Hubby newly diagnosed type 1- help

Hunnidew

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Hi all..

Hoping to get some advice.. Hubby was diagnosed 3 weeks ago with type 1... Ketones at 4.8 n was had dka.. Was in hospital for a few days but is now home.. He feels so ill all the time.. Constant nausea, some days worse than others and worse when he eats.. He also has a constant headache.. He's had 3 hypo's in the last 4 days but then other times his sugar levels are around 15.. They are like a yoyo! He takes 10 insulin slow release morning and night.. And 8 insulin before food.. He's very down about it all.. Mainly because of the nausea.. Sickness tablets don't take it off.. His ketones went but today are at 0.2! Anyone got some advice or reassurance.. Hate seeing him like this :(
 

azure

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Welcome :) Let me tag @daisy1 to provide some info for you and your husband.

His high blood sugars could be the reason he's feeling nauseous. Does he count carbs when he eats?
 
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Hunnidew

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Welcome :) Let me tag @daisy1 to provide some info for you and your husband.

His high blood sugars could be the reason he's feeling nauseous. Does he count carbs when he eats?

No, he's not been shown that yet.. He's got an appointment in a couple of weeks with the dietician but even when his sugars are within the normal range he still feels so nauseous.. I just don't know what to do to help him.. Is the nausea normal? Will it go? Can insulin cause it? So many questions, I'm sorry.. Just worried about him..
 

azure

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I've never heard of insulin causing nausea, but i suppose in theory it's possible if he had an intolerance of the particular insulin he's been prescribed, but that would be very rare. It's more likely his blood sugars are making him feel ill. 15 is high. The headache could be caused by many things, but dehydration may be one possible cause. Make sure he's drinking plenty of water.

Carb counting is crucial to control Type 1. Basically, you count the carbs in a meal and that tells you how much insulin to have for that meal (a very basic description there). I'd guess the fixed doses of insulin your husband is taking don't always suit what he eats.

How much of the day would you say that his sugars are in the normal range?

Edited to add that if he continues to have ketones then you may need to get medical advice to make sure he's ok.
 

azure

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If he's still feeling unwell, give your doctor or the diabetes nurse a call tomorrow. If you and he are able, make some notes before you call eg what his blood tests have been, ketone results and what he's been eating.

I'm sure he'll be feeling better soon once his diabetes becomes mo controlled. It does take a fe weeks to get things sorted.
 
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Hunnidew

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Thank you for helping! I really appreciate it! I'll give u a breakdown of the last few days

Date Before bf Bf lun Bf t. Bf bed
27th. 12.2. 9.1. 9.9. 7.6
28th. 11.1. 17.1. 19.1. 7.5
29th. 11.5. 7.2. 15.6. 12
30th. 10.8. 4.9. 7.6. 14.1
31st. 10.1. 6.1. 11.1. 14

Haven't put all of them on there cause he's taken it a few times when he's had a hypo - it seems that when he's levels drop below 5 he starts shaking and sweating.. Sorry he takes 12 slow release and 10 before meals..
 

donnellysdogs

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0.2 is normal for ketones...
I would suggest phoning the DSN tomorrow. All hospital clinics should have a phone number for the diabetes nurses at least.

The swings in levels won't be helping to be honest. If these are happening quite quickly ie within 2hrs of being high then levels are plummeting then this can well cause odd feelings.

I know you are saying about nausea but is partner actually being sick or is he having any trouble with stomach and bowel at all? Sorry to ask...

Feelings of nausea even at normal levels may be because his body is still returning to a normal level andthis affects some people differently. I do know of one gentleman that has been high for a while and complains of feeling ill when his levels are below 8.0.

However, keep testing for ketones. Your partner must not get dehydrated so water is essential.

If in any doubt phone 111 tonight for advice but if not make sure that the hospital is consulted tomorrow
Morning 1st thing.
 
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donnellysdogs

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What times has he been under 4.0? This is officially the hypo limit.. Under four and could be on the floor is my motto!

It sounds as uf he is getting used to lower levels and the few drops are maybe affecting him more because the vast majority of the readings you have listed are high.
 
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azure

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Thank you for helping! I really appreciate it! I'll give u a breakdown of the last few days

Date Before bf Bf lun Bf t. Bf bed
27th. 12.2. 9.1. 9.9. 7.6
28th. 11.1. 17.1. 19.1. 7.5
29th. 11.5. 7.2. 15.6. 12
30th. 10.8. 4.9. 7.6. 14.1
31st. 10.1. 6.1. 11.1. 14

Haven't put all of them on there cause he's taken it a few times when he's had a hypo - it seems that when he's levels drop below 5 he starts shaking and sweating.. Sorry he takes 12 slow release and 10 before meals..

Some of those are high, but there are some ok results there too. I'd guess his insulin just needs a bit of tweaking by the doctor eg the slow release one so that he wakes up with lower blood sugars.

If he can, it may also be useful to test two hours after meals (so if he has breakfast at 8am, test at 10am). This shows how his pre-meal insulin is working.

It's interesting that he had that high before lunch on the 28th. Can you think of any reason for that? Did he have anything different for breakfast or did he have a hypo that he treated and then his blood sugar went high?
 
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Hunnidew

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0.2 is normal for ketones...
I would suggest phoning the DSN tomorrow. All hospital clinics should have a phone number for the diabetes nurses at least.

The swings in levels won't be helping to be honest. If these are happening quite quickly ie within 2hrs of being high then levels are plummeting then this can well cause odd feelings.

I know you are saying about nausea but is partner actually being sick or is he having any trouble with stomach and bowel at all? Sorry to ask...

Feelings of nausea even at normal levels may be because his body is still returning to a normal level andthis affects some people differently. I do know of one gentleman that has been high for a while and complains of feeling ill when his levels are below 8.0.

However, keep testing for ketones. Your partner must not get dehydrated so water is essential.

If in any doubt phone 111 tonight for advice but if not make sure that the hospital is consulted tomorrow
Morning 1st thing.

Thank you for your advice.. He is going to ring the diabetes team tomo morning.. He is drinking lots of water.. I know there is no quick fix unfortunately, he's just finding it hard, especially the nausea.. I think he thinks that he's always going to feel this way.. It's hard to watch him go through.. We have 4 young children so things are quite manic! He's not actually been sick yet and I don't think he's having any trouble with his stomach or bowels.. He's not sleeping very well..he gets so tired but just can't sleep..
 

azure

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It won't always be like that - please assure him of that. Once he gets things sorted, he'll feel a whole lot better.

Diabetes is a massive shock to start with, and often by the time you're diagnosed you're quite ill. So it takes a while to recover from that and further time to get on track with the diabetes control. But once that's done, he should be fine.
 
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Hunnidew

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Some of those are high, but there are some ok results there too. I'd guess his insulin just needs a bit of tweaking by the doctor eg the slow release one so that he wakes up with lower blood sugars.

If he can, it may also be useful to test two hours after meals (so if he has breakfast at 8am, test at 10am). This shows how his pre-meal insulin is working.

It's interesting that he had that high before lunch on the 28th. Can you think of any reason for that? Did he have anything different for breakfast or did he have a hypo that he treated and then his blood sugar went high?

I think we put that down to having white bread.. Bacon sandwich and then he had soup with white bread for lunch.. He now eats brown bread and it seems to have helped???
 

Hunnidew

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It won't always be like that - please assure him of that. Once he gets things sorted, he'll feel a whole lot better.

Diabetes is a massive shock to start with, and often by the time you're diagnosed you're quite ill. So it takes a while to recover from that and further time to get on track with the diabetes control. But once that's done, he should be fine.

Thank you so much.. I shall pass on all the information... What a fantastic set of people you all are! Can't thank you enough.. You have been really helpful and put my mind at ease..
 
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Hunnidew

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What times has he been under 4.0? This is officially the hypo limit.. Under four and could be on the floor is my motto!

It sounds as uf he is getting used to lower levels and the few drops are maybe affecting him more because the vast majority of the readings you have listed are high.

I think he's actually only been under 4 once.. But when he gets below 5 he feels like he's having one.. I think u r right, i think his body needs to get used to being 'normal' again.. Thank you for all your help and advice.. I really appreciate it! Has been really helpful
 
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donnellysdogs

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Azure is absolutely right... Believe us when his levels become less swinging he will start to feel less tired, less nauseous etc..
You must also be feeling exhausted with 4 young children.

It is good to have tests 2 hours after meals because you will find out which foods sends partner up higher after eating...

You are absolutely right that there isn't a quick fix. Well done on ensuring water is being drunk. With levels above 12.0 this is vitally important.

It is great to see such a caring, concerned partner on here.

We are not medically qualified so can only give you advice on our experiences. I been T1 30 years+ but it doesn't make me perfect. I still learn from orhers everyday.

However, your partner is still early days and levels above 12.0 can make you feel like **** to be honest and then at getting drops occasionally can be also making him feel odd.

Not meaning to be personal but is he working or sugned off sick etc? Just to sort of getting a feel for how you all are coping on a daily basis, not for being nosey....
 
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noblehead

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Hi @Hunnidew and welcome to the forum.

Do ring his diabetes team in the morning and ask if he can come in to see them some time this week, just be sure that he keeps a detailed diary of bg readings, food eaten and exercise so that they can advise further.

As Azure alludes to earlier, the first few weeks are by far the worst but once he gets into a routine and his bg levels settle down he will feel so much better in himself, good luck and hope all works out well.
 
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daisy1

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@Hunnidew

Hello and welcome to the forum :) Here is the information we give to new members and I hope this will help you to help your husband. You have received some really good advice here and will get more - just ask questions and someone will help.


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 over 150,000 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-and-whole-grains.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 bloodglucose 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.
 

daisy1

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@Hunnidew

Hello and welcome to the forum :) Here is the information we give to new members and I hope this will help you to help your husband. You have received some really good advice here and will get more - just ask questions and someone will help.


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 over 150,000 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-and-whole-grains.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 bloodglucose 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.
 
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AndyS

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Hi Hunniudew,

As has been said the first few weeks can take a bit of getting used to. The first 3 or 4 weeks after I was diagnosed I would start feeling hypo when my sugars were around 8. Also the yo-yoing of his levels will probably be wiping him out too.

Something not to be underestimated is the mental and emotional toll this is having on him. It is a hell of a lot to take in very quickly and that in and of itself can cause depression and certainly not helping how he feels.
I don't recall seeing what long acting insulin he said he was on. Given you mentioned 2 doses I assume Levemir perhaps. Some people do have intolerances to some insulin analogs. In my case I found that Lantus didn't work for me since it didn't last and it really messed with my energy levels. Other have found the opposite.

According to the recently published NICE guidelines for T1's your hubby should be offered some form of structured education, life DAFNE, within 12 (18 at the most) moths of diagnosis. I highly recommend he ask about this as it will really help him understand how to manage the condition better. There is no quick fix and there will be good and bad days but once he settles down into a pattern life will get back to normal.

If you want a jump start on carb counting so that you can get a better handle on matching insulin to food and also correction doses (adding and subtracting) have a look at the BDEC course: http://bdec-e-learning.com/ which has quite a few similarities to DAFNE and certainly got me started.

Also if you can convince him to sign up to the forum as well that may help him a lot too since we are all in the same boat and the amount of experience on offer here is simply awesome. It is also nice to know you are not alone in all this.

Best of luck and hope he starts to feel better soon.

/A
 
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Jennofspades

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10 units sounds like a lot. That will probably be bringing him down too much hence the yoyo-ing. Hope things are a bit better now.