# Advice



## LittleSunflower (Apr 1, 2021)

Hello all, hope you’re all keeping well.
I am in need of a little advice from you; over the past few months I have been unintentionally losing weight. I am part of the NDPP (NHS Diabetes Prevention Programme) for Type 2 which requires me to weigh myself before every session (roughly every 4 weeks). I have lost 9lbs over the course of what I believe is 2-4 months. If you’ve read my previous posts, you know my result came back as 50-51 (when tested twice) which puts me in the diabetic range. There is a history of type 1 but also thyroid issues that run in my family. I was not fully tested for this, this year. I was only tested for Diabetes with one tube of blood (whereas I believe a HBA1C is 3 tubes normally.) I was referred to the Diabetic clinic at the hospital but the wait is 14 weeks. I do not know my diagnosis and it’s quite honestly making me stressed and anxious too.
I feel silly ringing places over and over again as I know they’re busy but I’m just not getting any answers and am becoming increasingly concerned about my weight loss. I have felt hungry, daily headaches (especially in the evening) and very thirsty within the past week.
I have tested myself this morning upon waking and it was 11.5/mmol.
Any advice on what to do next? Thank you.


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## rebrascora (Apr 1, 2021)

Hi. Can you explain what NDPP is please. I am not familiar with that abbreviation and others may not be too.

As regards your weight loss, do you have obvious weight to lose or are you already at a normal or low BMI. The weight loss you mention is not excessive in my opinion, so it will depend if you have modified your diet and if so in what way. I know I was losing a steady 2-3lbs a week for 6 weeks in the early days of my diagnosis, and I was about 2st down by the time I was started on insulin.

HbA1c only needs one phial of blood but other phials are sometimes taken to check other things like Lipids and Liver/kidney function etc. An HbA1c of 50-51 is only just over the diabetes threshold so I would be surprised if you would experience symptoms at that level, but obviously things can change so it would depend when that test was. If it was over 6 months ago then you could ask for another HbA1c as you are seeing higher BG levels. 11.5 is certainly higher than ideal but not a huge cause for concern as a one off. What are your daytime readings like pre and 2 hours post meal? 
Have you had your Covid Vaccine recently as that is causing BG upheaval for quite a few of us and I am still seeing consistently higher BG levels 7 weeks later. 

If you  can supply more information in response to the above questions then it might give us a greater insight into your situation.


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## LittleSunflower (Apr 1, 2021)

Hello, sorry about that. I have clarified it. (NHS Diabetes Prevention Programme).

No, I do not have weight to lose. If anything, I was trying to gain weight!
I was borderline underweight when I had my bloods done so now I am definitely in the underweight category, so you can see my concern. (BMI is around 17.5 whereas it was 18.5). I have upped my fruit and veg intake, have been trying to watch how many carbs I am eating, increasing my exercise and cutting out the junk but it hasn’t been a dramatic change in diet as of yet, honestly.

The blood test for my 50-51 result was only done 2 months ago so it hasn’t really been that long since and I have not had a vaccination.

In regards to at home testing, I have only just managed to get a monitor so this is my second reading but first test for upon waking. I will have to update you on the before and after a meal results.


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## rebrascora (Apr 1, 2021)

Thanks for that additional info. It paints a lot clearer picture and I can see how the weight loss is a big concern.
Testing immediately before food and then 2 hours after is the strategy that we recommend along with keeping a food diary. You are looking for a rise of no more than 3 mmols. Don't worry too much about the pre meal reading. It is the difference between the before and after which is more important initially and what you ate. That will show how you are responding to carbohydrates in your diet. 
If it is a slower developing Type 1 (which it sounds like) and your levels are steadily rising then your GP or perhaps a specially trained practice nurse can start you on insulin if you need it before you get your clinic appointment or they could perhaps contact the clinic to bump your appointment. I would keep a food diary for a few days/week or so along with your readings and then get back to your GP if things are clearly escalating.


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## Ljc (Apr 1, 2021)

Hi .Tbh I think they need to contact the diabetes specialists to get your appointment bumped up.
I too am wondering if you might have a slower onset T1 like myself, it’s called , diabetes LADA ( latent auto immune disease in adults or 1.5 ) its  actually quite rare so your practice nurse or Gp may not have heard of it .  It’s very often mistaken for T2 as it usually initially responds to T2 medications, in my case for years and years , then insulin is needed. 

The tests for T1  ie the C -peptide and or the GAD antibody test is what you need to determine if you have T1 or LADA . 

I know you are worried and I understand why .
If you should suddenly start to feel unwell, then get to A&E , don’t drive yourself ok.


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## Inka (Apr 1, 2021)

Hello again @LittleSunflower I can see why this is worrying you. I responded to you before about your uncertain diagnosis. It’s the uncertainty that’s causing worry - and I can see why, especially with the weight loss and your low BMI.

As you’ve lost weight, I’d go back to your doctor and tell them this. But first I’d be eating a meal with a normal amount of carbs, testing before you eat and then testing again at 2hrs after your first bite of food.


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## LittleSunflower (Apr 1, 2021)

Inka said:


> Hello again @LittleSunflower I can see why this is worrying you. I responded to you before about your uncertain diagnosis. It’s the uncertainty that’s causing worry - and I can see why, especially with the weight loss and your low BMI.
> 
> As you’ve lost weight, I’d go back to your doctor and tell them this. But first I’d be eating a meal with a normal amount of carbs, testing before you eat and then testing again at 2hrs after your first bite of food.


Hello @Inka, yes I remember, thank you. I have just tested before dinner and my result was 16.2 mmol. I’ve never seen a reading this high before. What does this mean, do you know?


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## Inka (Apr 1, 2021)

LittleSunflower said:


> Hello @Inka, yes I remember, thank you. I have just tested before dinner and my result was 16.2 mmol. I’ve never seen a reading this high before. What does this mean, do you know?



16.2 is well above the normal range but not ‘awful’ so don’t panic. It will be interesting to see your 2hr result.
Your blood sugar has probably gone up during the day simply because you ate. Obviously you need to eat!

If you can get a few readings like this, it will be good information for your doctor. If you’re near a chemist tomorrow, you could also get some Ketostix to test for ketones in your urine. I think they’re fairly cheap.


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## LittleSunflower (Apr 1, 2021)

Inka said:


> 16.2 is well above the normal range but not ‘awful’ so don’t panic. It will be interesting to see your 2hr result.
> Your blood sugar has probably gone up during the day simply because you ate. Obviously you need to eat!
> 
> If you can get a few readings like this, it will be good information for your doctor. If you’re near a chemist tomorrow, you could also get some Ketostix to test for ketones in your urine. I think they’re fairly cheap.


My 2 hour result has come back as 16.4?

Yes, after having tested today I am much more comfortable with the testing. Worked myself up about the first one, now I hardly feel it. 
I will check the chemist for those thank you


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## Inka (Apr 1, 2021)

You started the meal high but that’s not a big rise at all @LittleSunflower What did you eat?


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## LittleSunflower (Apr 2, 2021)

Inka said:


> You started the meal high but that’s not a big rise at all @LittleSunflower What did you eat?


@Inka surprisingly a high carb meal (around 50g in total) which I was worried would make the result higher. It was a chicken and mushroom pie and a handful of chips (not the healthiest I know).


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## Inka (Apr 2, 2021)

That’s certainly an ‘enough carbs’ meal so that’s very interesting. I think I’d be tempted to eat the same again and test at 1, 2 and 3 hours (in case the fat delayed a rise).


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## LittleSunflower (Apr 2, 2021)

Inka said:


> That’s certainly an ‘enough carbs’ meal so that’s very interesting. I think I’d be tempted to eat the same again and test at 1, 2 and 3 hours (in case the fat delayed a rise).


If my levels continue to be high, as they were yesterday, what exactly does this mean and how can I bring them down? I’ve read people have medication to help but obviously I’m awaiting the specifications around the help I receive in relation to my diabetes. It doesn’t help my anxiety at all, not knowing which type I am or what’s causing the weight loss and now seeing a high reading when checking levels.


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## Inka (Apr 2, 2021)

I’m not in any way a medical professional @LittleSunflower so I can’t say. I would have expected your blood sugar to go up after a carby meal so your result is surprising to me as a person with Type 1. That does _not_ mean it’s wrong or anything bad.

We have the long weekend now so don’t worry about any more experiments for a few days. Enjoy the Easter break. If you’re ok about it keep testing, but leave it till next week if you prefer.

I don’t think your results above can determine your type by themselves. They will be clues that will help, not an automatic answer. When I was diagnosed as Type 1 many years ago, the consultant didn’t do any blood tests. She said I was young, slim and had excellent insulin sensitivity so it was Type 1. It was only many years later that I had the tests to confirm that. Although we think of just the three basic types of diabetes, we can present in different ways and that can complicate diagnosis.


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## everydayupsanddowns (Apr 4, 2021)

Sorry to hear that the uncertainty over your diabetes type is causing you so much anxiety and upset @LittleSunflower 

Diabetes can be a tricky little gremlin to tie down. An accurate diagnosis is really important in terms of accessing the most appropriate treatments and technologies - but it isn’t always easy because diabetes doesn’t always play by the rules.

Often it’s a matter of balancing the clinical factors in the presentation, but sometimes these factors aren’t 100% clear. Sometimes additional checks like GAD antibody or cPeptide can help, but these are not necessarily conclusive in themselves so they aren’t checked as a matter of routine.

This all makes classification of some of the rarer types of diabetes a bit of a nightmare for GPs and non-specialists unfortunately.

Hope you soon get some clarity, and an effective and appropriate treatment plan really soon, and can begin to move forwards and tackle your weight loss, which must be very worrying for you


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## LittleSunflower (Apr 6, 2021)

Hello all, a little update for you. I am being started on insulin this week for what they believe is LADA. It seems I have been in some sort of honeymoon period and now my levels are fluctuating all over the place (always higher than what the normal should be). My level when tested by the nurse earlier was a concerning 21.7! A very near trip to the hospital.
I’m very anxious about everything as I’ve been fed a lot of information today.
Thank you for the encouragement to continue asking what’s going on. I am so grateful for the amazing nurses who dealt with me at my GP surgery today. They made it their mission to provide me with answers and more information by the end of the day and that’s exactly what’s happened, definitely got the ball rolling.


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## rebrascora (Apr 6, 2021)

So pleased to hear you are getting good support and a clearer idea of your diagnosis and starting on insulin. I know it is not what anyone wants but it is the appropriate medication to treat your diabetes and hopefully you will start to feel a lot better soon. Feel free to ask any questions you have here on the forum because the answers will help you to have more informed conversations with the nurse when they start you on insulin. I found it was a big shock to my system being told I was starting on insulin and a lot of it was a blur but learning from people here on the forum both before and afterwards helped bits of information click into place.

They should be starting you on a basal/bolus insulin regime where you will have a slow release insulin to cover the glucose trickled out by your liver when you are not eating. through the night etc, to ensure a ready supply of energy for your brain and other vital organs to keep functioning and fast acting (bolus) insulin to cover the carbs in the food you eat.

Anyway, look forward to you reporting back once you have started on insulin and feeling a lot better but in the meantime shout up if you are confused about anything.


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## Inka (Apr 7, 2021)

Finally @LittleSunflower ! That’s great news   Getting the right treatment will make a huge difference. I completely understand that you might be anxious about the insulin, but remember you’ll be started on small doses and that will gradually be increased as necessary. It is a big change, but it should make you feel much better in yourself.

LADA is a form of Type 1 as you probably know. Make sure you get a Type 1 insulin regime not just a basal/background insulin. Don’t be afraid to ask questions - as many as you want and need to.


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## Ljc (Apr 7, 2021)

@LittleSunflower . I am so pleased to hear that you are going to get the right treatment at long last. Yes it is a lot to take in at first , but you will get there, honest ! I am also a little surprised in a good way that they have heard about. LADA. 

Do you know yet what insulin’s you are on.


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## LittleSunflower (Apr 7, 2021)

Ljc said:


> @LittleSunflower . I am so pleased to hear that you are going to get the right treatment at long last. Yes it is a lot to take in at first , but you will get there, honest ! I am also a little surprised in a good way that they have heard about. LADA.
> 
> Do you know yet what insulin’s you are on.


I have been prescribed Levemir and Novorapid.


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## Inka (Apr 7, 2021)

LittleSunflower said:


> I have been prescribed Levimir and Novorapid.



Sounds ideal


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## SB2015 (Apr 7, 2021)

Hi @LittleSunflower from another late starter.  I was 53 at diagnosis.
The slower onset often leads to some confusion at diagnosis.  I am very pleased that they have now sorted things out and that you have a good team supporting you.

It is a lot to take in at the start but once you get the hang of adjusting your own doses  of insulin life becomes a lot more flexible and you will begin to see a lot more BG values in range.

Two books that I found very useful at the start were


Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas (ignore the age reference, just ignore the chapter on starting school!
Think Like a Pancreas by Gary Sheiner.  Not such an easy read but very useful.
There is loads of help on here drawing on so much practical experience, as well as lots of support.
Just ask any questions that you have.


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## LittleSunflower (Apr 7, 2021)

Inka said:


> Sounds ideal


Dosage is 8 in the morning and 6 in the evening. Only starting on the Levemir to begin with. They believe it is Type 1 and I have to have another HBA1C soon as my symptoms no longer match my previous result.
Spoke about getting a Libre device fitted next week?


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## Ljc (Apr 7, 2021)

LittleSunflower said:


> I have been prescribed Levemir and Novorapid.


I was realllly hoping to hear this.  As once you learn how to adjust  Novorapid yourself (don’t worry they will eventually teach you how ) it is far far more flexible than the twice a day mixed insulin .

They usually start us off conservatively, although they have a formula to go by, they don’t really know how much insulin we actually need.  Also they need to bring our levels down gradually else we suffer from some unpleasant symptoms, which are usually temporary. 
I hope you are not too worried about going onto insulin.


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## trophywench (Apr 7, 2021)

Great!  For MDI purposes I'm a great fan of Levemir - and you can adjust doses of it so quickly - in comparison with such things as Lantus where you need to wait for a full 3 days between even very slight adjustments up or down, to be certain whether it's worked or not.  I never expect anything to be instant but with 'my mate' you can generally see what effect you've got after c. 12 hours!

Been using Novorapid since 1998 - and still using it.  If it ain't broke, I don't see any need to try and fix it, frankly.


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## LittleSunflower (Apr 7, 2021)

trophywench said:


> Great!  For MDI purposes I'm a great fan of Levemir - and you can adjust doses of it so quickly - in comparison with such things as Lantus where you need to wait for a full 3 days between even very slight adjustments up or down, to be certain whether it's worked or not.  I never expect anything to be instant but with 'my mate' you can generally see what effect you've got after c. 12 hours!
> 
> Been using Novorapid since 1998 - and still using it.  If it ain't broke, I don't see any need to try and fix it, frankly.


Thank you. With Levemir, I have my first dose of 6 units this evening. I am very nervous about injecting. Do you have any advice? Any side effects that you have experienced or I should be aware of?


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## Bruce Stephens (Apr 7, 2021)

LittleSunflower said:


> Any side effects that you have experienced or I should be aware of?


Not for Levemir. I can't remember anyone reporting anything bad with it: there's a reason it's the first line recommendation from NICE.


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## LittleSunflower (Apr 7, 2021)

Bruce Stephens said:


> Not for Levemir. I can't remember anyone reporting anything bad with it: there's a reason it's the first line recommendation from NICE.


Thank you for the reassurance. I’m known for being a worrier, even about the littlest of things so you can imagine the worry that comes with such a shock of life changing information!


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## trophywench (Apr 7, 2021)

Well I'd already had diabetes for 30 ish years by the time I gained agreement to swap to it, so it was a blessed relief as far as I was concerned to have my first jab of night-time insulin that didn't sting like Lantus did! - I stress that Lantus doesn't/didn't sting everyone, so I was just unlucky there.


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## LittleSunflower (Apr 8, 2021)

My morning levels are surprising after last nights first dose of insulin.. I’m in the 5s! Usually in double figures.


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## rebrascora (Apr 8, 2021)

Wow! That has dropped you pretty quickly. They normally calculate the dose to bring your levels down more slowly, but you might be quite sensitive to insulin, especially with being so slim. Do keep your hypo treatment close to hand and take it easy today exercise wise, but congratulation on a lovely mid range fasting reading.


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## LittleSunflower (Apr 8, 2021)

rebrascora said:


> Wow! That has dropped you pretty quickly. They normally calculate the dose to bring your levels down more slowly, but you might be quite sensitive to insulin, especially with being so slim. Do keep your hypo treatment close to hand and take it easy today exercise wise, but congratulation on a lovely mid range fasting reading.


Thank you
Should I be concerned that it’s dropped quickly after just one dose? I have to have my higher dose of 8 units this morning - will this keep things regulated, not decrease the number?


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## rebrascora (Apr 8, 2021)

It is very hard to say how any individual will respond to insulin because we are all very different. Do you have the option to speak to your nurse before you take the second dose or perhaps delay it a bit in order to do so? Most people need more basal insulin during the day than at night (for instance I am currently having to take 25 units in the morning and none at night to keep my levels right) so it may be fine to take the 8 but I would have a quick word with the nurse first if you are able. 
Are you also going to be using the NovoRapid today? If not, then the Levemir dose this morning should be fine even if you don't manage to speak to the nurse.


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## rebrascora (Apr 8, 2021)

How did you manage with the injection last night? I am guessing that was your first?


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## Inka (Apr 8, 2021)

LittleSunflower said:


> My morning levels are surprising after last nights first dose of insulin.. I’m in the 5s! Usually in double figures.



I’d speak to your nurse as they might consider dropping your evening Levemir ever so slightly. They might not, but it’s worth checking.

As regards your morning 8 units, I’d suggest taking it and seeing how it goes this first day. Test lots and keep those results for your nurse. Even if the daytime Levemir works ok today, it might be reduced when the Novorapid is introduced.


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## LittleSunflower (Apr 8, 2021)

@rebrascora @Inka I managed to get into contact with the nurse and she said to reduce it to 6 for the dose this morning (of which I did) as it seems like I am very sensitive to insulin, like you said. 
My level after some breakfast was just over 10 so it had gone back up. 
I am struggling to inject myself but it went ok. It’s been a whirlwind couple of days, it’s difficult to draw blood for the readings too as my hands don’t keep the warmth for long after washing prior.


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## rebrascora (Apr 8, 2021)

You will get better at both the injecting and finger bodging. The saying "practice makes perfect" is a true saying but totally sympathize with getting your head around it in the beginning. 
Which part of the injecting process causes you the most difficulty? Is it the actual insertion of the needle? There is something called the "Tickle Flex" which can be purchased and fits on the end of the insulin pen needle to make injecting easier. I haven't used one myself but might be something worth researching if it continues to be a problem for you. 
Are you finding injecting painful or is it just the thought of it? There are certainly some sites which are more numb and I don't feel it at all and others where it is really painful and many more sites where it is somewhere in between. Not sure if this is normal as some people say injections shouldn't hurt and some of mine definitely do but nothing I can't cope with. Sometimes I touch the needle to the skin and if it hurts I move it to another location that doesn't before I push it in and inject. Sometimes I find pinching the flesh helpful, even though the current guidance is that you don't need to.

Anyway, pleased you spoke to the nurse and got some guidance. Did she say anything about reducing your night time dose or is that to stay the same for now? Will she be checking in with you again tomorrow?


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## LittleSunflower (Apr 8, 2021)

rebrascora said:


> You will get better at both the injecting and finger bodging. The saying "practice makes perfect" is a true saying but totally sympathize with getting your head around it in the beginning.
> Which part of the injecting process causes you the most difficulty? Is it the actual insertion of the needle? There is something called the "Tickle Flex" which can be purchased and fits on the end of the insulin pen needle to make injecting easier. I haven't used one myself but might be something worth researching if it continues to be a problem for you.
> Are you finding injecting painful or is it just the thought of it? There are certainly some sites which are more numb and I don't feel it at all and others where it is really painful and many more sites where it is somewhere in between. Not sure if this is normal as some people say injections shouldn't hurt and some of mine definitely do but nothing I can't cope with. Sometimes I touch the needle to the skin and if it hurts I move it to another location that doesn't before I push it in and inject. Sometimes I find pinching the flesh helpful, even though the current guidance is that you don't need to.
> 
> Anyway, pleased you spoke to the nurse and got some guidance. Did she say anything about reducing your night time dose or is that to stay the same for now? Will she be checking in with you again tomorrow?


Insertion of the needle is the main one, it can hurt when inserted but my nurse said this was because I am so anxious, my body is tensed up (we did a few dummy tries together). Finger pricking, again, pressing the button is a big thing for me. It’s funny how I can manage setting everything up but the main part, I struggle with currently. No mention of any change to night time dose and I am expecting to be contacted tomorrow for a check in which is nice to know. 
No mention of starting Novorapid either as they’d like to see how I react to Levemir first. I’m not a big meal eater, more of a snacker so the nurse said Levemir is fitting for me.


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## Inka (Apr 8, 2021)

LittleSunflower said:


> Insertion of the needle is the main one, it can hurt when inserted but my nurse said this was because I am so anxious, my body is tensed up (we did a few dummy tries together). Finger pricking, again, pressing the button is a big thing for me. It’s funny how I can manage setting everything up but the main part, I struggle with currently. No mention of any change to night time dose and I am expecting to be contacted tomorrow for a check in which is nice to know.
> No mention of starting Novorapid either as they’d like to see how I react to Levemir first. I’m not a big meal eater, more of a snacker so the nurse said Levemir is fitting for me.



Hmmm... Apologies if it was you I said this to already, and I’m repeating myself, but Levemir is a basal/background insulin. It’s purpose is to keep your blood sugar in range in the absence of food. It is _not_ to deal with food.

Even if you only need small amounts of insulin, it’s better to have the two separate kinds because they do different things.


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## rebrascora (Apr 8, 2021)

I find the pain is much more down to the nerves at the site as I don't suffer anxiety with my injections and finding a place where I can't feel it when I just touch the needle to the skin makes a big difference. Are you just using your stomach at the moment? Just wondering if you might be less uptight injecting into your thighs or buttocks. I tend to inject my Levemir into my thighs or buttocks and keep my abdomen for my bolus insulin as it seems to absorb a bit more rapidly there, whereas it doesn't matter with the Levemir as it is slow release anyway. Just something else to consider.


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## rebrascora (Apr 8, 2021)

@Inka I think they are going to introduce the NR into the equation once they have the Levemir dose near enough right. I believe it has been prescribed so this seems to be just an interim period of gentle adjustment into insulin usage.


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## LittleSunflower (Apr 8, 2021)

rebrascora said:


> I find the pain is much more down to the nerves at the site as I don't suffer anxiety with my injections and finding a place where I can't feel it when I just touch the needle to the skin makes a big difference. Are you just using your stomach at the moment? Just wondering if you might be less uptight injecting into your thighs or buttocks. I tend to inject my Levemir into my thighs or buttocks and keep my abdomen for my bolus insulin as it seems to absorb a bit more rapidly there, whereas it doesn't matter with the Levemir as it is slow release anyway. Just something else to consider.


I was told it has to be stomach only, no thighs, arms or anywhere else.


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## Inka (Apr 8, 2021)

LittleSunflower said:


> I was told it has to be stomach only, no thighs, arms or anywhere else.



Im on a pump but when I inject I use my thighs and arms. My favourite place is the thigh. There’s no reason why you can only use your tummy. Years ago, I always injected my basal in my thigh.


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## Inka (Apr 8, 2021)

rebrascora said:


> @Inka I think they are going to introduce the NR into the equation once they have the Levemir dose near enough right. I believe it has been prescribed so this seems to be just an interim period of gentle adjustment into insulin usage.



Ah, I read it as them possibly only giving the Lev (especially the second part of what I quote below:

“_No mention of starting Novorapid either as they’d like to see how I react to Levemir first. I’m not a big meal eater, more of a snacker so the nurse said Levemir is fitting for me.”_

I see @LittleSunflower liked your post, so you’re clearly correct. I’m obviously super-sensitive to any hint of substandard treatment. I think I mentioned before a friend was messed around for ages and became quite ill. I have a hair-trigger for that now


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## LittleSunflower (Apr 8, 2021)

@rebrascora In regards to my levels this morning and you saying to keep my hypo treatment close was a good call. I felt really off so tested again, my levels had dropped to 4! No wonder.
 I feel like I’m on a rollercoaster ride, with the fluctuating levels although I’m starting to have some sort of idea beforehand to what my levels might be due to how I’m feeling at certain times.


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## Ljc (Apr 8, 2021)

LittleSunflower said:


> I was told it has to be stomach only, no thighs, arms or anywhere else.


Oh dear . Nursie gave you a bit of wrong info on injection sites
Here is a pic of suitable sites.


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## rebrascora (Apr 8, 2021)

Sorry to hear you had a near hypo but sounds like you have good awareness and it is better that you experience that first one particularly, at a time when you are half expecting it. Well you probably weren't expecting it when your levels were at 10 earlier but you were at least sort of half forewarned and hopefully in a nice safe environment when it happened. Unfortunately some of us struggle with swings like this quite a lot whereas other people's levels seem to have a damper on them and react more slowly or respond predictably. That isn't to say that you will always be like that but you will get more used to and confident dealing with these situations in the same way as you will get more confident doing your injections.

I am a little concerned about your Levemir dose being left at 6units again for tonight now that this has happened. I would recommend you push your BG up a little bit at bedtime perhaps with a couple of digestive biscuits and set an alarm to check your levels at 2-3am. Has the nurse suggested a BG level for bedtime that she doesn't want you to go below? Ie Don't go to bed with a BG less than 8mmols... or whatever? Because in the circumstances I would be aiming for at least 10. What was your reading last night at bedtime or were you not testing then?


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## Ljc (Apr 8, 2021)

Mmm. Sounds like you need another reduction, see if you can contact your nurse again

Yes keep those hypo treatments glossed hy you
As you don’t want to attempt negotiating dangerstairs when your legs have gone to jelly .
I’ve even got some in my downstairs loo. 

One good thing is, you now know your hypo signs.


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## Inka (Apr 8, 2021)

I agree with @rebrascora I don’t think I’d take the full 6 units of Levemir tonight if I was you. Remember you’ve been high, then started the insulin and dropped quite quickly. You now have insulin working and your starting level of blood sugar is lower. If the Levemir made you drop to the 5s in theory it could make you drop lower overnight tonight.

I can only say what I’d do, of course, but I’d take 4 or 5 units not 6. Nocturnal hypos and hypos early in the morning are something to be avoided as much as humanly possible.


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## rebrascora (Apr 8, 2021)

Must confess, I was reluctant to suggest a dose change for tonight (because we are really not allowed to give that sort of opinion), but @Inka, @Ljc and myself are thinking very much along the same lines. If you haven't had bolus insulin today and 6 units of Levemir have dropped you like that when it has been dealing with food as well as basal needs and bearing in mind that Levemir acts for approx 17-18 hours, so there will be some overlap with your dose tonight, albeit only slight because it tails off, you are theoretically going into tonight with slightly more insulin than last night and probably a lower BG. If you are able to talk to the nurse tonight please do so. Definitely set an alarm and check through the night and make your own mind up about a reduction in dose. We are all taught that it is better to err on the side of caution, which means safer to be too high than too low. Nurse might not be happy with you tomorrow if you make a dose change, or might be proud of you for using your gumption (depends how good she is) but she is not the one risking a nocturnal hypo.


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## silentsquirrel (Apr 8, 2021)

I found breathing OUT as I inject helps if tense.  Put pen and needle in place (and personally I find stomach easiest!), breathe in gently then sort of do a big breath out through your mouth against the needle, hardly any effort needed to push the needle in as you breathe out.


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## Ljc (Apr 8, 2021)

@rebrascora , you have read my mind.


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## LittleSunflower (Apr 8, 2021)

Ljc said:


> Oh dear . Nursie gave you a bit of wrong info on injection sites
> Here is a pic of suitable sites.
> View attachment 16641


Would the injection site change because of low body weight?


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## LittleSunflower (Apr 8, 2021)

Thank you all for your replies. I have been unable to contact the nurse tonight in regards to dose   I am reluctant to change the dose myself even though I am equally worried about going low during the night. I know my levels have dropped quite significantly, quickly which is concerning having read and been told it can damage eyesight.
For context
My bedtime reading last night was 12.4 and I had the 6 units of levemir for the first time. I had another 6, decreased from 8 (as advised from nurse) this morning as I was 5.5 upon waking. I had some breakfast and was 10.8 afterwards. I was unable to take a lunch time reading as my fingers weren’t drawing enough blood. This afternoon before dinner, I felt a bit off and was 4.2
I haven’t been told a recommended level to be before bed, I will definitely ask as I am expecting to talk with the nurse tomorrow. Since testing, I have always been double figures when checking BG at bed time so having had more low figures (than what I’m used to seeing) throughout today, I’m intrigued to see what it reads later on tonight.


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## rebrascora (Apr 8, 2021)

I would take your levels back up to at least 10 tonight with the aid of some digestive biscuits or wholemeal toast. A digestive biscuit is about 10g carbs so should increase your levels by about 3mmol, a slice of toast is 15g carbs so will increase it by about 4.5mmols. Personally I would push my BG up to at least where they were last night and still set an alarm if I was you and I was sticking with the 6 units..... totally respect your decision on that. 

The risk to your eyesight is much more to do with dropping your HbA1c too rapidly rather than these short term fluctuations. Obviously they are to be avoided if possible but for many of us that is not always possible.... it often happens to me. The concern for those of us commenting is that you will have a nocturnal hypo. These can be harder to detect because you are lying down and sleeping and the Levemir drops you much more slowly so you don't feel it so obviously. Please keep hypo treatment and test gear right next to your bed for easy access. At least 2 or 3 lots of hypo treatment, not just one, because sometimes the first one doesn't bring you up enough. Also if you live sleep with someone make them aware of the situation so that they can encourage you to take carbs if they notice you are not right. Some people become resistant when they drop too low. I don't mean to frighten you but nocturnal hypos are much more serious and to be avoided as much as possible. Really just trying to prepare you for any eventuality to keep you safe.


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## LittleSunflower (Apr 8, 2021)

I take Levemir around 9:30pm, when would you suggest I eat the biscuits in order for levels to rise, for it to show up on the bed time BG reading and before insulin? 

Thank you for all of the information, it is frightening but I’d rather be aware than for something to happen and not know what’s going on. If I do have a hypo and have to treat it, should I be testing afterwards to see if the treatment has raised my levels too?


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## rebrascora (Apr 8, 2021)

Absolutely, you should retest. It is referred to as the 15 rule. !5 g carbs for a hypo and test 15 mins later and then retreat if still below 4 with another 15g carbs and check again in another 15mins, then a small longer acting carb like a digestive biscuit once you are above 4. 
 You are going to inject the insulin regardless so test when you do that and then again at bedtime. That will give you an idea of whether it is going up or coming down in that interim period. If you are say 8.5 at 9.30pm and 9.4 at bedtime then it is obviously rising slightly at that point and I would probably just have 1 digestive but if you are in the 6s when you inject the Levemir and an hour or two later at bedtime you have dropped and are in the 5s or 4s you are going to need a midnight feast of long acting carbs and maybe throw in some nuts or cheese to bring you up to be safe to go to bed and hopefully hold you steady. Most of us are more insulin responsive in the evening so it is possible that you will be dropping towards bed time rather than increasing or static, depending upon what you had for your evening meal and when you had it. Carbs usually release most of their glucose into the blood stream within 2 hours of eating them. If you had a lot of fat with them.... something like a pizza.... then that can delay the breakdown of the carbs for another hour or two. Lentils and other high fibre foods can take longer than 2 hours to break down but it is quite individual.


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## LittleSunflower (Apr 8, 2021)

There’s still so much to learn. I didn’t retest earlier when my reading was 4  it’s too late to do it now isn’t it? 
I have been advised to test before every meal, before bed and when I don’t feel right. Is it also correct that insulin doses should be 12 hours apart if I take one in the morning and one before bed? I am asking from your own knowledge, not medically as I understand we’re not supposed to comment on things like that. 
I am reluctant to reduce my dose as I don’t feel comfortable, as I said but my anxiety is definitely rising thinking it may be too much as there is an overlap, even with carb intake beforehand.


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## Inka (Apr 8, 2021)

LittleSunflower said:


> Thank you all for your replies. I have been unable to contact the nurse tonight in regards to dose   I am reluctant to change the dose myself even though I am equally worried about going low during the night. I know my levels have dropped quite significantly, quickly which is concerning having read and been told it can damage eyesight.
> For context
> My bedtime reading last night was 12.4 and I had the 6 units of levemir for the first time. I had another 6, decreased from 8 (as advised from nurse) this morning as I was 5.5 upon waking. I had some breakfast and was 10.8 afterwards. I was unable to take a lunch time reading as my fingers weren’t drawing enough blood. This afternoon before dinner, I felt a bit off and was 4.2
> I haven’t been told a recommended level to be before bed, I will definitely ask as I am expecting to talk with the nurse tomorrow. Since testing, I have always been double figures when checking BG at bed time so having had more low figures (than what I’m used to seeing) throughout today, I’m intrigued to see what it reads later on tonight.



You want to bed at 12.4 and dropped almost 7mmol to 5.5 : /
You’ve only just been started on insulin (you should have had it earlier) and the amounts chosen are not ‘magic’ amounts that you need - they’re guesses You’ve already had one of your twice daily injections reduced by 25%....

I’d feel bad if I didn’t repeat what I’d do from above - I’d reduce your evening Levemir. Having had serious nocturnal hypos myself, it simply isn’t worth the risk.


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## Inka (Apr 8, 2021)

LittleSunflower said:


> Would the injection site change because of low body weight?



No, and if it did, it’s more likely that you’d be recommended to use your thigh or bum. I’m slim and use my thighs, arms, bum, tummy just as shown above on that chart.


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## LittleSunflower (Apr 8, 2021)

Inka said:


> You want to bed at 12.4 and dropped almost 7mmol to 5.5 : /
> You’ve only just been started on insulin (you should have had it earlier) and the amounts chosen are not ‘magic’ amounts that you need - they’re guesses You’ve already had one of your twice daily injections reduced by 25%....
> 
> I’d feel bad if I didn’t repeat what I’d do from above - I’d reduce your evening Levemir. Having had serious nocturnal hypos myself, it simply isn’t worth the risk.


I am beginning to think the same. I’m sorry you’ve had to go through them, they sound scary, 
I’mthinking of reducing it by the same as this morning. So 6 to 4 tonight, check levels, still 6 in the morning as today then to discuss with the nurse tomorrow?


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## Inka (Apr 8, 2021)

That’s what I’d do if I was in your situation @LittleSunflower Its far preferable to be a little bit high in the morning than to risk a hypo. Indeed, you might not even _be_ high in the morning after 4 units. 

If it was me, I’d also set an alarm to test during the night maybe around 1-2am and eat a little then if my blood sugar was too low or looked like it was heading down too much. Keep hypo treatments by your bed along with longer-acting carby snacks like plain digestives. You can then nibble at them if needed. Even though I’ve had Type 1 almost 30 years, I still have part of a biscuit if I wake and test in the night and have any concern about dropping.


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## rebrascora (Apr 8, 2021)

This may sound stupid but I will sleep more soundly knowing you have reduced it. 

If you think about it logically, if you hadn't been started on insulin, your BG would have been high in the morning just as it has been for weeks and nobody worried too much. The insulin will bring you down even only at 4 units, so you may not be as low as 5 in the morning but you will still be a lot lower that you were 2 mornings ago which is actually what they should be looking to achieve with insulin. A slow steady reduction in levels, not a near hypo the first dayl 
Not following the dosage you have been given and risking the nurses wrath and being 6 or 7 or even 10 in the morning is much less of a worry than dropping into a hypo overnight, although it is still possible that might happen, so do please set an alarm and check.


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## LittleSunflower (Apr 8, 2021)

Thank you @Inka & @rebrascora for your concern and your help. I have had 4 units this evening and an update from my nurse saying to reduce both doses to 5 from tomorrow. As you said, I’d rather be a bit higher tomorrow morning than to risk the hypo. (Even though it still may happen, I will keep a check in the night as advised).
My BG level beforehand was 12.2.


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## rebrascora (Apr 9, 2021)

As regards your question about the Levemir doses being 12 hours apart, apologies as I don't think we answered that. It is advised to take them 12 hours apart but personally I have always taken it at bedtime which is about 11pm normally and 7am and that works fine for me but at the moment I need all my basal insulin through the day and none at night otherwise I hypo, so just one injection of Levemir in the morning for me just now. Stick with the advice you have for now or a couple of hours either way shouldn't make too much difference. It helps the nurses figure out your dose adjustments better if you are following their guidance on such things. Do confess that you only took 4 units tonight instead of 5 (or 6)  because you had a near hypo earlier and were frightened of having a night time hypo. It is important that they know so that they can see what effect it had and adjust your dose again for tomorrow if necessary. Probably best not to mention us keyboard warriors advising you though, as that tends to get up medical professional's noses.
Hope you have a restful night and your levels are nice and stable.


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## trophywench (Apr 9, 2021)

I've never used my arms, mainly to begin with because I wasn't dexterous enough to do it one handed and especially with a heavy glass syringe that I wasn't used to and again, you were supposed to 'draw up' slightly in case you'd accidentally hit a vein - was that long ago I'd forgotten that palaver until literally just that second.  And honestly, cack handed though I was and still am - I have never to my knowledge hit a blood vessel - and you'd know alright cos you'd bleed and have to staunch it.

I found my midriff bulge - even when I was size 10 I had a nice little bit of padding above the waistband under my ribs - and certainly do now - a prime spot to easily jab into.

And no - Levemir does not absolutely have to be jabbed 12 hours apart - and it's amazing how much eg half an hour sooner or later, can make - but that's for your Advanced driving course, not for a new driver with the L plates on!


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## trophywench (Apr 9, 2021)

A number of us typing at the same time.


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## Inka (Apr 9, 2021)

How did things go @LittleSunflower ? I hope you had an ok night.


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## LittleSunflower (Apr 9, 2021)

I did wake up in the night but I felt absolutely fine and must have fallen back to sleep pretty quick because I didn’t test. (Thankful to have had a good nights sleep since the start of the week!) taking the 4 units instead of 6 definitely relaxed my anxiety about a nocturnal hypo. I still had 2 digestive biscuits and a small cup of milk before bed.
I tested when I woke up and was 5.8 (even with the 4 units) so had breakfast again before my 5 units this morning. I was 5.3 at lunch time and felt myself going a bit shaky. All ok after a good meal.
I also spoke with the nurse today and she understood completely why I took 4 units instead of 6 last night. I was also given a guideline of what I should be before bed as @rebrascora asked about yesterday - this is no lower than 7-9 to be on the safe side. I was also told that I can experience a hypo at levels just above 4 as I’ve been running high for so long. If I were to have another hypo in the afternoon like yesterday, I am to test again as advised 10-15 minutes afterwards and then think about reducing my insulin the following morning by 10% or 1-2 units to stop that from happening; not the evening dose?
My nurse is very understanding and reassuring. She explained that the reason they said stomach only for injection is due to them not knowing how much muscle mass I have in my thighs due to recent weight loss and my needles being quite short. I could inject in my thighs when I start on the Novorapid.

I feel a lot better and like I have a bit of control over things. I’ve also been told it’s very good I am aware of my body signs that tell me I am too low and can act fast to treat this.
They are now trying to get me an appointment at the hospital for a confirmation of Type 1 from a consultant (as the nurses cannot give me a full diagnosis but they believe it and are treating it as that).
I am set to stick with the 5 units of Levemir in the morning and 5 in the evening until my check in next week.
I would be in such a state if it wasn’t for you all on here, so thank you, really.


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## Ljc (Apr 9, 2021)

What length needles have they prescribed you , thought some of us may prefer longer needles , no matter how thick or thin the fat layer is coz we shouldn’t inject insulin into muscle, we really only need 4mm needles. 

I’m glad you slept well and easier las night


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## rebrascora (Apr 9, 2021)

Thanks for the update and pleased to hear you had a safe night. So pleased you had that milk and biscuits as I dread to think how low you might have dropped.
I am concerned that she has left you on 5 units tonight still. Your reading was 12.2 before bed and you had 2 digestives and a cup of milk which will have effectively bumped you up by another 6-7 mmols.... so effectively nearing a BG of 18-20 and you woke on 5.8 this morning, so you effectively dropped 13-14 mmols during the night and she wants you to take an extra unit tonight??? Did you tell her your evening reading and that you had the biscuits and milk* after that. *I wonder if she thought the milk and biscuits took you up to 12.2I Still think they are not being conservative enough with your doses. Bringing your levels straight down into the 5 and 4s from mid teens on the first day is too drastic and risky in my opinion.

The other thing is that the extra insulin you are injecting can take the strain off your flagging remaining beta cells in the pancreas. If they get a bit of a breather, they can fire back up again with renewed vigour so that can also add unpredictably to the insulin in your system. 

Hypoes don't feel the same at night as through the day. I have had a few recently where I woke up but didn't know why and in my groggy half sleepy state I rolled over and went back off to sleep without testing. It wasn't until the third time that I woke up that it clicked that I should test and I was 3.3 and had been in the red for over an hour according to my Libre sensor,  which samples my levels every few mins. So don't assume if you feel OK when you wake up through the night that you are not hypo. Always best to test. The more you test, the more you will learn about how your body works. 

Personally I would have liked to have been encouraged to test a lot more and experiment in the early days. I felt quite naughty testing more often than they suggested and bought extra pots of test strips myself so that I didn't feel guilty about using more NHS test strips than I was authorized to do, but my understanding and control improved so much with that increased testing. I appreciate that you are still only on basal insulin so there is not a lot you can do with any info you get but my suggestion of testing when you inject the Levemir at 9.30pm and then again at bedtime, so that you have an idea if it is going up or coming down as you approach bedtime is useful knowledge for deciding how many biscuits to eat before bed to keep you safe.

My advice would be to stick with the 4 units tonight again, but do whatever you feel comfortable with, but please do test through the night if you wake up, even if you feel fine, particularly in these early days when they are still trying to find the correct dose for you and you are clearly very sensitive to it. I know it is a pain as it disturbs your sleep but really important to stay safe.


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## Inka (Apr 9, 2021)

I totally agree with @rebrascora Stick with the 4 units tonight (or even reduce it to 3 units) and basically try to repeat what you did last night blood sugar-wise and snack-wise.

In my opinion, you’ve been started on too much basal. You need less and possibly the Novorapid introduced with a pen that does half units. You can see that food is putting your blood sugar up and the Novorapid would stop that.

So if it was me, I’d want less basal insulin and tiny amounts of Novorapid to cover meals. Rather than have the 14 units of Levemir you were initially told to take, your regime might look something like 4 and 2 units for the Lev, and 2/1/1.5 for the Novorapid. Those are just example figures _not_ recommendations. I still think your nurse is hoping to just keep you on the Lev only. That’s not how it works. You need both insulins because they do different jobs. Even if someone is only on tiny amounts of insulin, they still take both kinds. When I was diagnosed, I initially started on 1 unit of basal (yes, one). Nobody thought I could do without bolus/meal insulin just because I had a tiny amount of basal insulin. In fact my bolus insulin was more than my basal.

Sorry to ramble on, but I feel you might need to stick to your guns here. I have found GP diabetes ‘expert’ nurses not very expert at all, and lacking in knowledge, particularly about Type 1 and Type 1 regimes. Don’t be afraid to be polite but firm. It’s something many of us have had to do a number of times throughout our diabetic careers.


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## rebrascora (Apr 9, 2021)

I think a half unit pen for both Levemir and NovoRapid is going to be important and I totally agree with you @Inka in what you say about doses. I know you are more sceptical than me about their intentions as regards just using Levemir. I am confident that the NR will be incorporated into the regime once they get the LR somewhere near. I hope I am not wrong in that! I just think they have started far too heavy handed with the Levemir and I am surprised that they don't seem to be doing enough about reducing it. We are all encouraged to err on the side of caution and yet these doses are clearly too high to be bringing levels down into the 4s and 5s straight away considering that the insulin is also being used to cover food at the moment as well.

If it helps you to understand the potency of insulin @LittleSunflower most of us would need a unit of insulin for each digestive biscuit. So without those 2 digestive biscuits at bedtime you would potentially have had 2 extra units of insulin in your system which are capable of dropping you about 3mmols each. You woke on 5.8 which is less than 6 so without those 2 digestive biscuits you would without doubt have been hypo through the night. and possibly quite a nasty one.


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## LittleSunflower (Apr 9, 2021)

I wish I had you both around to talk with my nurse about all of this! (Although you’re dealing with it all yourself so you wouldn’t need my stress too).
It’s all still very new to me and it can be difficult to take all of the information in so quickly.
I do agree it’s concerning that my levels have gone from double figures to near hypo figures in a couple of days. I’m not sure if there was miscommunication with the BG reading when I spoke to the nurse earlier.
I will repeat with the 2 digestives and milk tonight, along with the 4 units of Levemir, testing BG before. If I do wake, I will make sure to check levels instead of just feeling that I’m ok.
Were you started on both insulin’s together or just the one at the beginning like myself? I will make sure to mention about the Novorapid with the nurse next week, to see when this will start etc.
Do you think it’s still best I stick with the 5 in the morning and 4 in the evening from now on? As the 5 will take me through the day, I know Levemir doesn’t work with food as the Novorapid does
I feel kind of rebellious changing the dose myself but I really do not want to drop into hypo figures, especially when I can even feel shaky in the 5s having been high for however long.
My levels today have been 
Waking 5.8, lunch 5.5 and before dinner 10.9.


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## Inka (Apr 9, 2021)

Yes @LittleSunflower I was started on both insulins at exactly the same time. My dose was determined by the sliding scale I’d been on (an insulin drip used in hospital) but even that only gave a rough estimate. My doses were adjusted a few times but those were slight tweaks rather than massive changes.

Your daytime Levemir doesn’t look too wrong from those figures but because it’s the only insulin and is working without it’s counterpart, Novorapid, it’s hard to say whether it’s ultimately the right dose or not. It’s possible it might need reducing slightly once you get the Novorapid in there to deal with your meals.

If you’re happy with the morning 5 units of Levemir at the moment, then it’s not such an issue to stick with that because you can test and will be awake to catch hypos before they happen. But the nighttime dose concerns me, which was why I, and no doubt @rebrascora too, replied at length last night. Nocturnal hypos are something to be avoided at all costs.

As a comparison, last night my blood sugar was 6.0 when I went to bed (I have an insulin pump so can run slightly lower than I do on injections for reasons I won’t bore you with) and I woke up at 5.6. That was my basal insulin doing it’s job - keeping my blood sugar steady overnight. Your Levemir is dropping you _a lot_ overnight. That’s not right.

I agree that your starting doses were too high with the Levemir. Usually doses are started low (below what they think someone will need) then gradually increased as necessary (if necessary at all). So I would have expected you to be started on say 2 units of Lev a.m and 2 at night. I don’t know why you were started on bigger doses. If it was to cover your food, as suggested by the nurse’s comments, that’s not right and potentially risky as far as hypos are concerned. It could also be that the nurse has Type 2s in mind. They have a resistance to insulin so generally have larger doses. But even saying that, I’ve seen Type 2s started on lower doses than you sometimes.

Don’t feel bad about adjusting your doses downwards. The only result of that could be that you’re slightly high. As you’ve been left all this time without insulin, that’s not an issue really.

If it was me, I’d either stick with the 4 units and big snack tonight, or reduce it to 3 units, still have a big snack and see how it goes. Do test if you wake up in the night. It will give useful information whatever your blood sugar.


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## rebrascora (Apr 9, 2021)

Yes, looking back through my records (my memory is a bit of a blur around that time so really can't actually recall) I was started on them both but the Levemir was just once a day at night and they started me on 6 units and then upped it to 8. I didn't split my Levemir into 2 doses until the October, so 6 months later, just before I started my DAFNE course and by then I was up to 14 units of Levemir and split it into 7 morning and 7 night which worked OK for a little while and then I had to start reducing the night time dose and increasing the morning one. 

Looks like I was carb counting within a couple of weeks of starting on insulin and adjusting my NovoRapid doses, but i think we had an agreement that 4 was a max. per meal initially. I was mostly just using 1 or 2 units though.

I would be curious to know what you had for breakfast lunch and dinner. It surprises me that your lunchtime reading was in the 5s still but then it headed up after that.

I would just like to say that once again @Inka and I are in total agreement as regards the strategy for tonight and her thoughts in general. Good luck and I hope you have another good night.


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## LittleSunflower (Apr 9, 2021)

Ljc said:


> What length needles have they prescribed you , thought some of us may prefer longer needles , no matter how thick or thin the fat layer is coz we shouldn’t inject insulin into muscle, we really only need 4mm needles.
> 
> I’m glad you slept well and easier las night


I have been prescribed 4mm needles


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## rebrascora (Apr 9, 2021)

As another comparison, I went to bed on 8.2 and dropped to 3.4 by 5.15 am and needed 2 Lift tablets to bring me back up (Technically it should have been 3x Lift tablets for 15g carbs to treat a hypo but I go too high very easily) and I had no evening insulin on board, so my body used up what was in my blood stream and for some reason my liver produces very little glucose during the night and lots during the day, so the tiny amount of residual insulin from my morning dose of Levemir was enough to drop me into the red ie a hypo at 5am.  Woke up on a very nice 5.3 but without those 2x Lift tablets I might have needed an ambulance!


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## LittleSunflower (Apr 9, 2021)

Goodness me, that is frightening to read, let alone experience first hand! I’m so glad you had the tablets @rebrascora. 
Breakfast - two slices of wholemeal marmite toast with a cup of decaf tea 
Lunch - southern fried chicken and a very small portion of chips
Afternoon snack - a piece of milk chocolate, a matchbox size of cheese and a packet of crisps (not the best choice I know) 
Dinner - lasagne

so a ‘carby’ type day 

I personally don’t have a good feeling about tonight, I don’t feel very well within myself. Bed time reading before insulin is only 9.5 tonight. I took 4 units of Levemir and have had half a sandwich and an apple just to try and boost my levels a bit. I am yet to have the biscuits and milk but I am full of anxiety and have become so overwhelmed it’s resulted in tears. I don’t know how I’m going to cope with all of this, it’s just a huge life change and shock to try and come to terms with, especially with my levels still fluctuating all over the place. I’m really worried about a lower than 4 hypo happening if I already feel bad in the 5s


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## Inka (Apr 9, 2021)

It is a big life change but I promise it does get easier @LittleSunflower You’ll gradually get the hang of the practical things, but importantly you’ll also process the emotional upset and stress. I know it might not seem like it now, but you will. We’re not special. We’re just ordinary people like you. If we can do it, you can   

If you’re anxious about tonight, then remember you can set an alarm to test during the night. It helps peace of mind as well as being useful.

I would lower your evening Levemir tomorrow. You can always increase it if needed. It would be worth it so you had less anxiety, and your ‘numbers’ suggest it would be sensible.


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## Ljc (Apr 10, 2021)

I am sorry to hear you are so worried. Yes going onto insulin is scary, imo it’s being made much harder for you because and I am sorry to say this, your nurse. In my non medical opinion once she realised how sensitive you were just to the basal insulin, she imo should have reduced the units especially the evening one even more. Tbh if I was in your shoes I would reduce it. 

The sooner you get to see/speak to a DSN the better.  So when you next speak to thepractice nurse diabetes nurse (dn)  tell her like it is for you , don’t hold back. 

I have been reading here but not posting much as you are being given such good advise. 

It’s easier for us as we have been on insulin for some time, we’ve learnt how to handle things and this may sound strange to you but we know far more about our own particular diabetes than our  DNs( practice nurse) .
It will get easier honest ! But at the moment you are on a very steep learning curve and probably suffering from information overload as well as being so worried. 
Though you may not think so right now ,you are actually handling things very well !


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## trophywench (Apr 10, 2021)

I agree with Lin - you are being really logical in the way you are approaching things and trying to work out how something happened and what you can do instead to try and avoid the same scenario happening again.

Scary - Oh yes, to begin with it's frightening.  Soon you'll venture to change something all by yourself - and be allowed to gloat about your expert advice to yourself!


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## rebrascora (Apr 10, 2021)

I am really sorry if my posts have caused you undue anxiety but I really felt that you didn't fully appreciate the difference between daytime and night time hypos and were not fully understanding how powerful insulin is. I understand that it is difficult for your health care professionals to guestimate that first starting dose but it was obvious to all of us that the night time one particularly was too high and dangerous. This should be a time when you are learning to build confidence with your insulin but it is a very powerful and potentially lethal medicine and the dose is quite critical, particularly for someone like yourself who is underweight and very insulin sensitive. 
It may be that being able to see what is happening to you written down and ask questions of you is making it easier for us to interpret what is going on better than a telephone conversation with the nurse. As others have said, she will be used to dealing with Type 2 diabetics who are insulin resistant and often take much larger doses..... sometimes as much as 50 or even 100 units at a go, so you can see how 5 units may seem like a very small amount to her and not of concern, whereas a diabetic specialist nurse who deals mostly with Type 1 diabetics would, I am sure, have spotted the need for more of a reduction. I don't blame your DN who I am sure is doing her best and may be getting guidance from a DSN but when information is relayed via a third party, some can get lost or misunderstood. I am sure she is lovely and most likely good at her job but she is being asked to deal with something which is above her level of training.... possibly due to the Covid situation.

As regards my night time hypo, I have had rather too many recently and whilst I am used to them now and thankfully they are not bad ones and I have confidence that I can cope with them, I have to be aware that that confidence can easily lead to complacency which is a very real danger for us. I am trying different strategies to prevent them but it is difficult to fix and sometimes a pump is the only answer, because my basal needs don't match with the profile of basal insulins available at the moment. I would not have been experienced enough to cope with one in the first few days of starting on insulin and it would have made me terrified to go to sleep if I had. 

Your evening strategy sounds like it was a good one and I hope you had a safe night and you are feeling a little less anxious today. Please let us know how you got on when you have time.


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## Inka (Apr 10, 2021)

Your very large snack should have kept things ok @LittleSunflower and I hope you had a good night. But you shouldn’t need to be eating mega bedtime snacks to ward off the effects of too much nighttime Levemir. A smaller dose would be more sensible. I’m sure you can see the logic in that. You’re doing really well and have a very good understanding of what’s going on, I think, so don’t underestimate what you’re doing. You’re doing well - genuinely


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## LittleSunflower (Apr 10, 2021)

Good morning all, thank you for your words of encouragement and support. Needless to say there have been more tears but it’s not surprising with everything that’s going on. I suppose it’s better than keeping it bottled up.
@rebrascora please don’t be sorry, I would much rather know all of what you’ve told me than to be oblivious, for something to happen and for me not to know how to treat or what was going on. So thank you.

I am still very anxious this morning and didn’t have the best nights sleep which has caused some sort of trapped nerve headache in the back of my neck and lower head. It’s pulsating as if it’s been tense for so long (of which it has for the last few days due to all of the information). Took a paracetamol in hope that helps.

BUT back to my diabetes, I managed to finally pluck up the courage to test my BG levels myself twice already and take my 5 units of Insulin without any help.
I tested around 4-5am and was 6.6. I tested again at 8:30am and was 5.8 (the same as yesterday morning). I had my normal breakfast of two slices of wholemeal marmite toast and as I said, took the 5 units of Levemir shortly after. Feeling quite peckish now so maybe a light snack before lunch. Hope you are all keeping well yourselves today X


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## rebrascora (Apr 10, 2021)

Sorry to hear you have a tense neck and stress headache but totally understandable in the circumstances and it is important to treat pain with appropriate medication because pain and inflammation also impact BG levels, so you did the right thing talking paracetamol. 

I have to say, those are great readings!! I am actually quite jealous! You are managing things really well with your snacks but as @Inka says, if you don't want to continue to eat a lot at bedtime, reducing that Levemir by another unit would be the thing to do. I know you are slim and I believe could perhaps do with putting on some weight from other thigs you have said, so if you are happy continuing with the bedtime eating and the current 4 units then it shouldn't be a problem, but if it feels like it is an effort to eat so much just to keep you from dropping too low through the night (which is what we call "eating to your insulin") then a further dose reduction at night would be sensible with only a small snack.

Hope you have a good day and look forward to a progress report later if you have time. 

It is often the case that you are quite hungry once you start on insulin because your body has been struggling to utilize  the energy from the food you have been eating without enough insulin and so you have been living off your body stores, but with insulin now, the body wants to replace those body stores and needs more food to do that, so your brain tells you you need to eat more ie you are hungry. It is all a very clever system, especially when it works right. You will learn to have a huge appreciation for just how clever the pancreas is (or was in our case as diabetics) once you learn all about how many things affect your BG levels and how it balanced everything once you learn to (try to) do it all manually by injecting insulin. I say "try to" because we never get it right all the time. Some people's levels are easier to balance than others and it is highly individual but no one gets it right all the time and striving for perfection is the way of madness. All you can do is your best and limit the risks and try to figure out what went wrong when things go awry so that you can improve next time but there are plenty of occasions when you just never figure out why it didn't go to plan and you just have to shrug and move on.


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## LittleSunflower (Apr 10, 2021)

How are you today @rebrascora?
I would be in even more of a state without yours and everyone else’s input this past week. I am very appreciative of everything you’ve told me.
My lunch time reading was 9.7 (as I had a banana for snack which most likely boosted my sugars up). I fell asleep for a good few hours and woke up with a 5.2 before dinner - definitely began to feel sick and shaky so had a chocolate digestive and a small cup of milk before dinner too.
I am going to stick with the 4 units this evening as I will also have the same large snack again. Like you mentioned, I do need to gain the weight and feel better knowing I’ve had something and not changed the dose again so soon. If that needs to be done, I’m sure it will be but as of right now, it feels better to have the snack and stick with those 4 units.
Having struggled with an eating disorder for the most part of my life, I cannot believe how well I am coping with the amount of food I am eating. 3 meals and 3 snacks a day thus far, with that hunger feeling along the way too and no ill feeling towards it as I know I have to eat otherwise it will be dangerous for me, having started on the insulin. Don’t get me wrong, I definitely have those rough moments (such as last night when I wrote that post about not being able to cope) but those of you on here, have reassured me that I am not alone in this and that insulin is to help me feel better.
Tuesday/Wednesday felt like the end of my little world, no idea how I was supposed to test my BG levels or inject myself.. 3 days later I am able to do this. Thank you for believing and supporting me through this journey


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## rebrascora (Apr 10, 2021)

So pleased you are coming to terms with the practicalities of testing and injecting a little bit. It will eventually become almost second nature. We all know what a huge shock it is, so we understand how you are feeling. You really are coping brilliantly in the circumstance, so be proud of yourself and what you are achieving. I think you are wise to stick with your evening dose and snack regime again tonight because diabetes really likes consistency (it is my big failing  ) and it will help to build your confidence, which is a huge factor in itself.
Hope your neck/headache has eased and you have a better night's sleep. 

As regards my day, so kind of you to ask, but unfortunately I managed to pull a calf muscle whilst out running this morning so had to hobble home and that put paid to me digging up a water pipe to replace a water trough for my horses or much else I had planned for this afternoon, but I pottered on in the kitchen making some duck carrot and orange soup with a leftover carcass and I'm having that for dinner now and I had a lovely long chat on the phone with my best mate who has just returned from Australia, so the day has improved as it has gone on!


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## LittleSunflower (Apr 10, 2021)

Yes, I thought it would be best to stick with the 4 with the consistency element too. I will probably set an alarm to test in the middle of the night just to be on the safe side again although like @Inka said, the large snack should help take me through the night (of which it did last). 

The headache has moved to the other side now but I do believe it’s just from me clenching my jaw with anxiety for the past few days. I didn’t realise I was so tense until I thought about relaxing, everything started to ache. Another paracetamol and some more rest should do the trick, I hope.

Sorry to hear you pulled a muscle  It definitely sounds like you’ve had a good day apart from that little set back this morning. I hope you’re taking it easy whilst having that delicious sounding, homemade soup this evening. The perfect type of meal to warm you up too in this chilly weather.


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## LittleSunflower (Apr 10, 2021)

BG before insulin is 16.5 this evening. Much higher than I thought it would be


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## Inka (Apr 10, 2021)

What did you eat for your evening meal @LittleSunflower Did you retest just to make sure? Your blood sugar seems to go high later in the day. Novorapid will help with that.


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## LittleSunflower (Apr 10, 2021)

Inka said:


> What did you eat for your evening meal @LittleSunflower Did you retest just to make sure? Your blood sugar seems to go high later in the day. Novorapid will help with that.


Retest when? 
I had Southern fried chicken breast x2 with a small amount of mash potato for dinner. I tested a ketostix too but that’s come back to the 0.05 traces colour. 
It definitely seems like I will need to introduce the Novorapid to help with meal levels.


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## Inka (Apr 10, 2021)

If I get an ‘unusual’result - ie not what I was expecting -I wash my hands and retest immediately just to make sure I didn’t have anything on my hands that messed the result up.

It could just be the carbs in your meal that made you higher. Mashed potato can be quite deceptive in that a small serving has a fair few carbs. Nothing that Novorapid won’t sort when you get it


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## LittleSunflower (Apr 10, 2021)

Inka said:


> If I get an ‘unusual’result - ie not what I was expecting -I wash my hands and retest immediately just to make sure I didn’t have anything on my hands that messed the result up.
> 
> It could just be the carbs in your meal that made you higher. Mashed potato can be quite deceptive in that a small serving has a fair few carbs. Nothing that Novorapid won’t sort when you get it


I didn’t realise I could do that. I only went based off of the first reading. I had the usual 4 units of insulin shortly after. 
Do you think it will be ok if I have the two digestives and milk like usual and set an alarm to test in the night then? I don’t think I need the large snack if my levels are high based off of that 16.


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## Inka (Apr 10, 2021)

It’s up to you. You could reduce your snack a tiny bit but I’d be cautious. You might just want to eat your normal snack and see what happens. If you do choose to reduce it, I’d go with a small amount eg 1 and 1/2 digestives instead of 2 (that removes around 5gcarbs). Still have the milk with it.


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## LittleSunflower (Apr 11, 2021)

Afternoon all, hope you’re having a nice relaxing Sunday. 
My level this morning was 5.2 so I still dropped a major amount during the night, even with the 1 and a half digestive with milk snack before bed.

I have a question in relation to food, is there a guide of how many grams of carbs and how much sugar I should be eating in a day? Is this based off of current weight/height/bmi - will my nurse take me through this soon?
I’ve been keeping an eye on how many carbs I eat daily and trying to stay away from the sugary things but not entirely sure how this works or what’s right for me yet as I definitely don’t want to be restricting or losing anymore weight if I can help it. Any advice?


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## Inka (Apr 11, 2021)

No - the recommended diet for Type 1s is the same healthy diet recommended for everyone. The only thing you need to avoid is sugary drinks - except if you’re having a hypo or about to exercise, etc.

Just eat your normal diet and, once you have the Novorapid, calculate that according to your carbs. There’s no need to stick to any limit (within reason, obviously). I rarely bother to work out my total daily carbs. All I care about is calculating the right insulin for each meal and snack. I’m slim and have excellent diabetic control.

Again, if I was in your situation I’d reduce the evening Levemir. You have enough data now to show it’s too much.


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## LittleSunflower (Apr 11, 2021)

Ok thank you. In regards to snacks type foods, is it best I stay away from crisps/biscuits due to them not being that healthy anyway? Or is this still allowed in moderation along side the healthy, balanced diet?

With the night time insulin
If it was you, would you reduce to 3 units, instead of the usual 4?
Would it not be best for me to stick with the 4 units (for consistency) and keep the snack, maybe even add the sandwich for a longer last carb intake and speak with my nurse tomorrow about insulin doses? 

My levels today have been
Before breakfast 5.2
Before Lunch 7.3
Before Dinner 9.2


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## Inka (Apr 11, 2021)

Well, yes in theory in a perfect world no-one would eat them, but I eat crisps sometimes (had some yesterday), and biscuits too on occasion. The crisps I just fancy, but the biscuits I have as convenient snacks (eg a plain digestive is a convenient 10g carbs) or top-up carbs. So perhaps just be aware of which you choose, and don’t over-indulge (same as anyone else).

If it was me, yes, I’d drop the evening Lev to 3 units. I’d still have the same size snack for the first couple of nights at least until I was confident about what was happening. I’d also test during the night. You might well find you need less than 3 units, but 3 would be a sensible thing to try if I was in your situation.


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## trophywench (Apr 11, 2021)

It could well be that the night time dose of Levemir is insufficient to last you until before dinner.  OTOH you absolutely shouldn't have to stuff your face to avoid hypos at bedtime either.

I'd drop it to 3u too, but you've really got to persuade Nursie to get you Novorapid and two half unit pens (one for each insulin) NOW.

If she resists - honestly ring 111.  I quite seriously fear this could so easily escalate to ringing 999 cos you have no choice.


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## Inka (Apr 11, 2021)

@trophywench I think @LittleSunflower is still taking her morning Levemir. It’s just the Novorapid she’s ‘missing’.


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## trophywench (Apr 11, 2021)

Yeah but the morning Lev isn't lasting until pre dinner so the doses and timings of both jabs, let alone the proper fast acting - are ALL contributing to the difficulties, @Inka.


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## Inka (Apr 11, 2021)

Yes - agreed @trophywench I don’t understand why the OP wasn’t started on a basal/bolus regime.


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## trophywench (Apr 11, 2021)

Nor me - want to chuck her in a car and take her to see my DSN!


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## LittleSunflower (Apr 12, 2021)

trophywench said:


> Nor me - want to chuck her in a car and take her to see my DSN!


I’m open to this if it helps. What did you mean about it escalating to a 999 call, because of my levels dropping in the night?

I did actually take the 4 units last night and stuck with my big snack. My level before insulin last night was 11.2 and my level this morning is 6.7.

I take my morning 5 units of Levemir at 9:30-9:45am every day and evening dose of 4 units at the same time but pm(obviously).
I will ring my Nurse today and discuss my levels and dose but please may you advise on what I really need to say/mention/ask from what you’ve gathered from my posts on here so I can write this down and hope she fully understands the point I’m trying to get across. Thank you


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## Inka (Apr 12, 2021)

Tell her your evening Lev dose it too high and dropping you a lot overnight. And ask her for the Novorapid and a half unit pen (yes, I’m obsessed by the missing Novorapid!). You need that as the other half of your insulin regime.

I’d also ask her why she told you that you can only inject in your tummy when that’s clearly wrong. Well, maybe phrase it more tactfully, but it doesn’t exactly inspire confidence. Neither does her insistence you continue with Lev doses that are clearly too high.

Personally, however lovely she is, I’d put my foot down and ask for the Novorapid so you can get your levels under control and follow the recommended basal/bolus regime. Lev is not supposed to cover your meals, and in order for it to try to do so, you have to have more than you need, putting you at risk of hypos at other times.

I think you’ve been treated poorly from the start. Sometimes you really do have to be ‘pushy’ and firm but polite. I’ve learnt that from bitter experience. It’s ok to say “No, that’s not good enough”.


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## LittleSunflower (Apr 12, 2021)

My nurse has suggested that from tomorrow, I change my Levemir insulin doses to 6 in the morning and 3 in the evening. Concerned that my levels are dropping a lot in the night.
Much to your disliking @Inka, I asked about novorapid but there’s no start date as to when as she wants to see how I get on with the background insulin (I have another appointment Wednesday with her). My breakfast to lunch time readings are not rising too much and if I was to start on novorapid right now, it would be a tiny amount. Also mentioned she doesn’t want to introduce too much insulin as I’m insulin sensitive. So... novorapid doesn’t seem to be a thing for me anytime soon.

Asked about the half unit pen and this will be something I can have (looking into it).
I am expecting a phone call from the hospital this week so maybe I will have some more answers and more support on the way.


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## Inka (Apr 12, 2021)

It’s good you’re going down to 3 units of Lev at night  You’re right about my reaction to the Novorapid.... 

As I explained above, even small amounts of insulin are better shared between basal and bolus, not just lumped into basal. So even if someone only needs say 10 units total of insulin overall, that would be better as 4 a.m and 3 p.m units of Lev, and 1 unit NR before each meal for example. Lumping it all together and saying that you only need small doses of NR so you might as well just cut it down to Lev only and add those 3 NR units onto the two Lev doses to make them 5 and 5 units isn’t how it works and puts you at risk of hypos from too much basal and highs from not having your NR with meals.

Hopefully the hospital call will be useful to you. If it’s not @trophywench will be sending over her DSN!


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## LittleSunflower (Apr 12, 2021)

She mentioned that I may still be in the honeymoon period too so introducing both insulin’s, may not be ideal as of right now. She is also getting into contact with a colleague to discuss my insulin units/levels and we are discussing this further on Wednesday. I’ve been prescribed both so I’m sure I’ll have a start date at some point.
 I feel better with the lower dose of Levemir at night and hopefully the 6 units in the morning will be ok for the time being. It’s not what we want without the Novorapid as you say but if I am to have a hypo or hyper, I am more aware and awake throughout the day and know I can test if/when I feel strange.

The half pens sound fancy!

As much as we have to be thankful for them, I do feel like there is miscommunication between teams and areas within the healthcare system so I’m hoping the call from the hospital will mean getting an appointment for proper assessment/diagnosis. Which for me, will put my mind at rest and fully know that it is type 1 we are treating. At the moment, I am diagnosed Diabetic with looking towards type 1. I know we don’t need labels as such but I feel it’s important for my mental health to fully know and complete that part anyway.

Even though I’m still having my ups and downs, I dread to think how I’d be this week, having not had the encouragement from you all to book in with the GP again.
Tomorrow will be one week since this whirlwind started.. let’s hope my levels don’t repeat last Tuesday with that 21.7 number (now understanding a little more of what that actually means)!


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## LittleSunflower (Apr 13, 2021)

@Inka I took 6 units of Levemir this morning.
My levels have been
Before breakfast 5.9
Before lunch 7.7
Before dinner 5.5
Before night time insulin 7.8

It’s the first night of taking 3 units ( within the next half an hour ) but that feels too much for my lowest level before bed on insulin so far. Thinking of lowering to 2, what do you think?

update - took 2 instead of 3 and going to have a large snack before bed (sandwich, biscuits & milk just to be safe)


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## Inka (Apr 13, 2021)

Good - I’d have gone with 2 units too. Far better to be slightly high than to risk a hypo. I agree about the snack too. Do that this first night and see how you go.


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## Deleted member 25429 (Apr 13, 2021)

LittleSunflower said:


> She mentioned that I may still be in the honeymoon period too so introducing both insulin’s, may not be ideal as of right now. She is also getting into contact with a colleague to discuss my insulin units/levels and we are discussing this further on Wednesday. I’ve been prescribed both so I’m sure I’ll have a start date at some point.
> I feel better with the lower dose of Levemir at night and hopefully the 6 units in the morning will be ok for the time being. It’s not what we want without the Novorapid as you say but if I am to have a hypo or hyper, I am more aware and awake throughout the day and know I can test if/when I feel strange.
> 
> The half pens sound fancy!
> ...


I like you am sensitive to insulin. The half pen nova rapid is essential for me, you even get a choice of colour with the pen !! Hopefully your confidence will grow daily . Injecting does become second nature x


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## LittleSunflower (Apr 21, 2021)

Another update. Today I met with a diabetic nurse at the Hospital and was officially diagnosed Type 1 Diabetic.
I am getting the Libre Freestyle 2 fitted tomorrow afternoon.

@Inka you mentioned I was treated poorly from the beginning and guess what? You’re right. Last year I had the 2 separate blood tests, of which I know came back Prediabetic. Apparently they sent my bloods off for a GAD test and today, I received my results for this and this is why I got the diagnosis today. My GAD result was 12005.... does this make any sense to you? I got told the normal range is 0-5 so with my number, should I still be sitting here typing this right now?
Apprently I was missed in the system due to having a Negative Antibody result too. My anxiety is sky high after all of the information and I sat in the hospital car park crying before coming home again. It’s very overwhelming.
I am very upset that it’s taken ONE year for an insulin start or any kind of diabetic related treatment but I wouldn’t have got any if it wasn’t for you all on here encouraging me to persist in getting answers.
I hope you are all keeping well yourselves
Little Sunflower x


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## Inka (Apr 21, 2021)

I feel enraged on your behalf @LittleSunflower Sadly, you’re not alone. So many adults are just assumed to be Type 2. Sometimes even when they’re correctly diagnosed or strongly suspected to be Type 1, they’re _still_ treated as Type 2  Like the GP/‘expert’ nurse still can’t get their heads round the idea that Type 1 is *not* just a childhood condition. So - if it’s any consolation - you’re not alone.

As for your GAD result - don’t panic. That’s to do with your antibodies - the antibodies that are wrongly attacking your islet cells and damaging your ability to make your own insulin. Results tend to be higher earlier on as, basically, there are more islet cells there to attack. I still have GAD antibodies almost 30 years after diagnosis but at a lower level than you because they’ve not got many/any islet cells left to attack now.

I know it’s upsetting for a number of reasons - the diagnosis itself plus the tortuous route it’s taken for you to get that diagnosis. My only advice is to look to the future. You know what you’re dealing with now. Insulin will allow you to get on with your life and control your blood sugar. Yes, it’s a pain having to faff about with injections and testing and carb-counting, but it does get a lot easier. It honestly does. X


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## Ljc (Apr 21, 2021)

I too am angry on your behalf about the way you have been treated.  Tbh as you are probably very aware it was obvious to us that you did not have T2 .

Please don’t despair,  now you have the correct diagnosis and are now under the real experts , things will soon get a bit easier in many ways.  Yes you are going to go on a steep learning curve but it won’t be without proper support, which till now has been sadly lacking from your go practice.

Now take a deep breath in and out and try to relax T1 is doable ok .
You have experienced being treated as T2 as have I. Tbph once I got to grips with insulin, learned how to adjust the doses myself (I still had the T2 label then) I found it made things easier for me.  I hope you will soon find the same, especially as you are now under the real specialists.


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## trophywench (Apr 22, 2021)

Thank the Lord for that!

And - {{{Hugs}}}

I'm very pleased you sat in the car and cried! - that sounds like I'm being nasty, doesn't it? - but I'm not - grieving at receiving the news - and knowing inside your OWN head that it is correct is a fantastic relief for starters (Thank heaven it's something treatable and isn't a death sentence) and only now can the proper grieving process of the brain and body after receiving a diagnosis of a chronic condition, commence.  If you hadn't done that then on the carpark it could have hit you whilst driving home!


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## rebrascora (Apr 22, 2021)

I also had a cry in the car park, but it was when I was started on insulin rather than when I formally got my Type 1 diagnosis, which was 2 months later. It was the impact of knowing that I wasn't going to be able to turn things around no matter how strict I was with my diet and Jenny is right, it is a grieving process.

You are on the right journey now though and it will get easier especially now that you have access to appropriate treatment and support. Education is really important so ask for whatever courses are available. Great to hear that you are getting Libre 2. I am sure you will find that really useful and help you to understand what is going on so much better than a finger prick here and there. I treat it like playing a very slow computer game with my BG levels trying to keep them within range (3.9-10) You have to accept that you won't achieve it all the time but no body is perfect and treating the Libre graph like a game rather than a health condition stops me from getting too uptight about it. Good luck.


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## LittleSunflower (Apr 23, 2021)

Another update
One of the community nurses came and fitted the Libre on me today as I asked for help. It didn’t hurt one bit but I did have tingling and still have a dull ache in my arm. (This is exactly like the feeling I got in my body the first time I injected insulin so I’m just very sensitive to everything and everything. What do you expect when a 5mm filament is stuck in your arm for 2 weeks?)
It’s placed more towards the inner side of the back of my arm so I’ve ordered an arm band just to make sure it doesn’t come off.. and some stickers to cheer myself up. - photo attached. That’s how it looks from the back, so quite close to bumping on my body compared to completely in the middle.
I would’ve been very shocked if I didn’t have any pain due to the fact it can sometimes be painful when injecting insulin!
My Levemir has been reduced to 4 units in the morning with no night time dose due to the fact I was at risk of having a night time hypo and to see how that goes for the next week - thanks to you on here for making me aware. You were all correct from the get go, my online nurses!
I was on 5 units in the morning but reduced this to 4 on my own due to fact I was getting readings of 4-5 at dinner time whereas I would usually be a 7-10. They seem to be more stable with the 4 throughout the day. Excited to see what my levels are in the morning with no night time Levemir.
I hope now that I am in the system and the first Libre is activated, I can finally relax a little better. I definitely worked myself up way too much for the Libre which didn’t help anything!
How are you all keeping? X


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## Inka (Apr 23, 2021)

I don’t have a Libre but I can see why you’re concerned about knocking it. @rebrascora is one of many using the Libre so might have some helpful tips.

I’m glad your Levemir doses are now at a better, lower level than very early on. It’s far better to start like that then increase if necessary. Often when you first go on insulin, it gives your own islet cells a rest as they’re not struggling so much. They then have a chance to recover a little and make small amounts of insulin. I remember that phenomenon. No-one had told me so I stupidly thought perhaps it had all been an awful mistake and I wasn’t really Type 1 (I didn’t have the antibody tests until much later). If I’d known, I’d have understood better.

Now you’re in the system as a Type 1, everything should be less stressful. You’ll get the care and support you need. You’ll also have the possibility of access to other tech in the future eg an insulin pump. Make sure your GP has put your diagnosis on your notes/computer next time you speak to them.

If you feel up to reading, there are a couple of great books about Type 1. You don’t even have to read them now. Just having them there is like taking control yourself. One of the books is American so you have to convert the units but I really liked the chatty way it was written and it made me feel better and less alone with my problems and emotions.

That book is Think Like a Pancreas’ by Gary Scheiner.

The other book is Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - it’s great for adults too)

I hope you’re feeling better physically now. Be kind to yourself. It does take a while to get used to everything. Enjoy your weekend - and let us know how your Libre goes and what your blood sugar does during the night.


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## everydayupsanddowns (Apr 23, 2021)

Thanks for your updates @LittleSunflower

Sorry to hear about your tears, but hopefully this will give you some clarity going forwards.

Hope you get on well with the Libre. All that information can feel a little overwhelming at times, but it is just that - information. It’s not a measure of how much effort you are putting in, it’s just information to help you spot patterns and decide what to do next


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## rebrascora (Apr 23, 2021)

So pleased you have the Libre fitted and that they have reduced your insulin doses, particularly that overnight one. 

That is a little further to the rear of the arm than I place my Libre but it should be fine. I have had the odd one that "nips" a bit after application. Not sure if a fine hair on my arm gets caught the wrong way in the adhesive or if the filament catches a nerve, but it usually settles down after a day or two and I can't even remember which arm it is on after that. The number of times I scan the wrong arm and wonder why it isn't working!! Doh!
You need to be careful taking off close fitting clothing and bra straps, particularly sports bras, can catch on them if you are not paying enough attention, but it really is a great bit of kit and hopefully you will manage not to dislodge it. 
Have they shown you all the features like the "Time in Target" function? 
Are you using a reader or a mobile phone with the app? My phone isn't compatible so I only have the reader, but it works great. If you have any concerns just shout up. One thing to be aware of is that it doesn't like you lying on it and may give you a false low reading due to compression so always double check with a finger prick if it shows you are too low or too high. 

Good luck and let us know how you get on. So pleased you are now getting the professional support you need.


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## trophywench (Apr 23, 2021)

I sometimes get a gap rather than a compression low, but not at the same time every night and not every night anyway so it's no loss.


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## LittleSunflower (Apr 24, 2021)

Inka said:


> I don’t have a Libre but I can see why you’re concerned about knowing it. @rebrascora is one of many using the Libre so might have some helpful tips.
> 
> I’m glad your Levemir doses are now at a better, lower level than very early on. It’s far better to start like that then increase if necessary. Often when you first go on insulin, it gives your own islet cells a rest as they’re not struggling so much. They then have a chance to recover a little and make small amounts of insulin. I remember that phenomenon. No-one had told me so I stupidly thought perhaps it had all been an awful mistake and I wasn’t really Type 1 (I didn’t have the antibody tests until much later). If I’d known, I’d have understood better.
> 
> ...


Thank you so much for your ongoing support and advice Inka, it really is appreciated. I went through the process of not believing it was Type 1 too, probably still in that stage if I’m quite honest.. some days I feel like I’m not really here if that makes any sense. Like I mentioned before, they believe I’m still in the ‘honeymoon’ period but I have to admit, knowing I didn’t have to take night time insulin last night was such a relief, I had an earlier night for the first time in what feels like forever!

The Libre was about 1mmol lower than my actual BG meter check but I’ve been told this can happen within the first 24 hours as it’s still getting settled in. I was a 9.8 before bed, still had my snack of two digestives and milk. Woke up to a 7.3. That’s not bad without insulin at all really is it?
The Libre said I was an 8.0 before bed and this morning said a 4.6 so it was fairly off. I know it’s meant to stop you from pricking your finger but I honestly don’t mind it anymore so have been double checking. I’ve attached a photo from the app of my glucose through the night for you to see.

The nurse at the hospital mentioned I may become insulin dependant within the next 2 years or so and about the pump but I won’t allow myself to get worked up over that right now with everything else that’s going on.

Someone mentioned those exact two books to me before so I’ve gone ahead and purchased them. They look and sound like a good read.

I haven’t felt the best physically but that would be due to the physical sensations I experience when I am very anxious and/or stressed so I’m hoping it settles down soon and I can feel better as a whole.
I hope you are keeping well yourself and that you enjoy your weekend too


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## LittleSunflower (Apr 24, 2021)

rebrascora said:


> So pleased you have the Libre fitted and that they have reduced your insulin doses, particularly that overnight one.
> 
> That is a little further to the rear of the arm than I place my Libre but it should be fine. I have had the odd one that "nips" a bit after application. Not sure if a fine hair on my arm gets caught the wrong way in the adhesive or if the filament catches a nerve, but it usually settles down after a day or two and I can't even remember which arm it is on after that. The number of times I scan the wrong arm and wonder why it isn't working!! Doh!
> You need to be careful taking off close fitting clothing and bra straps, particularly sports bras, can catch on them if you are not paying enough attention, but it really is a great bit of kit and hopefully you will manage not to dislodge it.
> ...


I’ve been very careful with my arm so far, probably a bit too much haha. I have ordered a little arm band holder for it as previously said so I think that will do the trick. It was difficult trying to get comfortable for sleep last night due to the placement but I managed. I did think it was a bit far back and towards my body but I shouldn’t complain as I couldn’t even bring myself to fit it! I’ve read first time Libre users often misplace it a little but I’m trying this new thing where I don’t worry about anything and everything .. I’ve been fortunate enough to have a Libre offered to me. It’s there to help not harm! (So I keep telling myself multiple times a day)
I’ve had a look at the Time in Target but I have some modules to complete on their website to learn more over the upcoming days. Just can’t do it right now as my brain has been in overload Diabetes Information mode!
The nurse scanned the reader first so my alarms are on there but I have been using the app as the community nurses want to see what my levels are doing. They both read differently, reader being more accurate than the app so far. I probably scan too much but it’s something new and I can’t get my head around the fancy technology that’s stuck in my arm for the next 14 days haha.
I replied to @Inka ’s post and there’s a photo attached of my levels throughout the night for you to have a look at if you like.
Thank you so much  hope you are keeping well


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## rebrascora (Apr 24, 2021)

Yes, there is such a lot to take in that overload is common. Do things at your own pace and try not to worry. You got to this point OK didn't you and you are probably over the worst bit now which is those initial few days of testing and injecting. Yes there is still a lot to learn but you have the basics and from your first few posts after starting on insulin it was clear that you have a good sense of intuition with it, which is half the battle. learning to listen to your body and figuring out what it needs rather than what the nurse tells you or a book says or whatever guidance you are given. If you are happy scanning 100 times a day and it gives you reassurance then do it. You will soon learn to be more confident and/or the novelty will wear off and you will find a level which works for you. I have been using it for nearly a year and I still scan about 30 times a day and that works for me. Some of that time is just curiosity, but mostly there is a reason and it will be to help me make a decision about timing of food or exercise or if I need a correction and when and how much. If you are scanning lots and getting anxious about the results then that is the time to think about not using it at all but I find the Time in Target feature makes me more relaxed because I know that they don't expect me to keep it in that broad range all the time, just the majority so if I go above or below I use it to figure out why so that I can hopefully prevent it happening again, but not all are preventable. Too many things have an impact and not all are within our control including being inexperienced or just taking our eye off the ball.... it is human not to get 100% time in range all the time. I manage the odd day very occasionally when I keep manage to keep my levels in the green band but it is one day a month if i am lucky. Even non diabetics with a fully functioning pancreas fail to keep in range all the time, so don't fret about it when you cross the line.

As regards the sensor itself, you will get used to it and get to the stage that you forget it is there but it is all new and foreign at the moment. I am conscious of not lying on it at night but it doesn't stop me sleeping well. The shower is where I really have to concentrate as I always give myself a good scrub with exfoliating gloves and I have caught it a couple of times when I forgot and gave it a good scrub and it lifted. I now tape it with micropore before I get in the shower which makes it feel different as well as making it more secure so I don't scrub it off! The band sounds like a good idea but be careful not to have it too tight as that may affect the accuracy of the readings. I have taped mine down a little too firmly on occasion and it didn't like it and starts reading low, when I am not. 

Anyway, I am waffling far too much to someone who is already suffering overload, so will wish you a lovely weekend and hope you are able to relax and enjoy it.


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## Ljc (Apr 24, 2021)

Hi. When you put your own sensor on you can place it where it’s convenient for you on your upper arm, tbh I would find it awkward where the nurse has applied yours.

I have the old Libre , no alarms and I find it’s usually up to 2.0 below  a finger prick.  I usually put a new sensor on without activating it about a day  before the old sensor runs out, this gives it time for the area to settle down.

You scan as often as you want to,,ok. It really doesn’t how many times you scan as long as it’s no more than 8 hrs between scans . Or for following the dvla rules when driving
When I was new to the Libre I was scanning 16+ times a day.


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## LittleSunflower (Apr 24, 2021)

rebrascora said:


> Yes, there is such a lot to take in that overload is common. Do things at your own pace and try not to worry. You got to this point OK didn't you and you are probably over the worst bit now which is those initial few days of testing and injecting. Yes there is still a lot to learn but you have the basics and from your first few posts after starting on insulin it was clear that you have a good sense of intuition with it, which is half the battle. learning to listen to your body and figuring out what it needs rather than what the nurse tells you or a book says or whatever guidance you are given. If you are happy scanning 100 times a day and it gives you reassurance then do it. You will soon learn to be more confident and/or the novelty will wear off and you will find a level which works for you. I have been using it for nearly a year and I still scan about 30 times a day and that works for me. Some of that time is just curiosity, but mostly there is a reason and it will be to help me make a decision about timing of food or exercise or if I need a correction and when and how much. If you are scanning lots and getting anxious about the results then that is the time to think about not using it at all but I find the Time in Target feature makes me more relaxed because I know that they don't expect me to keep it in that broad range all the time, just the majority so if I go above or below I use it to figure out why so that I can hopefully prevent it happening again, but not all are preventable. Too many things have an impact and not all are within our control including being inexperienced or just taking our eye off the ball.... it is human not to get 100% time in range all the time. I manage the odd day very occasionally when I keep manage to keep my levels in the green band but it is one day a month if i am lucky. Even non diabetics with a fully functioning pancreas fail to keep in range all the time, so don't fret about it when you cross the line.
> 
> As regards the sensor itself, you will get used to it and get to the stage that you forget it is there but it is all new and foreign at the moment. I am conscious of not lying on it at night but it doesn't stop me sleeping well. The shower is where I really have to concentrate as I always give myself a good scrub with exfoliating gloves and I have caught it a couple of times when I forgot and gave it a good scrub and it lifted. I now tape it with micropore before I get in the shower which makes it feel different as well as making it more secure so I don't scrub it off! The band sounds like a good idea but be careful not to have it too tight as that may affect the accuracy of the readings. I have taped mine down a little too firmly on occasion and it didn't like it and starts reading low, when I am not.
> 
> Anyway, I am waffling far too much to someone who is already suffering overload, so will wish you a lovely weekend and hope you are able to relax and enjoy it.


I’ve just had a hypo of 3.7 so treated it. Checked with blood to see if it had worked 15 minutes later, reading of 5.8 but the Libre said 4.7. I tried to scan again but it’s now saying unable to get a reading and to scan in 10 minutes, scanned again after the 10 minutes but it said the same error message. Has this happened to you? I’ve read it can play up if BS is rising quickly  I hope it’s not a faulty sensor already!


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## grovesy (Apr 24, 2021)

It can also happen when falling quickly too!


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## rebrascora (Apr 24, 2021)

Well done on treating your hypo effectively! 
It usually takes half an hour for Libre to catch up with BG levels (at least it does with the original Libre 1) because it measures interstitial fluid rather than blood so it lags behind the finger prick readings by about 15 mins and yes it may well be that the rapid change of direction Ie dropping then coming back up due to fast acting hypo treatment has confused it a bit, so best to give it half an hour and then try again. If you are using your phone it might help to use the reader and see if that will give you a reading.... if you have a reader. There have been some Libre 2 sensors which have had problems with this and end up failing altogether but with it happening when your BG levels are changing rapidly, I would imagine it isn't a faulty sensor but just the circumstance and it will be back working correctly again soon. 

My Libre sensor just fell off this afternoon whilst I was working at the yard with 5 days to go (I was doing manual labour in the sunshine so maybe a combination of heat and sweat) so I think I am going to have to invest in a strap as that is the second one that has come adrift consecutively. I accept that the previous one I caught in the shower but I have been ever so careful with this one. If you don't mind me asking where did you order your strap from?


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## LittleSunflower (Apr 24, 2021)

rebrascora said:


> Well done on treating your hypo effectively!
> It usually takes half an hour for Libre to catch up with BG levels (at least it does with the original Libre 1) because it measures interstitial fluid rather than blood so it lags behind the finger prick readings by about 15 mins and yes it may well be that the rapid change of direction Ie dropping then coming back up due to fast acting hypo treatment has confused it a bit, so best to give it half an hour and then try again. If you are using your phone it might help to use the reader and see if that will give you a reading.... if you have a reader. There have been some Libre 2 sensors which have had problems with this and end up failing altogether but with it happening when your BG levels are changing rapidly, I would imagine it isn't a faulty sensor but just the circumstance and it will be back working correctly again soon.
> 
> My Libre sensor just fell off this afternoon whilst I was working at the yard with 5 days to go (I was doing manual labour in the sunshine so maybe a combination of heat and sweat) so I think I am going to have to invest in a strap as that is the second one that has come adrift consecutively. I accept that the previous one I caught in the shower but I have been ever so careful with this one. If you don't mind me asking where did you order your strap from?


Thank you for the quick response. It’s started scanning again now thankfully. No wonder it had an error message; I went from the last reading of 4.7 all the way to a 9.3 within 30 minutes! Although it’s probably a blood reading of a 10 in reality.
Sorry to hear yours fell off  all of the hard work you are doing by the sounds of things!
I got the arm band from Ebay (are links allowed on here?)









						Freestyle Libre Sensor Flexible Armband Holder Protects Sensor PREMIUM STRAPS  | eBay
					

Find many great new & used options and get the best deals for Freestyle Libre Sensor Flexible Armband Holder Protects Sensor PREMIUM STRAPS at the best online prices at eBay! Free delivery for many products.



					www.ebay.co.uk
				




That’s the listing I chose but there are plenty on there to browse through. I’ve fallen into the trap of buying stickers or accessories for everything.. why not eh?


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## rebrascora (Apr 24, 2021)

I find my Libre reads lower than a finger prick when I am low and higher than a finger prick when I am high and about the same when I am around the 4-7 range but again your levels need to be quite static to compare them with any degree of fairness. If they are changing then the libre is going to be 15 mins behind in whichever direction they are changing.

Thanks for the info re armbands. Deciding on a colour scheme is the most difficult part. Do I want something like peach which will blend in or green with a black strap to make a feature of it. They are a bit naughty in how they advertise the price as £3.95 and then when you click on what you want it jumps to £8.95! Can't afford 2 at that price! Probably best to have a bright colour so it is visible when running etc.


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## Ljc (Apr 24, 2021)

Tip.  It’s best not to rely on the sensor for treating hypo’s or hypers , with  it’s due to the delay of glucose not reaching the interstitial fluid it samples rather than blood, so it’s easy to over treat and similar but in sort of in revers for hypers , they are also not as accurate at high or low BGs  as test strip.


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## LittleSunflower (Apr 24, 2021)

rebrascora said:


> I find my Libre reads lower than a finger prick when I am low and higher than a finger prick when I am high and about the same when I am around the 4-7 range but again your levels need to be quite static to compare them with any degree of fairness. If they are changing then the libre is going to be 15 mins behind in whichever direction they are changing.
> 
> Thanks for the info re armbands. Deciding on a colour scheme is the most difficult part. Do I want something like peach which will blend in or green with a black strap to make a feature of it. They are a bit naughty in how they advertise the price as £3.95 and then when you click on what you want it jumps to £8.95! Can't afford 2 at that price! Probably best to have a bright colour so it is visible when running etc.


Libre says I’m a 13.2 now and I’m yet to have any dinner which is a bit concerning. Is there any way to bring levels down without insulin? Exercise or anything of the such? Haven’t been told or read much about treating hypers other than to test for Ketones at around 15+

& yes I was surprised when the price changed. I went with yellow (as it’s my favourite colour) and the black elastic so I’d support your green and black choice!


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## Pattidevans (Apr 24, 2021)

Regarding Libre readings being different to blood glucose readings, it does pay to remember that not only are they reading different things (interstitial fluid as opposed to blood) which causes the delay, but blood glucose meters can be +/- 15% out.  Also taking blood from different fingers at the same time can result in the readings differing a fair bit.  So please don’t stress it too much.  The device is wonderful  for showing an overall picture.  For what it’s worth, if you are using the phone app ensure you have the latest version 2.5.3.6373 or later as they have added an algorithm that makes it really accurate.

Lastly,  don’t stress too much because I’ve read this thread through and you are doing brilliantly!  I wish I’d been as clued up so soon after diagnosis.

HUGS!


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## LittleSunflower (Apr 28, 2021)

Hello all, me again!

Just a little update. My previous reduction of Levemir to just one injection of 4 units in the morning has now been reduced again to 3 units as of today. This is because I had a night time hypo 2 nights ago, luckily the libre alarm woke me up. Upon checking, I was 3.9 but the arrow was facing completely downwards which is not a good sign. I was unable to test my blood at this time so treated with half a carton of orange juice and a digestive biscuit which helped. I was 9.9 before I allowed myself to go back to sleep again.
I was 7.1 before sleep that night and within 2 hours I was below 4.

I have been feeling slightly better since getting the libre but not 100%, still early days yet I suppose.

I’m just wondering if anyone else experiences or can help explain why I’m dropping so much during the night, even with no levemir before bed like before?
Yesterday I took the 4 units in the morning and was 11.7 after my bedtime snack/ before sleep. When I woke up this morning I was 4.9!
The community nurse says I shouldn’t be any lower than a 9 (range between 9-10) before bed as I am dropping so much, even without those units of insulin.
I haven’t been able to have an afternoon nap recently either as it seems when I lie down or sit down for periods of time, my levels just drop. For this reason, I feel like I’m constantly eating to keep my levels stable. I have to say, I’m quite worried about my eyesight due to the constant fluctuation in my levels throughout the day (now that I can see that with the libre data).

It seems my anxiety may be playing up as I’ve had a couple moments of heart palpitations in the past 2 days and I’m struggling with injecting in the morning by myself - I think maybe because it’s a once a day thing, I am overthinking and tensing up too much.

I’ve also been discharged from the community diabetic team as I’m now under the care of the Hospital (after only one visit) which I’m still unsure about.

Hope you are all well x


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## Inka (Apr 28, 2021)

If by community diabetes team you mean your GP team, then yes it’s good you’re now under the hospital instead. They are specialists and know a lot more about Type 1.

What you’re describing is very common close to diagnosis - being high then going low with no recent insulin. It’s probably your own insulin responding to your high sugar - too slowly and too much (hence you’re going slightly low). Apologies if I’ve already said this, but when I was first diagnosed, I tried not taking my insulin. I shot up to around 13 but went down to 3.7 by lunch with no insulin. But obviously that’s not ideal (going that high, then dropping) so I reverted to taking my insulin and then my post-meal spike was ok. When needed, I topped up with a small snack. At this time I was only on 1 unit of basal. It was my bolus/meal insulin that was doing most of the work because it allowed me to eat without spiking. That’s one reason why I harped on about you getting the Novorapid. It’s generally meals that are the issue and Novorapid or similar deals with that and doesn’t hang around in your system like the basal does.

Sorry your anxiety is bothering you. It’s natural to be anxious after a diagnosis, and sometimes I think anxiety and stress bubble away under the surface then make themselves known at what seem like silly times, but it’s not so much a response to that moment, but a general anxiety about the whole situation that has managed to break through.


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## rebrascora (Apr 28, 2021)

Insulin needs change and I am currently going through a phase where I need little or more often no evening Levemir and yet rather too frequently hypo at 3-4am, when there is almost no active Levemir left in my system from the morning 7am dose.... Levemir is supposed to be active over about 18hrs but tails off quite significantly after about 10-12 hours. 

I can't figure out if my night time hypos are as a result of my basal needs dropping dramatically at that time of the night or Levemir being active in my body for longer than it should or my gut feeling is that my muscles replenish their stores when I lie down and suck the glucose out of my blood whilst i sleep. I did think perhaps I couldn't go dangerously low with only that tail end of the Levemir active (non diabetic people drop below 4 through the night probably more often than we realise but will not go dangerously low) but I went down to 2.9 at 5am the other morning with no evening Levemir on board. 

There was a time when I needed 7 units of Levemir in the evening and never hypoed a year ago so that shows you how variable insulin needs can be. I now need more on a morning and I am up to 22 units to keep me steady through most of the day but I start to go a bit low around 6pm. I find that a higher protein and fat, low carb meal in the evening without a bolus will stop the hypos but I may need a couple of units of Levemir to deal with it, which I know is odd using Levemir to cope with food but bolus insulin would kick in too quickly.  You could try a protein snack like a boiled egg with mayonnaise or some cooked meat or cheese at bedtime instead of a sandwich or biscuit and see how that works. Protein takes about 2 hours to start breaking down and releasing glucose , so that might give you a boost of glucose through the night when you are dropping low.


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## Pattidevans (Apr 28, 2021)

Barbara, have you by any chance lost weight recently?  I've lost 14  lbs in the last year and it has substantially reduced my basal needs.  As far as Levemir is concerned This graph seems to indicate that the lower the dose you need per kg of body weight, the shorter the duration of action. Odd really where your experience is concerned. Of course high fat meals do take longer to absorb. The beauty of the pump is the ability to extend the bolus over a period of hours. More or less what you are trying to do with the Levemir, but Levemir will of course continue working for up to 12 hours.


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## rebrascora (Apr 28, 2021)

Pattidevans said:


> Barbara, have you by any chance lost weight recently?  I've lost 14  lbs in the last year and it has substantially reduced my basal needs.  As far as Levemir is concerned This graph seems to indicate that the lower the dose you need per kg of body weight, the shorter the duration of action. Odd really where your experience is concerned. Of course high fat meals do take longer to absorb. The beauty of the pump is the ability to extend the bolus over a period of hours. More or less what you are trying to do with the Levemir, but Levemir will of course continue working for up to 12 hours.


I appreciate your thoughts Patti, but I am the same weight I was a year ago. It was increased exercise which appeared to trigger the start of the nocturnal hypos and reduction in evening basal until eventually I was still hypoing with none, which is why I came up with the idea that my muscles must be replenishing their stores during the night rather than it being the tail end of the Levemir. I assumed that I therefore wouldn't go too low but that 2.9 the other morning, 22hrs after my morning Levemir injection, says that isn't a safe assumption. I have sometimes found, like LittleSunflower, that my levels will drop if I have a nap too.... not always but I rarely do that anyway, but enough to see a pattern... again suggesting to me that muscles are taking the glucose out when I am lying down resting. I joke to my sister that if I slept 24/7 I wouldn't be diabetic.... or need insulin anyway!   
Interestingly I have had to increase my morning basal since I had my Covid vaccine in Feb. I was on 16 units and I am now on 22 and I wonder if the vaccine triggered my immune system to take out a few more of my remaining beta cells. The 22 units is holding me reasonable steady in the morning but I am currently having a pattern of going low at this time of night (particularly after a busy/active day) so the 22 units is just a bit too much at this time of day but it means I can have a bolus free low carb evening meal rather than be injecting corrections every 2 hours in the morning if I reduce the Levemir dose. I know a pump would resolve this but I have reservations for a number of reasons and the way I see it, things could totally change again in a few weeks or months and I could manage perfectly with my Levemir again.

I would welcome any comments you have although I must apologise to @LittleSunflower for hijacking her thread. Hopefully we can both learn from your comments/experience.


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## LittleSunflower (Apr 28, 2021)

Sorry not to reply directly to your responses to my last post but I just cannot win today. My levels have been up and down constantly. I had a hypo of 3.6 earlier (according to the libre when my bloods said 5.1), tested again and my libre said 3.3 with the downwards arrow so I acted with half a carton of orange juice and ate my dinner as usual, then shot up to a 14.1 a couple of hours later with an upwards arrow. I did a tiny bit of exercise in hopes it would decrease and my levels plummeted to 7.0 within one hour with the libre arrow facing down but to the right.  I am so frustrated with this, I don’t know what’s going on. Safe to say I will be going to bed in tears tonight with the added anxiety of having another night time hypo.


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## Lucyr (Apr 28, 2021)

LittleSunflower said:


> Sorry not to reply directly to your responses to my last post but I just cannot win today. My levels have been up and down constantly. I had a hypo of 3.6 earlier (according to the libre when my bloods said 5.1), tested again and my libre said 3.3 with the downwards arrow so I acted with half a carton of orange juice and ate my dinner as usual, then shot up to a 14.1 a couple of hours later with an upwards arrow. I did a tiny bit of exercise in hopes it would decrease and my levels plummeted to 7.0 within one hour with the libre arrow facing down but to the right.  I am so frustrated with this, I don’t know what’s going on. Safe to say I will be going to bed in tears tonight


This sounds more like your libre reading a bit low than your bloods being low? If your blood said 5.1 when the libre said 3.6 and 3.3 then you weren’t low, your libre was just reading a bit low.


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## rebrascora (Apr 28, 2021)

So sorry to hear you are anxious and frustrated. @Lucyr is right. Trust your finger prick and how you feel over the Libre reading every time. Libre can read lower for a variety of reasons. Have you been wearing the strap over it as increased pressure on it can make it read lower than you actually are. I taped mine down a bit too tightly with micropore once and that caused it to read low.

Unfortunately trying to impersonate a pancreas is not a very easy task and even 2 years down the line I have hypoed twice today and currently up at 12.3 and about to head out for a walk up to my stables to help bring it down along with a 1.5 unit correction. 
You will learn to be less frustrated when things don't go right and just do the best you can and accept that somedays the beast doesn't play fair and won't be tamed.... we sometimes say that the Daibetes Fairy (DF) is visiting. She is more of an evil little minx than a true fairy and she plays havoc with your levels. It helps to have something to blame when you can't see a reason for things. We are also very happy for you to have a good rant about it when you do feel frustrated because letting off steam to people who understand the frustration is better than taking it out on nearest and dearest who don't really "get it" 
Hope you are feeling a little better now but you will learn to roll with the punches. I naively thought that a couple of hypos a year would be normal-ish when I first started. I think I had 2 in a week early in that first summer and started to worry. Now I have 2 in a day (not every day thankfully but it happens occasionally) and I barely blink an eye other than to try to figure out how it happened and work out a strategy to prevent it next time, but it doesn't always work.


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## Inka (Apr 29, 2021)

Ignore the Libre and fingerprick. That’s one stress removed. Your team can still look at the data from it, but you could just fingerprick. Remember too that you’re still in your honeymoon and that makes blood sugar more erratic. The most frustrating thing about Type 1 is the need to adjust things so much. Other conditions mean you’re given a dose of meds to take and that’s it, but in Type 1 you’re nudging things this way and that on a daily basis, sometimes a number of times a day. Don’t take the numbers personally or think you’re failing at all. Being your own pancreas is a very hard job and perfection isn’t possible. X


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## Pattidevans (Apr 29, 2021)

Inka said:


> Ignore the Libre and fingerprick. That’s one stress removed. Your team can still look at the data from it, but you could just fingerprick.


Except that if you do not scan every 8 hours then you will lose the record of your BGs so that the team will not be able to look at the data.  So do scan every 8 hours at least.

For your interest, this link is to a document that explains a lot about the Libre.  If you scroll down to page 16 it explains much more clearly what the trend arrows do and in what time frame to look at them.  For example, a slanting arrow to the right indicates that you will be dropping 0.6 - 0.9 mmol/l within the next 10 - 15 minutes.  Indicating your 7.0 would reduce to 5 in approximately 30 minutes or more, so no need to panic and in the meantime the trend could change. Actually it's worth reading through apart from that graph.  If you have an hour to spare there is a very good webinar by Abbott "How to interpret Trend Arrows".  I was invited to all the Webinars when they first came out live and found them extremely useful.  Our Admin , (everydayupsandowns) makes an appearance in some of them!

Lastly from me... take notice of what others have already said.  No T1 has perfect control.  The international consensual agreement recommends no more than 5% of your time below 3.9, but even the most experienced T1 will sometimes find it really hard to achieve that.   Needs change with the wind and the weather (e.g. if it's hot you will probably need less insulin), whether you've done exercise, if you are ill and if the moon is in Aquarius,  Honestly don't stress too much.


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## Pattidevans (Apr 29, 2021)

rebrascora said:


> I appreciate your thoughts Patti, but I am the same weight I was a year ago. It was increased exercise which appeared to trigger the start of the nocturnal hypos and reduction in evening basal until eventually I was still hypoing with none, which is why I came up with the idea that my muscles must be replenishing their stores during the night rather than it being the tail end of the Levemir. I assumed that I therefore wouldn't go too low but that 2.9 the other morning, 22hrs after my morning Levemir injection, says that isn't a safe assumption.
> 
> I would welcome any comments you have although I must apologise to @LittleSunflower for hijacking her thread. Hopefully we can both learn from your comments/experience.


With apologies from me to Little Sunflower also!  Perhaps we should start another thread, or maybe Admin could split this one?

2 thoughts and you sound like you  know the first...   Exercise lowers insulin resistance and makes your body more receptive to converting BG to energy, thus dropping BG.  The second one is that your Levemir could be lasting longer than you think.  According to the graph I posted the link to, the lower the dose per kilogram of weight the shorter the duration.  As you ramp up the dose per kilo of body weight, the longer it lasts. I do know it's difficult to get your head round that chart, but as an example (I do not know your weight),  take a person of 9.5 stones which translates to 60.45 kilos taking 0.2u insulin per kilo of body weight i.e.approx 12u then the Levemir will in all likelyhood run out after 16-18 hours.  If that same person was taking 24u i.e. 0.4u per kilo of body weight, then the Levemir will probably last 22 hours.


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## rebrascora (Apr 29, 2021)

@Pattidevans 

Thanks for that. Yes I am familiar with that Levemir activity graph and how to interpret it. I am about 64kg. I looked at it in detail last November when the nocturnal hypos started. At the time I was taking 16 units of Levemir in the morning and gradually whittled it down from 5/6 units at night to none and the hypos still continued albeit intermittent. I had to bump my bedtime BG levels up to 10 or 11 to keep me from dropping low usually between 3-5am. Rang my hospital clinic helpline in the end and the DSN was a bit mystified too and just suggested I keep doing what I was doing and keep my bedtime levels high. Since Feb my basal needs have increased and I am now on 22 units in the morning which obviously will change my profile on the graph and extend the length of activity and I hadn't factored that in but since the hypos were happening in Nov, when I was on less basal and still happening it doesn't really help. 

Of course the graph is just a guide and as with all biological systems it may be that my body reacts slightly differently (probably slower) than is the "norm". I know my QA insulin is slow to get going and I need 45 mins for Fiasp before breakfast and an hour plus with NR so maybe my body is more to one end of the spectrum of "normal" than the middle...... 
Anyway, the wind is changing and the last 3 nights I have woken up high 9-13s so I am probably going to try 1-2 units of Levemir tonight and see what happens. I did a 3 unit correction this morning which almost completely disappeared, so I wonder if this second vaccine that I had yesterday is messing with things again too. There is always something to put a spanner in the works!


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## Pattidevans (Apr 29, 2021)

Ahhh yes, it could well be the 2nd dose of vaccine.  I had hideous high BGs for a week to 10 days after the first one, but absolutely no reaction at all to the 2nd one.   As you say, everyone is different.


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## everydayupsanddowns (Apr 29, 2021)

Sorry to hear you are having such a runaround with your BGs at the moment @LittleSunflower - hope you can quell the anxiety and know that you are doing your best. The sorts of hypos you are having, while unpleasant and in need of urgent treatment, are arguably not immediately threatening, so you have time to experiment. 

What time are you eating your evening meal? Bolus insulin can hang around a very long time, 4-6 hours, so if you are eating evening meal at 7-8ish you may be going to bed with the tail end of your food bolus still working?


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## LittleSunflower (Apr 29, 2021)

everydayupsanddowns said:


> Sorry to hear you are having such a runaround with your BGs at the moment @LittleSunflower - hope you can quell the anxiety and know that you are doing your best. The sorts of hypos you are having, while unpleasant and in need of urgent treatment, are arguably not immediately threatening, so you have time to experiment.
> 
> What time are you eating your evening meal? Bolus insulin can hang around a very long time, 4-6 hours, so if you are eating evening meal at 7-8ish you may be going to bed with the tail end of your food bolus still working?


Thank you @everydayupsanddowns
I don’t believe I’m on bolus at the moment - still getting used to the diabetic terms haha. I only take 2 units of Levemir in the morning now (reduced from the 3 yesterday). I am fluctuating after I’ve eaten something and when I’ve moved around a bit more during the day which could encourage the fact I may need the 1 unit or even the half unit pen of Novorapid introducing soon. I am super sensitive to insulin and they believe I’m in a honeymoon period at the moment.


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## LittleSunflower (Apr 29, 2021)

Inka said:


> Ignore the Libre and fingerprick. That’s one stress removed. Your team can still look at the data from it, but you could just fingerprick. Remember too that you’re still in your honeymoon and that makes blood sugar more erratic. The most frustrating thing about Type 1 is the need to adjust things so much. Other conditions mean you’re given a dose of meds to take and that’s it, but in Type 1 you’re nudging things this way and that on a daily basis, sometimes a number of times a day. Don’t take the numbers personally or think you’re failing at all. Being your own pancreas is a very hard job and perfection isn’t possible. X


Thank you so much for this, it’s really helped put things into perspective for me after such a rubbish day yesterday. 
I will definitely finger prick a bit more again instead of completely relying on the libre data. It is good to have a rough guide of where my levels are heading though - I think the arrows are my favourite thing about it, along with the daily graph to see what my levels have done throughout the day. X


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## LittleSunflower (Apr 29, 2021)

rebrascora said:


> So sorry to hear you are anxious and frustrated. @Lucyr is right. Trust your finger prick and how you feel over the Libre reading every time. Libre can read lower for a variety of reasons. Have you been wearing the strap over it as increased pressure on it can make it read lower than you actually are. I taped mine down a bit too tightly with micropore once and that caused it to read low.
> 
> Unfortunately trying to impersonate a pancreas is not a very easy task and even 2 years down the line I have hypoed twice today and currently up at 12.3 and about to head out for a walk up to my stables to help bring it down along with a 1.5 unit correction.
> You will learn to be less frustrated when things don't go right and just do the best you can and accept that somedays the beast doesn't play fair and won't be tamed.... we sometimes say that the Daibetes Fairy (DF) is visiting. She is more of an evil little minx than a true fairy and she plays havoc with your levels. It helps to have something to blame when you can't see a reason for things. We are also very happy for you to have a good rant about it when you do feel frustrated because letting off steam to people who understand the frustration is better than taking it out on nearest and dearest who don't really "get it"
> Hope you are feeling a little better now but you will learn to roll with the punches. I naively thought that a couple of hypos a year would be normal-ish when I first started. I think I had 2 in a week early in that first summer and started to worry. Now I have 2 in a day (not every day thankfully but it happens occasionally) and I barely blink an eye other than to try to figure out how it happened and work out a strategy to prevent it next time, but it doesn't always work.


I haven’t worn the band much as my libre is in a weird place, I’ve stopped feeling it in my arm but when the band is on, I know it’s there again so it’s a strange sensation! 

We sound very similar in what we are experiencing at times with our diabetes, your words have helped me tremendously and make me feel less alone, along with @Inka . Thank you and I hope you’ve been ok today with less hypo readings x


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## rebrascora (Apr 29, 2021)

I think it just helps to understand what "normal" is and that there is a huge range of "normal" with diabetes. I know when I had 2 hypos in a week that first summer, I was really panicking and then someone very experienced here on the forum and whose opinion I respected, told me that they had 2 in a day quite often and that helped put things into perspective. The realisation that whilst they are to be avoided as much as possible, they happen despite your best efforts.... just like going high does too (I am currently at a whopping 19!!! as a result of my Covid jab yesterday!!) and you just have to accept that your best is all you can do and deal with whatever happens, which is beyond your control. 
Anyway, the good news is no hypos today for me.... so far!!


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## Inka (Jul 7, 2021)

Weirdly this chart shows bottom of bum. I’ve never done that.

https://forum.diabetes.org.uk/boards/attachments/4365afc2-1729-49e0-bdf6-132b83da74ae-jpeg.16641/

.


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