound like you are doing well. I cant answer your question as I am new like you and have amillion and one questions but rest assured there are many lovely people on this site that have made things much more bearable and they are very supportive!😛



Heather77 said:
Hi everyone,

I've just been diagnosed with type 1 at 35, so it's all a bit new for me and would be really greatfull for any advice but also just need a bit of help since being diagnosed 3 weeks ago ive started to gain weight as I'm have a constant hunger, I'm going on holiday in 4 weeks so still want to fit in all my clothes 🙂, I'm thinking about starting swimming do I need to speak to my diabetic nurse before I do? Very confused!!!
Click to expand...
 
Hi I can't really add much more but wanted to welcome you. Definietly find out about DAFNE (or the equivalent). I've just completed DAFNE and found it really interesting, and that's with me having had diabetes for 41 years. I find it useful to have a small bottle of Lucozade at the end of the swimming pool so that I can have small sips each time I've swum a few lengths.
 
thank you everyone for your warm welcome it has put a smile on my face.........i am definitely still in shock about diagnosis and yesterday had a really bad day, maybe i should of explained a bit more i have been worried about my weight gain as im going on a holiday of a life time in 4 weeks im being a bridesmaid for one of my closest friends in las vegas and have been planning it since january. but after looking at my situation i just have to think atleast im healthy enough to go. Which in going abroad leads me to a whole different situation!!!!!

i have been told about the 4 injections a day and my consultant has said i will more than likely be doing that in the near future they just have said they havent wanted to overload me, but also have really said i should be eating at set times which disappoints me as my blood sugar is all over the place but as its all new to me i will just have to keep going at it.

thank you for all of your advice it is greatly apprieciated :D
 
Heather,

It is very "kind" of them not to want to overwhelm you. However, here is my point of view:

MDI (multiple daily injections) is more realistic for a modern lifestyle where you eat at different times of day, eat different amounts and do different things. Hardly anyone gets the right level of control or finds their lifestyle suits 2 injections a day.

My OH got put on insulin in March (has LADA) and was on 2 injections a day, didn't get good enough control and although he felt better than he was, he was definitely not well enough. We then saw the consultant about a month ago and asked for MDI. I wish we'd not wasted time getting used to the other routine and just gone to MDI earlier.

I think you need to work with them on what will suit you best, and getting the info you need to get to grips with your condition, at your pace rather than someone else's idea of the right pace.

It is overwhelming and I personally cried about being a 30 something and coming to terms with the diagnosis, working on lifestyle changes etc.

Now I've started to make friends with people living with diabetes, am an avid reader of Think Like A Pancreas (Gary Scheiner) and Using Insulin (John Walsh), and feel like we can work this out 🙂

All the best with the wedding and everything else 🙂
 
thank you for your kind wishes, i complelty agree with everything you and everyone has said about MDI as my lifestyle is quite hectic and my job is very busy and demanding so i will be asking my nurse when i see here which is very soon as i feel like my lifestyle would suit that better.

i just want to get informed as much as i can and i will look at your recommendations
 
Heather, making contact with other people was really key to us. I was lucky enough to meet a T1 at a diabetes UK roadshow and she has been a real help because she has more experience of MDI than we do!

If you are in the South of England you'd be welcome to link in with us and her. Otherwise why not think of trying to get some event meets - like the Birmingham one the forum have this week?
 
I live in the south west and Birmingham would of been great, I work on Saturdays and have no holidays left but if we are close enough I would be interested in meeting sounds like a great idea 🙂
 
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