Diagnosed with Insulin dependent Diabetes at 35

[MrsKitty]

Diagnosed with Diabetes a few weeks ago- got to wait another few weeks for blood test results to tell me if I'm Type 1 or Type 2, although the nurse I saw on day 1 was fairly confident it would come back as T1. I'm on 4 shots of insulin a day, and testing blood sugars regularly- they are still all over the place though.

Haven't been back to the hospital since diagnosis, still waiting for appointments with the consultant and the dietician, and have just been told to call the nurses once a week with my readings so they can adjust my dosages if needed. Is this normal? I feel completely lost to be honest. The only advice I've been given about food is to eat a 'balanced, healthy diet' and 'eat carbs with every meal, but not too many, and not too few'. I feel scared of food and how every meal will affect me because I don't feel like I have any control or understanding of what I'm supposed to be doing!

I'm so pissed off that this has happened to me, and feel quite depressed about the feeling that my life has been taken out of my control .

Not really sure what the point of my post is-just to have a whinge really, I suppose .

You are so right to whinge - insulin dependent type 1 diabetes, and tablet or insulin dependent type 2 diabetes are different illnesses but both types have complications if the blood sugars aren't kept within the healthy range (4 - 7). As you now have a chronic illness you will feel lots of emotions - fear of the unknown, anger (why me!?), + grief at the impact on your life.
You will receive conflicting info - the most important sources are your hospital team and the diabetic nurse. Also get a good textbook written by a proper medical doctor.

Have a good quality blood sugar monitor that is regularly calibrated.
Learn the symptoms of hypos and teach friends and family. Carry a hypo kit.
Swap 'bad' carbs for 'good' carbs- eg wholemeal bread instead of white bread.
Have more veg and apples or pears, and less high sugar fruit like grapes. Ditch sweets, cakes, biscuits; and check products for sugar content (eg 5g sugars is 1 tsp), and look for 'hidden sugars' (glucose etc).
Some diabetic nurses may say it's ok to run your BM up to 10 and that you can adjust your insulin to allow for treats; but do remember that the complications for continual high sugars over 7.0 are serious - i've heard some nurses understate this.
It's really good to get angry - because that means you have the will to fight to stay healthy.

OMG i can't believe they've discharged you in this way...when i was diagnosed with type 1 as a kid i was in hospital for weeks!

Have they put you on fast acting and short acting insulin? I take fast acting with meals and have to adjust the dose according to the amount of carbs i eat..at night i take a background insulin which tends to be a regular dose.

Have you got the number of the diabetes nurse?

What poor advice. Try the British Diabetic Association. They may be able to help (or tell you a good book to use for reference).

I haven't personal experience, but many people live very busy full lives with T1 diabetes. My mum had it for over 50 years and hardly paused to let it trouble her. (She did eat regular meals with regular carbs though - I knew all the basic food groups by the age of 10.)

I think people only get kept in hospital now if they are in a diabetic coma initially. I agree the advice is bad - my friend who is a diabetic nurse specialist sees diabetic hospital patients admitted for surgery and gets frustrated with the lack of knowledge some have. IME the best thing as a patient is to be proactive - keep phoning the diabetic nurse / consultant's secretary for info. State that as a young woman you need to get things sorted and you want to achieve stable in range blood sugars.
Type 1 is an autoimmune disorder where the body suddenly stops producing insulin. In type 2 there is a gradual decline in insulin production until it may stop so you would then need insulin. Hope that helps a bit...?

Thanks so much for all your responses.

I spoke to another diabetic nurse on Friday afternoon (had been having loads of hypos so needed advice) and got things a little clearer. I asked when the blood test results would be back and he said another couple of weeks, but also explained that the way my symptoms presented it was pretty clear that I have type 1.

He aid he would chase up the dietician and that would hopefully take place in a few weeks. He didn't know why the 2 previous nurses I'd spoken to hadn't done the same.

Also changed my long and rapid acting insulin doses, and yesterday was the first day my readings have been pretty good!

Still feel I need good food advice to get things under control, so will keep nagging about the dietitian.

I got T1 diabetes at 18, which seemed on the old side, but I know someone else who got it in their 30s.

Right now don't worry too much about your sugars being very unstable. It is normal, both because you are learning how to control your diabtes and because you will probably experience something called "the honeymoon phase". Not sure I can remember the ins and outs, but look it up.

Get a good book about type 1 - some fdor type 2 will be quite different.

I have recently done a diabetes course called DAFNE, which has been great. It is not offered to people who have had diabtes for less than a year, but keep it in mind.

I find it useful to break carbs into portions (this is a DAFNE thing but also a general diabtes thing). So a slice of bread at 20g of carb would be 2 portions. A bag of crips would usually be one and a half, quavers and wotsits 1. A jaffa cake 1. A sachet of porridge with milk 2. Start reading labels and comparing the results (eg 2 slices of toast with a little jam would be the same as 2 and a hlaf potatoes). This seems really complicated now, but in time will be second nature.

Watch out for "no added sugar". It can still contain sugar. Does't matter in squashes, but fruit juice is quite sweet.

There is nothing wrong with carbs, you need them, enjoy them! If you want a sweet thing, dark chocolate or a little ice-cream (not sorbet/ice) will have the least severe effect on your blood sugar. In time you will be able to have more of a free reign while maintaining good sugar levels.

If you are having a lot of hypos you are taking too much insulin. sometimes a cut of one or two units can be enough. Don't wait a week to discuss with your nurses, call them every day if you need to. It is what they are there for!

Exercise has a big effect on blood sugar and this can be delayed across the next 24hrs. You will learn how to predict this in time.

Well done on your good readings. It is early days!

Feel free to PM me.

Hi falling,

Yes, I'd heard of DAFNE- a friends husband has recently done it. It is available at the hospital I'm being treated at, so hopefully I'll get to do it at some point in the future.

I've been signed off work since I was diagnosed (and have been for another week or so) as I work shifts (earlies, lates and nights) so my GP suggested time off to get my head around things and to stabilise my levels. I'm quite worried about how my shift pattern will affect my ability to control things. I know I'm entitled to ask to have my shifts changed but not working nights would have quite a financial effect on me, as well as messing up some of my childcare arrangements. I also rather enjoy night shifts, so I'm hoping that it is possible to fit the shifts around my diabetes...Anyone have any experience?

Ah...exercise, yes, really need to get into that. Where do people find the hours in the day working full time with small children?! That's a whole 'nother thread, I guess .

Hi Mrs Kitte .... this may be a bit early for you but for those who have done DAFNE Can I just recommend Carbs and Cals to anyone who doesn't know about it. So whenhe's out, or goes to tea at someone's house, he can just look up the carbs in his meals. It has pictures of portion sizes! Really great.

MrsKitty really sorry about your diagnosis. It's a lot to get your head around but you will.

My grandmother was diagnosed with T1 in her forties which is very late. Another name (probably an old one) for T1 is Juvenile Onset Diabetes because it usually starts in teens.

My ds was diagnosed as T1 when he was 5. He's now 11. We did the DAFNE course about 3 years ago and it was great. Before it he was on mixed insulin, (Novomix) which really guesses what you're eating. Get on to a DAFNE course as soon as you can as it makes more sense and gives you more freedom and should cut down on hypos.

It's carbs for which you need insulin. You can eat eggs, meat and other stuff which is pure protein 'free' - in other words, you don't need insulin for it.

You say you've been having lots of hypos. I presume you know how best to treat them? And you're managing to get your blood sugar back up again?
I'm glad the new insulin dosage seems to be suiting you better.

Long lasting carbs are the best ones for you because they release into the blood slowly and steadily. That's wholemeal bread is better than white, as with pasta and rice. Actually these things are better for everyone so in a way T1 Diabetes can force a better diet on people.

You will soon work out your own insulin needs and how certain foods/exercise etc affect them. It's a steep learning curve but you will be an expert within a few months. Give yourself some time to get your head round it.

God I wish I could sit and have a cup of coffee with you and help you get a foot on the T1 ladder.

Do DM me if you want. Our paediatric diabetes team are so fab. We had full training and education. I think there's much more help if you are diagnosed as a kid. Shame, you could really do with some more expert support by the sound of it. xx

i just wanted to post to say it will be ok.

Dh was diagnosed back in 2004 when he was 35 also and he had been feeling poorly for about 2 weeks. When he noticed his eyes had gone blurry he went to doctors who did some tests and concluded insulin dependant diabetes. At that point his BS had reached 28 and he spent a whole day at the surgery learning how to inject himself and then we were both asked to attend a 2 hour appointment with the surgery practice nurse who gave us a crash course in diabetes and she also taught me what to do in an emergency and how to inject my DH.
DH never went to hospital and has never seen a dietician.

This was over 6 years ago now and after 3 months initially of being checked weekly to get his levels to normal and find out what dose was a good amopunt for him he has never (touch wood) had any problems.

He actually eats what he wants including bad stuff BUT he checks his sugar levels regularly (still twice a day) and adjusts his insulin accordingly.

Back in OCTOBER he was injecting twice a day and was having a total of 48 units of insulin (slow release) but he has just lost nearly 6 stone and is now on one injection of 16 units a day and feeling good.

I'm pretty shocked they've put you on basal-bolus straight away...esp given the lack of advice you have had..like many of the others i had to attend a DAFNE course

When i was diagnosed i started off on 2 injections of mixed insulin (which was pretty rubbish and restricting) but it was just while everything got stabalized...being on MDI gives me so much more freedom

What was your blood sugar at diagnosis? What makes them unsure whether it is type 1 or type 2?

Thanks Spidermama- useful advice. I'd love a too!

Bonkerz - I'm heartened to see your DH has lost all that weight - I've got a couple of stone to lose (having lost 4 already since last summer), but have been concerned the diabetes/insulin might make it trickier?

Paddy, they decided to put me on to a basal bolus regime from the start due to my shift work and therefore inability to eat at set times each day - they said it would give me a little more flexibility than only 2 injections a day. I am disappointed/surprised from what I've learnt from books/online that they didn't give me more specific advice on food/carbs at the beginning.

Hi I've had type 1 since I was 3 (coming up for 28 years soon) and it's appalling how little info they've given you.

I'd recommend checking out this site www.diabetes.org.uk/ and giving them a call as they are the replaced of the British Diabetic Association.

Also if you want a listening ear Jenny of IDDT is wonderful www.iddt.org/ and runs a great organisation.

Happy to answer any questions you have but just try and go with the flow for the moment. You may find that your doses will change rapidly because you're in the honeymoon period which means your body is still producing some insulin.

Good luck.It is possible to live with it and have a full and productive life.

Paddy - BS was 29.4 at diagnosis. And having had clarification from a different nurse it would seem they're not unsure whether it's type 1 or 2, it's Type 1, based on my presentation of symptoms and insulin requirements, but they have sent off blood for a confirmation of diagnosis .

Well, I'm now at the end of my 3rd day without a hypo (had one every day last week - 2 on a couple of days ) and BS readings within target for 3 days too (apart from tonight with a 10.4 - a little too much brown rice, it would appear) so I feel like things are becoming more manageable. Still no word on the dietician appointment, so will chase that up again in a couple of days. I betting an appointment comes through for when I'm on holiday at the end of the month .

Hi...my son was diagnosed with type 1 last May...to say it was shock was an understatement, he was in his second year at university and just woke up with blurry vision. It was such a shock and as a mum I found it very hard to cope with at first but 9 months on and we have adjusted.

My son has adjusted wonderfully and I am vey proud of him. He tends to eat what he wants but he has cut down on sugar and covers food with insulin. He is booked on a DAFNE course in June.

Just be kind to yourself and give yourself time to adjust. keep asking your team lots of questions and it has not stopped my son doing anything!
Take care

Sounds like you're doing really well MrsKitty...can see why they did basal-bolus straight away if you work shifts, it is a lot better...i take lantus and novorapid which works pretty well for me.

Are you feeling the hypos?

Just wanted to say to Poppy20 - I posted on your thread last May as my DH is TI diabetic (have namechanged since then, used to be Mrs DInky), I'm glad your son has adjusted so well.

MrsKitty - good luck, I'm sure you will get adjusted but it takes a while. DH has had it for 20 years+ now, and leads a very normal active lifestyle.

WhoKnowsWhereTheTimeGoes ...thank you so much for posting on my wall last May as I remember feeling so shocked and overwhelmed and it was all the positive posts that were so encouraging and helped us to adjust. Thank you :)

Finally getting to see the dietician next week - Hurrah! Am going to compile a great big list of questions .

Poppy20 Glad to hear your son adjusted so quickly - must have been really tough having to deal with it at University - I definitely would have struggled .

Paddy, yes, I'm usually feeling the Hypos coming on so treat them quite early on, although there've been a couple of times where I've not realised until I've gone very low and felt quite ill. DH is getting pretty good a spotting them too.

I had had a good few days of good readings/no hypos, but the last 2 days I've been getting hypos again. Have been quite active (spring cleaning the house) which probably explains them, but it's been quite alarming how quickly I've dropped on occasion.

Thanks for all your advice/well wishes. I'm sure I'll get my head around this soon!

My son has t1 and we use dafne - brilliant. The Leeds hospital website has good info on carb counting. We're lucky that he has an insuin pump and were currently paying for continuous monitoring using a dexcom seven kit.
I'm sure you'll get your head aro und it soon. X

MrsK - yes, DH definitely has to be careful when he does exercise, or anything more energetic than usual. He also has to adjust his overnight insulin on very hot nights in the summer because even just being very hot overnight makes a difference. Glad your DH is getting alert to the changes, I can often tell DH is getting a bit low before he can.

Let us know how you're getting on Mrskitty...cant believe you're only newly diagnosed, you sound like a pro!

Finally got to see the dietician at the hospital this week, who gave be a very basic education in carb counting. Much happier now - feel like I have much more control over what happens to me! She also mentioned the DAFNE course, and suggested that in 6 months or so (once I've stopped 'honeymooning') I request a spot on the waiting list.

DH came home with an ipod for me last night, after I'd mentioned that a friends husband uses his iPhone for carb counting apps & BG monitoring . Can't afford an iPhone contract and this was his next best idea - I've been playing around with it all morning!

oo wot app is that?!

Carbs and cals. Costs about £3.99 I think. (DH sorted it all )

Shows you photos of varying portion sizes for foods too so you can learn how to estimate portions by eye.

Had just ordered the book off Amazon when he came home with it... See here

Haven't chosen a BG monitoring app yet - waiting for friend to get back from holidays so she can find out which one her husband uses!

ah thanks for that..i'll have a look!

Most of the time i just "know" how much to inject...but some things still get me!

Have you gone back to work now?