Hbac1 advice

Mad76

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319
Type of diabetes
Type 1
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Hi all,
Looking for some advice , reassurance, others experiences, as I'm getting quite anxious about things.

Briefly, I was diagnosed type 1 in April 2019 after misdiagnosis of type 2 and a really bad DKA.

When diagnosed my hbac1 was 130

In August saw consultant for first time. Hbac1 was down to 46. I was over the moon. Consultant happy. Etc. Seemed all good

Since then I've struggled. According to my libre and glimp app my hbac1 has gone up to 55. I can believe that because my sugars are up and down

Feeling pretty disappointed and deflated. Feels like failure. But I think the initial hbac1 of 46 was because after I was first diagnosed and got so Ill I barely ate many carbs.

Anyway that wasnt any way to live for me. It was awful. The consultant really encouraged me but said I can eat what I want really as long as I get the insulin right. Clearly this hasnt happened.

So really my questions are, how bad is going from 44 to 55 ?? And anyone have any experiences to share that might cheer me up/ motivate me??

Thanks in advance always
 

NicoleC1971

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Hi there. I think you are going to Dafne right?
1 Your hba1c at such an early stage won't have longer term impact as complications take longer to develop. You might feel rubbish though and you are spending time worrying about it so that is not good.
2 As type 1s we are sold a myth IMO that it is possible to eat as many carbs as you like, as long as you calculate the doses right. In reality there are estimated to be 150 variables that go into a blood sugar result NOT just carbs injested although that's obviously a biggie. So I try to do the best I can and eat low carb for health and weight management plus I am too lazy to do what I was told on Dafne and weight out foods then do the sums to calculate an insulin dose 20 minutes ahead of a meal.
In summary i think this approach works if you live a very consistent kind of life in which activities and meals are highly regularised. I don't live like that so I have to accept a bit more variability in my blood sugars but that's my choice. You will have to work out this one but at least Dafne will give you tools.
You should not feel guilty about the failure to keep to that initial HBA1c. You are learning about all of this and it will get easier. Here's a couple of resources I've found helpful:
https://brightspotsandlandmines.org/ Adam Brown is a type 1 and this book is 'what I wish someone had given me when I was first diagnosed'
https://www.dietdoctor.com/video/podcast#37 This is about low carb however I enjoyed it because he seems to get just how stressful type 1 is . I sent it to my husband when he told me that all I needed to do was test more!

Anyway, I believe you will get a lot from Dafne because everyone there will get it and share your frustrations. I am still going to the pub with the people I met there 12 + years ago!
 
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Juicyj

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Hello @Mad76 Don't get dis-heartened, I know it's easy to when living with this, but it is just a number that's all.

There is a possibility you came to the end of your honeymoon hence the fluctuations and difference from your last test. DAFNE as Nicole has said will address this, so it's important to attend as they will help you re-align yourself and if necessary adjust your insulin and ratios to help you manage this better. It's vital you go as it's a good foundation course for insulin users.

I have had an increase on my last one, but put this down to Xmas and living it up, am not really that bothered as to me it's just a spot check on what's working and what isn't and I know my next one will be a big improvement for this reason, also remember living with a health condition that requires constant monitoring is always a strain so please don't add any more to your mental cup with a minor detail, we're in a marathon and so there will be ups and downs, if you can try to, just dust yourself down and come back fighting x
 
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Shannon27

Well-Known Member
Messages
290
Type of diabetes
Type 1
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Insulin
Hi all,
Looking for some advice , reassurance, others experiences, as I'm getting quite anxious about things.

Briefly, I was diagnosed type 1 in April 2019 after misdiagnosis of type 2 and a really bad DKA.

When diagnosed my hbac1 was 130

In August saw consultant for first time. Hbac1 was down to 46. I was over the moon. Consultant happy. Etc. Seemed all good

Since then I've struggled. According to my libre and glimp app my hbac1 has gone up to 55. I can believe that because my sugars are up and down

Feeling pretty disappointed and deflated. Feels like failure. But I think the initial hbac1 of 46 was because after I was first diagnosed and got so Ill I barely ate many carbs.

Anyway that wasnt any way to live for me. It was awful. The consultant really encouraged me but said I can eat what I want really as long as I get the insulin right. Clearly this hasnt happened.

So really my questions are, how bad is going from 44 to 55 ?? And anyone have any experiences to share that might cheer me up/ motivate me??

Thanks in advance always

To be honest with you, that's not bad at all for me! Been diabetic for nearly 20 years, since i was 4/5, and for the last couple of years my a1c has hovered around 70. This is due to overall laziness, bad control and a lack of motivation. Turning this around now, but remember low carb isn't the answer for everyone :) it all depends how you manage the carb intake - my readings have been great this week and i'm still on carbs! Pretty high carb if i'm honest :p so don't be discouraged - i know an increase makes you feel like you've failed but you really are doing amazing! :)

I am starting a low carb diet next week just because i want to eat better, nothing to do with my diabetes. Some of the recipes look amazing! And weight loss would be a plus :) i'll be managing the diabetes side with the carbs and cals app, have you come across it? It's ace for carb counting and figuring out how much insulin you need :)
 
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Mad76

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319
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Thanks for all your kind words

Yes I'm booked on dafne in early june. Hope that helps me with control
Everyone says great things about it so heres hoping.
 

porl69

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@Mad76 the Libre and Glimp apps may not be correct.
Definitely don't beat yourself up about the small jump, if it is correct! Wait until you get your next HBA1C done and see what it is.
 
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Mad76

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319
Type of diabetes
Type 1
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I have the carbs and cals book
But I find carb counting quite tricky
As the food I eat is not typical food youd find in the book if that makes sense..I cook from scratch a lot and its either north african traditional type food or asian food. So I just guestimate usually. I think this is an issue really. Maybe that's why bg goes up and down all day . I never get a straight line on my libre graph
 

porl69

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I have the carbs and cals book
But I find carb counting quite tricky
As the food I eat is not typical food youd find in the book if that makes sense..I cook from scratch a lot and its either north african traditional type food or asian food. So I just guestimate usually. I think this is an issue really. Maybe that's why bg goes up and down all day . I never get a straight line on my libre graph

Make notes of the food you are cooking and the doses you are taking for the food then in the future you will be able to dose more accurately based on previous food intake of the same foods!
 
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Mad76

Well-Known Member
Messages
319
Type of diabetes
Type 1
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Insulin
Hi there. I think you are going to Dafne right?
1 Your hba1c at such an early stage won't have longer term impact as complications take longer to develop. You might feel rubbish though and you are spending time worrying about it so that is not good.
2 As type 1s we are sold a myth IMO that it is possible to eat as many carbs as you like, as long as you calculate the doses right. In reality there are estimated to be 150 variables that go into a blood sugar result NOT just carbs injested although that's obviously a biggie. So I try to do the best I can and eat low carb for health and weight management plus I am too lazy to do what I was told on Dafne and weight out foods then do the sums to calculate an insulin dose 20 minutes ahead of a meal.
In summary i think this approach works if you live a very consistent kind of life in which activities and meals are highly regularised. I don't live like that so I have to accept a bit more variability in my blood sugars but that's my choice. You will have to work out this one but at least Dafne will give you tools.
You should not feel guilty about the failure to keep to that initial HBA1c. You are learning about all of this and it will get easier. Here's a couple of resources I've found helpful:
https://brightspotsandlandmines.org/ Adam Brown is a type 1 and this book is 'what I wish someone had given me when I was first diagnosed'
https://www.dietdoctor.com/video/podcast#37 This is about low carb however I enjoyed it because he seems to get just how stressful type 1 is . I sent it to my husband when he told me that all I needed to do was test more!

Anyway, I believe you will get a lot from Dafne because everyone there will get it and share your frustrations. I am still going to the pub with the people I met there 12 + years ago!
Thanks. With regards to eating carbs. Theres so much conflicting advise I just dont know what to do.. because I love food, esp carbs I think I jumped on the consultants words about eating whatever I want. Maybe I shouldn't have..but it's hard to know who to believe. I really feel lost at times.
 

novorapidboi26

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You will come to realise how vague the HbA1c is in terms of true control detail......especially so early in to diagnosis......

An increase of the magnitude inst a big issue.....you seem to be keen and pro-active so keep it up..
 
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Mad76

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319
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Type 1
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Hello @Mad76 Don't get dis-heartened, I know it's easy to when living with this, but it is just a number that's all.

There is a possibility you came to the end of your honeymoon hence the fluctuations and difference from your last test. DAFNE as Nicole has said will address this, so it's important to attend as they will help you re-align yourself and if necessary adjust your insulin and ratios to help you manage this better. It's vital you go as it's a good foundation course for insulin users.

I have had an increase on my last one, but put this down to Xmas and living it up, am not really that bothered as to me it's just a spot check on what's working and what isn't and I know my next one will be a big improvement for this reason, also remember living with a health condition that requires constant monitoring is always a strain so please don't add any more to your mental cup with a minor detail, we're in a marathon and so there will be ups and downs, if you can try to, just dust yourself down and come back fighting x
Thanks. I thought maybe the honeymoon period is over. Who knows. The scary thing is I see the consultant after 6 months. My gp is clueless. So it's quite overwhelming managing alone with a newish diagnosis. I just read on here a lot. But then I start thinking. Am I mad following health advise off strangers online ??? No offense intended obviously , but it's quite scary really!
 

Mad76

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319
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Type 1
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Make notes of the food you are cooking and the doses you are taking for the food then in the future you will be able to dose more accurately based on previous food intake of the same foods!
Yeah, l think I need to do this
 

Mad76

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Messages
319
Type of diabetes
Type 1
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Insulin
You will come to realise how vague the HbA1c is in terms of true control detail......especially so early in to diagnosis......

An increase of the magnitude inst a big issue.....you seem to be keen and pro-active so keep it up..
Thank you. I am really keen to control it, but it's just the realisation now that this is for the rest of my life. Just silly things like last night I just wanted to sleep when I put my son to bed. And just having to drag myself up to take my basal really annoyed me
It's pretty pathetic and self pitying I know. Just reading what I've written sounds pathetic I know
 

porl69

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Thanks. I thought maybe the honeymoon period is over. Who knows. The scary thing is I see the consultant after 6 months. My gp is clueless. So it's quite overwhelming managing alone with a newish diagnosis. I just read on here a lot. But then I start thinking. Am I mad following health advise off strangers online ??? No offense intended obviously , but it's quite scary really!

You will get lots of amazing advice on here. There are some very knowledgeable people here who are more than willing to help
 
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KK123

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3,967
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Hi @Mad76, some great replies already. My own experience (after nearly 3 years) is that technically, yes you can eat what you want (like any non diabetic person) if you can only inject the exact amount of insulin required. The problem with that philosophy though is that our bodies do not work as well as a body with its own supply of insulin, and it is impossible to be able to inject the EXACT amount of insulin at EXACTLY the right time 24/7 that a 'normal' body does. NOBODY can achieve that as our bodies are complex machines and adjust our (other) hormones every second during the day & night. As an example, I have just got a libre and am astonished to see how much fluctuation there is every 15 minutes or more. When doing finger prick checks (prior to the libre), I thought my levels were fairly steady, ie a reading of 6 at 4pm followed by another reading of 6 at 8pm meant that the 4 hours between were also around 6. NOT so. My levels (without eating so as not to complicate matters) went up & down between 4 and 7. I checked every 10 minutes (my new toy) and each reading was different by around a point or more or less.

My point is that you can chase your levels by 'eating what you want' and trying to match it with insulin and that's fine BUT it can be quite chaotic if you are an active person with a job (or even if you aren't).

I found that the best way to stabilise my levels are to watch the carbs I eat and to go mainly 'low carb', for me that means around 30/40 carbs per meal (although I do have 2 meals a day so that may affect the hb1ac too). I find that by keeping the carbs per meal lower I can inject say 3/4 units of insulin and know (for now anyway) that my levels won't rise drastically and will always come down fairly swiftly.

I am not a Saint and I do have higher carb meals occasionally but when I eat a meal with say 100/150 carbs, if I take 10 units I sometimes crash down into a hypo 90 minutes later or sometimes I don't and I stay higher for a few hours. You see?, how on earth do you get it down to an exact degree?

My approach is not to go low carb but not to eat extremely high carbs either or eat high carb meals or snacks constantly during the day as this means injecting all over the place too, an added nuisance for me. I think you need to find your own levels and whilst I would never tell someone 'my way or the highway', what you describe seems to be frustrating for you and not particularly as stable as YOU would want.

Can you tell us your regime, ie, what do you eat & when and what your ratios are etc. Honestly you can still eat what you want on a lower carb diet, bread/pasta/rice (measured out), just maybe not unlimited amounts and so on. As an aside I have just completed a type 1 carb counting course and was able to observe all the other type 1s. Without exception those who ate 'whatever they wanted' whilst trying to match insulin complained of high & low spikes constantly and those who were more measured did have more stable levels. The advice given by the Diabetes team on the course was 'Carb count and use insulin' but it was very clear to me that this was far harder to achieve than you would think. There were biccies all over the place too and I also noticed how many people grabbed during the day without taking insulin for it, I am NOT trying to shame anyone but speaking to the attendees during the course hardly any of them seemed to think 2/3 biscuits may require insulin. Of course any person can eat what they want but in the end you may have to accept that you may need to adjust (if only slightly) to combat this yucky condition. x
 
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becca59

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As it isn’t an actual HBA1C result don’t take your Libre/Glimp app results as red.
The fact that you cook from scratch a lot is a big positive. You are in charge of what is going into the food. Putting in some extra effort at the beginning of a new dish will pay dividends. Write down every item you put in down to the last g/ml and then sit down and work out how many carbs are in it. Then see how your body reacts and make notes of insulin taken and levels. Make a chart for the back of a cupboard door and write down carbs in everything you eat. The chart thing I did a couple of weeks after diagnosis and 6 years later it is still there. I hardly refer to it now, but in the early days, boy was that chart poured over. What I am trying to say is, yes all this extra work is a pain and irritating when you cannot just sit and eat. However a few months work now it will have paid dividends and the working out required will be negligible. As the main cook in my house I have Post it’s on the go with meal on, carbs to be eaten, how much insulin to take and my pen primed ready to inject whilst deep in cooking territory.
I know it’s not the same as just sitting and eating what we want and however much we want. But we have to make the best of a bad job in the easiest way possible. For me accuracy is important. It can be done.
 
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Mad76

Well-Known Member
Messages
319
Type of diabetes
Type 1
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Insulin
Hi @Mad76, some great replies already. My own experience (after nearly 3 years) is that technically, yes you can eat what you want (like any non diabetic person) if you can only inject the exact amount of insulin required. The problem with that philosophy though is that our bodies do not work as well as a body with its own supply of insulin, and it is impossible to be able to inject the EXACT amount of insulin at EXACTLY the right time 24/7 that a 'normal' body does. NOBODY can achieve that as our bodies are complex machines and adjust our (other) hormones every second during the day & night. As an example, I have just got a libre and am astonished to see how much fluctuation there is every 15 minutes or more. When doing finger prick checks (prior to the libre), I thought my levels were fairly steady, ie a reading of 6 at 4pm followed by another reading of 6 at 8pm meant that the 4 hours between were also around 6. NOT so. My levels (without eating so as not to complicate matters) went up & down between 4 and 7. I checked every 10 minutes (my new toy) and each reading was different by around a point or more or less.

My point is that you can chase your levels by 'eating what you want' and trying to match it with insulin and that's fine BUT it can be quite chaotic if you are an active person with a job (or even if you aren't).

I found that the best way to stabilise my levels are to watch the carbs I eat and to go mainly 'low carb', for me that means around 30/40 carbs per meal (although I do have 2 meals a day so that may affect the hb1ac too). I find that by keeping the carbs per meal lower I can inject say 3/4 units of insulin and know (for now anyway) that my levels won't rise drastically and will always come down fairly swiftly.

I am not a Saint and I do have higher carb meals occasionally but when I eat a meal with say 100/150 carbs, if I take 10 units I sometimes crash down into a hypo 90 minutes later or sometimes I don't and I stay higher for a few hours. You see?, how on earth do you get it down to an exact degree?

My approach is not to go low carb but not to eat extremely high carbs either or eat high carb meals or snacks constantly during the day as this means injecting all over the place too, an added nuisance for me. I think you need to find your own levels and whilst I would never tell someone 'my way or the highway', what you describe seems to be frustrating for you and not particularly as stable as YOU would want.

Can you tell us your regime, ie, what do you eat & when and what your ratios are etc. Honestly you can still eat what you want on a lower carb diet, bread/pasta/rice (measured out), just maybe not unlimited amounts and so on. As an aside I have just completed a type 1 carb counting course and was able to observe all the other type 1s. Without exception those who ate 'whatever they wanted' whilst trying to match insulin complained of high & low spikes constantly and those who were more measured did have more stable levels. The advice given by the Diabetes team on the course was 'Carb count and use insulin' but it was very clear to me that this was far harder to achieve than you would think. There were biccies all over the place too and I also noticed how many people grabbed during the day without taking insulin for it, I am NOT trying to shame anyone but speaking to the attendees during the course hardly any of them seemed to think 2/3 biscuits may require insulin. Of course any person can eat what they want but in the end you may have to accept that you may need to adjust (if only slightly) to combat this yucky condition. x
Thank you soI much for your reply. Lots of food for thought there. I think I basically went from one extreme to another and need to find some sort of balance. It's not easy, I've always had weight/food issues. Overeating and yoyodieting. The ONLY positive about this disease is I lost a lot of weight before diagnosis. Lightest I've ever been (still overweight according to the health professionals, but a great weight for me) anyway my down fall has always been snacks and junk food. Since diagnosis I always take insulin for anything more than 10g carbs so I do bolus for snacks.
 

Mad76

Well-Known Member
Messages
319
Type of diabetes
Type 1
Treatment type
Insulin
You will get lots of amazing advice on here. There are some very knowledgeable people here who are more than willing to help
Yes, this place has been a complete lifeline for me since diagnosis. So much help here. I'd be (even more) lost without it
 

Mad76

Well-Known Member
Messages
319
Type of diabetes
Type 1
Treatment type
Insulin
As it isn’t an actual HBA1C result don’t take your Libre/Glimp app results as red.
The fact that you cook from scratch a lot is a big positive. You are in charge of what is going into the food. Putting in some extra effort at the beginning of a new dish will pay dividends. Write down every item you put in down to the last g/ml and then sit down and work out how many carbs are in it. Then see how your body reacts and make notes of insulin taken and levels. Make a chart for the back of a cupboard door and write down carbs in everything you eat. The chart thing I did a couple of weeks after diagnosis and 6 years later it is still there. I hardly refer to it now, but in the early days, boy was that chart poured over. What I am trying to say is, yes all this extra work is a pain and irritating when you cannot just sit and eat. However a few months work now it will have paid dividends and the working out required will be negligible. As the main cook in my house I have Post it’s on the go with meal on, carbs to be eaten, how much insulin to take and my pen primed ready to inject whilst deep in cooking territory.
I know it’s not the same as just sitting and eating what we want and however much we want. But we have to make the best of a bad job in the easiest way possible. For me accuracy is important. It can be done.
Thankyou for your advise. I should definatly start doing this. I'm going to start noting all the foods. Quantities etc . And what they do to my bg.
 

Mad76

Well-Known Member
Messages
319
Type of diabetes
Type 1
Treatment type
Insulin
Hi @Mad76, some great replies already. My own experience (after nearly 3 years) is that technically, yes you can eat what you want (like any non diabetic person) if you can only inject the exact amount of insulin required. The problem with that philosophy though is that our bodies do not work as well as a body with its own supply of insulin, and it is impossible to be able to inject the EXACT amount of insulin at EXACTLY the right time 24/7 that a 'normal' body does. NOBODY can achieve that as our bodies are complex machines and adjust our (other) hormones every second during the day & night. As an example, I have just got a libre and am astonished to see how much fluctuation there is every 15 minutes or more. When doing finger prick checks (prior to the libre), I thought my levels were fairly steady, ie a reading of 6 at 4pm followed by another reading of 6 at 8pm meant that the 4 hours between were also around 6. NOT so. My levels (without eating so as not to complicate matters) went up & down between 4 and 7. I checked every 10 minutes (my new toy) and each reading was different by around a point or more or less.

My point is that you can chase your levels by 'eating what you want' and trying to match it with insulin and that's fine BUT it can be quite chaotic if you are an active person with a job (or even if you aren't).

I found that the best way to stabilise my levels are to watch the carbs I eat and to go mainly 'low carb', for me that means around 30/40 carbs per meal (although I do have 2 meals a day so that may affect the hb1ac too). I find that by keeping the carbs per meal lower I can inject say 3/4 units of insulin and know (for now anyway) that my levels won't rise drastically and will always come down fairly swiftly.

I am not a Saint and I do have higher carb meals occasionally but when I eat a meal with say 100/150 carbs, if I take 10 units I sometimes crash down into a hypo 90 minutes later or sometimes I don't and I stay higher for a few hours. You see?, how on earth do you get it down to an exact degree?

My approach is not to go low carb but not to eat extremely high carbs either or eat high carb meals or snacks constantly during the day as this means injecting all over the place too, an added nuisance for me. I think you need to find your own levels and whilst I would never tell someone 'my way or the highway', what you describe seems to be frustrating for you and not particularly as stable as YOU would want.

Can you tell us your regime, ie, what do you eat & when and what your ratios are etc. Honestly you can still eat what you want on a lower carb diet, bread/pasta/rice (measured out), just maybe not unlimited amounts and so on. As an aside I have just completed a type 1 carb counting course and was able to observe all the other type 1s. Without exception those who ate 'whatever they wanted' whilst trying to match insulin complained of high & low spikes constantly and those who were more measured did have more stable levels. The advice given by the Diabetes team on the course was 'Carb count and use insulin' but it was very clear to me that this was far harder to achieve than you would think. There were biccies all over the place too and I also noticed how many people grabbed during the day without taking insulin for it, I am NOT trying to shame anyone but speaking to the attendees during the course hardly any of them seemed to think 2/3 biscuits may require insulin. Of course any person can eat what they want but in the end you may have to accept that you may need to adjust (if only slightly) to combat this yucky condition. x
My regime is as follows

In the morning I take novorapid. And it takes AGES to work. About 45mins later I have a couple of cups of tea plus 2 brown toast with butter

Lunch again novorapid about 30 mins before. Can be anything . Today it was spag bol and half an orange

Afternoon tea and usually a bit of cake or a biscuit . Novorapid

Dinner as I said north african food . Or Asian. With nan / crusty bread usually

Lantus at bed time

This is me now. Following advice from consultant that I can eat what I want .
Seeing it written down makes me think it's time to reduce those carbs.

Insulin ratio. Like I said . Mainly guestimate. But for example 4 units novorapid covers my toast and tea at breakfast.