Newly diagnosed with Type 1 Diabetes

S

soph_lou

Member
Relationship to Diabetes
Type 1
Pronouns
She/Her
Hi everyone, my name is Sophie, I'm 27 and have just been diagnosed with T1D.

I tested my sugar levels (using my grandads old machine) on Tuesday just to see how they were and the results were 31. I tested them again immediately after and they were 29. Around 2 hours later they went down to 27 and the morning after they dropped to 17. I seen the GP on Wednesday and they found Ketones+++ and Glucose+++ in my water sample. I did not feel ill or unwell and the only symptoms I had was being thirsty and urinating a lot (but I didn't think much of these symptoms and didn't know they were related to high sugar levels). I was told to go straight to hospital but also told not to worry and it was "just a precaution". But when I got to hospital my Ketones were 6.8 ands sugars were in the 20s. The nurses shared a concerned look but didn't explain the severity of what was going on.

I was placed on a saline drip and insulin drip and I was later told by the consultant that I had diabetic ketoacidosis (DKA) and diagnosed with T1D. But again the severity of DKA was not explained, it was only after I did some of my own reading I understood how lucky I was not to have any serious complications relating to this.

I was kept in overnight to be monitored and I was having my sugars tested every hour and bloods taken every 2 hours. I responded well to the fluids and insulin and my sugars and ketones dropped significantly. They dropped too much and needed to add glucose to my fluids but they slowly began to rise again. This was my first time staying in hospital overnight and it was a quite a rough night, I was stressed, didn't sleep much and my arms were hurting an unreal amount due to the cannulas. My sugars and ketones continued to fluctuate into the next day.

The next day I was seen by the Diabetic Nurse and was bombarded with information regarding T1D, she did try to give my small amounts of information at a time but there was so much she needed to inform me in such a short period of time, it was overwhelming. I was taught how to test my sugars and ketones and how to inject my insulin. She advised I would be put on a weeks long education course and that I would see a dietician, but I do not know when this will happen.

I was discharged Thursday evening after my sugars had dropped to 11.7 and ketones had dropped to 0.4.

I managed to hold it together in the hospital and put on a brave face. But yesterday, the first day dealing with it on my own, I struggled. My sugars continued to fluctuate and my emotions were all over the place. One minute I think I can cope with this and things will be fine. But the next I'm in tears and the reality of what has happened kicks in and I start to panic.

I still don't think it has properly sunk in yet. But I'm lucky I have a lot of support from my family and friends, and as everyone keeps saying I'm sure it will become second nature to me in time.

Sorry for the long post but I just wanted to share my story of initially finding out. It feels therapeutic almost to get everything down in writing.

I'm open to any advice anyone with T1D has to share with me and would appreciate it!

Thanks in advance 🙂
 
Welcome @soph_lou 🙂 Sorry you’ve had to join our club. Type 1 is a pain but I promise it does get easier. The first few weeks are stressful, but you gradually find your feet over the months.

What insulins are you on? Did you see a dietician in hospital so you could get some basic carb-counting advice? Carb counting is key because your fast/meal insulin dose needs to be right for the amount of carbs you’re going to eat.

It’s normal for blood sugar to go up and down (even in non-diabetics) but as a Type 1 your ups and downs will probably be bigger. The first rule is safety. Test lots and aim to avoid the extremes, particularly going too low. Perfection is impossible. That’s not your aim.

Type 1 is a big learning experience. It’s a hard job being a pancreas and it takes time to learn.
There are a couple of books often recommended for Type 1s on this forum:

Think Like a Pancreas’ by Gary Scheiner.

And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas.

Think Like A Pancreas is American but I liked the chatty style and it contains some great information, as does the Ragnar Hanas book.

This is also a good online source of learning when you’re ready:


The important things to know about Type 1 is that perfection is impossible (as I said) and that you need to become your own expert.

Do you have a Libre sensor or are you finger-pricking?
 
Welcome to the forum @soph_lou . Sorry that you have needed to join us but glad that you have found us.

IT DOES GET EASIER. It is mind boggling at the start but the best analogy I was given is that it is like learning to drive. It all seems a bit complicated and a lot to think about initially but then much of it becalmed automatic. I will repeat what @Inka said (because it is so important) . Perfection is impossible. It took me a long while to recognise that (no forum, no tech available then and knowing no other diabetics made things harder).

Test when you are concerned, even if you feel a bit like a pin cushion. You will gradually learn more about how your body feels, but at present if in doubt test. Your levels were very high at the start and your team will work with you to bring things back in range gradually. Make use of the support that they offer.

I found the Ragnar Hanas book very useful (ignore the age reference - I was 53 at diagnosis)
Questions will flood your mind. Come on here and just ask. Loads of experience to tap into and no questions are thought of as silly. I look forward to hearing more from you.
 
I was overwhelmed when I was diagnosed with type 2 in July. I had to wait for a nurse appointment in mid August and know I didn't take everything in. I am a retired lawyer so am used to assimilating information but when it's your health and long term it is difficult. This site has been brilliant. Before the nurse appointment I spoke to someone here and they sent lots of info. After I saw the nurse I joined the forum and have welcomed the help and advice and encouragement.
I think in the midst of such turmoil when you are feeling unwell it's great that you have reached out.

I cannot help or advise re type 1 but I can sympathise with the challenge of sorting everything in your 20s when there is so much else you want to be a part of.

Looks like you will now have contacts at the hospital which is good.
 
soph_lou said:
But I'm lucky I have a lot of support from my family and friends, and as everyone keeps saying I'm sure it will become second nature to me in time.
Click to expand...
It will, in time. It'll never disappear, though, so it'll always be an extra thing you need to be aware of.

Now's the best time (so far) to be diagnosed: we have lots of technology (some of which I hope you'll quickly be offered), and the insulin itself has improved vastly over the decades. As have the insulin needles: we weren't always recommended (or offered) 4mm 32G needles.
 
Inka said:
Welcome @soph_lou 🙂 Sorry you’ve had to join our club. Type 1 is a pain but I promise it does get easier. The first few weeks are stressful, but you gradually find your feet over the months.

What insulins are you on? Did you see a dietician in hospital so you could get some basic carb-counting advice? Carb counting is key because your fast/meal insulin dose needs to be right for the amount of carbs you’re going to eat.

It’s normal for blood sugar to go up and down (even in non-diabetics) but as a Type 1 your ups and downs will probably be bigger. The first rule is safety. Test lots and aim to avoid the extremes, particularly going too low. Perfection is impossible. That’s not your aim.

Type 1 is a big learning experience. It’s a hard job being a pancreas and it takes time to learn.
There are a couple of books often recommended for Type 1s on this forum:

Think Like a Pancreas’ by Gary Scheiner.

And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas.

Think Like A Pancreas is American but I liked the chatty style and it contains some great information, as does the Ragnar Hanas book.

This is also a good online source of learning when you’re ready:


The important things to know about Type 1 is that perfection is impossible (as I said) and that you need to become your own expert.

Do you have a Libre sensor or are you finger-pricking?
Click to expand...
Thank you!

I'm on NovaRapid (3 times a day) and Lantus (once a day). I didn't see the Dietician in hospital but I was told I would see one at some point. I haven't been given any carb counting advice as of yet. They said they want me to get used to taking my sugar and insulin first before educating me on carb counting.

Thank you so much for the book recommendations and online learning source. I'll definitely take a look at them. I want to read up on T1D as much as I can to get a better understanding.

I'm finger pricking at the moment. Again they told me I need to get used to doing that first before introducing any technology into the mix.
 
SB2015 said:
Welcome to the forum @soph_lou . Sorry that you have needed to join us but glad that you have found us.

IT DOES GET EASIER. It is mind boggling at the start but the best analogy I was given is that it is like learning to drive. It all seems a bit complicated and a lot to think about initially but then much of it becalmed automatic. I will repeat what @Inka said (because it is so important) . Perfection is impossible. It took me a long while to recognise that (no forum, no tech available then and knowing no other diabetics made things harder).

Test when you are concerned, even if you feel a bit like a pin cushion. You will gradually learn more about how your body feels, but at present if in doubt test. Your levels were very high at the start and your team will work with you to bring things back in range gradually. Make use of the support that they offer.

I found the Ragnar Hanas book very useful (ignore the age reference - I was 53 at diagnosis)
Questions will flood your mind. Come on here and just ask. Loads of experience to tap into and no questions are thought of as silly. I look forward to hearing more from you.
Click to expand...
It's good to know it gets easier :D

Thank you so much, I'll definitely utilise this forum when questions pop up!
 
Welcome to the forum!
 
saffron15 said:
I was overwhelmed when I was diagnosed with type 2 in July. I had to wait for a nurse appointment in mid August and know I didn't take everything in. I am a retired lawyer so am used to assimilating information but when it's your health and long term it is difficult. This site has been brilliant. Before the nurse appointment I spoke to someone here and they sent lots of info. After I saw the nurse I joined the forum and have welcomed the help and advice and encouragement.
I think in the midst of such turmoil when you are feeling unwell it's great that you have reached out.

I cannot help or advise re type 1 but I can sympathise with the challenge of sorting everything in your 20s when there is so much else you want to be a part of.

Looks like you will now have contacts at the hospital which is good.
Click to expand...
It is difficult when so much information is given to you at one time on a brand new topic, which is important to your health. I'm so glad I found this forum. It seems like a lovely community. It's good to know that so much help is offered on here!
 
Bruce Stephens said:
It will, in time. It'll never disappear, though, so it'll always be an extra thing you need to be aware of.

Now's the best time (so far) to be diagnosed: we have lots of technology (some of which I hope you'll quickly be offered), and the insulin itself has improved vastly over the decades. As have the insulin needles: we weren't always recommended (or offered) 4mm 32G needles.
Click to expand...
It's something I'm sure will become natural to me soon enough.

Yes, a lot of people have been saying its come on leaps and bounds and it isn't the same as it was 30+ years ago. So, that's a positive!
 
Hi @soph_lou and welcome to the forum!

I'm sorry you've had to join us, but do know that everyone here is super supportive as you can tell, so any questions you might have - do share, plenty of gathered experience here with a sort of 'hive mind' so someone is bound to have an answer. There is going to be a lot of info flooding your way all at once, but take it one day at a time. Have a look at our Learning Zone too, it might be helpful as the information is in chunks, rather than one long read, so it might be easier to manage. There's a lot of literature shared on the forum too, same as discussions about how to manage your diagnosis, any precautions and changes you might choose to make, advice for travel and many many other different topics. We're always here to support so any successes or rants you might want to share - feel free to do so! <3
 
Does anyone here know how to post a link to @MollyBolt post about what she wished she had known when she was diagnosed. 16th August or there abouts. I think this would be helpful TIA
 
Here @DianeD

M

Thread 'what I wish I'd known when first diagnosed as type 1 (just over two months ago)'

I am now 2 and a half months into my diagnosis of type 1 after a nasty ketoacidosis experience. There’s a bunch of stuff I wish I’d known then - stuff that I expect people were telling me and I didn’t quite hear - that I thought I might write down a few random thoughts in case useful for others. I’m conscious that some of what I say may seem nonsense to those who are months ahead of me and so please read it in the spirit in which it is meant. Also pls do correct me if you think I've got stuff wrong - I know I am still a novice in managing diabetes.

1. You’ll be inundated with people who...
  • Like
  • Love
  • Care
 
Hello and welcome @soph_lou sorry you've had to join us but glad you found us 🙂

Diagnosis is such a shock with a very steep learning curve & no chance of a gentle introduction. Your body has been struggling on with dwindling insulin supplies and it takes a while post diagnosis to get back to some sort of equilibrium. The aim at the start is to re -establish an insulin supply and gently reduce glucose levels. The results aren't going to be in range all the while to begin with but once you start to carb count and learn to adjust your own insulin doses it becomes better and you start to feel less panicked and more in control of things

Who knew what an amazing job the pancreas does unnoticed until we have to take over running our own insulin supply and all the full time juggling that entails. Take it slowly and be prepared for hypos with packets of jelly babies/glucose tablets around the place and in your pockets. As said above test whenever you don't feel right and hopefully you can soon start on a glucose sensor that gives around the clock glucose readings and direction of travel arrows. That removes a lot of the guess work and the constantly questioning if you feel ok.

Contact your diabetes nurse when needs be as they will help you a lot over the years and I've found them to be the fastest route for answers. Best Wishes
 
@Ieva DUK @Flower Thank you all for the advice and words of encouragement, I really appreciate it! I'll definitely make use of this forum for support and questions and I'll take a look at the learning zone to educate myself a bit more too 🙂

@DianeD @Inka thank you so much for suggesting/sharing the link for 'what I wish I'd known when first diagnosed as type 1' - reading this has really hit home and I resonate with a lot of the points made in that post. It's nice to see other people thinking and experiencing the same thoughts and feelings as myself!
 
I've just responded to your latest post with the 'rolls about laughing' emoji, which you might possibly think is odd, hence I thought I'd better explain it and it's because of your reaction to discovering that other people experience the same feelings as you. The fact is - we all do - and anyone who tells you they don't/didn't is a fibber* in my personal opinion - and apologies for swearing but what I actually want to say is that they're a *bloody liar!
 
Welcome to the club @soph_lou

SB2015 said:
IT DOES GET EASIER. It is mind boggling at the start but the best analogy I was given is that it is like learning to drive.
Click to expand...

That's a really good analogy I'd not heard before - I certainly agree with it as a description of how something that is very complex and overwhelming to begin with does become second nature and subconscious (most of the time at least!).
 
You must log in or register to reply here.
Back
Top