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Hi, I'm a confused newly diagnosed type 1

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NannyCake

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Type 1
Hi all, I was diagnosed as a Type 2 late February this year, after going to GP about unexplained weightloss, and lots of other symptoms of what I now know, to be high blood glucose.
She pricked my finger and said "You're Diabetic" booked me onto a ward at the hospital saying if I don't go I could go into a coma and die. My BG was 31.8 mmol/L. She also said my BP was very high, not surprisingly, after receiving that news.
After being on a saline drip for 4 hours I was given metformin and Humulin I insulin, a blood testing kit and lots of literature and sent home.
I struggled for weeks to get my levels out of the 20's, having my dose increased from 12 to 22 units, but also experiencing a few hypos early morning.
I got changed to novamix 30 twice a day, but still struggled, with spikes of high 20's and Drops as low as 2.3 on occasions. It was decided that I might actually be type 1 and after waiting months for blood test results to come back, I got told on the phone last week that I tested 100% positive for type 1 on both tests.
I am still on novamix 30 until I go to my next DSN apt on 10th September, where I've been told I'll get Basal and Bolus insulins, and be shown how to Carb count and work out my own dose.
I have also had routine blood results back, saying that I have suspected thyroid disease too, my GP said that could explain the excessive tiredness and the extra weight I've put on.
To say my head is bamboozled, is an understatement.
 
Hello @NannyCake welcome to the forum. We have quite a few people who were initially diagnosed with T2 often just down to their age who were later correctly diagnosed with T1. In reality T1 can come on at any age.

I have T2 myself, the causes of T1 and T2 are different so unfortunately I can’t be of too much help, others here can though.
I am on a Basal Bolus regime and work out my own doses , I find it very flexible. Though it probably sounds scary to you atm.
Yes high blood glucose (BG) levels can make you very sleepy as can thyroid problems. Luckily both conditions can be controlled.

Feel free to ask all the questions you need to about diabetes, I am pretty sure we have people on here who have thyroid problems too.

Their is a book that is often recommended on here, don’t be put off by the title as it is suitable for all ages .
Just make sure it is the latest edition, as knowledge , treatment and tech etc is coming on in leaps and bounds
https://www.amazon.co.uk/Type-Diabe...irect=true&ref_=as_li_tl&tag=poemforactidi-21
 
Ljc said:
Hello @NannyCake welcome to the forum. We have quite a few people who were initially diagnosed with T2 often just down to their age who were later correctly diagnosed with T1. In reality T1 can come on at any age.

I have T2 myself, the causes of T1 and T2 are different so unfortunately I can’t be of too much help, others here can though.
I am on a Basal Bolus regime and work out my own doses , I find it very flexible. Though it probably sounds scary to you atm.
Yes high blood glucose (BG) levels can make you very sleepy as can thyroid problems. Luckily both conditions can be controlled.

Feel free to ask all the questions you need to about diabetes, I am pretty sure we have people on here who have thyroid problems too.

Their is a book that is often recommended on here, don’t be put off by the title as it is suitable for all ages .
Just make sure it is the latest edition, as knowledge , treatment and tech etc is coming on in leaps and bounds
https://www.amazon.co.uk/Type-Diabe...irect=true&ref_=as_li_tl&tag=poemforactidi-21
Click to expand...
Hiya@Ljc
Thank you, I have ordered that book it should arrive tomorrow.
I see what you mean about the title, I probably wouldn't have given it a second look had you not suggested it.
There's so much more to Diabetes than I initially thought. Thank god for forums like this, I have learnt quite a lot just by reading other peoples msgs and replies.
I feel like I know more than my GP already. When I asked her if my results were back, to find out if I'm type 1, (which my DSN sent me for) she told me I couldn't be type 1 because I'm too old.
 
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Hello @NannyCake welcome to the forum.🙂 You certainly are being looked after much like myself. You`ll find a Basal Bolus regime a lot easier to use as @Ljc has pointed out.

NannyCake said:
she told me I couldn't be type 1 because I'm too old.
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What a statement to make, I was diagnosed two years ago, I am now 65 years old. It can appear at any age. Keep asking questions and read as much as you can.
 
KARNAK said:
Hello @NannyCake welcome to the forum.🙂 You certainly are being looked after much like myself. You`ll find a Basal Bolus regime a lot easier to use as @Ljc has pointed out.



What a statement to make, I was diagnosed two years ago, I am now 65 years old. It can appear at any age. Keep asking questions and read as much as you can.
Click to expand...
Thank you @KARNAK, I was quite horrified when she said that. I didn't realise how little some GP's know about Diabetes.
One question I have is, how do you treat a false hypo? I know why I'm getting them occasionally, but not sure whether to try and ride it out, or have some sugar/carbs. I've been putting for the latter, but not sure if it's the right thing as it brings my BG higher thaddeus it should be. But to be honest anything under 10, I don't feel right. Will that get better, or is that normal?
 
Also, I've read that most of the complications that come with diabetes, are because of too high BG levels for too long. What do they class as too long? Mine have been too high for 6 months now.. Should I be worried?
Thanks in advance
 
Hi again @NannyCake, your false hypo`s I would wait until your appointment on the 10th and discuss it with your HCP. Its only 6 days but if you feel better around 10 at the moment keep it there, it also depends on if the 10 is before or 2hrs after food.
 
NannyCake said:
Also, I've read that most of the complications that come with diabetes, are because of too high BG levels for too long. What do they class as too long? Mine have been too high for 6 months now.. Should I be worried?
Thanks in advance
Click to expand...

If you haven`t any complications at the moment, I wouldn`t worry about it. Doesn`t mean to say complications will not develop in the future because we are all different and have to control our own big D. Don`t put everything down to Diabetes illness happens to all of us.
 
Thanks again @KARNAK
When I say I feel better at around 10, I mean 10 or higher.
And yes I'll wait, I've started writing down questions I have so that I don't forget them at the time.
Fortunately, no serious complications at the moment.
Thanks again for all your help
 
NannyCake said:
Thanks again @KARNAK
When I say I feel better at around 10, I mean 10 or higher.
And yes I'll wait, I've started writing down questions I have so that I don't forget them at the time.
Fortunately, no serious complications at the moment.
Thanks again for all your help
Click to expand...

Hi NannyCake sorry to hear about the muddle over your diagnosis, but glad that you now have a correct diagnosis. Thyroid issues are another antibody disease, as is T1, so they sometimes go together.

The book recommended is very useful and is well structured, with very clear explanations. I still look at it 12 years on, and I was diagnosed with T1 at the age of 53. I have also found that some GPs have a limited understanding if T1, but glad to say that I have found the specialist team at the hospital excellent.

As your levels start to come down from the higher levels, your body will be confused to start with. 8f you do feel hypo always test. As they work out your appropriate insulin doses your levels may be a bit wobbly. Things will be a lot easier once you are switched to the Basal/Bolus regime, as this will enable you to make adjustments depending on your carbs at each meal and also you will learn how to do correction doses. It is early days at present so try to b patient with yourself.

Your specialist team will work with you over the coming weeks, and having a list of questions ready is such a good plan. Would you be able to take someone else with you to the next appointment. I found this so helpful as there is definitely a lot to take in at the start, and I gave the other person a copy of my questions. He made notes against them and also prompted me if I forgot to ask any. This way I was able to focus on talking with the DSN, and we were able to review what was said together afterwards.

Let us know how you get on and keep the questions coming.
 
Ps
You asked about complications and I missed that.

If you haven’t got any of the long term conditions at present stop worrying.
The focus should be on managing your levels as best you can now that you have been diagnosed correctly.
I wasted a lot of energy worrying about these at the start. You have an appointment coming up and this is going to help you get started on self management. I have also learnt much of what I know from others on here. Just ask.
 
Hello @NannyCake and welcome to the forum 🙂

I was 44 when I was diagnosed - as others have said, type 1 can start at any age, and I think about 40-50% of type 1s are diagnosed as adults.

If I were you I'd have a small snack when you get a false hypo, but not treat it with fast-acting carbs the way you would a real hypo - hopefully that should stop the symptoms without sending your blood sugar up too high. It's not surprising you feel better with your blood sugar around 10 at the moment, as it's been so high for so long - you'll gradually get used to lower levels and feel better still once you do. Once you're on MDI (basal/bolus regime) it will be much easier to make adjustments to get your blood sugar into healthy levels, and very much more flexible in terms of what you can eat and when.

I don't think there is any point worrying about future complications, it won't achieve anything, and it's likely to make you stressed, which wouldn't be good for your blood sugar. The main thing is you don't have any now 🙂
 
Snip.
NannyCake said:
I feel like I know more than my GP already. When I asked her if my results were back, to find out if I'm type 1, (which my DSN sent me for) she told me I couldn't be type 1 because I'm too old.
Click to expand...
I know what you mean about feeling that you know more than your GP already. To be fair though they don’t actually get much training in diabetes, it is rather disconcerting though when you discover this. It is very different when you see the specialists, which you will soon be doing.

Two things about false hypo’s ( horrible aren’t they). 1) You now know what some of your hypo symptoms are . 2) though unpleasant they are not at all dangerous.
I used to have a small non carb snack, sometimes it helped sometimes not.

As others have already said, try not to worry about future complications. Yes your BG levels are high now but soon they will be at normal levels and now you are diagnosed they really will keep a close eye on your health,
We get regular blood tests not just to check our average glucose levels over the past 12 weeks (Hb1ac) but also our kidney and liver function , any deficiencies in our blood, eye checks, foot checks , blood pressure, a flu jab and free prescriptions but an exemption card has to be applied for as it’s not automatic.

I hope that now you have spoken to a few of us and probably read loads of posts that you are starting to feel less stressed and far mor hopeful.
 
Thank you all so much for all your help.
I've spent the last hour going over paperwork and notes from my apt yesterda , just making sure I get it right.

I have been put on Levemir twice daily and NovoRapid before meals.
Can someone tell me, is it okay to take both the morning ones at the same time? Xx
 
NannyCake said:
Thank you all so much for all your help..

I have been put on Levemir twice daily and NovoRapid before meals.
Can someone tell me, is it okay to take both the morning ones at the same time? Xx
Click to expand...
Yes, that’s fine, I do my morning levemir and my breakfast novorapid together, I do the levemir into my thigh, and the novorapid into my abdomen.
Do make sure that you’ve got different coloured pens, or you check the label on th cartridge carefully, and double check you’ve got the doses the right way round. (Yes, I have done it the wrong way round!)
 
NannyCake said:
Thank you all so much for all your help.
I've spent the last hour going over paperwork and notes from my apt yesterda , just making sure I get it right.

I have been put on Levemir twice daily and NovoRapid before meals.
Can someone tell me, is it okay to take both the morning ones at the same time? Xx
Click to expand...
I often do mine at the same time.

With T1 their is an awful lot to get your head round . If their is anything your not sure of don’t be afraid to ask, also keep in close contact with your team.
 
Robin said:
Yes, that’s fine, I do my morning levemir and my breakfast novorapid together, I do the levemir into my thigh, and the novorapid into my abdomen.
Do make sure that you’ve got different coloured pens, or you check the label on th cartridge carefully, and double check you’ve got the doses the right way round. (Yes, I have done it the wrong way round!)
Click to expand...

This is very wise advise from Robin. I’ve done it the wrong way round too.
 
For the children they made different coloured half unit pens (with stickers, sun for day time and moon for night time). I found that great as not only did it give me a clear difference between the two, the half units allowed me to make small adjustments which was good as I inly need small doses.

Having said that I did put the cartridges in the wrong way round once!! It took me a while to work out what I had done.
 
I'm glad you mentioned that.. If it works out you need an extra ½, and only have single units, do you round up or down?
 
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