Newly Diagnosed!! It’s all a bit scary ...

[ClaudiaKiwi]

Hi everyone
I’ve just been released from hospital after an emergency admission. Scary part is I have worked in Heathcare most of my life and yet was blind to my own symptoms. I now realise what was going on and truth be told I clearly had some denial. Upon admission I had an HbA1c level of 143 and ketone reading of 8.6 ... no wonder I wasn’t feeling well !!!! I’m now on insulin twice a day and metformin twice a day. I’m really not enjoying the finger pricking but completely understand what and why. It’s all a bit overwhelming isn’t it ?! I’m really grateful for the resources on here and have done a ton of reading. My glucose levels on testing are slowly coming down - today is my lowest yet with 15.2 and my ketones to 0.4 - so yes glucose levels are no where near where they need to be but massively reduced and the specialist told me they will gradually reduce. I’m really missing my sweet cup of tea first thing but have decided to avoid sugar substitutes and get on with it. I’m a determined Kiwi feeling a bit lost though without my family back home. I am married to a lovely Londoner but this is all an education for him so do feel a little alone - another reason to be grateful for this community.

Anyways - I shall keep reading.
Thanks ! ClaudiaKiwi

 

[Mark Parrott]

Hi Claudia & welcome to the forum.🙂 That is a scarily high HbA1c result. It's unusual for a type 2 to get that high & i'm just wondering if you might actually be type 1. It is often mis diagnosed. Others will be along shortly with all the links to read.🙂

 

[ClaudiaKiwi]

Hi Claudia & welcome to the forum.🙂 That is a scarily high HbA1c result. It's unusual for a type 2 to get that high & i'm just wondering if you might actually be type 1. It is often mis diagnosed. Others will be along shortly with all the links to read.🙂

Thanks. Maybe it’s me who has got it wrong in all the craziness. It’s been a hell of a time and not one I would wish on anyone. I had blood tests at the GP week before last as I went in saying I just wasn’t right so GP said start with bloods. On the following Monday I felt worse and went back and my results had literally just come in so they checked HbA1c and were like omg and sent me straight to emergency department. Was admitted within an hour and then a barrage of tests that I assume are usual. I was seriously dehydrated and put straight onto IV saline, potassium and glucose and insulin pump. I felt hideous. Didn’t enjoy being in hospital for 4 days but grateful to be seen and treated when I was. They said I was very close to it being far more serious. I guess it’s all going to be a learning from here on in.
Quite worried about managing with work and getting my head round that as I work a crazy job and hoping I can establish a better routine. I have too I guess !

 

[Ditto]

Hello Claudia, welcome to the forum. 🙂

 

[Copepod]

Welcome to the forum @ClaudiaKiwi.
By chance, I was diagnosed with type 1 diabetes at Kaikoura, aged 30 years, over 20 years ago, while guiding on seal and dolphin swimming tours.
Can I ask your age? Because some adults are incorrectly initially diagnosed type 2 when they are actually type 1. Twice daily insulin isn't very flexible, but it may be easier to accept 2 injections per day, at least initially, rather than more flexible once daily long acting and short acting with each meal.

 

[ClaudiaKiwi]

Welcome to the forum @ClaudiaKiwi.
By chance, I was diagnosed with type 1 diabetes at Kaikoura, aged 30 years, over 20 years ago, while guiding on seal and dolphin swimming tours.
Can I ask your age? Because some adults are incorrectly initially diagnosed type 2 when they are actually type 1. Twice daily insulin isn't very flexible, but it may be easier to accept 2 injections per day, at least initially, rather than more flexible once daily long acting and short acting with each meal.

Hi - I’ve just turned 50. I’ve gone back over my discharge notes and it def says I am T1. For some stupid reason I thought I was T2. I think it’s all just been a lot to take in and so much has happened in the last 7 days.
Kaikoura is beautiful 🙂 are you a Kiwi too ?

 

[Copepod]

Hi - I’ve just turned 50. I’ve gone back over my discharge notes and it def says I am T1. For some stupid reason I thought I was T2. I think it’s all just been a lot to take in and so much has happened in the last 7 days.
Kaikoura is beautiful 🙂 are you a Kiwi too ?

Sadly not a Kiwi. I was intending to emigrate, but diagnosis meant end of my ecotourism career as it stopped chance for professional SCUBA diving and minibus driving and made BSc Marine Biology far less useful, so I couldn't renew work permit. So had to return to UK and try to find new opportunities. Kaikoura isn't looking so good, nor doing well commercially since earthquake about a year ago.

 

[ClaudiaKiwi]

Kaikoura took a hammering. Really sad. A harsh reality of NZ tho sorry your circumstances changed. Life sure throws us some curve balls doesn’t it !!
Can I ask your thoughts / advice ? As I’m a week diagnosed I can’t seem to get my blood glucose readings less than 15. Specialist did say they would come down slowly but I’m a bit concerned I guess. I’m eating carefully and sensibly and have kept carbs to a bare minimum but I’m just concerned that my levels haven’t gone lower than the 15. Is this the norm for the beginning of the journey ?
Feels like a long road ahead but one I really want to master navigate well.

 

[trophywench]

Claudia

Hi! Can I firstly ask you please to click on your own forum 'Profile' - and change it to Type 1 ! LOL

I reckon they've probably put you on such a cautious regime for the simple reason it's actually worse long term, to 'suddenly' reduce someone's BG from life threatening levels to 'normal' and far better to take it more slowly. I sincerely hope that follow up appointments have also been arranged at fairly frequent intervals to begin with?

 

[Greyhound Gal]

Hi Claudia and welcome to the gang🙂.

 

[scousebird]

Hello Claudia 🙂

 

[Copepod]

Kaikoura took a hammering. Really sad. A harsh reality of NZ tho sorry your circumstances changed. Life sure throws us some curve balls doesn’t it !!
Can I ask your thoughts / advice ? As I’m a week diagnosed I can’t seem to get my blood glucose readings less than 15. Specialist did say they would come down slowly but I’m a bit concerned I guess. I’m eating carefully and sensibly and have kept carbs to a bare minimum but I’m just concerned that my levels haven’t gone lower than the 15. Is this the norm for the beginning of the journey ?
Feels like a long road ahead but one I really want to master navigate well.

It's better to reduce blood glucose levels gradually to lessen chance of damage to blood vessels and experiencing false hypoglycaemia (feeling hypo when levels are below what you got used to).
So, your levels are OK for now. Do you have future appointments or phone calls scheduled to review your doses?

 

[New-journey]

Hi Claudia
Welcome to the forum and it must be a huge shock for you right now. There is so much to take in and learn plus the fear and worry of being so ill. Also must be hard for you being so far from your family. I am only two years post diagnose so remember the early weeks very well. As others have said it is best to lower your sugars slowly and they will come down.
Do ask anything here, or moan if you like, you will receive loads of support and help.
Jo

 

[ClaudiaKiwi]

Claudia

Hi! Can I firstly ask you please to click on your own forum 'Profile' - and change it to Type 1 ! LOL

I reckon they've probably put you on such a cautious regime for the simple reason it's actually worse long term, to 'suddenly' reduce someone's BG from life threatening levels to 'normal' and far better to take it more slowly. I sincerely hope that follow up appointments have also been arranged at fairly frequent intervals to begin with?

Hi 🙂
Thank you for letting me know to change my profile - I have done so now. I didn’t even realise I had done that !! I’m such an egg.
I have my first follow up today so let’s see what happens. I’m quite nervous truth be told ....

 

[ClaudiaKiwi]

Hi Claudia
Welcome to the forum and it must be a huge shock for you right now. There is so much to take in and learn plus the fear and worry of being so ill. Also must be hard for you being so far from your family. I am only two years post diagnose so remember the early weeks very well. As others have said it is best to lower your sugars slowly and they will come down.
Do ask anything here, or moan if you like, you will receive loads of support and help.
Jo

Thank you so so much for the support and reassurance. It really does make it so much better knowing there is a place I can seek support and hopefully also offer it at some point too! I am so glad there are forums like this as learning and getting my head around this is all so daunting. I gather it’s normal to feel overwhelmed in the early days so I don’t feel quite so silly for feeling the way I do ...

 

[New-journey]

Thank you so so much for the support and reassurance. It really does make it so much better knowing there is a place I can seek support and hopefully also offer it at some point too! I am so glad there are forums like this as learning and getting my head around this is all so daunting. I gather it’s normal to feel overwhelmed in the early days so I don’t feel quite so silly for feeling the way I do ...

There is nothing silly about it, so understandable to feel overwhelmed and a whole range of roller coaster emotions! You are doing well to have found this forum and be able to write so clearly. I was too scared to even read posts on this forum!

 

[ClaudiaKiwi]

There is nothing silly about it, so understandable to feel overwhelmed and a whole range of roller coaster emotions! You are doing well to have found this forum and be able to write so clearly. I was too scared to even read posts on this forum!

Thank you for such supportive words ! I’m just back from my post discharge check up and have had both insulin and metformin increased but they are happy so far so that adds some reassurance. I can’t get over how awesome this forum is 🙂

 

[trophywench]

Thank you for such supportive words ! I’m just back from my post discharge check up and have had both insulin and metformin increased but they are happy so far so that adds some reassurance. I can’t get over how awesome this forum is 🙂

Just so you know Claudia - no such thing as a silly question, on here! LOL

 

[TheClockworkDodo]

Hello Claudia, and welcome 🙂

I was in my 40s when I was diagnosed - a lot of type 1s here were diagnosed as adults, but people often assume that anyone diagnosed as an adult is type 2, so I'm glad your notes are clear about you being type 1.

It's early days yet, and as Jenny says they are probably taking it slowly and steadily to begin with so your levels don't plummet too rapidly, but in the longer term I hope they will put you on MDI (multiple daily injections) instead of the much less flexible 2 injections a day, and also take you off the Metformin. With MDI you'll be able to manage your diabetes much better and it will fit in better with your job, as it will enable you to eat what you like when you like rather than eating to fit in with your insulin.

 

[trophywench]

Err, there are other reasons for some Type 1s also need Metformin long term as well as insulin, even pump users - if something makes them be insulin resistant.

We haven't known Claudia anywhere long enough to even make educated guesses about that, so I deliberately haven't!