Newly diagnosed Type 1

[JoeT1]

Hi All,

Went into hospital a couple of weeks ago (on Tuesday) with a racing heart. After a number of tests it was discovered I am a Type 1 diabetic. I spent the following 3 days in Intensive Care and another 5 in a ward. All a massive shock to me, but also when you add everything up (thirst, urination, feeling down, tired etc etc), all the signs have been there that I have had this for the best part of a year or two...

Came out of hospital on Tuesday, bursting with the want for knowledge and need to get this under control as soon as I can. I am registered for the DAFNE course in September of next year and have purchased the book (Think Like a Pancreas). I am trying to count my carbs to Insulin ratio and so on, am back with my dietician on Tuesday afternoon.

So many questions, so many things I need clarifying and reasoning behind:

Why am I higher in the evenings?
Whats the best amount of carbs for me?
Is there too much Insulin in a day?
Can I live a normal life, eating normally, socially, relationships etc?
Should I really go low carb, or can I stick with eating up to 50-60-70 carbs a meal, 20-30 carbs for snacks etc...
How do people go with restaurants etc
I love food, is this it now?
Is it possible my ratios will be different from morning to evening?
Why me?...

Obviously these questions can't be answered here. I just wanted to introduce myself. I'm a little scared by it all, despite trying to fight that urge to be scared.

Little about me:
5ft 8"
72kg
Active gym goer
Professional Test Engineer
Love Food

Thanks for reading.

Joe

 

[catapillar]

Why am I higher in the evenings?

When do you take your basal and what basal are you taking? It is possible that it is running out in the evening if itis lantus taken pm, because lantus only lasts about 18hrs. Levemir lasts 12hrs. Many people split their basal dose the get 24hr coverage with an am and pm dose. Discuss this with your DSN.

Whats the best amount of carbs for me?

However many you want, there is no set figure.

Is there too much Insulin in a day?

No. So long as you aren't having hypos you aren't having too much insulin.

Can I live a normal life, eating normally, socially, relationships etc?

Yes.

Should I really go low carb, or can I stick with eating up to 50-60-70 carbs a meal, 20-30 carbs for snacks etc...

Low carb advice is really for type 2 diabetes. There is no requirement for a type 1 to low carb.

How do people go with restaurants etc

I might check out the menu online before going to see if there is any nutritional info available. If not I'll use my fitnesspal and/or carbs and cals app to assist with carb counting what ever I order. I'll test and bolus at the table and eat.

I love food, is this it now?

Is what it? There's no reason type should stop you eating anything. You just need to know how to manage your insulin to deal with it.

Is it possible my ratios will be different from morning to evening?

Yes. It's quite common to need a different ratio in the morning.

Why me?...

Well if I could answer that I'd make myself much more useful by coming up with a cure. Type 1 is an autoimmune disease. No one knows what causes it. There is an element of genetics that pre disposes you to it. But it's not entirely genetic. In a set of identical twins if 1 has type 1 there is only a 50% chance the other will get it, despite having exactly the same genes.

 

[Deleted Account]

I can’t comment on your doses but I can tell you about my experience.
I was diagnosed as t1 15 years ago. Diabetes has not stopped me doing or eating anything and maintaining good control.
I have travelled all over from USA to Uganda to Nepal.
I have sailed, Sky dived, rock climbed, canoed, ...
I have a stressful career and a loving boyfriend.

I started on daily injections with carb counting and, two years ago I changed to a pump.

Diabetes diagnosis is shocking but it is not the end of your life or your love of food.

 

[JoeT1]

Hey catapillar,

I am currently taking 16units of Lantus at 10pm, which may explain why at 6pm onward the following evening I am higher, even though I think I am counting carbs correctly...

Thank you very much for the quick reply. As you can probably tell, after less than 2 weeks of being diagnosed, i'm coming to the stage now where it's frightening me a bit. Your answers are great, and reassuring. I'm early on my road I guess, and a little naive, but also determined and willing to learn.

Have the carbs and cals app, find it very useful. Also like the fact you can add in your own food if not readily available.

 

[JoeT1]

I can’t comment on your doses but I can tell you about my experience.
I was diagnosed as t1 15 years ago. Diabetes has not stopped me doing or eating anything and maintaining good control.
I have travelled all over from USA to Uganda to Nepal.
I have sailed, Sky dived, rock climbed, canoed, ...
I have a stressful career and a loving boyfriend.

I started on daily injections with carb counting and, two years ago I changed to a pump.

Diabetes diagnosis is shocking but it is not the end of your life or your love of food.

Hi Helenaramay,

That really is fantastic to hear. It's everything you want to hear as a newly diagnosed T1.

 

[Scott-C]

@JoeT1 , can't answer all those questions, but, yes, once you get used to how insulin works, you can live a remarkably normal life with few restrictions.

I've been away backpacking for months on end, held down a professional career, go out for a few beers at the weekend etc. etc.

T1 is always there to the extent that I have to think a bit beforehand about how much insulin for each meal, and make sure I carry sweets around with me in case I'm going low, but it's sure as hell not stopped me from doing anything I want to do.

You'll have a few nasty hypos along the way and they're not a barrel of laughs, but all in all, we're pretty lucky to have free access to modern medicines, and there's some interesting things going on at the moment with continuous glucose monitoring which makes life a lot easier.

Am going to tag in @GrantGam and @therower , who have both got positive attitudes to dealing with this thing and will hopefully have some encouraging words.

 

[Daibell]

Hi. Yes, you can lead a pretty normal life. Although T1s can match their insulin to the carbs if you have too many carbs you will gain weight just as you would as non-diabetic so I wouldn't go mad on the carbs. I tend to inject discreetly at the table at restaurants and as my nice DN said 'eyeball the food' to guess the carbs. You soon get better at guessing. Yes, ratios can vary a bit morning to evening. It's important to get the Basal balanced and then find your best ratio(s). I also go to the gym and I inject a bit less when I know I'm going there. Don't forget to tell the DVLA and you MUST test before and during driving.

 

[GrantGam]

Hi All,

Went into hospital a couple of weeks ago (on Tuesday) with a racing heart. After a number of tests it was discovered I am a Type 1 diabetic. I spent the following 3 days in Intensive Care and another 5 in a ward. All a massive shock to me, but also when you add everything up (thirst, urination, feeling down, tired etc etc), all the signs have been there that I have had this for the best part of a year or two...

Came out of hospital on Tuesday, bursting with the want for knowledge and need to get this under control as soon as I can. I am registered for the DAFNE course in September of next year and have purchased the book (Think Like a Pancreas). I am trying to count my carbs to Insulin ratio and so on, am back with my dietician on Tuesday afternoon.

So many questions, so many things I need clarifying and reasoning behind:

Why am I higher in the evenings?
Whats the best amount of carbs for me?
Is there too much Insulin in a day?
Can I live a normal life, eating normally, socially, relationships etc?
Should I really go low carb, or can I stick with eating up to 50-60-70 carbs a meal, 20-30 carbs for snacks etc...
How do people go with restaurants etc
I love food, is this it now?
Is it possible my ratios will be different from morning to evening?
Why me?...

Obviously these questions can't be answered here. I just wanted to introduce myself. I'm a little scared by it all, despite trying to fight that urge to be scared.

Little about me:
5ft 8"
72kg
Active gym goer
Professional Test Engineer
Love Food

Thanks for reading.

Joe

Hi Joe

You've already had excellent answers and input from @Scott-C, @catapillar and @helensaramay - I don't have much to add really.

You've already done what I was going to suggest in ordering 'Think Like A Pancreas'; you'll get almost all the answers you'll ever need in that book. Worth its weight in gold.

One thing I will say, is take things slowly. If you approach diabetes with the mindset that you can beat it by applying an intensive amount of effort as soon as possible, then you have the potential to drive yourself daft. T1 is a marathon, not a sprint. It's also what of those annoying games that you cannot complete, it never has an end and you can never win - you only draw at best... I don't mean to make this gloomy or depressing, because it's not really - but don't be hard on yourself and expect miracles or superb results soon, you'll only disappoint yourself. Relax and take things easy, you've a long time to perfect this

Diabetes isn't a life sentence so don't feel that it is. Your life will change but not necessarily in a bad way. The only real difference I find is that most things need a little more planning than usual; apart from that - life as normal!

All the best Joe, I look forward to seeing you in and around the forum. This place is an excellent source of knowledge and support, certainly for T1's anyhow.

The lovely @Diakat started a good thread today, it's already full of testimonies from diabetics demonstrating how their diabetes hasn't got in the way

http://www.diabetes.co.uk/forum/threads/today-diabetes-did-not-stop-me.128166/#post-1595089

 

[sweetbloodsher]

Hi, Joe. You are going to be scared, confused, depressed some of the time. It's a tricky disease. Normal life? Hmmmmm. Kind of. I spend a lot of energy checking my BS, but I try hard not to let it diminish my life. In fact, you and I both knocked on heaven's door in the ICU, so I'm bound and determined to enjoy as much as I can, as corny as that sounds. I'm way more motivated now. On the bright side, they keep telling me the cure is six years or less away. I highly recommend getting a continuous glucose monitor, esp. if you are exercising a lot; and wear a medical ID thing in case you get woozy while exercising. Read everything you can and keep notes.

 

[JoeT1]

Hi all, thank you for all the kind words and motivation.

I guess the more trial and error with my dietician and so on, the more I'll get it under control.

Currently trying to stick to the lower end of the carb scale, say unit wise 3, 3, 4, 16 Lantus. Not sure if it's so beneficial for me as I may be feeling better at say 4, 5, 7... Something I'll just have to work out

 

[catapillar]

Hi all, thank you for all the kind words and motivation.

I guess the more trial and error with my dietician and so on, the more I'll get it under control.

Currently trying to stick to the lower end of the carb scale, say unit wise 3, 3, 4, 16 Lantus. Not sure if it's so beneficial for me as I may be feeling better at say 4, 5, 7... Something I'll just have to work out

While you are waiting for your DAFNE course you might want to check out the free online NHS carb counting course - https://www.bertieonline.org.uk

 

[JoeT1]

While you are waiting for your DAFNE course you might want to check out the free online NHS carb counting course - https://www.bertieonline.org.uk

Just registered. Sounds good and definitely up for learning as much as possible.

I'm looking forward to getting involved on the forum. It's already giving me great support just knowing it's here when I need it.

 

[therower]

Hi @JoeT1 . Welcome to the forum. Seems I've been tagged in to your thread. Thanks @Scott-C .
Well I've just read all the posts so far and there's nothing else to add , all your questions have been asked by all the great people on the forum.
For me I don't have diabetes. It has me. I'm stronger, wiser and more of a bas**rd than it can ever be.
I don't fight it. I embrace it, I use it to make me a better, stronger more caring person. Together we achieve far more than I would if I wasn't diabetic.
Diabetes makes me eat far healthier than I would have ever done, not a restrictive diet, just a sensible diet.
I train 6 days a week, when every nerve ending is screaming out to stop a set, that's my diabetes crying. It's how I control and punish it. Did a 10k row last weekend, was mental and physically done at 7k if I had stopped my diabetic side kick would have won, so I kept going. It sounds a bit silly I know, but it's me and it.
I never hide it away. It loves the dark and denial. Inject when and where needs be. NEVER in a toilet whilst out and about.
Let people know about the condition bring out into the light.
Be proud to have diabetes.

What I will say is this. Your diabetes is yours and only you will ever fully understand it.
It will evolve and grow over time, you'll look back in years to come and see how things are different from when you first started.
Be wary of its power. It will always be looking to find a weak spot in your armour and try to attack you.
For me diabetes control is 80% mental/ emotional. 15% medication. 5% winging it.
The 5% bit is important. When things go a bit wrong or don't add up, don't go into meltdown, that's what your diabetes wants.
Take a step to the side, re evaluate what's happening, ask for advice and find the solution TRY not to stress.
Be positive in everything you do, diabetes hates positivity.
Everything above and a few other bits have served me well for 27 yrs.
If you need anything else , just ask.
Good luck and let us know how you get on.

 

[JoeT1]

Hey @therower

Thanks for the info, fair play to you, it's a mentality to take it by the scruff of the neck and get on with it. I like that attitude. I am determined to live and enjoy life even more now. Being in ICU made me look at the brighter side of life. Family, friends, dog...I love them all and probably didn't appreciate it to the extent that I should.

Before this, I went through phases of feeling down, anxious about little things. Now, it's time to re-evaluate, take stock and move on and get a hold of this and look at life a little bit more clearly and enjoy the ride a bit more.

Thanks again.

 

[therower]

@JoeT1 . Love is a very strong weapon to have in the arsenal. Learn to use it, especially when diabetes try's to drag you down in to the dark, as it will surely do at some point. You don't have to fight it, just smother it with love. Family ,friends and dog.
For me it's wife, daughters and grandkids. It has no chance of success

 

[Jo_the_boat]

Hi @JoeT1 . Welcome to the forum. Seems I've been tagged in to your thread. Thanks @Scott-C .
Well I've just read all the posts so far and there's nothing else to add , all your questions have been asked by all the great people on the forum.
For me I don't have diabetes. It has me. I'm stronger, wiser and more of a bas**rd than it can ever be.
I don't fight it. I embrace it, I use it to make me a better, stronger more caring person. Together we achieve far more than I would if I wasn't diabetic.
Diabetes makes me eat far healthier than I would have ever done, not a restrictive diet, just a sensible diet.
I train 6 days a week, when every nerve ending is screaming out to stop a set, that's my diabetes crying. It's how I control and punish it. Did a 10k row last weekend, was mental and physically done at 7k if I had stopped my diabetic side kick would have won, so I kept going. It sounds a bit silly I know, but it's me and it.
I never hide it away. It loves the dark and denial. Inject when and where needs be. NEVER in a toilet whilst out and about.
Let people know about the condition bring out into the light.
Be proud to have diabetes.

What I will say is this. Your diabetes is yours and only you will ever fully understand it.
It will evolve and grow over time, you'll look back in years to come and see how things are different from when you first started.
Be wary of its power. It will always be looking to find a weak spot in your armour and try to attack you.
For me diabetes control is 80% mental/ emotional. 15% medication. 5% winging it.
The 5% bit is important. When things go a bit wrong or don't add up, don't go into meltdown, that's what your diabetes wants.
Take a step to the side, re evaluate what's happening, ask for advice and find the solution TRY not to stress.
Be positive in everything you do, diabetes hates positivity.
Everything above and a few other bits have served me well for 27 yrs.
If you need anything else , just ask.
Good luck and let us know how you get on.

That, quite frankly, is a brilliant approach and outlook. Not sure I would have the strength to do that. I might say I do, but I doubt it. Anyhow, good on you.

 

[Tony337]

Hi and welcome
43 years a type 1 here.
Still Laughing loving working and driving and there are people who have had it longer than me on here still leading a "normal " life.

Wishing you all the very best

Tony

 

[JoeT1]

Thanks all once again. I am away this weekend in London at a family wedding, followed by 6days in Spain.

This is where I'm getting nervous, for instance restaurants. Tried to do while pile of digging on foods etc but I'm scared I'll get it badly wrong.

Example is I love salt and pepper spare ribs in this Chinese we go to, but keep getting conflicting figures of carb content online. I guess it's trial and error, I'm just quite early after my diagnosis to be making a lot of errors

 

[Antje77]

If you've gotten this far in just two weeks, you'll get this in no-time. Well, not everyting, because I believe a lifetime isn't enough to get everything right al the time, but you'll become more confident in what you're doing. About the spare-ribs, it's easy: you eat them regularly, so go by trial and error a couple of times and you'll know how much insulin to take for them. Start conservatively, insulin-wise. I really suck at carb-counting (creative cook, just throw in everything you fancy while cooking), and my insulin to carb ratio varies a lot with time of day (more than twice as much insulin for the same food in the morning than in the evening) but I found I'm quite good at insulin-guessing based on previous experiences, and I've only been on mdi for eight months. Lastly, don't be afraid to make mistakes and test a lot! (or get a libre)

 

[JoeT1]

Libre ordered. It's not available on Long Term Illness yet in Ireland, so I am just forking out for now and will look at hopefully the sensors being covered when it is available.

Trial and error seems like it's the way to go, I guess once I know how much I jump/drop in the first meal, i'll take note and adjust for the next time. As you said, conservatively will be how I approach this, rather than going with too much insulin. Carbs and Cals/My fitness pal are really good, anyone use anything else?