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Advice

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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.
 
trophywench said:
Nor me - want to chuck her in a car and take her to see my DSN!
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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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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”.
 
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.
 
It’s good you’re going down to 3 units of Lev at night 🙂 You’re right about my reaction to the Novorapid.... :D

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! :D
 
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)!
 
@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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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.
 
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!

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)!
Click to expand...
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
 
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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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
 
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.
 
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!
 
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.
 
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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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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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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