Type 1: Erratic blood sugars?

[1abRat]

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

That's the one, unfortunately if she's got an iphone you'll need a reader so that does put the price up otherwise she could have just bought one sensor to try out. Some NHS clinics are loaning out the readers and a free sensor so it's worth looking into. You won't have to pay VAT and can claim this exemption during the checkout process.

Basal testing is very useful and there's a good guide here https://mysugr.com/basal-rate-testing/

I would also recommend reading the book "think like a pancreas". It's available on Amazon including Kindle and is written in a friendly, accessible way by someone who is a T1 diabetic as well as a healthcare professional.

 

[Doriscrisp]

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

thanks she is on levimere and novorapid and she carb counts using DAFNE and the Carb Cal book. We do all the things you have suggested but thank you for your reply anyway.

 

[himtoo]

Hi @Doriscrisp
welcome to the forum.
basal testing link here http://www.salforddiabetescare.co.uk/index2.php?nav_id=1007
it means not eating for a number of hours and testing frequently

 

[azure]

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?

Barring being a brittle diabetic, it sounds like her insulin doses are wrong - that is, not enough or not timed correctly to control her blood sugar.

Do try a basal test - it's a nuisance but will show if her Levemir dose is ok. If that's all wrong, it will be much harder to get control.

 

[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!

will look into Apridra will also enquire what a basal test is, thanks

 

[azure]

will look into Apridra will also enquire what a basal test is, thanks

Himtoo has put a link in his post above explaining basal testing. It's something your daughter would do herself.

 

[catapillar]

@Doriscrisp here is some information on how to do basal test - https://mysugr.com/basal-rate-testing/

It's not a test that the hospital runs, it's a way that we can test whether our long acting insulin is doing its job. The job of the basal/long acting insulin (levemir) is to keep blood sugars flat in the absence of food, fast acting insulin or unusual activity. If you think menstrual hormones are impacting on erratic blood sugar you should also try to avoid basal testing at hormonal times.

 

[Doriscrisp]

Barring being a brittle diabetic, it sounds like her insulin doses are wrong - that is, not enough or not timed correctly to control her blood sugar.

Do try a basal test - it's a nuisance but will show if her Levemir dose is ok. If that's all wrong, it will be much harder to get control.

its Lantus not Levimere- got that wrong.

 

[azure]

its Lantus not Levimere- got that wrong.

Ok - a basal test would still be applicable

Once the basal is ok/checked, then your daughter can see if her ratios are right (insulin to carbs ratios for meals).

 

[noblehead]

She is has dyscalculia too so that adds to the stress.

That can't be easy and will only add to the problem as carb counting and insulin adjustment is the key to good control.

Are her diabetes care team aware of her Dyscalculia and is there any other support she could receive to help matters?

 

[Doriscrisp]

@Doriscrisp here is some information on how to do basal test - https://mysugr.com/basal-rate-testing/

It's not a test that the hospital runs, it's a way that we can test whether our long acting insulin is doing its job. The job of the basal/long acting insulin (levemir) is to keep blood sugars flat in the absence of food, fast acting insulin or unusual activity. If you think menstrual hormones are impacting on erratic blood sugar you should also try to avoid basal testing at hormonal times.[/QUOTE

That can't be easy and will only add to the problem as carb counting and insulin adjustment is the key to good control.

Are her diabetes care team aware of her Dyscalculia and is there any other support she could receive to help matters?

yes we have let them know. We both have dyscalculia, I was recently diagnosed too while doing a post grad, so we find numbers a night mare!

 

[izzyj09]

I know this sounds really silly and the advice you've had on here is really good, but have you tried a different insulin, because when I was younger I was on the same thing, and having the same problems and I got switched to a faster acting insulin because it turns out that I digest things in under 45 mins so I'm on humalog. Also please don't think everyone else's results are perfect, for example I woke up this morning at 15 I have no idea why, went to bed at 8 !! Also I've just gone on to the libre and it's amazing, you can get it VAT free as well which reduces the cost ever so slightly, you could always try it for just two weeks so you can get a pattern going. Hope this helps and tell her just to keep going with it !

 

[Doriscrisp]

That's the one, unfortunately if she's got an iphone you'll need a reader so that does put the price up otherwise she could have just bought one sensor to try out. Some NHS clinics are loaning out the readers and a free sensor so it's worth looking into. You won't have to pay VAT and can claim this exemption during the checkout process.

Basal testing is very useful and there's a good guide here https://mysugr.com/basal-rate-testing/

I would also recommend reading the book "think like a pancreas". It's available on Amazon including Kindle and is written in a friendly, accessible way by someone who is a T1 diabetic as well as a healthcare professional.

thank you and I have that book too and its good

 

[Doriscrisp]

I know this sounds really silly and the advice you've had on here is really good, but have you tried a different insulin, because when I was younger I was on the same thing, and having the same problems and I got switched to a faster acting insulin because it turns out that I digest things in under 45 mins so I'm on humalog. Also please don't think everyone else's results are perfect, for example I woke up this morning at 15 I have no idea why, went to bed at 8 !! Also I've just gone on to the libre and it's amazing, you can get it VAT free as well which reduces the cost ever so slightly, you could always try it for just two weeks so you can get a pattern going. Hope this helps and tell her just to keep going with it !

How much did the libre cost? the clinic didnt recomend them and said they dont give imediate results, ie a few hours old?- so you have to finger prick as well? is that true ? I did look into them but the clinic put me off. How has it helped you? I didnt realsie you could odo it for just two weeks?

 

[catapillar]

How much did the libre cost? the clinic didnt recomend them and said they dont give imediate results, ie a few hours old?- so you have to finger prick as well? is that true ? I did look into them but the clinic put me off. How has it helped you? I didnt realsie you could odo it for just two weeks?

The libre results aren't a few hours old, they sensor measures interstitial fluid, rather than blood. In terms of sugar levels, interstitial fluid runs about 20 minutes behind blood sugar - because the sugar is filtering into the interstitial fluid from the blood.

You scan the libre and it gives you an instant graph of blood sugar trends.

I don't use a libre, but I do use a CGM. I finger prick to work out my doses (I don't rely on the cgm for treatment decisions), check hypos and check anything very high or very low. You have to finger prick for driving because the dvla doesn't recognise libre or cgm.

But the benefit of libre/cgm isn't really anything to do with finger pricks (although it probably would reduce them) it's getting to see the blood sugar trends which you just wouldn't get unless you were finger pricking every 5 minutes, getting to see what your sugars are doing overnight, tweaking basal rates, getting to see how long from injecting it takes for your insulin to start to work, getting to see the "hidden spikes" some foods cause, catching blood sugar before you go hypo because the graph shows you are dropping and you take on some carbs before you drop under 4, catching blood sugar before you go hyper because you can see you are rising and yo give a preemptive correction.

 

[izzyj09]

So the libre sensors last for two weeks, you have to replace them after two weeks..£139 and that buys you two sensors and a blood monitor for it. I completely agree with caterpillar to say that the best thing is the graph which it gives you everyday, also if you download it onto a computer it gives you loads of graphs and everything, for me it also spurred me on to control my blood sugars even more. For me my avg blood sugar has decreased already and I've only had it on three weeks (2 sensors) as i was able to see I was so high after lunch. I love the libre and I know some people have had problems with it but personally I haven't come across any of them yet. I also feel that I test my blood sugar more with the libre because a it doesn't hurt my fingers and b it's so easy to test. I used to think oh I'll wait a bit say if I felt slightly high and then test, now I just test and see. I would say it's worth it even just for two weeks to see the general pattern

 

[staffsmatt]

The libre can give you graphs like this one (that's on a smart phone but the reader will give you something similar) it can shoe trends like the going high overnight before dropping back down in the morning that you wouldn't know about without it...

Each scan also shows what your levels has been over time so you can see which way levels are going not just a point in time reading.

I'd definitely recommend trying one if you can afford it. They are addictive though!

 

[Doriscrisp]

THANK YOU to everyone who contributed to this forum. My daughter is starting to feel a bit better. The main thing that has come out of this forum for me is that it has opened up a whole new world where I can talk to others with diabetes and not just to DSNs and doctors to get some realy good suggestions and advice and things to consider that no one has mentioned before. The medical practice has this week for the first time, recognised the implications of having Dyscalculia has been for a diabetic and her carer! They have for the first time taken it seriously and we are now on an investiagtion into how to support this. If any one has any links with the problems for folk who have low numeracy skills and have to manage diabetes, let me know, thinking there must be some technology out there? The other things we are looking into is tryng a basal rate, when she has time and testing the carb to cal count meticulously. Im still interested in the libre but the medics seem against it. And the scary pump is also something that has been brouht up again. I wondered if anyone knew the benefits of injecting before or after eating? As this has been suggested too. Anyway thank you to you all

 

[Doriscrisp]

The libre can give you graphs like this one (that's on a smart phone but the reader will give you something similar) it can shoe trends like the going high overnight before dropping back down in the morning that you wouldn't know about without it...

Each scan also shows what your levels has been over time so you can see which way levels are going not just a point in time reading.

I'd definitely recommend trying one if you can afford it. They are addictive though!

Thank you for posting this, I will show it to her. she is about to go away on holiday for a week so its all on hold until she gets back and been trying to get her stable so she can go. it looks good though- can you take it off and then stick it back on a few weeks late or when you are curious as it would be expensive to fund it continuosly?

 

[staffsmatt]

Thank you for posting this, I will show it to her. she is about to go away on holiday for a week so its all on hold until she gets back and been trying to get her stable so she can go. it looks good though- can you take it off and then stick it back on a few weeks late or when you are curious as it would be expensive to fund it continuosly?

No worries. You can't take a sensor off and re apply it, each sensor lasts for 2 weeks though and you can wait as long as you like between sensors.

It is expensive to use it continuously, but like I said very addictive!