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Diabetes Specialist Nurse - Type 1 upgrade

sudsandsoda

Active Member
Messages
44
Location
London
Type of diabetes
Type 1
Treatment type
Insulin
Hi all,

As I kind of expected all along, my initial Type 2 diagnosis has been changed to Type 1 by the diabetes specialist nurse at the hospital. She was amazing, and very apologetic about how I've been treated by A&E and my GP who both suggested type two and gave me no useful advice.

They are still awaiting a few blood test results, but she said they're more just for interest. My case is very obvious apparently, which is why she is so disappointed with my primary care 5 weeks ago. She said I should have been given an emergency insulin supply straight away, not just brushed off with metformin.

Never mind, I now have her direct email address and phone number which is amazing!

My fridge is now stocked up with NovoRapid and Lantus Solostar which I start tomorrow. Also have new BG & blood keynote meters as well as several books, dextrose tablets etc. It's such a relief having some proper care from a specialist.

The low carb diet I've been on since diagnosis made good improvements to my BG levels, but I was starting to find it really tough and didn't feel it was sustainable life long. The team agreed with this and the nurse, doctor and dietician suggested it's not the solution and isn't advisable for me long term. So I'm going to be easing the carbs back in slowly now I have the insulin to help.

Anyway, that's my story so far!

Hope everyone else is OK.

Jx
 
I'm so glad you have your correct diagnosis, and have started along your treatment path.

There are a good few type 1's here, so don't hesitate to ask for help and advice, and have a good look round the T1 forum. One thing you might like to ask your very helpful nurse about is carb counting, and the possibility of a place on a DAFNE course (dose adjustment for normal eating) so that you can learn how to adjust your bolus - fast acting - insulin to fit the carbs that you eat.

T1 doesn't have to involve low carb, although some find it helpful. Some don't, and do very well adjusting insulin to fit their carbs so that they can eat anything they want.

I'm going to leave it to some of the members who are more experienced in explanations than I am - I know how to handle my diabetes but I'm not great at advising others.

I just wanted you to feel welcomed
 

Thanks very much. I have another appointment with my nurse next week - we briefly spoke about dose adjustment, but I think she didn't want to overload me with information. I'd already been in the hospital for about three hours . I'll ask about DAFNE if it doesn't come up!
 
Resurgam said:
I find the low carb diet very sustaining - but I am type two and lucky as well - and with the insulin you now have you can eat far more carbs, safely, so with any luck you'll be reaping the benefits of your correct diagnosis in the very near future
Click to expand...

Absolutely, I actually found the low carb diet quite good for me. I added a load of new healthy recipes to my collection! I'm vegetarian too, and my problem was eating enough to keep the calories up and not keep loosing so much weight. I was always hungry and struggled with keeping away from ketosis. Today I got to have a bread roll for my c-peptide test - it made my BS raise by 10mmol
 
Thanks for the tag @WuTwo. You do yourself a disservice about your ability to help ... Ditzy is always there to help out

@sudsandsoda as you say, there is a lot to take on board when you find out you have type 1. My diagnosis was 15 years ago but I still remember the brain overload.
The other thing I remember very clearly was the comment from my DSN "Diabetes should not stop you doing what you want". I have pushed that over the years and, although a few things take a little more preparation, in my experience, she was right.

I have never followed a low carb diet and maintained good Hb1AC (at the level I have been told not to go any lower!) but I understand why some people with type 1 choose to do so to minimise the risk of making dosing mistakes. The motivation for someone with type 1 adopting a low carb diet is usually different to that for someone with type 2. Although it is possible for someone with type 1 to experience insulin resistance I don't believe that possibility is any greater than for someone without diabetes.
Anyway, over time, you will decide what is best for you.

I won't bombard you with more information. Just say "welcome" and "ask any questions".
 

Thank you @WuTwo

Hello, welcome aboard this exclusive ship. I am sorry about your struggles and rough journey I wasn't diagnosed straight away either at that time, doctors just sent me on my way with antibiotics. but you can say DKA wasn't nice. With time you'll learn the ropes of carb counting and dose adjustment As you said ease back into eating carbs, but I'm assuming you have a fixed doses of insulin at the moment, so you might go a bit high and sometimes go low, but keep testing.
 
@sudsandsoda - that's great - welcome! I know cheese can be a toughie! My husband is mostly vegan, but still wants cheese and occasionally - but very infrequently now - wants a burger or something. Since I started making seitan steaks and burgers he's almost stopped with the meat. He's T2 but in remission now.
 

Thank you! Yes I start on a fixed dose of Lantus tomorrow morning, and if that doesn't control me enough on my next carb intake I am to introduce the NovoRapid, for which I've been given a dose range I can take depending on portion size. Quite low doses to start with. 2-4 on the NovoRapid.
 
I hope it all goes well for you, again please don't be afraid to ask us anything.
 

Love seitan! I was transitioning to a 100% vegan diet, but the diagnosis made me keep the cheese in a little longer to help with the low carb diet. I still buy vegan as much as possible, the only other exception currently would be if I'm taken to a restaurant with no / bad vegan options when I might downgrade to vegetarian.
 
Low doses are normal for when you're newly diagnosed. They kind of give you time to get used to the whole idea and to get used to injecting and testing. Keep a log of readings, and of what you eat that produces those readings;

The DSN will want to speak to you at regular intervals so she can get an idea of how things are going and what's happening with your bloods.
 

Great thanks, yeah seeing the DSN nurse quite regularly. Also had a few emails back and forward already which has been amazing. Feel like I've finally been introduced to the A-Team

The main thing that's shocked me today is that how the one small bread roll I ate (low carb filling), sent me from 5.5 to 14.9. I dread to think what my BS was like when I'd have three slices of toast for breakfast, sometimes with jam then a sandwich a few hours later for lunch - my blood must have been like treacle after the odd treat office donut
 
Hi,
I wanted to welcome you to the forum.
Take care
 

It may not have been that bad. Remember, T1s don't have a problem with processing carbs, they have a problem with producing the insulin to process those carbs. So you would have been fine before your insulin producing cells started to go.... While many T1s do go low carb (because they find it easier if they are taking less insulin) there are also plenty who just inject for what they are eating. Yes, you'll have to learn to carb count, but in the long run it can be argued that you have more dietary freedom than a T2....

And welcome to the forums from yet another T1.
 
I am a vegan and type 1 and not a low carber. I was misdiagnosed at first too.

At the beginning you are likely making some insulin so they will start you out low to play it safe. I was first put on Lantus and that worked for a couple of years before it wasn't enough for me. But I am a LADA, so that can be a lot longer transition. Some type 1's it is only a matter of weeks. But it depends on how long your "honeymoon phase" is. The period when you are still making insulin until you're not.

But that will end up meaning you need insulin for every carb you eat. Even a bowl full of broccoli. So bread can have pretty high carbs, I eat whole wheat bread just fine with a bolus accounting for the carbs. Prebolusing for me helps me stay at an even level and no drastic rises.
 
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