my boyfriend has just found out he has type 1

[lucy j]

Now im going to start this by saying that i've not yet got to terms with the lingo! and my questions might seem quite silly but im going to try my best to explain our situation and hope that you will understand

My boyfriend is 23 and hadn't been feeling well for a couple of weeks so i got him to make an appointment with the doctor, she literally took one look at him and sent him straight to the hospital for tests that was tuesday and he is still in hospital, he was diagnosed with type 1. When he went in his numbers (sorry using the words numbers as im not sure what the word is) were 33 when he went in! he also had 2.5 ketones in his urine. started on insulin injection and throughout the day they tested every hour and it gradually went down when i left him it had gone down to 8. Anyway they tested him this morning and it had shot up to 22, they couldn't understand it so put him on some drip that continuously provides him with steady insulin, his numbers were up and down all day from 24 to 7. When i left him this evening his numbers were at 7.2 and there were no ketones in his urine. My problem is the doctor just seemed so baffled and my boyfriend is worried that if it cant be controlled in hospital were your eating what they give you and doing as your told then how is he going to cope at home?
Im trying to educate myself on type 1 to so if anyone has any book recommendations or anything please share thank you for reading my long and probably confusing post xx

 

[justjay]

Now im going to start this by saying that i've not yet got to terms with the lingo! and my questions might seem quite silly but im going to try my best to explain our situation and hope that you will understand

My boyfriend is 23 and hadn't been feeling well for a couple of weeks so i got him to make an appointment with the doctor, she literally took one look at him and sent him straight to the hospital for tests that was tuesday and he is still in hospital, he was diagnosed with type 1. When he went in his numbers (sorry using the words numbers as im not sure what the word is) were 33 when he went in! he also had 2.5 ketones in his urine. started on insulin injection and throughout the day they tested every hour and it gradually went down when i left him it had gone down to 8. Anyway they tested him this morning and it had shot up to 22, they couldn't understand it so put him on some drip that continuously provides him with steady insulin, his numbers were up and down all day from 24 to 7. When i left him this evening his numbers were at 7.2 and there were no ketones in his urine. My problem is the doctor just seemed so baffled and my boyfriend is worried that if it cant be controlled in hospital were your eating what they give you and doing as your told then how is he going to cope at home?
Im trying to educate myself on type 1 to so if anyone has any book recommendations or anything please share thank you for reading my long and probably confusing post xx

Hi Lucy that's quite a range of numbers! I can't say I'd ever like to have that high reading! At least he's in the right place to start getting it medicated and controlled. I'd say at a guess, it's a bit all over the show even there in hospital as his body might have been without insulin either at all or only some, for some time so once getting some it may have been his system just reacting to it. As I say he's definitely in the right place to get it lowered.

Once they've got it a bit more controlled, it will become easier, and I'm by no means great at control at the moment.

A book to get is one of the "for dummies" series, aptly named diabetes for dummies lol not taking the mick either! Well worth a look, I've got a copy although haven't picked it up in a while.... :!:

Ask as many questions on here as you need to, I've not been a member long but the people here seem great and full of knowledge. Hope he is feeling better soon.

 

[hale710]

Now im going to start this by saying that i've not yet got to terms with the lingo! and my questions might seem quite silly but im going to try my best to explain our situation and hope that you will understand

My boyfriend is 23 and hadn't been feeling well for a couple of weeks so i got him to make an appointment with the doctor, she literally took one look at him and sent him straight to the hospital for tests that was tuesday and he is still in hospital, he was diagnosed with type 1. When he went in his numbers (sorry using the words numbers as im not sure what the word is) were 33 when he went in! he also had 2.5 ketones in his urine. started on insulin injection and throughout the day they tested every hour and it gradually went down when i left him it had gone down to 8. Anyway they tested him this morning and it had shot up to 22, they couldn't understand it so put him on some drip that continuously provides him with steady insulin, his numbers were up and down all day from 24 to 7. When i left him this evening his numbers were at 7.2 and there were no ketones in his urine. My problem is the doctor just seemed so baffled and my boyfriend is worried that if it cant be controlled in hospital were your eating what they give you and doing as your told then how is he going to cope at home?
Im trying to educate myself on type 1 to so if anyone has any book recommendations or anything please share thank you for reading my long and probably confusing post xx

I'm 23 also, diagnosed end of February. I had similar numbers but was not kept in hospital at all, sent home the same day! They WILL get it sorted and then he'll start to control or himself.

A book called "think like a pancreas" is great, I'm reading it right now.

Also, there is no such thing a silly question anywhere - but in particular here! Ask as many as you need!

 

[daisy1]

Hi Lucy and welcome to the forum

There are lots of Type 1s who will be along soon to give you some more specific advice, but in the meantime here is the information we give to new members and I hope you will find it helpful. Carry on asking questions and someone will be able to reply.


BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS

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 30,000 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

Another option is to replace ‘white carbohydrates’ (such as white bread, white rice, white flour etc) with whole grain varieties. The idea behind having whole grain varieties is that the carbohydrates get broken down slower than the white varieties –and these are said to have a lower glycaemic index.
http://www.diabetes.co.uk/food/diabetes ... rains.html

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

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.

 

[Daibell]

Hi. I'm not a Type 1 expert but Type 2 recently started insulin. It can be quite difficult to get the insulin balance right to start with as my nephew with Late onset T1 has found. If your boyfriend has a higher BMI than is best i.e. a bit overweight then it's possible he has some insulin resistance which can add to problems. Reducing weight to a good BMI level will in itself help; but obviously it may be your boyfriend is a slim diabetic! Getting the diet right will help and the NHS can be very bad with diet advice for diabetics so be aware. Keep the carb intake under control and have low-GI carbs whenever you can. This will smooth blood sugar peaks and make it easier to get the insulin balance right; having some fat with the carbs can also help smooth absorption e.g. chips rather than mash which I know goes against popular advice. If your boyfriend is going to go on what is called the Basal/Bolus regime i.e. daily long-acting insulin (Basal) and perhaps several times a day short-acting (Bolus) then normally you try to get the Basal level right first and then adjust the Bolus level to match meal needs. Hopefully the docs will get the balance right as they are obviously trying their best; at least your boyfriend is out of the Ketone danger area. As I'm sure he has been told, the insulin should be matched to typical eating patterns and adjusted to avoid hypos where the blood sugar goes too low. The meter will guide him on this. Do come back with more questions

 

[lucy j]

Hello! thank you all for your replies they have been very helpful! He is home now they still couldn't get his numbers steady but sent him home as he had no ketone's in his urine and this was what they were mostly worried about. He is visiting the specialist tomorrow where i have made him write a list of questions he would like answers to in the mean time i have some

At the moment his numbers are still going up and down between 8 and 19 at one point today! he is taking insulin etc as he has been told before meals and once before bed but there is no change in his numbers (by no change i mean there not within the normal range) his levels seem to be more normal at night when he is using the long lasting insulin, rather than in the day there high before meals and even higher after. Also he's not over weight so im not sure? hes slim and 6ft 5"!
Does it take a while for your body to adjust to having insulin after being without it for maybe a while? Also when 'you' were first diagnosed did it take a while for your body to adjust to it?

The hospital only said if it goes below 4 to come in they didnt mention anything about if it goes to high?! and what is to high?!

Anyway im confusing myself now! lol thank you for all your help it is really appreciated! xx

 

[justjay]

Hello! thank you all for your replies they have been very helpful! He is home now they still couldn't get his numbers steady but sent him home as he had no ketone's in his urine and this was what they were mostly worried about. He is visiting the specialist tomorrow where i have made him write a list of questions he would like answers to in the mean time i have some

At the moment his numbers are still going up and down between 8 and 19 at one point today! he is taking insulin etc as he has been told before meals and once before bed but there is no change in his numbers (by no change i mean there not within the normal range) his levels seem to be more normal at night when he is using the long lasting insulin, rather than in the day there high before meals and even higher after. Also he's not over weight so im not sure? hes slim and 6ft 5"!
Does it take a while for your body to adjust to having insulin after being without it for maybe a while? Also when 'you' were first diagnosed did it take a while for your body to adjust to it?

The hospital only said if it goes below 4 to come in they didnt mention anything about if it goes to high?! and what is to high?!

Anyway im confusing myself now! lol thank you for all your help it is really appreciated! xx

Good to hear he's out and ketone-less! It will take a while to get used to it and I'd think for the body to get used to insulin again! I still struggle after 3 years so although it's not an overnight fix, it does get better. All I'd say about your last but, is if you aren't sure about what is too high or either of you are concerned, just get to the hospital. It's better to be sent away fine than not go in and become ill again.

 

[lucy j]

thank you just jay well when he left hospital it was at 15 and they just said well your seeing your consultant tomorrow so just monitor it and tell him and he might adjust it slightly. Maybe everyone thinks this but i just worry it wont ever be controlled ( i know its only been 3 days) but still. And it gets him down when hes doing as his told and there is still no improvement. Also if you don't mind me asking how much carbs are you meant to eat every meal?

 

[justjay]

thank you just jay well when he left hospital it was at 15 and they just said well your seeing your consultant tomorrow so just monitor it and tell him and he might adjust it slightly. Maybe everyone thinks this but i just worry it wont ever be controlled ( i know its only been 3 days) but still. And it gets him down when hes doing as his told and there is still no improvement. Also if you don't mind me asking how much carbs are you meant to eat every meal?

It is understandable to worry, especially so fresh into it. Some people can get control really quickly and others can't, but the main thing is getting the ball rolling. I understand it getting him down, I get really fed up sometimes, I'll test and see a number I don't want to see, can't explain it or something I get a tad stressed :lol: there's a lot to learn so tell him to just take one day at a time :smile:

That's a good one, erm, lol ill be honest I eat like a horse and always have done since being a kid. I carb count and am on a pump so it varies, particularly with shift work and the like. All the csrb/insulin ratios will be sorted in time lucy try not to worry and you should take it a day at a time too!

 

[Thundercat]

Hi! I just want to pick up on your comment that hospital advised him to go in if his bs drops below 4. Did they tell you that if this happens he needs some fast acting carbs eg jelly babies, coke, lucozade? If he waits to get to hospital he will drop way too low. Sorry if you already know this but the comment made me concerned

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[hale710]

thank you just jay well when he left hospital it was at 15 and they just said well your seeing your consultant tomorrow so just monitor it and tell him and he might adjust it slightly. Maybe everyone thinks this but i just worry it wont ever be controlled ( i know its only been 3 days) but still. And it gets him down when hes doing as his told and there is still no improvement. Also if you don't mind me asking how much carbs are you meant to eat every meal?

It takes a while. I was about a week before I came into "normal range". And as a result I had a hypo at 4.7 because my body wasnt used to it

The amount of carb doesn't matter as such, provided you match the insulin. When he sees his consultant ask for a Referral to a dietician so he can learn how to carb count! It makes things much more flexible

 

[Daibell]

Hi. Glad he's now been able to come back home. I personally wouldn't worry about his blood sugar going occasionally up to perhaps 25'ish after a meal. It's not good but if it's just a spike it won't be causing ketones. I sometimes go into the early 20s if I've had a carb'ish meal but my average is much lower. The ideal is to always stay below 10'ish 2 hours after a meal but I suspect few of us on tablets or insulin achieve this. It's probably worth your boyfriend setting a rough daily carb target and spreading that out during the day. You may be told to have carbs with every meal as the brain needs it for energy. That isn't true but spreading the carbs out will help achieve that insulin balance together with carb counting. Opinions on the daily carb target to set will vary but perhaps something like 200gms or less is a good start. A lower level will help minimise blood sugar swings. The level at which people hypo varies a lot. My overnight BS now I'm on insulin sometimes goes down to 4.0 with no problems but for others they may start to have symptoms

 

[lucy j]

Thank you everyone, he saw a dietician but to be honest she basically said just carry on as normal but don't indulge in all the wrong stuff.
And yes we were told if his bs dropped then to have a coke or something to try pick it back up again and if that didnt work try again in 15mins but I think just because it was newly diagnosed if it dropped they wanted him back in.
He was also told to try and eat 60-70g of carbs per meal, no more no less not sure if this is in their opinion or something he can change when he learns more about diabetes and what works best for him.
It's a lot to take in and I thank you all for your support and help xx


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[hale710]

Thank you everyone, he saw a dietician but to be honest she basically said just carry on as normal but don't indulge in all the wrong stuff.
And yes we were told if his bs dropped then to have a coke or something to try pick it back up again and if that didnt work try again in 15mins but I think just because it was newly diagnosed if it dropped they wanted him back in.
He was also told to try and eat 60-70g of carbs per meal, no more no less not sure if this is in their opinion or something he can change when he learns more about diabetes and what works best for him.
It's a lot to take in and I thank you all for your support and help xx


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I by no means low carb, every meal is pasta or porridge or potatoes. But I only eat about 100g - 120g carb per day!!! She'll have picked 70g as it matches his insulin, but he should be allowed to change his insulin to match what he's going to eat

 

[Daibell]

I agree with hale10. 60-70gm per meal is a bit on the high side. If your boyfriend doesn't gain weight at this level and is active then fine. The figure is probably derived from the view of how many calories we should have each day which some of us think is too many hence the level of obesity. Find a carb level that suits your boyfriend and then match the insulin to that. As always, go for low-GI carbs and this forum has links to more information on that or come back and ask about specific foods.

 

[lucy j]

Thank you all again. I'm just hoping there is a light at the end of this tunnel. He keeps dipping in and out of positive thoughts and then negative thoughts. He believes his life is now over and everything I say is wrong (which I completely understand as its not me dealing with it) how can I best support him? Everything I seem to do say is the wrong thing and I'm running on empty so tired from trying to tell him it's going to be hard but with get better (it will get better right? Lol). Did everyone feel like this at some stage? And does it ever get better? He's convinced he's now going to die literally right now. And the fact he can't eat whatever he wants is droog him mad. Anyway I will cut it there as I could probably go on forever! Lol thanks all xx.


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[lucy j]

Droog! Lol! Obviously meant driving him mad! Xx


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[Daibell]

Hi. Yes, probably most of us had negative feelings when diagnosed i.e. the obvious 'why me?'. It does get better of course, but it takes time. It's probably worth putting the negatives in perspective with what is OK. There is nothing off limits with regard to food with diabetes as long as overall it fits the points made so far on the postings. An occasional bit of excess doesn't matter and the advantage of Type 1 over Type 2 (on tablets) is that you can at least increase the insulin for those special food occasions. Alcohol has only minimal effect on the drugs or diabetes itself, so as long as you don't go mad it's OK. Meat, fish, veg and most fruits are fine and 85% dark chocolate is fine. There is a long list of things you can have but obviously sugar dipped doughnuts are no longer on the menu (sadly!). My wife makes Molly cake (fruit cake Google it) with no sugar-added so you don't have to abstain even from cake but avoid the sugar-laden stuff in the shops which don't need to be sugar laden. I have egg and bacon for breakfast which is no problem and home-made muesli. I could go on. As the insulin becomes balanced then your boyfriend will start to be in control. BTW with regard to the fear of long-term damage to the body thru diabetes, the management of it today with better insulins and injection techniques etc means that as long as BS is kept within a reasonable range most of the time there should be few long-term effects. The ones who do suffer are the overweight types with insulin resistant Type 2 who don't know they have it or ignore it.

 

[etmsreec]

Hiya,
Your boyfriend is lucky to have someone that cares enough about him so stick with it. He's bound to be fed up and angry at this stage, but it will get better.
The insulin doses that he's on now will be a "best educated guess" for his bodyweight, lifestyle and so on. Once the numbers are down to a more sensible level, and once he's more used to diabetes, the real education can start and hopefully get him on a DAFNE course (dosage adjustment for normal eating) so that he can alter his insulin dose for what he wants to eat. The 70g carb meal is easy to start with, as it gives a good target to aim at in food and gives a stable amount of insulin to take.
The "best educated guess" on insulin is important, as there's an interrelationship between the long acting and short acting that he's almost certainly on. The short acting deals with the insulin spike required when one has a meal, the long acting provides a background. Too much short acting and not enough long acting means that things can look normal 2 hours after a meal, but the blood glucose level will rise when the short acting has been used up. Too much long and not enough short will mean it's high a couple of hours after the meal, but more chance of being hypo before the next meal.
Stick with it as you're being advised, and they'll get his doses sorted and he'll be a happier man.
Oh, and test blood glucose as the specialists will be telling him. It's a faff, and a pain, but without the evidence they won't be able to get him sorted!
Steve

 

[martinduncannon]

Hi,

It sounds like you are doing the right things. One thing though: is your boyfriend being treated in an ordinary hospital or in a university hospital (where the most senior doctors above consultant have the title professor)? Some people are suspicious of student doctors but university hospitals are far, far better with better resources and diabetes specialists who do research on diabetes. If you are in London, you could go to St Thomas' or King's College Hospital, for example. Originally I was a patient at a local hospital in the London suburbs but received far better care when my mum had me referred via the GP onto a university hospital in central London.

Martin: type 1 diabetic since early childhood.