Don't know what to do anymore (long read)

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leonS said:
Welcome to the world of those who stick needles into themselves (just for fun?). This will soon make you feel much better.

You do not need to press for the tests to prove that you are T1. There is no way that a T2 can produce ketones when the BG is high. You just need to get this recorded and the have you records updated. There are advantages in being diagnosed as T1.

Your insulih will stay active (I think) for about 9 hours. A morning shot will cover most of the day with a low carb meal on the evening. I assume that eventually you will go to two shots a day. Ypu moght look at a more flexible base-bolus system for use when this happens.

Top tip: keep a log of what you eat, what you inject and your BG readings, with any other information that might ve useful.

Tip 2: never leave the house, even if it is only to go to the garden gate, without something to treat a hypo.
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And as I said elsewhere, you need to inform the DVLA.

That aside I am glad to hear you are getting better help, oh and I am sure you will feel the benefit of even a shortish lasting basal, but eventually you will need a clear diagnosis of type as T2 on insulin are treated completely different to T1s. Unfortunately they tend to treat T2s as second class citizens. T1s normally get much better support, more access to the latest technology and education, plus more modern insulins.
 
Inka said:
There is no way that a T2 can produce ketones when the BG is high.

That’s not true. Some Type 2s can produce ketones, and, although rare, Type 2s can get DKA too.
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About to say the same, I’m t2 and I’ve had DKA whilst taking insulin
 
@leonS
I've had hypo stuff in my bag since gliclazide came onto the scene 😉
BG readings are required by DSN (i assume to figure out what direction to move things to) and can log carbs too. good suggestion 🙂

@Pattidevans I don't drive so it isn't an issue. I mean I can drive, just never got around to sitting my test. Provisional lapsed a few months back so nothing to sort there but ty <3
 
leonS said:
How?
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How what, how would a t2 have DKA? The same way a T1 would, not having enough insulin to allow glucose into your cells.
 
Update:
DSN phoned this morning.

She's delighted with progress so far for such a small dose of insulin. Understands how frustrating it can be to be less aggressive than some HCPs start people on but wants it to be nice n slow to protect my eyes from more damage.

She's more looking at my trends going down my logbook and not across (ie is waking trending down and is lunchtime trending down) and can see they are all pretty much going the right way and not to get too hung up on the rogue numbers right now.

We also touched on the MH side of diabetes controlling me and not me controlling it. I told her I literally said yesterday I long for the day when I feel more in control of it.
Talked a little about my low to moderate carbs (she was full of praise) but did warn her when I'm at target, they may go up a little again towards a more sustainable diet so expect a rise and is happy with that game plan, for now just getting to 7 will change the ball game and what we can do.

Told her I felt it high 20 and felt low at 10 this week so my comfy levels have shifted down. I can hit pause on adjusting at any time if I feel too low just to acclimatise to newer numbers.

Have an appointment letter being sent out for next month so will defo get a call back then but she was very genuine with the phone anytime comments.
I'm a lot happier/reassured even though nothing has changed treatment wise 🙂
 
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gll said:
We also touched on the MH side of diabetes controlling me and not me controlling it. I told her I literally said yesterday I long for the day when I feel more in control of it.
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Would it help if you thought of it as managing your diabetes rather than controlling it?

Unfortunately as we are humans and not machines we have no control over certain things in life including what our blood sugars decide to do unasked 🙂

You are doing a fantastic job so well done and it sounds as if you have a very helpful nurse which is always good 🙂
 
Inka said:
Could missing some meals/eating hardly anything be encouraging your body to pump out glucose? Mine does if I wake up high and don’t eat. That’s my first thought.

You don’t mention your weight, but personally I’d be thinking about insulin or similar. I wouldn’t want to be in the teens so much.
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Yesterday I had yoghurt and fruit for breakfast and 2 hours later my level was 8.2, this is high for me. The yoghurt was no added sugar plain. If I have a more filling breakfast I get lower levels
 
gll said:
Update:
DSN phoned this morning.

She's delighted with progress so far for such a small dose of insulin. Understands how frustrating it can be to be less aggressive than some HCPs start people on are but wants it to be nice n slow to protect my eyes from more damage.

She's more looking at my trends going down my logbook and not across (ie is waking trending down and is lunchtime trending down) and can see they are all pretty much going the right way and not to get too hung up on the rogue numbers right now.

We also touched on the MH side of diabetes controlling me and not me controlling it. I told her I literally said yesterday I long for the day when I feel more in control of it.
Talked a little about my low to moderate carbs (she was full of praise) but did warn her when I'm at target, they may go up a little again towards a more sustainable diet so expect a rise and is happy with that game plan, for now just getting to 7 will change the ball game and what we can do.

Told her I felt it high 20 and felt low at 10 this week so my comfy levels have shifted down. I can hit pause on adjusting at any time if I feel too low just to acclimatise to newer numbers.

Have an appointment letter being sent out for next month so will defo get a call back then but she was very genuine with the phone anytime comments.
I'm a lot happier/reassured even though nothing has changed treatment wise 🙂
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Well done and your nurse sounds very good. Diabetes can be over whelming and as others have suggested maybe think of it as managing not controlling it. You will get ups and downs . I worry when I get the odd rogue high reading of say 11 but know if I drink water and move about it will lower. It takes a while for your body to adjust to a different way of eating, etc and the main thing is you are heading in the right direction.It doesnt matter how long that takes as long as you get to where you need to be eventually. I was doing fine with an HBA1c of 50 then stress and life events caused it to go to 84. I then decided to start a low carb diet. I used this site plus I joined the low carb programme which is run in conjunction with the NHS. I also went on to the website for my local NHS and looked up diabetic services. There was mentiuon there of a programme called second nature so I filled in the contact form. Much to my surprise I received a call telling me I could have a free place on the programme as my GP surgery subscribe to it , I received a free recipe book, hand book, digital scales to weigh myself and a fitness tracker. You get lots of support from health coaches. My GP didnt know anything about it! Could be worth checking
 
@Pumper_Sue appreciate that <3
If I go back to what I said on my first post (I'm so putting that in my signature)
My pancreas is a toddler. Some days with some gentle encouragement (aka meds), it behaves for the most part and everyone is happy. Other days it is a day filled with tantrums and flailing about screaming loudly where no amount of coaxing will get it to behave itself and then suddenly the tears dry up and it is all smiles again.
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I totally accept this (which is progress)
I would just love to be able to roll my eyes at my body having a tantrum and stick a correction in instead of knowing my high now will likely carry itself through the day unless I go super minimal on carbs for the next meal (which is entirely impractical if I am out for the day and bought lunch with me) 🙂
I mean today vs a month ago, totally different ball game now. 23-hi on the meter vs my 15-17 ish is a huge drop.
Being able to sleep without getting up to pee every hour is massive.

pinkjude said:
Yesterday I had yoghurt and fruit for breakfast and 2 hours later my level was 8.2, this is high for me. The yoghurt was no added sugar plain. If I have a more filling breakfast I get lower levels
Click to expand...
I often do a yogurt (activia) when I'm just up to stop the "helpful" glucose dump and follow up with a 11g carb bar like alpen light an hour or two later. Really not a eat first thing kinda gal.
I keep toying with the idea of shakes in the morning as I can down one of those first thing and usually be okay until lunchtime. When I do my next libre I will see how that works out with rises.
Is the second nature repackaged keto or just low carb?
 
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At least it's good news that the nurse is going to ring again, but as I have said elsewhere, I simply cannot understand why they are so reluctant to do the proper tests to provide a correct diagnosis.... all I can see from your posts is that various HCPs "think" you are T2. Perhaps I am getting so het up about it on your behalf because something similar happened to me... although I was promptly put on a proper insulin regime I was denied all sorts of other things e.g. carb counting course (although it was fairly easy to teach myself). Once I had the tests and a proper diagnosis it was a totally different ball game regarding access to diabetic technology etc.
 
gll said:
@Pumper_Sue appreciate that <3
If I go back to what I said on my first post (I'm so putting that in my signature)

I totally accept this (which is progress)
I would just love to be able to roll my eyes at my body having a tantrum and stick a correction in instead of knowing my high now will likely carry itself through the day unless I go super minimal on carbs for the next meal (which is entirely impractical if I am out for the day and bought lunch with me) 🙂
I mean today vs a month ago, totally different ball game now. 23-hi on the meter vs my 15-17 ish is a huge drop.
Being able to sleep without getting up to pee every hour is massive.


I often do a yogurt (activia) when I'm just up to stop the "helpful" glucose dump and follow up with a 11g carb bar like alpen light an hour or two later. Really not a eat first thing kinda gal.
I keep toying with the idea of shakes in the morning as I can down one of those first thing and usually be okay until lunchtime. When I do my next libre I will see how that works out with rises.
Is the second nature repackaged keto or just low carb?
Click to expand...
second nature is basically a programme for anyone with diabetes or anyone trying to lose a lot of weight or both. Its principles are instilling habits that become second nature
 
pinkjude said:
Yesterday I had yoghurt and fruit for breakfast and 2 hours later my level was 8.2, this is high for me. The yoghurt was no added sugar plain. If I have a more filling breakfast I get lower levels
Click to expand...
You only mention what your reading was after breakfast not before so it may well have been OK. What fruit did you have and how much?
 
pinkjude said:
second nature is basically a programme for anyone with diabetes or anyone trying to lose a lot of weight or both. Its principles are instilling habits that become second nature
Click to expand...
Not all CCG's offer the same programmes.
 
gll said:
Update:
DSN phoned this morning.

She's delighted with progress so far for such a small dose of insulin. Understands how frustrating it can be to be less aggressive than some HCPs start people on are but wants it to be nice n slow to protect my eyes from more damage.

She's more looking at my trends going down my logbook and not across (ie is waking trending down and is lunchtime trending down) and can see they are all pretty much going the right way and not to get too hung up on the rogue numbers right now.

We also touched on the MH side of diabetes controlling me and not me controlling it. I told her I literally said yesterday I long for the day when I feel more in control of it.
Talked a little about my low to moderate carbs (she was full of praise) but did warn her when I'm at target, they may go up a little again towards a more sustainable diet so expect a rise and is happy with that game plan, for now just getting to 7 will change the ball game and what we can do.

Told her I felt it high 20 and felt low at 10 this week so my comfy levels have shifted down. I can hit pause on adjusting at any time if I feel too low just to acclimatise to newer numbers.

Have an appointment letter being sent out for next month so will defo get a call back then but she was very genuine with the phone anytime comments.
I'm a lot happier/reassured even though nothing has changed treatment wise 🙂
Click to expand...
It's good to read this progress report; I suspect its good for you just being able to report something positive, even (as you say) nothing has changed treatment wise -yet!

Your comments about your pancreas being akin to a toddler amused me when I first read it and reminded me that I was going to reply - but then forgot who originated the comparison. I identified with that - then remembered that they took my pancreas away; so either I'm getting phantom responses or else it's even more complicated and the mysteries of DM deepen!
 
Glad there is ongoing gradual improvement @gll - and still immensely frustrated in your behalf over the huge delays.

Hope you do get access to GAD and cPep checks at some point, just to finally lay that question to rest!
 
Another Appointment / Update

Given all my numbers for the last week. She agreed still too high.
I've to do +4u increases of insulin now and booked in for another review in 2 weeks with the probability of teatime dose (same insulin - humulin i) being initiated then. Once again protocols were mentioned and trying to do things slowly.
She is sending me out samples of 5mm and 4mm needles after discussing issues with injecting into thighs and see if they suit better 🙂

I have got some libre sensors to do me a couple of months and she would love the data to be shared with her (not supplied by them though) but anything in the plight to get onto the right regime 🙂
(Massive thanks to a very kind member who had un-needed sensors that were sent to me <3 )

Totally forgot to ask about type testing. One of the few things I forgot to write down 🙄
 
So pleased you had a mostly positive response and that you have obtained those spare sensors as I am sure they will help you.
Not sure I understand the bit about evening Humulin I. Are you just taking it once a day at the moment? ... If so, is she suggesting you split the dose or just start adding a bit extra in the evening instead of more on a morning? Really wish they would give you a basal/bolus system but I guess we have to be thankful they have at least given you insulin at the moment. Shame you didn't ask about testing but you can ask in 2 weeks time.... Make it top of the list!
Look forward to seeing your waking levels start coming down now you can ramp up the dose a bit.
 
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