Newbie, Please Help!

[LornaFarrell]

Just hoping for some support really.

To go back to the beginning, I had gestational diabetes but it went away when my son was born. When he was 13 weeks old I had an HBA1C and it was OK. So that was that.

Then last week (2 months after that test) I got ill and ended up in hospital with my blood sugar over 20 and ketones 3.7. They took vast amounts of blood for tests (from my arm and both hands) diagnosed type 1, pending further investigation, and sent me away with insulin and a book to read. I was away from home at the time so had to be referred back to my local hospital.

Today I met my local diabetes consultant for the first time. The test results have got lost in the system so we took more blood to check for antibodies. He thinks it may be type 2, or type 1, or maybe type 1 plus insulin resistance. He doesn’t seem to have a reason to suspect type 2 except that I had GD. I’ve been given almost no advice on diet and can’t see a dietician for another 2 weeks. My sugar is consistently over 20, but ketones are normal. I don’t have an appointment to see him again so I’ve no idea when i’ll get an actual diagnosis. HBA1C today was 10.1, from 6.1 two months ago.

I just want to get a diagnosis, get my head round it and get my blood sugar down. I know it won’t be easy but I want to at least start. Right now I’m in limbo, with blood sugar regularly over 25 and no real knowledge of how to get it down. Yet I’m on insulin 4 times a day (70 units in total).

Just feeling lost I guess.

 

[Japes]

Welcome to the forum. I'll tag @daisy1 for her post for newcomers.

I had similar blood sugar levels/ketones when I got put on insulin, a few months ago. It took about 10 days to get me consistently under 10s, and about another week or so to where I wanted to be, which I found frustrating, but doing it too fast can cause more damage. It also takes time to get the ratios correct.

Are you on fixed doses? I was for a month or so until they'd decided I was safe to be let loose adjusting doses. That was also frustrating as I got told "Oh, just eat don't worry about how much just now..." when I queried how many carbs I needed for the dose I was told to take. (Awkward so-and-so, me, who'd learnt more than they wanted me to know at that point.)

Whilst I did get to see a dietician on that first day, (mostly because they were all horrified I'd been eating low carb for the previous two years which had worked really well until it didn't) I didn't really get a lot of useful advice. I've just mostly stuck to home-cooked food, not returning to junk food, and trying to keep carbs portions sensible.

 

[Pipp]

Hello, welcome, @LornaFarrell

Sorry you are having a tough time. It is such a shock to have a diagnosis, and more so when you have just been put on insulin without advice on diet. I don't use insulin, but hopefully someone more knowledgeable will be along with advice and details of similar experience soon. (Ah, just noticed @Japes has posted, with good advice) .
When @daisy1 posts her info, have a read of that, too.

 

[LornaFarrell]

Welcome to the forum. I'll tag @daisy1 for her post for newcomers.

I had similar blood sugar levels/ketones when I got put on insulin, a few months ago. It took about 10 days to get me consistently under 10s, and about another week or so to where I wanted to be, which I found frustrating, but doing it too fast can cause more damage. It also takes time to get the ratios correct.

Are you on fixed doses? I was for a month or so until they'd decided I was safe to be let loose adjusting doses. That was also frustrating as I got told "Oh, just eat don't worry about how much just now..." when I queried how many carbs I needed for the dose I was told to take. (Awkward so-and-so, me, who'd learnt more than they wanted me to know at that point.)

Whilst I did get to see a dietician on that first day, (mostly because they were all horrified I'd been eating low carb for the previous two years which had worked really well until it didn't) I didn't really get a lot of useful advice. I've just mostly stuck to home-cooked food, not returning to junk food, and trying to keep carbs portions sensible.

Hi! Yes, fixed doses for now. 25 Lantus once a day and 15 novorapid witheach meal. It’s now been well over a week and my numbers are as high as they were when I was in hospital, but nobody seems to be bothered.

 

[Pipp]

Lorna, this info maight be of use...

https://www.diabetes.co.uk/forum/threads/basic-information-for-newly-diagnosed-diabetics.26870/

 

[Japes]

Hi! Yes, fixed doses for now. 25 Lantus once a day and 15 novorapid witheach meal. It’s now been well over a week and my numbers are as high as they were when I was in hospital, but nobody seems to be bothered.

I've just looked back at my spreadsheet and I was definitely high teens and 20s for at least 10 days, with 10 - 15s only slowly appearing in the week/10 days after that. The utter excitement of the first 6.8 for months could've been heard for miles!

The impression I also got was no-one other than me seemed bothered by those readings at that stage and I would've been less stressed if someone had explained getting insulin right can take time.

 

[leahkian]

Hi LornaFarrell this is nothing new with people who get diabetes, they are sent home with set doses of insulin and then given some information and told to come back in a couple of weeks. Most of this is down to not having enough nurses and consultants to keep up with the rising number of diabetics, most hospital have diabetic nurses who you can contact on a weekday and the bigger hospitals have a diabetic doctor on call every night. It does take time for blood sugar to get to a normal level but it is very hard when there is no help. If you are worried you can contact 111 and they might give you some advice or may ask you to go to your local hospital to see a doctor. With keytones make sure you try and drink plenty of water as this will help flush them out but if you start to vomit then you need to go to A&E as this is a sign that you need medical help. The last time i had keytones i was put on two infusions at the same time and spent about 14 hours in hospital and was then allowed home but the keytones can stay in your system for up to 48 hours after you leave hospital. It seems to me that the insulin you are taking is not enough but as you have just got diabetes changing the dose is something that the hospital should be doing. Also why you have keytones do not do any exercise as it may increase the level of keytones, i know it sounds stupid that your sugar is hi and telling someone not to exercise. If it was me i would phone 111 and see what advice that they give you, it may put your mind at ease as stress can also make your sugar go up but any sign of vomiting then you need to be seen asap. Hope things get better but there are always people who can try to help you

 

[daisy1]

@LornaFarrell

Hello Lorna 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 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 well over 235,000 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 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. Most of these are 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.