Normal or concerning?

[LittleSunflower]

Test again by fingerprick - what are you now? Drink plenty of water that will help. I don’t think you’re on the NR yet? But you’d use that to correct. However as it’s evening and we’ve no idea of your correction factor then it would be best to wait a little and keep drinking water.

Still no Novorapid.
I was 13.5 one hour later and 10.6 two hours later and ketone level was Lo.
Now I’m 7.6 three hours later so I’ve had a digestive biscuit before I sleep.

 

[Inka]

Still no Novorapid.
I was 13.5 one hour later and 10.6 two hours later and ketone level was Lo.
Now I’m 7.6 three hours later so I’ve had a digestive biscuit before I sleep.

Speak to your team. I still don’t understand why you don’t have the appropriate bolus insulin. Yes, 13.5 isn’t super-high but it’s higher than desired and even if you only used the NR for some meals it would help.

 

[Inka]

I’ve just looked back because I thought I must have been misremembering - but I wasn’t. You have NR in your fridge? Why are they making you go up to the 17s (previous page) and not use the NR?

 

[LittleSunflower]

I’ve just looked back because I thought I must have been misremembering - but I wasn’t. You have NR in your fridge? Why are they making you go up to the 17s (previous page) and not use the NR?

The hospital team said because it’s not every day or a constant high, it’s absolutely fine for me to had the odd occasion to go high. My eyesight has been blurred for the most part of the day, not sure if this is related as I know anxiety can also cause this or it’s just generally my vision as I have to wear glasses anyway.
The past 2 days, I’ve been going higher after every meal, even though I’ve basically eaten the same things since starting on insulin (I know no two days are the same with diabetes) but it doesn’t make any sense to me either, as you can clearly see from my Libre data that I am spiking 1, mainly 2 hours post meal. - see photo; sleeping, breakfast, mid morning snack, lunch, afternoon snack(low to no carb), dinner (high carb) and before bed.
I’ve woken to a 4.8 this morning.
I am still only on 1 unit of Levemir, thinking of increasing to 2 today, what do you think?

 

[LittleSunflower]

I have weighed myself this morning. I seem to have lost more weight, totalling my loss to a stone since October 2020 now. I am very upset, no idea what’s going on as I’m eating more than I ever have done
My bmi is now 16.9, the lowest I have been since my eating disorder years 10 years ago.

 

[Inka]

*as you can clearly see from my Libre data that I am spiking 1, mainly 2 hours post meal*

That’s exactly what’s to be expected - exactly! That’s the way the insulin production declines. You seem to have been receiving sub-par care all along here. You were incorrectly diagnosed, prescribed an idiotic amount of Levemir to start on, and now being made to suffer high blood sugar and weight loss because you’re still not being treated properly as a Type 1.

You have the NR in the fridge. They’ve even stupidly given you disposable one unit pens instead of the bl**dy obvious half unit reusable pen and cartridges. I know what I’d do....

 

[Inka]

Oh, and no - it’s not absolutely fine for you to go high “because it’s not every day”. That’s a disgusting attitude from them. I’m fuming on your behalf.

 

[LittleSunflower]

I have contacted the hospital clinic, contacted my old community nurse who said she will contact the hospital too as I’m no longer under their care so she can’t really advise what to do. So I’m awaiting a call back from the hospital again.
They tried to say my weight loss was related to my eating disorder habits, although I am having 3 meals and 3 snacks a day; the most I have had since my eating disorder treatment! Next they will probably say it’s my anxiety or stress that’s causing me to feel bad. I know it plays a part but none of this feels correct and I feel like I’ve got no reliable support from any professional.

 

[Inka]

I think when the hospital call you back you should be prepared with a rough script of what you’re going to say, jotted down as notes beside you. If you think they’re going to focus on your previous eating habits, then get in there first and make it very clear you’re eating properly. Write down the sentence you’re going to say so you can say it firmly and confidently.

Take control of the conversation - lead it. Don’t sit there and wait for them to say things that you have to respond to. Make it the other way round. Write down your concerns and state them firmly and clearly eg “I am not happy about these frequent highs....” Use a word we often don’t use enough: No. No, is a complete sentence, as they say. It can be an incredibly powerful word, and I wish I’d used it more when I was younger.

If they try to make you continue as you are, use No. Tell them clearly that you’re not happy. Don’t equivocate or apologise or take a submissive tone. Mention of dissatisfaction and complaints and PALS is your last resort, but don’t be afraid to use it. Don’t let them postpone things: “No, I want this sorted out now/No, I want the option to use NR now/No, I’m not happy to wait till then”.

I write all that advice not because I’m super-confident and an expert in any way, but because I’m not confident, and I know how hard it can be to stand up for yourself, especially when you’re feeling concerned and probably not 100% health-wise.

 

[LittleSunflower]

I think when the hospital call you back you should be prepared with a rough script of what you’re going to say, jotted down as notes beside you. If you think they’re going to focus on your previous eating habits, then get in there first and make it very clear you’re eating properly. Write down the sentence you’re going to say so you can say it firmly and confidently.

Take control of the conversation - lead it. Don’t sit there and wait for them to say things that you have to respond to. Make it the other way round. Write down your concerns and state them firmly and clearly eg “I am not happy about these frequent highs....” Use a word we often don’t use enough: No. No, is a complete sentence, as they say. It can be an incredibly powerful word, and I wish I’d used it more when I was younger.

If they try to make you continue as you are, use No. Tell them clearly that you’re not happy. Don’t equivocate or apologise or take a submissive tone. Mention of dissatisfaction and complaints and PALS is your last resort, but don’t be afraid to use it. Don’t let them postpone things: “No, I want this sorted out now/No, I want the option to use NR now/No, I’m not happy to wait till then”.

I write all that advice not because I’m super-confident and an expert in any way, but because I’m not confident, and I know how hard it can be to stand up for yourself, especially when you’re feeling concerned and probably not 100% health-wise.

Guess who might be starting on Novorapid half unit pen this week?
Thank you for your help as always @Inka.
I wrote down what I wanted to say, got my point across about my weight and spiking 2 hours post meal and the nurse listened!
She has to speak with the consultant and is ringing me back tomorrow to discuss the half unit pen. I think I have to go to the hospital clinic again so they can talk me through the ratio side of things.
She was very shocked I am only on 1 unit of Levemir still.
Let’s hope they are not just words and the action plan is put into place

 

[Inka]

 

[Inka]

Finger crossed for you @LittleSunflower and well done!

 

[LittleSunflower]

Update; there’s been a change of plan.
No Novorapid as of yet and when I do, it will still be the half unit.
The nurse has spoken to various different professionals since our phone call yesterday and the result is that I am being referred to the Endocrinology department for TSH T4, C-peptide/urine peptide and another one starting with a Ch (I couldn’t quite catch it, even after asking three times) tests. Hyperthyroidism runs in my family so they want to check that as they are a bit confused why I’m losing weight still.
I see some of the symptoms for diabetes and thyroid issues are similar but it will be good nonetheless to be checked out properly.
My GAD test confirms I am Type 1 diabetic but apparently I am a complex case. (Nothing is ever straightforward with me!)
I have been advised to stop my 1 unit of Levemir for a couple of days, to see what my levels do, a sort of experiment. I went to bed on a 14 and woke to a 4.1 within 5 hours last night, so it’s clear I’m still in the honeymoon period. Of course I am still concerned about going high through all of this but it should be clearer in 1-2 weeks time when the consultant gets into contact with me to discuss this further. It will have been 12 weeks since my referral next month! So hopefully I can be seen by him and get answers for this crazy and confusing time in my life.
I am to still check for ketones if I feel sick in the next few days when off of insulin and I will finger prick to confirm my true level when needed.

 

[PattiEvans]

Was the other test Cholesterol?

 

[LittleSunflower]

Was the other test Cholesterol?

Oh yes, that would make sense!

 

[rebrascora]

@Inka I knew your celebratory Giff was jumping the gun!

@LittleSunflower Have they given you any idea of what you are supposed to do if your BG levels go through the roof during this experimental period of no insulin?

 

[Inka]

@rebrascora I did hesitate for a moment before I posted it. I was hoping my nervousness was unfounded.

@LittleSunflower I don’t get it. Checking your thyroid is fine and a good idea. I’m never quite sure about the names of the thyroid checks but I have the ‘normal’ one every year and I’ve also had the extra check(s) at least once. But I don’t get all the talk of “complex”. Forgive me if I’m repeating myself but my Type 1 presentation was deemed “atypical” yet I was still started on basal and bolus insulin. I’ve already explained how my body could eventually get my blood sugar down after a spike, but my consultant explained that spiking like that wasn’t good and also that it would exhaust my remaining islets quicker. I didn’t want that for sure!

I’m not special. Over the many years I’ve had Type 1, I’ve often read stories of unusual presentations. It’s definitely not unheard of. The way my consultant explained it was that there were different onsets of Type 1 (for reasons not known) and some people’s onsets were superfast and some slow, and some a kind of up and down erratic onset rather than a steady decline of islet destruction.

I keep saying what I’d do but I don’t know what else to say. I wouldn’t be happy with those spikes. Firstly because of the potential for damage, secondly because the environment of high blood sugar speeding up the death of the remaining islets, and thirdly because I’d be waiting for something to go wrong - a tummy upset triggering a sudden decline and ketones, a urinary infection causing very high blood sugar, etc. I’d also hate the little things that high blood sugar brings like tiredness, thirst, thrush, and generally feeling rough.

You can still complain. I’d put any complaint in writing at this stage, if you choose to complain. You could also, if you prefer, take a ‘half way’ option and get/keep your Levemir and Novorapid ready for use if you choose to. It’s your health and your body.

 

[LittleSunflower]

@Inka I knew your celebratory Giff was jumping the gun!

@LittleSunflower Have they given you any idea of what you are supposed to do if your BG levels go through the roof during this experimental period of no insulin?

All they said was to keep an eye on my levels, if they do go high, to go back to the one unit of Levemir in the morning like I’m currently on.
I’ve been told to test for ketones if I feel sick, of which I did after the phone call and the result was 0.3 whereas usually it says Lo.
I’m at a loss really, I am very anxious, stressed, possible even depressed again and it’s very difficult to see how I will be able to cope with all of this. I’m sure I’m repeating myself. I understand all of the things I’m feeling can also cause symptoms of weight loss etc so I’m glad they are doing tests in that regard but why am I not getting proper support for my diabetes, don’t they believe my diagnosis that they gave me?
I feel like I’ve been fighting my corner, only to be shut down, told I don’t need this, I don’t need that, informed that I would get certain things on prescription only to find I have to keep asking for things, such as the ketone testing strips. Even having the GAD test was a disaster, I wasn’t told this was being done and the results I was told were from LAST year. I understand there has been a global pandemic but I slipped through the cracks and was left to get on with it, none the wiser. I am very confused about everything if I’m being completely honest.

 

[LittleSunflower]

@rebrascora I did hesitate for a moment before I posted it. I was hoping my nervousness was unfounded.

@LittleSunflower I don’t get it. Checking your thyroid is fine and a good idea. I’m never quite sure about the names of the thyroid checks but I have the ‘normal’ one every year and I’ve also had the extra check(s) at least once. But I don’t get all the talk of “complex”. Forgive me if I’m repeating myself but my Type 1 presentation was deemed “atypical” yet I was still started on basal and bolus insulin. I’ve already explained how my body could eventually get my blood sugar down after a spike, but my consultant explained that spiking like that wasn’t good and also that it would exhaust my remaining islets quicker. I didn’t want that for sure!

I’m not special. Over the many years I’ve had Type 1, I’ve often read stories of unusual presentations. It’s definitely not unheard of. The way my consultant explained it was that there were different onsets of Type 1 (for reasons not known) and some people’s onsets were superfast and some slow, and some a kind of up and down erratic onset rather than a steady decline of islet destruction.

I keep saying what I’d do but I don’t know what else to say. I wouldn’t be happy with those spikes. Firstly because of the potential for damage, secondly because the environment of high blood sugar speeding up the death of the remaining islets, and thirdly because I’d be waiting for something to go wrong - a tummy upset triggering a sudden decline and ketones, a urinary infection causing very high blood sugar, etc. I’d also hate the little things that high blood sugar brings like tiredness, thirst, thrush, and generally feeling rough.

You can still complain. I’d put any complaint in writing at this stage, if you choose to complain. You could also, if you prefer, take a ‘half way’ option and get/keep your Levemir and Novorapid ready for use if you choose to. It’s your health and your body.

I used to have all of those checks with the HBA1C as they thought I had anaemia a couple of years ago and I did personally request a thyroid check due to family history but that was a year or so ago.
I would have no idea about the islet cells if you wouldn’t have taught me about it when I first posted about my journey. I am too, worried that they are going to die out pretty soon due to the lack of added insulin with meals etc. I get the feelings you mention with the high blood sugar.
I did try to get into contact with PALS in relation to the year late GAD results but apparently that is my GP’s fault so I had gone through the wrong service.
I feel like I am being told one thing and then they do another which has no relation to what they previously told me.
I’m not sure what else to say myself other than I am worn out, physically and mentally from all of this back and forth information.

 

[Inka]

@LittleSunflower It isn’t surprising you’re stressed. This has gone on for a long time. I completely get what you mean about being told one thing and then they do another. It starts to make you question yourself. It’s not your fault though. You’ve done everything right. Hold on to that thought.

Sorry if I’ve asked this before but can you see another team or go to another hospital? Could your GP write to your team on your behalf? Or even, could you pay to see someone privately? Not that you should have to, but it’s an option possibly.