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I Need Help

hi when i was first diagnosed i used an insulin to carb ratio of 1 unit insulin to every ten grams of carb luckily for me this hasnt changed but was told 1:10 was a starting point and as time went on needs may change .how do you decide how much insulin to give yourself at each meal do you just guess or do you follow some sort of ratio maybe this could be a starting point because once all your ratios are right things will start to settle .. you really need to get in touch with your diabetes team and get them to come up with some solutions as you cant continue like this . i do hope you get something sorted soon and i wish you the best of luck xx
 
I’d suggest you write all this down for when you do see someone - you’ve written it all beautifully clearly here. I usually hand my consultant a list of issues and requests when I go :)

So in your case, issues would be what you’ve already told us, and requests could be carb counting training, a Libre BG monitoring system and (for example) half unit pens.

I’d second @karen8967 with a beginners ratio of 1:10 as you won’t be honeymooning after 15 years. Look at the total carbohydrate on the packs of the food you eat (or the Tesco/Waitrose/Sainsbury’s sites are good for loose produce), and get a good set of kitchen scales that measures in grams. You can then work out the carb content of your food, and inject the right amount of insulin for it. I still use 1:10 most of the day, and 1:7 in the mornings.

Are you testing regularly?
 
Tarapaige said:
Hi I’m under hospital for the diabetes, but I never have the same doctors and I always have to repeat myself constantly and tell them all of my issues etc.. I’m currently living in Coventry. One of the hardest points is my job as I work with horses so I don’t have set dinner breaks etc so it’s hard to remember to eat/inject.

It so hard because I know most of the issue is my own doing
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No, this isnt your own doing... its from lack of support and continuity of care and being seen as an individual.

Is the a consultant or DSN that you liked from the ones that you have seen?
You can ask for continuity of care and to be seen by someone that you are comfortable with. I know this for a fact, as twice in this new hospital of mine they have tried to palm me of with other consultants. Once I accepted and the consultant was making suggestions that were totally unworkable.. tge next time for a 9 am appt my consultant was visiting wards and they tried to palm me off.. i stood my ground and had to wait 21/2 hours but I will not be seen by anybody else now....

So, if there was a consultant/ dsn that you liked perhaps ask as soon as you sign in that you actually would like to be seen by xxconsukrant. This should be feasible unless consultant on holiday or sick. Then when you see consuktant ask for help and say that you are scared and would like continuiry of care with one consultant (him/her) if it is possible as its important to you. You know this isnt always possible but continuity of care and faining trust and knowledge from one care team, not many is important.

Ask for nurses to over see your new fight to conbat the highs and depression around your diabetes.

Tell them that you accept responsibility for your gaining the knowledge to manage and become an expert but you need their help to give you the tools you need like a DAFNE course.

Quite a few people (me included) can be seen as angry... but actually its fear. It may be as well to acknowledge this to your medical team... I had to. I was angry after a mastectomy went wrong, after my husband was dumped in a corridor and not medically assessed in 8 hours and died in March... but my anger isnt anger... its fear.. fear that I gave trust to others to deal with health issues and the same could happen to others. I cant undo what has happened but I can move forward from it.

The best way to ask for help is to forget the past and get a new starting point, like you have done today.

I too have had depression. At times it can rear its ugly head again, but that too can be helped. It sounds like you like horses and enjoy them. I love my dog too. We have animals that depend upon us. And thats important.

You are young and although older (not any wiser really!!) there is a way to find a new strategy to coping. We will help you through..

If you could gather your blood testing meter and your pens and a bit of paper or a record book to record your things in, thats a start. If you could test regukatly for a day and write down food and injection doses etc and provide some detail to us for a day, that would help us help you too.

You can move forward from this and you will. Believe me...
 
@Tarapaige

Hello Tara and welcome to the Forum :) Here is the Basic Information we give to new members and I hope you will find it useful and interesting. Ask as many questions as you want and someone will help you.


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 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 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.
 
I agree with the things everyone has said, and especially that it’s not your fault.
Get an appointment at the hospital as soon as possible. And expect them to help. That’s what they’re there for, it’s their job.
If you find any of the suggestions and advice the medics give you difficult to interpret at first, then ask them to explain again. Their job is to provide you with good care and to give you the tools to look after yourself well.
They need to be able to respond to each person they see and make sure they’re able to use those tools.
For us that’s knowing how much carbohydrate’s in food and how much we should inject for it. It’s also having the right dose of basal to keep blood sugars in a healthy range. It’s about having regular checks of our HbA1c, our blood pressure, liver and kidney function, foot health, and our eyes.
As for diet and insulin, If you want to start counting how many grams of carbohydrate are in the food you eat then like @Mel dCP says you’ll need to get the scales to measure it on. You can also get a Carbs and Cals which can be downloaded as an app on a smart phone or bought as a book. The app’s updated regularly so I personally prefer it. It’s also more portable. It really helps when you’re working out how much insulin you need. You might need a calculator too.
And remember, you now have a community of fellow T1s who want you to get on top of this and for whom no question’s too daft. We’ve all had to learn, we know what it’s like to get your head round it all and we’re here when you need us.
 
Thank you everybody for all your kinds words help and advice.
I’ve had the two week trail with the Libre and it helped a lot but I just can’t afford the cost of it.
I am going to ring my nurse in the morning and ask about the course and try and get a new appointment at the hospital or possibly look at going to a new clinic as currently I only get an appointment every 6 months and I never see the same person which is really annoying.
Just getting my head around fitting in monitoring a little more would probably be beneficial as well.

Again thank you all very much, I’m going to read through all the comments again and try and take some notes.
 
becca59 said:
Also, I too am interested to know where medical support is obtained as it sounds somewhat lacking.
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I'm in shock (and a little angry) at the lack of care that's been given by the medical profession here. No T1 should be left to go it alone on carb counting, correction doses etc. And it's definitely not the OP's fault, she hasn't been told very basic info that should be available from day 1 to new diabetics. If she's got frequent readings in 20s then she should be a prime candidate for state funded libre.

To @Tarapaige
OK, just looked at your profile, and my guess is that you were diagnosed in early childhood and your parents handled the calculations. You're now an adult and the DNs assume you know what you're doing because you've been diabetic so long but your actual diabetic education has slipped between the cracks (trying to be charitable to the medical profession here.)

So, the first thing, (apologies if you already know this).

I'm assuming you're on a basal/bolus regime, and you inject one (possibly two) doses of tresiba per day, and novorapid before meals. (It's possible that you're still on the old fashioned regime of fixed times and amounts for meals, but you really don't need to be.)
The idea of this is that your tresiba is your basal insulin: it's supposed to keep your blood sugar level when you're not eating. (Even when you're asleep your body still burns sugar, supplied by your liver, and you need insulin to keep that balanced.) When you eat you then inject the novorapid or bolus: in an ideal world you can match this to the amount of food you need and the times and amounts of food are completely flexible. (You can fast all day if you want to by not injecting the novorapid, or have a 2am snack and inject the appropriate amount of novorapid.)
Carb counting: you do this so that you can inject the right amount of novorapid for your meal. Your clinic should give you a ratio which you use to adjust the insulin to the amount of carbs. eg if 1 unit covers 10g carbs, then you inject 5 units for 50g.
Correction factor: Most of us aren't perfect, and we find that our blood sugars go too high occasionally/sometimes/often. This is when you can inject extra insulin. Your diabetic clinic should give you a correction factor for this and you use it to bring your blood sugar down. So if you find your blood sugar is 12 before a meal, and you want it to be 6 before the meal, and your correction factor is 1 unit per 2mmol/L blood sugar, you'd give yourself an extra 3 units of insulin with the food for your meal.

Different people have different ratios for corrections factors and carb counting - your clinic is supposed to tell you what they are. (And yes, a DAPHNE course sounds ideal for you.)

False hypos - if you've been running your blood sugars high for a while, you can feel hypo when your blood sugar is still at normal levels. This will pass as you get more in control of your diabetes.

So.... lots of hugs. You are not alone. Lots of teenaged diabetics have bad control for a while (I certainly did, though in my day there were no glucometers so I had to go by guesswork because I used to get very thirsty). It's never too late to get help to improve your control.
 
The best, briefest breakdown of T1 needs I have read!! @EllieM.

I too also thought that parents or an adult would have been "overseeing" previously and this has left a void of care from medics when turning in to an adult.

Just like to add again, this is not your fault, there has been a gap (again being kind to medics) that has eluded them to fill in helping you.

I am so glad to hear that you are taking the steps to fill this gap yourself.

One thing that you need to do is to get medics on your side.. (sounds silly seems they let gaps in before). So saying to them that you are scared, needing help, and you are willing to learn and want to look after yourself better is a way to get them on your side. Dont go saying to them, that they have let you down, or they have left gaps... as this to them will just put their backs up....

Have you got an Acchuck aviva expert 1/2 unit blood meter? This is what you need to establish better control and quicker... you also need pens that deliver 1/2 unit doses and this will also allow you to fine tune your insulin doses as well in the long term (and short term).

We are right behind you and holding your hand all the way..

Just think when you turn the corner with this then you will be coming back here happier... and thats all we want for you.
 
Tarapaige said:
Thank you everybody for all your kinds words help and advice.
I’ve had the two week trail with the Libre and it helped a lot but I just can’t afford the cost of it.
I am going to ring my nurse in the morning and ask about the course and try and get a new appointment at the hospital or possibly look at going to a new clinic as currently I only get an appointment every 6 months and I never see the same person which is really annoying.
Just getting my head around fitting in monitoring a little more would probably be beneficial as well.

Again thank you all very much, I’m going to read through all the comments again and try and take some notes.
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Another hug, everyone's said the rest. Hug
 
Hi Tara,
I am from Oz and despite having had a busy work life from which I recently retired, I have managed to currently be at 51 years on insulin.
I am not bragging, just saying it is possible. It takes luck, work and support.
When I was struggling I tried to simplify things by eating about the same food and amount for each type of meal. X amount of oats, milk, one egg each breakfast, say 2 sandwiches for lunch, similar dinner menu each night. That way I was fixing on the things, like keeping the stirrups at same length each day until I could work out how the horse was behaving(may the diabetes is a feisty colt?).
If my BSL was high first thing in the morning I would think about raising my long acting dose, say by 20% and keep the Novorapid doses at a set level taken before the 3 meals of a day. (UNLESS I suffered a hypo after a particular meal, in which case I would lower that Novorapid dose next time before the same meal by 20%). So as well as setting the stirrup length you start to adjust the bridle.
If my lunch time was delayed I could usually get away with holding off the Novorapid until I could eat lunch, relying on the Long-acting insulin, like Tresiba to provide a background of insulin until I could eat.
I would try to keep the doses the same for 2 days just to see how things were settling before changing anything further. I would then look at the before breakfast bsl and see whether I needed to up the long-acting dose Tresiba further or not, aiming for something like, less than 10 greater than 5 mmol/l as a final result. or as near to that as possible. But keeping the meals set in amount.
Then when the before breakfast levels were OK I would leave the long-acting insulin(in your case Tresiba) dose at that daily dose and start to adjust the 'before meals' Novorapid doses (assuming that no hypos were happening now after meals) whilst staying on the same amounts of foods for each meal. This is like maybe adjusting your seat on the horse to see what happens to the riding.
I would up the novorapid given before the meal by 20% if the 2 hour post meal reading was >10 mmol/l. It may not be possible to test blood sugars whilst out at work. At least having say, some alcohol-based wash in a small tube could make that task easier, but let the wash dry first !! Keep adjusting 2 days by 2 days (yes, it is a hassle but so is training horses)
The idea is to stop hypos, work out a balance of food vs insulin and have enough insulin on board at times when you are not eating like overnight.
If I knew that a particular day ahead was going to involve a lot more exercise than usual I would consider easing back all doses by 20% for that day.
It would be really great if you could find a DSN would would take interest in what you are doing. With help they or a dietician could help you work out what amount of carbs you are consuming with each meal. That way you could then know how much extra Novorapid to give for having extra or less food in the meal after that injection. A DAFNE course would also help heaps.
Of course the amount of food you consume has to balance out with your weight. Busy, strenuous work burns calories.
Anyway that was my way to balance things out. Remember that human's pancreas glands have evolved of thousands and thousands of years, and here we are as type 1 diabetics trying our best to copy some of what it does in fat less time.
I could not possibly train a horse in a week but if I stick at it, trial and error I can get somewhere close.
Best Wishes and keep posting and reporting on progress. Tame that feisty colt !!
 
Just as a note to above post... tresiba should not initallly be changed at every 2 days. We are told to sit on our hands for 3-5 days
 
Tarapaige said:
I’m new to this page but I literally don’t know where else to turn....

So I’ve been type 1 for 15 years and it’s never been easy, but it just doesn’t seem to be getting any better!
My blood sugars are always high, ALWAYS! And when I try getting them down they go down too low, I’ve told my nurses I don’t understand my regime and how to correct. And they don’t seem to want to help at all! And now if I try to get my blood sugars down I feel so ill and as stupid as it sounds I have gave up trying now I feel like I’m stuck in a massive hole and have no idea how to get out, I’m fed up of feeling constantly depressed...

I take novorapid and tresiba, I just want to know how everybody finds the motivation to keep on top of blood sugars and injection etc. Sometimes I will go days without injecting, yes I know it isn’t good and I know the risks but I just can’t bring myself to have a daily fight with my own body.

It’s now affecting my work and relationships, any help or advice would be amazing

Thank you
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Welcome to the forum.

Firstly don’t give up. We all go thru tough times and feel like it, but dig deep. Everyone here is supportive - I’m fairly new to the forum too.

I’m on Novorapid and Abasaglar. It took me awhile to get my insulin levels right and to be honest I still have to play around with them. In the morning I suffer with something called Dawn Phenomenon which means my levels go up with eating or anything! So I find for every 10 grams of carbs I have I have to inject a minimum of 4 units of Novorapid. But after that it can be 3 units for every 10 grams, although if carb heavy I go back to the 4. You may find that you have to play around till you get the right amount for you but monitor your levels closely while you do.

To correct it’s the amount of insulin you’ve injected including your long acting/100. So 50 units of insulin / 100 would be a correction of 2 units.

Enquiry about going on a course such as ReACT or Dafne.

Keep going and here for support.
 
MissMJ73 said:
To correct it’s the amount of insulin you’ve injected including your long acting/100. So 50 units of insulin / 100 would be a correction of 2 units.
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Very good point but slightly confusing wording.
50/100 = .5 You need half a unit of insulin for each mmol/L you want to bring your blood sugar down by.
 
Tarapaige said:
I’m new to this page but I literally don’t know where else to turn....

So I’ve been type 1 for 15 years and it’s never been easy, but it just doesn’t seem to be getting any better!
My blood sugars are always high, ALWAYS! And when I try getting them down they go down too low, I’ve told my nurses I don’t understand my regime and how to correct. And they don’t seem to want to help at all! And now if I try to get my blood sugars down I feel so ill and as stupid as it sounds I have gave up trying now I feel like I’m stuck in a massive hole and have no idea how to get out, I’m fed up of feeling constantly depressed...

I take novorapid and tresiba, I just want to know how everybody finds the motivation to keep on top of blood sugars and injection etc. Sometimes I will go days without injecting, yes I know it isn’t good and I know the risks but I just can’t bring myself to have a daily fight with my own body.

It’s now affecting my work and relationships, any help or advice would be amazing

Thank you
Click to expand...
I feel exactly the same as you. Constantly high and as soon as I go to correct it either nothing happens or I’m reaching for a redbull because I’m so low. Feeling low in the teens also. On the libre sensor and my graphs are constantly terrible. Have recently kicked myself to exercise more going to about 4-5 classes a week. Can not seem to shift weight at all. Really trying to get myself healthy for my wedding in November. Anybody know anything about the low feelings in the teens? Really interested in finding out how to combat this. Thanks
 
Chlobadger said:
I feel exactly the same as you. Constantly high and as soon as I go to correct it either nothing happens or I’m reaching for a redbull because I’m so low. Feeling low in the teens also. On the libre sensor and my graphs are constantly terrible. Have recently kicked myself to exercise more going to about 4-5 classes a week. Can not seem to shift weight at all. Really trying to get myself healthy for my wedding in November. Anybody know anything about the low feelings in the teens? Really interested in finding out how to combat this. Thanks
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Feeling low in the teens is probably because your body is used to running higher. It's called a false hypo. Gradually getting used to being in the teens then lower will take time but you will feel better for it.
 
EllieM said:
Very good point but slightly confusing wording.
50/100 = .5 You need half a unit of insulin for each mmol/L you want to bring your blood sugar down by.
Click to expand...

That’s how the nurse on the course told us which I thought was confusing too but couldn’t think of another way to say it at the time lol.
 
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