Type 1: Newly diagnosed any advice

[kellie lees]

My husband has just found out he has type 1 diabetes i just wanted to talk to people who are living with it and ask can he lead a long normal life? The diabetes nurse has been great but then we met with our GP who told us my husband (fit healthy 30 year old) would need to take statins and would need to take loads of other tablets as well as the insulin to ensure he's ok in 20 years time as there's a high high chance he'll have a heart attack? This felt very negative to us as we had originally felt like if he can control it with his insulin and keep his levels where they should be - yes it would be hard and we'd have to adjust - but he could carry on as normal!!?!

 

[daisyduck]

Hmm. Your GP sounds like a bundle of laughs !
Type 1's can and do live long and happy lives. there are some old timers on here.
My hubby has type one and will be 77 in a few months.
There is loads of great information on these forums. Don't be afraid to ask any questions, there is always someone who will help.
I'll tag @daisy1 who has lots of info for newbies

 

[azure]

What a depressing message from his GP! There are people here who've lived with diabetes for decades, and there was a recent news story about a man who'd lived with it for 80 years!

Yes, it's important for your husband to keep good control, but he shouldn't let Type 1 stop him doing anything.

 

[Juicyj]

My husband has just found out he has type 1 diabetes i just wanted to talk to people who are living with it and ask can he lead a long normal life? The diabetes nurse has been great but then we met with our GP who told us my husband (fit healthy 30 year old) would need to take statins and would need to take loads of other tablets as well as the insulin to ensure he's ok in 20 years time as there's a high high chance he'll have a heart attack? This felt very negative to us as we had originally felt like if he can control it with his insulin and keep his levels where they should be - yes it would be hard and we'd have to adjust - but he could carry on as normal!!?!

Hi @kellie lees Welcome to the site

He can absolutely live a normal life, however with a few modifications as there is something else to think about and plan for now. I must admit your GP should not be scaremongering you though, many of us live on insulin alone and it does the job just fine, giving negative advice so early on in diagnosis when there is no reason to is not necessary. We are lucky to live in an age where technology is helping us in so many ways, from phone apps, pumping insulin to continuous glucose monitors there are many tools out there to help keep blood glucose levels in check. It would be good if he could join the site too as i'm sure he will have many questions. The best advice I can possibly offer is to get a copy of 'Think like a pancreas' download 'carbs and cals' on the phone and learn as much as possible, there will come a time when your knowledge will exceed that of your GPs and that is purely through living with this condition, ask away too, lots of type 1's here who can help support you

 

[noblehead]

i just wanted to talk to people who are living with it and ask can he lead a long normal life?

Of course he can, the type 1 members here are prove of that

Talk about pessimistic, his Dr is painting a picture of the worst case scenario and I would stick to the advice of his diabetes team if I were him.

As @Juicyj says, do get him to join the forum, we are a friendly bunch who try to help & support one-another. Best wishes.

 

[kellie lees]

Thank you all so much; it's very reassuring to hear!! He was only diagnosed two weeks ago so he's just adjusting and trying to get on with it. After a short spell in hospital he's managed to get his levels down and consistent which is great. He isn't carb counting yet though so that's the next thing to figure out. Should his level be about 6-8 before bed and then 5-7 throughout the day? He is very active so we know that he will have to alter his insulin dependent on the exercise that he does but we are hoping we will learn this along the way!! If his blood sugar is at 5.6 or something before bed should he have a snack to make sure he doesn't go lower in the night? Sorry if at the moment we don't make any sense!!!

 

[kev1]

Like the others who have replied to you, the answer is definitely yes! There is a lot of shared information and experience from members of this forum and a lot of encouragement when times seem difficult. Don't be afraid to ask even if you think it's a daft question - we've all probably wanted to ask the same one at some point or other.
'Think like a Pancreas' is a really good book and well worth a read. A Type 1 has climbed Everest, so don't let your GP tell your husband he can't do this or that;- I used to get frustrated with Balance magazine years ago, there would always be some article on what you should avoid doing, so I ignored it. Read as much as possible, it is hard work but you can achieve so much with a bit of understanding. Best wishes.

 

[Shiba Park]

My husband has just found out he has type 1 diabetes i just wanted to talk to people who are living with it and ask can he lead a long normal life? The diabetes nurse has been great but then we met with our GP who told us my husband (fit healthy 30 year old) would need to take statins and would need to take loads of other tablets as well as the insulin to ensure he's ok in 20 years time as there's a high high chance he'll have a heart attack? This felt very negative to us as we had originally felt like if he can control it with his insulin and keep his levels where they should be - yes it would be hard and we'd have to adjust - but he could carry on as normal!!?!

With the best will in the world, it's not humanly possible for a GP to know everything! Unless your GP has a specific interest in diabetes he's not going to know much about type 1 because he will rarely encounter it... to put it in perspective, my endocrinologist says his patients are the experts not him! Push for an appointment at the endocrinology dept to get started on the right path and access to REALLY informed doctors and nurses.

I know I'm a bit of a newbie to all this - I'm about 8 months ahead of your husband - but learning to carb count has given a good foundation. I know I can't do everything I used to without a bit of planning, but when I want to do something new I've learnt (partly inspired from this forum) I just need to think through how to do it.

I've got a few more miles on the clock than your husband and don't need any of the other medications he has been offered. Frankly just adapting to insulin and recovering from the lack of it is enough for the time being. Maybe there might be a benefit from them but I would think that perhaps save them for another day? But by far the best thing he can do is have reasonable control of his bg levels. And from sincere and personal experience, a supportive spouse like you clearly are is MUCH more effective than any other medication.

Finally, while it seems a huge mountain right now, remember it gets better as each day passes.

Shiba.

 

[Nidge247]

My husband has just found out he has type 1 diabetes i just wanted to talk to people who are living with it and ask can he lead a long normal life? The diabetes nurse has been great but then we met with our GP who told us my husband (fit healthy 30 year old) would need to take statins and would need to take loads of other tablets as well as the insulin to ensure he's ok in 20 years time as there's a high high chance he'll have a heart attack? This felt very negative to us as we had originally felt like if he can control it with his insulin and keep his levels where they should be - yes it would be hard and we'd have to adjust - but he could carry on as normal!!?!

Hi @kellie lees welcome to the forum.

Remember that your GP is a General Practitioner, and not necessarily a diabetes expert, so there will be times you need to speak to folks with more knowledge and experience. I must admit I did smile when reading this part of your post, as my GP told me sternly at diagnosis that I would need to see him every month for the rest of my life - I thought at the time "that's either a lot of appointments, or a very short life!" Just so you have reference - I haven't seen him for the past 18 months! (Still, in his defence I WAS very ill way back then.)

As others have already said, read lots and soak up the info. Come on the forums and ask plenty of questions. Learn how to carb count - good books to help are Carbs n Cals, Think Like a Pancreas, and Dr Bernstein's Diabetes Solution.

I can heartily advocate changing to a low carb high fat (LCHF) lifestyle - it's made a huge improvement to my life, and I'm currently off ALL insulin medication. Statins work for some; they didn't for me, so I avoid them now at all costs.

As you will hear, there are lots of T1's around who are living their lives to the full; as well as many fine folk on here, our current PM Theresa May is T1, as is actress Halle Berry, TV presenter Dom Littlewood, and rock musician Bret Michaels.

So test, test, test, and exercise plenty (using LCHF will give you loads of energy). Keep those levels as steady as possible, and reap the rewards. Remember; diabetes is just a condition, it's often other people that are the problem! Keep positive

 

[Robinredbreast]

Hi and welcome to the forum, you have had some great advice and support from members, there is such a lot to get your head around and it could be worrying and scary, but will get a little easier with time. Love and support from you as his partner is half the battle, good luck and all the best to you and your hubby ( btw I was 31 when diagnosed)

 

[kellie lees]

Thank you!! The book "think like a pancreas" came through our post
Box yesterday so hopefully we will crack on with reading that!! We have the carbs and cals book also but at the moment we aren't sure what we are doing!!! If a meal is 80g of carbs that's 8 units of insulin?? As 10g = 1 unit - but then that would be dependent on his BS before eating? This is where we are stuck!!
At the moment in the day my husbands levels are between 5 and 7 which is good but in the mornings he's still sometimes at 8 (this has come down hugely since being diagnosed) so we feel we are on the right tracks! The thing is snacking and portion size I think my husband is 6ft4 he's slim BUT he eats like a horse and I think may be the hardest thing for him to readjust so any good snacks people can advice?
I also read lots of herbs and spices just help with keeping blood sugar down??
My husband is going to start doing cross fit has anybody with type 1 done this specific exercise regime?
Thank you

 

[azure]

Hi @kellie lees

First thing to say is that your husband doesn't need to starve himself - he just needs to eat like a thoughtful, pre-prepared horse

The 1 unit to 10g is only a rough starting place. Your husband's ratios may vary - and they may also vary meal to meal eg 1:10 to breakfast, 1:15 to lunch, etc (just examples).

The important thing to understand with Type 1 is that there's no magic formula. For many conditions, the doctor tells you what to do and how much meds to take, you do it, and everything's fine. Type 1 requires more input and more adjustment from the person with Type 1 on a continuing basis.

Work your way through Think Like A Pancreas slowly. It's a book your husband will refer to over the years so not something that can be taken in in one read.

If your husband is unsure of his ratio(s), he should check with his DSN.

 

[noblehead]

This is where we are stuck!!
At the moment in the day my husbands levels are between 5 and 7 which is good but in the mornings he's still sometimes at 8 (this has come down hugely since being diagnosed) so we feel we are on the right tracks!

For someone newly diagnosed those are excellent bg levels, all he has to do is keep a bg diary and keep in contact with his diabetes team who will advise him on adjusting his insulin (both basal & bolus doses) and hopefully in time will teach him how to work out his correction dose, but almost certainly your both on the right track

btw, I wouldn't look into herbs and spices as a means to control his diabetes, the web is full of false promises so you have to be very wary, besides for the time-being he has no need to look for them as he is doing just fine.

 

[daisy1]

@kellie lees

Hello Kellie and welcome to the forum Here is the basic information we give to new members and I hope you will find it useful. Ask as many questions as you want and someone will be able to help.


BASIC INFORMATION FOR NEW MEMBERS


Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 147,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes.

Over 145,000 people have taken part in the Low Carb Program - a free 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic.

Note: This post has been edited from Sue/Ken's post to include up to date information.

Take part in Diabetes.co.uk digital education programs and improve your understanding. They're all free.

• Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why
• Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.