Hi newly diagnosed Type 1

[cymru76]

Hi everyone

I was diagnosed end of October 2015 with type 2 now I've recently been diagnosed with type 1 when they thought I was type 2.

In the process of awaiting for the appointment for the nurses to show me how to inject.

How long does it usually take for a referral?

Also any hints and tips would be greatly appreciated as got my head around being type 2, now I'm learning about type 1

Thanks

 

[SB2015]

Hi Leanne if you are Type 1 you need insulin straight away so it should be an immediate provision. Your body has stopped making it by destroying the cells that make the insulin. Without insulin your blood glucose levels are just going to go on rising. If you are feeling unwell over the weekend I would recommend a visit to A & E.

 

[trophywench]

Dunno Leanne - would think it would be VERY quick though - since if you truly are T1 - your actual LIFE will depend on having insulin injections!! - so you are probably more a LADA - which is a sort of slower- onset T1 so initially you respond to T2 medications, but gradually you don't, and need injected insulin.

I mean eventually when your body just can't produce sufficient insulin to do anything useful - THEN like the rest of us your life will depend on it but at the mo - it isn't as desperate. It should still be VERY soon though.

You will manage OK - because you HAVE to, right? It is quite complicated so it's better really to get started with the basic info from the nurse - and then bombard us with questions, cos you'll have millions - and we'll try to answer every one - between us here we have well over a thousand years experience of dealing with it - so we're collectively a VERY good place to get answers.

I'd ring on Tuesday/Weds if you've heard nothing by then - and keep ringing until it's sorted.

Good luck - and please let us know as soon as you have the necessary.

Meanwhile - order this book. It is good info for Type 1s of any age - so don't be put off by the title - Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas. And get reading!

 

[Northerner]

Hi everyone

I was diagnosed end of October 2015 with type 2 now I've recently been diagnosed with type 1 when they thought I was type 2.

In the process of awaiting for the appointment for the nurses to show me how to inject.

How long does it usually take for a referral?

Also any hints and tips would be greatly appreciated as got my head around being type 2, now I'm learning about type 1

Thanks

Hi cymru76, wlecome to the forum 🙂 It's good that they have spotted that you have been misdiagnosed, for some people it can take a very long time and a whole raft of failed medication regimes when their GP refuses to accept that you might be Type 1. As mentioned, it's likely that you are LADA (Latent Autoimmune Diabetes in Adulthood), which is a slow-onset Type 1 where your insulin production declines rapidly, but not as quickly as in children. Some people can actually manage for a couple of years on oral medication, but it varies enormously. Hopefully your referral will come through very soon, if not then do pester them for a date. What are your blood sugar levels like at the moment? Are you on any medication whilst waiting for the insulin?

If possible, ask to be put on a basal/bolus insulin regime. This is a regime which involves one or two injections of a long-acting isnulin (the 'basal' insulin, which covers the glucose constantly trickled out by your liver to keep your heart, brain, lugs, digestive system etc. supplied with energy 24/7), and a quick-acting insulin (the 'bolus', which is used to cover the carbohydrate in any food you eat or drink). The latest NICE recommendations are for Levemir (basal) and Novorapid (bolus), so if you are offered different insulin, ask them to explain why they are not following guidelines. Some people are started on mixed insulin regimes, but these can be much more inflexible when it comes to the timing of your meals, and what you can eat.

Don't be put off by the word 'injection' - the needles are teeny-tiny and don't hurt, they only need to deposit the insulin just below the skin.

There's a lot to learn, but there are lots of very experienced people here, so any questions you may have, there will be an answer for you 🙂 Do get the book Type 1 Diabetes in Children Adolescents by Ragnar Hanas, it is excellent, and relevant whatever your age (I was 49 when diagnosed!) 🙂

Good luck, please let us know how you get on! 🙂

 

[Robin]

Hi Cymru and welcome to the forum. I'm like you, misdiagnosed as Type 2 and then rediagnosed type 1. I think adults tend to develop Type 1 more slowly, which is why it's often misdiagnosed. My hospital didnt use the term LADA, it just referred to all sorts of type 1 as 'Auto immune diabetes' so don't be surprised if your medical team aren't familiar with the term. Once they'd decided I was type 1 I got an appointment with a nurse within a week, I think, to put me on to basal/Bolus, and I had by that time been using Lantus as a basal insulin when it had become obvious that tablets alone weren't doing anything. It depends on what your blood sugar levels are doing. If they get higher than you're comfortable with, press for an early appointment, and if they are worryingly high, go to A and E.

 

[cymru76]

Thank you so much for the advice. I've received a letter from my GP to go and see them regarding the referral on Wednesday 23rd thankfully so I'm sure she will put my mind at ease.

Thanks everyone for the advice and welcoming me to the forum

 

[Matt Cycle]

Hello and welcome to the forum. 🙂

 

[HOBIE]

Welcome & good luck finding out what type you are 🙂