Type 1: Erratic blood sugars?

[Doriscrisp]

Hi
I am new to this site and writing on behalf of my daughter who is 23 years old DT1 and has been diabetic since she was 7. I was looking at this site and saw people putting in thier blood sugars morning and night and they all seem so fine to me. My daughter has had high blood sugars for years. She gets hypos, she struggles, every day she feels awful, she does all the right things they ask her to do. The highs are really high . 15- 22 and we have been to clinics, doctors, specialists and always trying to find solutions. She has been feeling bad for the last 3 years, she has to keep telling so many differnt people and no one seems to be able to do anything. We are both at are wits end. We do all the advice they tell us to. She starts a course in September and she has a trip with her boytfriend booked for a holiday with her boyfriend and she is worried that she wont be well. This is a big question for a small chat but we wonder if anyone has had this erratic blood sugar problem with huge highs and have heard of any clues to why this is? Maybe there is something else going on? She had an infection last week but it cleared up and not surprising with high BM's. she is constantly correcting doses to bring it down. She is has dyscalculia too so that adds to the stress. All the obvious things we have tried but nothing works. ?

 

[Juicyj]

Hello @Doriscrisp Welcome to the site.

Sorry to hear about what your daughter is going through, that's very worrying for a parent.

What's does her insulin regime look like ?

I know i've had my fair share of erratic BG readings and even today I am struggling. I have found that a few things have helped me, doing DAFNE was a great support for learning more about my type 1 management, having a DSN who is there and supporting me has been so important in my care. Tracking results on an app like diaconnect when i've needed to analyse patterns and trends is very useful, it has shown me that as a female I suffer from hormones in my monthly cycle as this causes insulin resistance so my insulin increases up to 30%. As your daughter has dyscalculia using an app like carbs and cals would help alot in calculating insulin doses.

Not all of us are perfect or get regular daily results which stay within range, I have just looked at my daily results and they can range from 3.6 to 15 mmol/l, I try to low carb so eat protein breakfast and salad/soup for lunch, I snack on nuts and then supper is normally veges and protein and dairy, however I do eat carbs when I want to, so last night had a roll with my supper and of course treat the lows with glucose and carbs. I try to do my best each day and that's all I can do, I have learned to ease off the gas slightly as trying to achieve the target can be stressful in itself, so am slightly more chilled out now about the highs and lows, I just do what I need to do each day to strike a balance between looking after me and living as normal a life as possible.

 

[azure]

Hi @Doriscrisp Sorry your daughter is having so many problems. Does she count carbs and adjust her meal insulin to match?

Has she any digestion issues that might mean she's absorbing her food in a way that doesn't fit her insulin?

 

[Lazybones]

Sorry to hear that your daughter is having problems with her type 1 diabetes control.
I would suggest that you take the time to read through the relevant items on this site which will outline the basics, but I suspect that by this time your daughter will already know them.
Getting the balance right is difficult, more so for a Type 1, who has to balance what they eat (Carbohydrate wise) against their Insulin dosage. If that wasn't bad enough, stress and illness also play their part in making blood glucose levels rise, as can certain other medical condition, or the use of steroids.
It's almost impossible for us to give you a definite solution to your daughter's problem.
If you can tell us what medications she takes (Insulin types and dosages), what activities she does, and what she generally eats and drinks, then we will try our best to help.

Edited by a mod

 

[Doriscrisp]

Hi @Doriscrisp Sorry your daughter is having so many problems. Does she count carbs and adjust her meal insulin to match?

Has she any digestion issues that might mean she's absorbing her food in a way that doesn't fit her insulin?

yes she counts carbs, does DAFNE and adjusts meals. I wondered about a digestive issue, she does seem to feel that wheat is a problem? Is there different insulin types that you can suggest ?

 

[tim2000s]

yes she counts carbs, does DAFNE and adjusts meals. I wondered about a digestive issue, she does seem to feel that wheat is a problem? Is there different insulin types that you can suggest ?

At my last clinic appointment, my blood was tested for both Coeliac and Thyroid funciton issues as a routine check. Both of these conditions have an abnormally high incidence in T1s and can affect blood glucose control. Has you daughter had any of these tests?

 

[Doriscrisp]

Hello @Doriscrisp Welcome to the site.

Sorry to hear about what your daughter is going through, that's very worrying for a parent.

What's does her insulin regime look like ?

I know i've had my fair share of erratic BG readings and even today I am struggling. I have found that a few things have helped me, doing DAFNE was a great support for learning more about my type 1 management, having a DSN who is there and supporting me has been so important in my care. Tracking results on an app like diaconnect when i've needed to analyse patterns and trends is very useful, it has shown me that as a female I suffer from hormones in my monthly cycle as this causes insulin resistance so my insulin increases up to 30%. As your daughter has dyscalculia using an app like carbs and cals would help alot in calculating insulin doses.

Not all of us are perfect or get regular daily results which stay within range, I have just looked at my daily results and they can range from 3.6 to 15 mmol/l, I try to low carb so eat protein breakfast and salad/soup for lunch, I snack on nuts and then supper is normally veges and protein and dairy, however I do eat carbs when I want to, so last night had a roll with my supper and of course treat the lows with glucose and carbs. I try to do my best each day and that's all I can do, I have learned to ease off the gas slightly as trying to achieve the target can be stressful in itself, so am slightly more chilled out now about the highs and lows, I just do what I need to do each day to strike a balance between looking after me and living as normal a life as possible.

thank you, yes she uses carbs and cals on her phone, it does help, but still gets it wrong, we have now decided to create her own meal plan and strict diet and calculate every meal in advance. She went on the pill to make her hormones more balanced and I think that helps, but will look into it more. thanks

 

[Doriscrisp]

At my last clinic appointment, my blood was tested for both Coeliac and Thyroid funciton issues as a routine check. Both of these conditions have an abnormally high incidence in T1s and can affect blood glucose control. Has you daughter had any of these tests?

no she hasnt been tested for this- I will ring them and check thank you

 

[Doriscrisp]

Hello @Doriscrisp Welcome to the site.

Sorry to hear about what your daughter is going through, that's very worrying for a parent.

What's does her insulin regime look like ?

I know i've had my fair share of erratic BG readings and even today I am struggling. I have found that a few things have helped me, doing DAFNE was a great support for learning more about my type 1 management, having a DSN who is there and supporting me has been so important in my care. Tracking results on an app like diaconnect when i've needed to analyse patterns and trends is very useful, it has shown me that as a female I suffer from hormones in my monthly cycle as this causes insulin resistance so my insulin increases up to 30%. As your daughter has dyscalculia using an app like carbs and cals would help alot in calculating insulin doses.

Not all of us are perfect or get regular daily results which stay within range, I have just looked at my daily results and they can range from 3.6 to 15 mmol/l, I try to low carb so eat protein breakfast and salad/soup for lunch, I snack on nuts and then supper is normally veges and protein and dairy, however I do eat carbs when I want to, so last night had a roll with my supper and of course treat the lows with glucose and carbs. I try to do my best each day and that's all I can do, I have learned to ease off the gas slightly as trying to achieve the target can be stressful in itself, so am slightly more chilled out now about the highs and lows, I just do what I need to do each day to strike a balance between looking after me and living as normal a life as possible.

She is on Levimere and Nova rapid

 

[azure]

yes she counts carbs, does DAFNE and adjusts meals. I wondered about a digestive issue, she does seem to feel that wheat is a problem? Is there different insulin types that you can suggest ?

I have a coeliac screen every two years. It's worth a check.
Is there any pattern to her highs and lows eg does she go low after a meal, then shoot up high? Or high after then low?

 

[BeccyB]

I hate to say it but is it possible she's not actually doing everything she should? I only suggest it because I used to tell my parents I was but then be 'cheating' when they weren't around and had a great 'how on earth has that happened?!' routine when they saw a high blood sugar :-(

Perhaps you could encourage her to come on here and ask for support herself? I think we've all felt better knowing other people struggle too. And even if she is 'misbehaving' there will be no judgement - the majority of us have been there at some point

Definitely get those tests organised though

 

[catapillar]

@Doriscrisp i just wanted to say, don't get too hung up on the idea that everyone else's results look good on here - I'm definitely guilty of filtering out the terrible days for sharing, cos I don't want to share them!

But that's not to say it might not be possible to improve things. Has she done basal testing to check the levemir dose is correct? Does she split the levemir?

 

[azure]

thank you, yes she uses carbs and cals on her phone, it does help, but still gets it wrong, we have now decided to create her own meal plan and strict diet and calculate every meal in advance. She went on the pill to make her hormones more balanced and I think that helps, but will look into it more. thanks

If you're looking to simplify things and so reduce as many variables as you can, I found sticking to the same two or three lunches and breakfasts helps enormously. It means you know how much insuljn to have for that meal without having to think. For evening meals, keep notes of the carb values for favourite meals and jotted on favourite recipes.

Also, use proper digital scales. I akways weigh things like pasta, cereal, etc. It's quick and means your carb counting is far more accurate.

I second the advice for her to do a basal test. The correct basal makes a firm foundation to build on.

Another thing to look at is the timing of pre-meal boluses. Often, having the bolus slightly earlier stops spikes after meals.

 

[Juicyj]

Agree with @catapillar It can appear that lots have perfect results but the reality can be different, so try not to aim for the unachievable which would cause stress - also good point about basal testing, and also splitting levemir.

Even when you think you've got it right it can change again, it's an education in learning what the variables are and how to manage them better, yes always work in progress !

 

[1abRat]

Would she consider getting a Freestyle Libre sensor for a couple of weeks? It's £50 and as long as she has a new enough Android phone with NFC she won't have to buy a reader.

When I started using my Libre in March I thought I was doing a great job of controlling my sugars....not so.

I was horrified to discover that even though my HbA1c was 6.2% I was soaring to 15+ mmol/L after some meals and crashing down to the low 2's at other times including at night. I still feel sick thinking about it!

Once I'd gotten over the shock I was able to sit down and analyse what was happening.

By making simple changes such as timing my injections differently, eating fewer carbs that spike me (I still eat chocolate for example but instead of eating a whole chocolate bar I'll eat a child-size bag of buttons instead) and going for a little walk or up and down some stairs after lunch my control improved.

The biggest help was that the Libre allowed me to properly assess my basal rate (the Levemir). I discovered that a lot of my wild swings were a result of my basal being way too high causing hypos which I was then over-correcting with food which I was then over-correcting with insulin and on and on it went.

Just over 6 months later I've only been in the 2's twice in 4 months, I'm between 4 and 8 around 90% of the time and the highest I've been is 15.8 mmol/L which was when I went to a wedding. Other than that I haven't been over 13 mmol/L

It's been a lot of hard work and I've had to um.... disregard a lot of what the DSN's and Dr's have told me over the years but it's definitely been worth it.

 

[staffsmatt]

Is she pre injecting her pre meal.insulin? I used to be on nova rapid and would always shoot up high after meals, I find Apidra is better fir me and controls the spikes better, I still have to inject 10 minutes or so before eating though (even though they say you don't need to!) Some people on novarapid inject even earlier although I'd suggest starting at around 10 and then increase in 5 minute intervals...

Has she done a basal test at all?

Agree with everyone else though everyone has bad days, it's impossible not to!

 

[Doriscrisp]

no she hasnt been tested for this- I will ring them and check thank you

they said she is all clear regarding blood tests for the above, which is good, but stll doesnt explain constant highs. she is 18 now and not well again we have been on the phone to the specialists all day and they know about her but apart from the ususal advice regarding counting carbs and insulin correction doses, nothing seems to work?

 

[Doriscrisp]

Would she consider getting a Freestyle Libre sensor for a couple of weeks? It's £50 and as long as she has a new enough Android phone with NFC she won't have to buy a reader.

When I started using my Libre in March I thought I was doing a great job of controlling my sugars....not so.

I was horrified to discover that even though my HbA1c was 6.2% I was soaring to 15+ mmol/L after some meals and crashing down to the low 2's at other times including at night. I still feel sick thinking about it!

Once I'd gotten over the shock I was able to sit down and analyse what was happening.

By making simple changes such as timing my injections differently, eating fewer carbs that spike me (I still eat chocolate for example but instead of eating a whole chocolate bar I'll eat a child-size bag of buttons instead) and going for a little walk or up and down some stairs after lunch my control improved.

The biggest help was that the Libre allowed me to properly assess my basal rate (the Levemir). I discovered that a lot of my wild swings were a result of my basal being way too high causing hypos which I was then over-correcting with food which I was then over-correcting with insulin and on and on it went.

Just over 6 months later I've only been in the 2's twice in 4 months, I'm between 4 and 8 around 90% of the time and the highest I've been is 15.8 mmol/L which was when I went to a wedding. Other than that I haven't been over 13 mmol/L

It's been a lot of hard work and I've had to um.... disregard a lot of what the DSN's and Dr's have told me over the years but it's definitely been worth it.

Thanks I will look into this - is this the one- ?
https://youcandoit.freestylediabetes.co.uk
its £159 to buy and then £50 every two weeks? NHS didnt recomned it - but it is expensive to run - do you use it all the time? She has an iphone

 

[Doriscrisp]

Is she pre injecting her pre meal.insulin? I used to be on nova rapid and would always shoot up high after meals, I find Apidra is better fir me and controls the spikes better, I still have to inject 10 minutes or so before eating though (even though they say you don't need to!) Some people on novarapid inject even earlier although I'd suggest starting at around 10 and then increase in 5 minute intervals...

Has she done a basal test at all?

Agree with everyone else though everyone has bad days, it's impossible not to!

what is a basal test?
I can ask at the clinic about different types of insulin thanks

 

[staffsmatt]

Basically just have the levimir with no food or nova rapid and see if levels stay ok. If you search the forum there are some good posts about it @noblehead has a good link..