I'm fed up, folks!

[melirose]

Hi! Long time lurker, first time poster.

I'm 26 and I was diagnosed with T1 on 31st Dec 2019 and spent the following 3 nights in hospital to sort out the numbers. So far i'm doing alright but i'm having trouble with hypos.

A coupla facts:

• Most likely still honeymooning.
• I use lantus nightly and novorapid with meals when i need it but i'm so active that sometimes i can skip it completely.
• Breakfast and lunch both contain a decent amount of carbs to keep me going.
• I'm quite hypo sensitive and start feeling fed up around the 5.0 mark.

I've been very good with my calculations so far and have done a fair bit of reading up on carb counting. My problem is that when i hypo and after i get myself back up i feel horrid. My DSN keeps reminding me to use a long lasting carb after i've brought myself back up but that doesn't improve my mood at all. I feel tired, short tempered, grumpy and very emotional after every hypo and it doesn't go away until the next day. Sometimes the hypo is only a 3.9er but i'll still feel useless for the rest of the day.

I wish there were a way i could catch the hypo before it happens. I've heard of flash glucose monitoring but i've also heard it's like pulling teeth trying to get one on the NHS and i can't afford one myself. I've run over one phone with a tractor and dropped another in a flooded field so i make it a rule to never take my accuchek out on the farm for fear of it's inevitable demise.

Please help before i start going everywhere with a loaf of safety bread!

 

[Marie 2]

The FGM is the best way to know your numbers. However a couple of other things might help. Lantus is sort of notorious for causing hypos in some people, so maybe switching to a different long acting insulin might help. Also lowering your basal dosing of Lantus so you rely a little more on your quick acting insulin to control your BG levels.

The honeymoon period when you still make insulin can be a bumpy ride because you never know when your pancreas will decide to work. But a 3.9 isn't that bad. I remember when I was in the honeymoon phase I would be a jittery mess at a 3,9. Now I don't feel it. It really is a matter of what you are used to. If you don't go to 3.9 very often you will feel it more. But that's not necessarily a bad thing, especially when you are in the honeymoon phase.

If you want to not feel it so much you would have to spend a little more time with some lower numbers, but without a FGM or CGM that can be trickier and then add that to that the variability of the honeymoon phase and I'm not sure it's a good thing for you to do yet. It can help keep you safe when you aren't stable yet because you feel that low before it becomes critical. And not being used to a 3.9 isn't so bad of a thing.

 

[urbanracer]

Wow, Happy New Year eh?

I agree with @Marie 2 above that glargine based insulin can be difficult - especially with an active lifestyle.

Detemir (branded Levemir) generally keeps your blood glucose levels much flatter and is also the NICE recommended basal insulin for T1's these days.

https://www.nice.org.uk/guidance/ng17

I might suggest that you have been given glargine based insulin because it's cheaper.
Maybe ask your diabetes care team to review this, (be firm but polite - you need to keep them on-side) point out the NICE guidelines and if necessary print it out and take it to the appointment (if they're still doing face to face) and stress the hypo's are interfering with your life.

It is important to maintain contact with your diabetes nurse, GP, endo' or someone who can advise you. They might tell you to reduce your dose.

On a different tack, some of us (myself included) are more likely to hypo during warm weather. During the winter months I was regularly above 9mmol before bed (we eat late) for the past few week I am regularly below 5mmol at bedtime but I am doing nothing different. So usually I back off the insulin a little this time of year and when on holiday in warmer climates.

 

[Daibell]

Hi and welcome. Do ask the GP to swap you to Levemir Basal. My DN justified it as I go the gym (she knew it was a slightly more predictable Basal). It sounds like your Basal doe may also be slightly too high. Do check the balance. It should keep your BS steady when fasting for a good few hours and your morning fasting BS should be in the range 5 to 7 mmol.

 

[kev-w]

I'd say to test more, and if you find yourself testing 8x or more a day then it would be appropriate for the Libre to be prescribed as you'd fall into one of the categories that qualifies for the prescription.

 

[ert]

DAFNE say that hypos are anything below 3.5 mmol/l. A FGM or CGM is a game-changer.

Hypos for me are always connected to my basal insulin. I'm taking Levemir which means you can split your doses. The more active I am, or the hotter the weather the less basal I need.

Since deteriorating onto insulin, my c-peptide has continued to be monitored, and it supports that my body isn't even producing trace amounts of insulin. But I'm still on small amounts of basal (and insulin in general) due to being on a low carbohydrate diet, my insulin sensitivity factor is 500% (calculated by my specialist), and how active I am.

 

[UK T1]

Hiya, and welcome!

Firstly, know that this won't last forever. It sucks, and I hope you start feeling better soon, but there is no reason why this should continue.

Something clearly isn't quite right, so talking to your diabetes team should help. I'm not particularly familiar with lantus, but one of the positives I have always been told about levemir as a basal is that a change in dose will have an effect much faster. I am also quite active, but not every day to the same degree, so was told to amend my levemir according to my activity. From my reading, I think a change in lantus dose can take a bit longer to have an effect on the body, like up to 3-4 days. But do speak to your diabetes team, and explain your lifestyle too as this will help them know the best treatment.

The short term simple solution would be to ask them to guide you in lowering your insulin, with the risk that your glucose levels go high. A big change in glucose will also make me feel awful, so if I spend a few days with glucose readings around 9 like if I'm ill, when they come to 5 I feel hypo. It's all about what your body is used to.

The libre can be obtained via various means on the NHS. I got it as I was testing more than 8 times a day, however they also asked about my work. If you're working somewhere where finger prick testing isn't hygienic, so isn't practical (eg farm, construction etc) then there is a case to be made there. I would also try to increase how often you're testing too, because ultimately it is a money game. If the strips work out more expensive due to frequency of testing then they'll have reason to recommend you for the libre. It also has to be shown that it can improve your control. So for example reducing how many hypos you have would be a metric they'd consider. You'll need something to scan it with, either the reader or a phone, but it gives you a good insight about what is affecting your levels.

Hope this helps a little and that your diabetes team are able to help you, do keep asking questions on here too!

 

[melirose]

The FGM is the best way to know your numbers. However a couple of other things might help. Lantus is sort of notorious for causing hypos in some people, so maybe switching to a different long acting insulin might help. Also lowering your basal dosing of Lantus so you rely a little more on your quick acting insulin to control your BG levels.

The honeymoon period when you still make insulin can be a bumpy ride because you never know when your pancreas will decide to work. But a 3.9 isn't that bad. I remember when I was in the honeymoon phase I would be a jittery mess at a 3,9. Now I don't feel it. It really is a matter of what you are used to. If you don't go to 3.9 very often you will feel it more. But that's not necessarily a bad thing, especially when you are in the honeymoon phase.

If you want to not feel it so much you would have to spend a little more time with some lower numbers, but without a FGM or CGM that can be trickier and then add that to that the variability of the honeymoon phase and I'm not sure it's a good thing for you to do yet. It can help keep you safe when you aren't stable yet because you feel that low before it becomes critical. And not being used to a 3.9 isn't so bad of a thing.

Hey!

I've heard lantus can be more of a hinderance than a help. My biggest problem is that as soon as i start to dip below 5.0 i feel it. If i go below 4.0 i feel like i've been flattened by a bus. I'll definitely speak to my nurse about the possibility of changing the lantus. Thanks for the reply, a different perspective is really helpful!

 

[melirose]

I'd say to test more, and if you find yourself testing 8x or more a day then it would be appropriate for the Libre to be prescribed as you'd fall into one of the categories that qualifies for the prescription.

Hello!

Thanks for the reply. I was testing quite a lot the first two months after i was diagnosed but got a slightly passive aggressive note from my doctor about ordering too many fingerprick cassettes which made me feel like i had to scale back. Maybe i should ring my doctor to speak about this?

 

[melirose]

Hiya, and welcome!

Firstly, know that this won't last forever. It sucks, and I hope you start feeling better soon, but there is no reason why this should continue.

Something clearly isn't quite right, so talking to your diabetes team should help. I'm not particularly familiar with lantus, but one of the positives I have always been told about levemir as a basal is that a change in dose will have an effect much faster. I am also quite active, but not every day to the same degree, so was told to amend my levemir according to my activity. From my reading, I think a change in lantus dose can take a bit longer to have an effect on the body, like up to 3-4 days. But do speak to your diabetes team, and explain your lifestyle too as this will help them know the best treatment.

The short term simple solution would be to ask them to guide you in lowering your insulin, with the risk that your glucose levels go high. A big change in glucose will also make me feel awful, so if I spend a few days with glucose readings around 9 like if I'm ill, when they come to 5 I feel hypo. It's all about what your body is used to.

The libre can be obtained via various means on the NHS. I got it as I was testing more than 8 times a day, however they also asked about my work. If you're working somewhere where finger prick testing isn't hygienic, so isn't practical (eg farm, construction etc) then there is a case to be made there. I would also try to increase how often you're testing too, because ultimately it is a money game. If the strips work out more expensive due to frequency of testing then they'll have reason to recommend you for the libre. It also has to be shown that it can improve your control. So for example reducing how many hypos you have would be a metric they'd consider. You'll need something to scan it with, either the reader or a phone, but it gives you a good insight about what is affecting your levels.

Hope this helps a little and that your diabetes team are able to help you, do keep asking questions on here too!

Hello!

Thank you so much, some days i just sit and snap at anyone who tries to talk to me after i have a hypo and i hate it! The first thing i'm going to talk to my nurse about is Lantus, that seems to be something everyone says!

I think the problem with my lifestyle right now is that it's unpredictable. I've been furloughed from my 'day job' but live on a farm so i've been much more active there. The problem is when i head out to do a job i dont know how long it'll last or how much energy i'll need. I always carry a little pouch of jelly babies with me just in case but it is very frustrating.

I mentioned to kev-w that i used to test around 8 times a day but after a couple of months received a bit of a passive aggressive note from my doctors because i was ordering my cassette test strips too frequently! I didn't know what to do so i bought myself some to tide me over. My Nurse has since spoken to my doctors about this but i still feel nervous when i'm ordering them. I'll speak to my nurse about a CGM but i fear she'll tell me i'm too 'early on in my diabetic journey' to be considered for one!

This has been so helpful and everyone has been so kind! Thank you again.

 

[kev-w]

Hello!

Thanks for the reply. I was testing quite a lot the first two months after i was diagnosed but got a slightly passive aggressive note from my doctor about ordering too many fingerprick cassettes which made me feel like i had to scale back. Maybe i should ring my doctor to speak about this?

https://www.diabetes.org.uk/resources-s3/2018-02/NHS-letter-blood-glucose-monitoring-systems.pdf is a copy of a letter sent a couple of years ago by Diabetes.uk org (national diabetes charity) regarding restriction of access to strips, I'd certain;ly ring the doctor back and point out you are allowed them.

Edit, NICE guidelines https://www.nice.org.uk/guidance/ng17/chapter/1-Recommendations#blood-glucose-management-2 at 1.6.10 and the cgm & Libre guidelines have been relaxed since that document was published.

 

[JMK1954]

If you are having repeated hypos, it makes sense that you need to test more to avoid them. If you are switched to Levimir or any other insulin, again this will require more testing to see what effect it has on your BS levels over the course of your day. A letter from your DSN will almost always have the desired effect if your GP is limiting the test strips he will prescribe, or being awkward about it., so don't worry about ordering your blood-testing stuff. It's hardly your fault that you need them ! If anyone ever accuses you of using too many strips, simply give them an explanation of why you need them. At the moment your level of physical activity has increased and you need more evidence to enable you to make adjustments Just tell them straight. The GPs generally only know the theory of type 1. We all know it's a totally different matter dealing with it in real life.

 

[melirose]

If you are having repeated hypos, it makes sense that you need to test more to avoid them. If you are switched to Levimir or any other insulin, again this will require more testing to see what effect it has on your BS levels over the course of your day. A letter from your DSN will almost always have the desired effect if your GP is limiting the test strips he will prescribe, or being awkward about it., so don't worry about ordering your blood-testing stuff. It's hardly your fault that you need them ! If anyone ever accuses you of using too many strips, simply give them an explanation of why you need them. At the moment your level of physical activity has increased and you need more evidence to enable you to make adjustments Just tell them straight. The GPs generally only know the theory of type 1. We all know it's a totally different matter dealing with it in real life.

Hi!

Thanks for this, i'm going to up my testing back to what i was doing before i started limiting it. Hopefully this helps me get sorted. The note i got made me feel quite embarrassed after all the comments on this thread i feel a little more confident about speaking to my DSN or doctor if needs be. Thank you again! I feel so much better already.

 

[Antje77]

Hi!

Thanks for this, i'm going to up my testing back to what i was doing before i started limiting it. Hopefully this helps me get sorted. The note i got made me feel quite embarrassed after all the comments on this thread i feel a little more confident about speaking to my DSN or doctor if needs be. Thank you again! I feel so much better already.

My GP practice nurse (who was overseeing my treatment at the time with a T2 misdiagnosis, but on long and short acting insulin already) tried to pull that trick on me once, wondering why I would need more than 4 test strips a day. She never made a fuss over my extra teststrips again after my explanation, which went something like this:

"To regulate your diabetes on insulin I think the recommendations are to test before and two hours after every meal. Which makes for 6 or 8 tests a day. You told me to test upon waking and before bed, makes 8 or 10.
Add extra testing when feeling off, when eating unusual foods, when exercising, during and after a hypo, when driving and when ill. I don't see how I could go with less than 11 tests a day, on average. I don't know how those other diabetics do it, but I'm minded to avoid complications if I can, and I need to test to do so."

Mind, she's a lovely woman, and she helped me a lot when getting used to my new life so she took it very well
I think it helped a lot when I simply counted out the recommended testing times, she just hadn't realised I guess. Tone of voice is key though, when you want to try the same!
By now, I've been using the Freestyle Libre for over 3 years, self funded at first but now I get them funded, finally.

 

[UK T1]

It seems to depend on the GP - When I was first diagnosed my DSN sent a letter to my GP with all my meds and expected frequency of use. That included 4 tests a day. I was doing lots of sport so testing more (according to advice from my diabetes team), and turned up to the pharmacy a few times to find the GP had refused half my script because they had an automated system telling them I didn't need it. A quick email to my DSN and she contacted my surgery and they raised the limit.

I've since moved around a bit so been with a few different GPs and always tried to explain myself and my need and usage of strips. Imagine my surprise when my current practice stopped me to say: oh we don't ever refuse those requests, good diabetes management saves the NHS money in the long run!!

As said above, if you're questioned quote the guidance. They're probably only questioning you because some auto pop up has appeared on your notes saying you're asking for expensive scripts. But that is necessary to manage diabetes, and that will prevent you from needing more expensive treatment in the future. Oh and is also simply you following the advice of the diabetes team. Good luck!