Not very happy .....small rant!

[SueJB]

I need a little rant. This morning, I got up early to go for an appointment with the diabetic specialist nurse. She asked how I was, asked how my diabetes was noted down 10 BG readings. She said they were fine (4-7.4mmols) but I've worked out that the average is around 6. So I asked what range I should be aiming for and she said what I was doing was fine and to keep it under 10. I asked what should I do if it went above 10 and was given a nice clear answer. If it's consistently over 10 for 48hrs to phone for advice. I asked her what range of carbs I should try to limit myself to and she said "We like people to take ownership of their diabetes" My question is, how can I own my diabetes when I'm not being given any information I can use? Since being diagnosed in Aug, the main support and information has come from this wonderful site and warm people. Feeling really fed up and very frustrated. Sorry for the ranting.

 

[Juicyj]

Hi @SueJB personally I try and take a deep breath when I am told something by a nurse/consultant who is telling me something against my intuition or which doesn't accurately answer my question and it's easy to feel disappointed and frustrated so I get your rant completely.

It's up to you if you decide to limit your carbs, the 'professionals' see no reason why a type 1 would need to limit their carb intake when they can take insulin to manage it. I attended DAFNE with some other t1's who managed perfectly to juggle their insulin intake to suit their diet and some people can do, as long as you're in range which you are, then you don't need to think about reducing your carbs. If I am running high then yes I do restrict my carbs, no point carb loading on a high BG as it will take longer to get back in range. What's is really important is to know your correction calculation to bring your BG levels back into range if you do run high, do you know this ?

 

[Daibell]

Hi @SueJB personally I try and take a deep breath when I am told something by a nurse/consultant who is telling me something against my intuition or which doesn't accurately answer my question and it's easy to feel disappointed and frustrated so I get your rant completely.

It's up to you if you decide to limit your carbs, the 'professionals' see no reason why a type 1 would need to limit their carb intake when they can take insulin to manage it. I attended DAFNE with some other t1's who managed perfectly to juggle their insulin intake to suit their diet and some people can do, as long as you're in range which you are, then you don't need to think about reducing your carbs. If I am running high then yes I do restrict my carbs, no point carb loading on a high BG as it will take longer to get back in range. What's is really important is to know your correction calculation to bring your BG levels back into range if you do run high, do you know this ?

Sadly, the 'professionals' don't always tell you that you can have as many carbs as you like when matched with insulin but you may gain weight. I limit my carbs to keep my weight and BMI in a good area.

 

[AdamJames]

My question is, how can I own my diabetes when I'm not being given any information I can use? Since being diagnosed in Aug, the main support and information has come from this wonderful site and warm people.

As I read the question, I was thinking of the exact same answer you wrote immediately afterwards!

I'd be tempted, not necessarily out of anger but just to take her / her practice at face value, to print and take along a flyer with this site's URL on it next time you visit this specialist. Ask her if she wouldn't mind displaying it in prominent view somewhere on the premises, to help people take ownership of their diabetes.

If she refuses on the grounds that she doesn't feel she can endorse an external source of information, then you can ask her what exactly she means by taking ownership. If she accepts, then you've probably just helped a lot of people get better.

 

[SueJB]

Hi @SueJB personally I try and take a deep breath when I am told something by a nurse/consultant who is telling me something against my intuition or which doesn't accurately answer my question and it's easy to feel disappointed and frustrated so I get your rant completely.

It's up to you if you decide to limit your carbs, the 'professionals' see no reason why a type 1 would need to limit their carb intake when they can take insulin to manage it. I attended DAFNE with some other t1's who managed perfectly to juggle their insulin intake to suit their diet and some people can do, as long as you're in range which you are, then you don't need to think about reducing your carbs. If I am running high then yes I do restrict my carbs, no point carb loading on a high BG as it will take longer to get back in range. What's is really important is to know your correction calculation to bring your BG levels back into range if you do run high, do you know this ?

Thanks Juicyj, big and deep breath taken. The problem is in the wording. You talk of limiting carbs, great but to what? also within range .. that's great but what is the range? bring your BG back into range... fine but what is the range, running high, testrict carbs... but what is high? This is exactly why I'm frustrated as I have no bench mark to start from

 

[SueJB]

Sadly, the 'professionals' don't always tell you that you can have as many carbs as you like when matched with insulin but you may gain weight. I limit my carbs to keep my weight and BMI in a good area.

Hi and thanks
What does limiting your carbs actually mean? Do you have a bench mark?

 

[SueJB]

As I read the question, I was thinking of the exact same answer you wrote immediately afterwards!

I'd be tempted, not necessarily out of anger but just to take her / her practice at face value, to print and take along a flyer with this site's URL on it next time you visit this specialist. Ask her if she wouldn't mind displaying it in prominent view somewhere on the premises, to help people take ownership of their diabetes.

If she refuses on the grounds that she doesn't feel she can endorse an external source of information, then you can ask her what exactly she means by taking ownership. If she accepts, then you've probably just helped a lot of people get better.

Thanks, it's good not to feel like an utter ar.......... I have to visit a specialist unit in the hospital, it's not just my local health centre so I was expecting that this dedicated unit that only deals with diabetes should be up front and knowledgeable rather than feeling I've been fobbed off with "ownership"

 

[Fearless36]

Hi Sue - don't worry we've all been there and believe me I've reacted very badly at times when I've been faced with a "superior being" like that nurse. I've even at times put a formal complaint in writing to the head of the hospital for that lack of help. You are not a qualified doctor and so you are entitled to ask for help and feedback in relation to this or any condition you suffer from. Its probably ignorance on her part that they didn't know the answer to but its no excuse at all. I'd actually give her feedback next time and also the doctor you see at the unit - because responses like that won't help at all.

 

[SueJB]

Hi Sue - don't worry we've all been there and believe me I've reacted very badly at times when I've been faced with a "superior being" like that nurse. I've even at times put a formal complaint in writing to the head of the hospital for that lack of help. You are not a qualified doctor and so you are entitled to ask for help and feedback in relation to this or any condition you suffer from. Its probably ignorance on her part that they didn't know the answer to but its no excuse at all. I'd actually give her feedback next time and also the doctor you see at the unit - because responses like that won't help at all.

Hi and thanks. She wasn't superior but either she was not well-informed or not willing to share the secrets... I felt it was both. I've got a planned meeting with the dietician in Jan and the consultant in March. In the mean time, I'm just guessing what to do. The blind leading the blind spings to mind

 

[Resurgam]

Something else no one seems to be told - eating bready starchy sugary stuff will make you feel rather lacking, tend to put on weight, feel sleepy after meals - often have no energy despite it being 'the source of energy' - and eating a fad diet full of light fresh veges low sugar fruits (which they were before they were altered by selective breeding) and generally counting the carbs but not bothering with the protein and fat numbers and suddenly there's a spring in the step and a lot more smiling.
I have never been able to maintain my weight eating 'normal' amounts of carbs.

 

[TheBigNewt]

Sounds pretty reasonable to me for a fairly new diabetic. Eventually you'll learn to inject a little Novorapid to correct a high reading. You're doing pretty well compared to a lot of people around here I'd say.

 

[SueJB]

Something else no one seems to be told - eating bready starchy sugary stuff will make you feel rather lacking, tend to put on weight, feel sleepy after meals - often have no energy despite it being 'the source of energy' - and eating a fad diet full of light fresh veges low sugar fruits (which they were before they were altered by selective breeding) and generally counting the carbs but not bothering with the protein and fat numbers and suddenly there's a spring in the step and a lot more smiling.
I have never been able to maintain my weight eating 'normal' amounts of carbs.

Thanks,I thinkbut not sure what the overall message is.I think, but am in no way sure that type1 and 2 are not always the same

 

[catapillar]

Thanks Juicyj, big and deep breath taken. The problem is in the wording. You talk of limiting carbs, great but to what? also within range .. that's great but what is the range? bring your BG back into range... fine but what is the range, running high, testrict carbs... but what is high? This is exactly why I'm frustrated as I have no bench mark to start from

The DAFNE ranges are to aim to be:

• 5.5 - 7.5 before breakfast
• 4.5 - 7.5 before other meals
• 6.5 - 8.0 before bed.

The answer to your question to the nurse

I asked her what range of carbs I should try to limit myself to

Is, there isn't an answer. Type 1 is not managed by restricting carbs. It is managed by matching your insulin to the carbs you eat. If you want to eat millions of carbs and take a tonne of insulin to deal with it, fine. Rather obviously, just like anyone else eating millions of carbs that will probably cause weight gain though. The simple fact is there is no guideline amount of carbs to eat because that isn't how type 1 is managed.

 

[Juicyj]

Hi @SueJB It would be a good idea to get your nurse to get you onto the DAFNE course, so ask them about this when you next see them, the course itself is empowering and by the point you are signed up for the course you will have lots more experience as well as questions to follow up with, it will also teach you that you can eat what you want as long as the insulin matches the carbs.

 

[SueJB]

Sounds pretty reasonable to me for a fairly new diabetic. Eventually you'll learn to inject a little Novorapid to correct a high reading. You're doing pretty well compared to a lot of people around here I'd say.

Hi and thanks for your support.
It's quite surprising that I keep reading high/ low as if these are universally understood terms and this is central to my dilemma. I do not know what is normal and high. I've read Think like a Pancreas but there were too many numbers and too much information to take in. I suppose I want my cake and eat it

 

[SueJB]

Sounds pretty reasonable to me for a fairly new diabetic. Eventually you'll learn to inject a little Novorapid to correct a high reading. You're doing pretty well compared to a lot of people around here I'd say.

Thanks, at the moment it seems like trial and error

 

[SueJB]

The DAFNE ranges are to aim to be:

• 5.5 - 7.5 before breakfast
• 4.5 - 7.5 before other meals
• 6.5 - 8.0 before bed.

The answer to your question to the nurse

Is, there isn't an answer. Type 1 is not managed by restricting carbs. It is managed by matching your insulin to the carbs you eat. If you want to eat millions of carbs and take a tonne of insulin to deal with it, fine. Rather obviously, just like anyone else eating millions of carbs that will probably cause weight gain though. The simple fact is there is no guideline amount of carbs to eat because that isn't how type 1 is managed.

Thanks so much for the figures and the info.Where did you find this information?

 

[Gabrielle_Tai]

The DAFNE ranges are to aim to be:

• 5.5 - 7.5 before breakfast
• 4.5 - 7.5 before other meals
• 6.5 - 8.0 before bed.

The answer to your question to the nurse

Is, there isn't an answer. Type 1 is not managed by restricting carbs. It is managed by matching your insulin to the carbs you eat. If you want to eat millions of carbs and take a tonne of insulin to deal with it, fine. Rather obviously, just like anyone else eating millions of carbs that will probably cause weight gain though. The simple fact is there is no guideline amount of carbs to eat because that isn't how type 1 is managed.

It hard for me to keep my blood glucose in this range 50% of the times.The only things in range is my fasting sugar and after breakfast i shot up to 18 mol after 2 hours.

 

[becca59]

It hard for me to keep my blood glucose in this range 50% of the times.The only things in range is my fasting sugar and after breakfast i shot up to 18 mol after 2 hours.

The important question is, what is it like 4_5 hours later, before you eat your next meal. (Your bolus will take this long to work through your system). If it is within range as per figures laid out above, then the amount is correct but you may need to take it a little earlier before you eat. If still high then you may need more insulin with that particular meal. Another trial and error situation. It is very early days, you are doing well and cannot expect to get it perfect straight away. As time goes on you will become more confident about experimenting and managing this pesky condition. Keep researching past posts on here, they are a mine of information.

 

[catapillar]

Thanks so much for the figures and the info.Where did you find this information?

The DAFNE course. You could have a look at the online version while waiting for a place on the course - https://www.bertieonline.org.uk

Or you could have a look at the NICE guidelines on type 1, which provide similar targets - https://www.nice.org.uk/guidance/ng17/chapter/1-Recommendations#blood-glucose-management-2

Have you had a look at the book "think like a pancreas" that's a good guide to the basics of what you need to know to manage type 1.