Diagnosed T1 yesterday; high readings

[pawprint91]

Hello,

I was diagnosed as a T1 diabetic yesterday afternoon. Had a fair amount of weight loss, thirst, urination etc, that led me to the drs for a blood test. Apparently my hba1c (I think that's right) was 158. Got referred straight to diabetes team by drs yesterday afternoon. After a crash course with blood sugar monitors and injecting, I was sent home with it all. I have woken up feeling a bit overwhemed today with so much to take in and think about.

I have been started off on background insulin twice a day and told to eat 'normally' for now. Before my first dose last night, my blood sugar was 31 😱 (2 hours after evening meal of 2 chicken salad wraps). I felt okay health wise but was pretty concerned. This morning reading was 15. I have a call today with my diabetes team so hopefully they might be able to help with this. However, struggling to eat 'normally'(obviously knocked things like chocolate etc on the head for now) knowing that my readings are so high! Just wondering if anybody else has experience of this early on in their diagnosis?

Have been lurking on these forums this morning and last night - thank you so much to everyone for showing me how okay it is going to be in the end!

 

[Bruce Stephens]

I felt okay health wise but was pretty concerned.

It's safer (short term) to be somewhat high than low, and there are apparently separate risks (separate from the risk of going too low) from lowering blood glucose too quickly. And 15 in the morning isn't too bad.

obviously knocked things like chocolate etc on the head for now

Well, skip the Mars bars and things, sure, but if you like chocolate there's no reason you can't have small quantities without worrying too much.

 

[pawprint91]

It's safer (short term) to be somewhat high than low, and there are apparently separate risks (separate from the risk of going too low) from lowering blood glucose too quickly. And 15 in the morning isn't too bad.

Well, skip the Mars bars and things, sure, but if you like chocolate there's no reason you can't have small quantities without worrying too much.

This is reassuring - thank you. Particularly with knowing that 15 is actually not awful! 🙂

 

[Bruce Stephens]

Particularly with knowing that 15 is actually not awful!

As you've probably gathered, the goal is to stay 4-10 most of the time, but I'm sure many of us get to 15 now and again (but briefly, we hope). I did yesterday just before eating my evening meal. (Actually it looks like that happens quite often so I'll need to try and address that.)

 

[pawprint91]

As you've probably gathered, the goal is to stay 4-10 most of the time, but I'm sure many of us get to 15 now and again (but briefly, we hope). I did yesterday just before eating my evening meal. (Actually it looks like that happens quite often so I'll need to try and address that.)

I think I am so concerned as 15 is my lowest reading - but this time yesterday I hadn't had an official diagnosis (!) so need to keep reminding myself there is no quick 'fix' and the background insulin needs sometime to start working in my system etc.

 

[Rob Oldfield]

I think I am so concerned as 15 is my lowest reading - but this time yesterday I hadn't had an official diagnosis (!) so need to keep reminding myself there is no quick 'fix' and the background insulin needs sometime to start working in my system etc.

You're quite right. It'll take a bit of time to get your levels down and, as Bruce said, they won't want to lower them too quickly. Over time things will calm down but ALL of us have periods where our levels just refuse to play nicely. It's one of the things about diabetes that, sadly, we just need to get along with. I'd be interested to hear how your meeting with the diabetes team goes later. Is that the team from your GPs?

 

[pawprint91]

You're quite right. It'll take a bit of time to get your levels down and, as Bruce said, they won't want to lower them too quickly. Over time things will calm down but ALL of us have periods where our levels just refuse to play nicely. It's one of the things about diabetes that, sadly, we just need to get along with. I'd be interested to hear how your meeting with the diabetes team goes later. Is that the team from your GPs?

Thank you. From what they said in the initial consultation type phone call, I suspect novorapid might be coming into play quicker than expected. It's the team from the hospital - I shall report back!

 

[trophywench]

Hiya - welcome to the Club no-one ever wanted to join!

Background insulin twice a day - sounds like Levemir to me - is it? Those of us that are fans of it (I'm one) have always said it's brill cos you can see what it's doing for you pdq (I reckon, within 12 ish hours) However - it takes a couple of days to see fully what it does - I mean it's OK dropping by 16 when you start at 31 - but you wouldn't exactly want it to do that when you start at 15 !!! 😱 now, would you? 🙄

It won't though - it'll even itself out and you'll gradually see what happens ..... so no panic right at the moment please.

Plus at the mo it's more than likely your own insulin hasn't completely ceased and it does usually take time for all of it to grind to a halt. Trouble is nobody can say what it will do or when it will decide to do it, just yet.

My first jab I felt like my whole body was just waking up, most peculiar.

Anyway - gradually you'll get yourself sorted out and be able to resume life as you previously knew it properly, so good luck and keep us posted please.

 

[pawprint91]

Hiya - welcome to the Club no-one ever wanted to join!

Background insulin twice a day - sounds like Levemir to me - is it? Those of us that are fans of it (I'm one) have always said it's brill cos you can see what it's doing for you pdq (I reckon, within 12 ish hours) However - it takes a couple of days to see fully what it does - I mean it's OK dropping by 16 when you start at 31 - but you wouldn't exactly want it to do that when you start at 15 !!! 😱 now, would you? 🙄

It won't though - it'll even itself out and you'll gradually see what happens ..... so no panic right at the moment please.

Plus at the mo it's more than likely your own insulin hasn't completely ceased and it does usually take time for all of it to grind to a halt. Trouble is nobody can say what it will do or when it will decide to do it, just yet.

My first jab I felt like my whole body was just waking up, most peculiar.

Anyway - gradually you'll get yourself sorted out and be able to resume life as you previously knew it properly, so good luck and keep us posted please.

Thank you for your lovely and reassuring message. Yes it is Levemir! My pre-lunch reading was only (!) 17, which after a breakfast and a snack for elevenses I was really happy with for now. Taking it one blood sugar reading/injection at a time right now!

 

[trophywench]

You could spend some money on yourself and invest in a really good book about Type 1 Diabetes - despite the actual title, it's very informative and helpful for T1 people of all ages - I hardly fall into the categories in the title (being a great grandma but not quite as old as the Queen!) and is often used by the personnel at 'my' hospital D clinic to help explain things to all & sundry!

Type 1 Diabetes in Children, Adolescents and Young Adults Seventh Edition: Amazon.co.uk: Ragnar Hanas: 9781859597989: Books

Buy Type 1 Diabetes in Children, Adolescents and Young Adults Seventh Edition Seventh by Ragnar Hanas (ISBN: 9781859597989) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

www.amazon.co.uk

Don't be tempted by apparently cheaper books which are older versions than the 7th edition, since there's no point in relying on out of date advice.

There's also 'Think Like a Pancreas' by Gary Scheiner (which has also been revised since I bought mine!)

Both written in English (USA English for the Gary one) rather than Medicalese.

 

[pawprint91]

Thank you, I will certainly have a look into those.

 

[Inka]

Thank you. From what they said in the initial consultation type phone call, I suspect novorapid might be coming into play quicker than expected. It's the team from the hospital - I shall report back!

That’s good news! The Novorapid will help enormously. I was started on both insulins as soon as I was taken off the drip in hospital. Type 1s need a background insulin and also a bolus/fast/meal insulin. Once you’re sorted, you’ll be able to eat a pretty normal diet within reason. The main thing is you’ll now have to think lots more whereas before you could eat and not really think.

Pace yourself. It takes a while to get used to, but it will gradually get easier.

 

[pawprint91]

My first jab I felt like my whole body was just waking up, most peculiar.

I don't know whether it is pyschological or not, but last night and this morning I have almost felt born again? Feel more 'me' and happier than I have done in months! Not sure if it's due to feeling more positive following my conversation with the nurse or because my body finally has the insulin it needs (or because the sun is out) or a mix of all 3, but I genuinely feel so much better (and I didn't have to get up to pee in the night for the first time in ages!! Sorry if this is TMI ).

 

[pawprint91]

Good morning everyone!

Feeling so much happier today. Evening reading was 22 as opposed to 31, and morning reading was 11. Had a really positive conversation with my diabetic nurse yesterday afternoon. She's not starting me on novorapid immediately, but has increased my basal insulin from 8 to 9 am and pm. She has told me to begin to learn to 'carb count' - but just to get a feel to see what my blood sugar does when I eat certain foods, don't need to inject Novorapid just yet unless blood sugar remains high. She has told me to be sensible, but eat fairly normally, which is positive to hear. She has said if my blood sugar is still getting readings consistently over 14 to begin using 2 units of novorapid before meals from the weekend, and the following week if it is consistently over 12 to increase that to 3 units. (She's given me 2 weeks worth of advice as she's on holiday next week). Only thing I have a query about with this that you may be able to help me with is should I be increasing how often I check my blood sugar as I begin to record how the different carbs affect me? I was originally told to check it 4 times a day before meals - will I see a difference in blood sugar by lunch that relates to what I ate for breakfast as well as if I have a mid morning snack?

Thank you to everybody who replied yesterday, as I have said in my reply to @trophywench above - I feel like a new person today! Whether that's because I can now see a way forward and yesterday I just felt a bit scared and confused (don't get me wrong, that feeling has not completely gone away!), or because my body finally has the insulin it's been looking for for the past few months, I don't know. But I am feeling more positive today! 🙂

 

[Rob Oldfield]

I don't know whether it is pyschological or not, but last night and this morning I have almost felt born again? Feel more 'me' and happier than I have done in months! Not sure if it's due to feeling more positive following my conversation with the nurse or because my body finally has the insulin it needs (or because the sun is out) or a mix of all 3, but I genuinely feel so much better (and I didn't have to get up to pee in the night for the first time in ages!! Sorry if this is TMI ).

Excellent news! Glad to see it's been so positive for you. I remember before I was diagnosed I also didn't get a full night's sleep for months and the weariness just kind of crept up. Dozing off in the office was one of the things that led me to the Dr and diagnosis many years ago.

 

[Rob Oldfield]

Good morning everyone!

Feeling so much happier today. Evening reading was 22 as opposed to 31, and morning reading was 11. Had a really positive conversation with my diabetic nurse yesterday afternoon. She's not starting me on novorapid immediately, but has increased my basal insulin from 8 to 9 am and pm. She has told me to begin to learn to 'carb count' - but just to get a feel to see what my blood sugar does when I eat certain foods, don't need to inject Novorapid just yet unless blood sugar remains high. She has told me to be sensible, but eat fairly normally, which is positive to hear. She has said if my blood sugar is still getting readings consistently over 14 to begin using 2 units of novorapid before meals from the weekend, and the following week if it is consistently over 12 to increase that to 3 units. (She's given me 2 weeks worth of advice as she's on holiday next week). Only thing I have a query about with this that you may be able to help me with is should I be increasing how often I check my blood sugar as I begin to record how the different carbs affect me? I was originally told to check it 4 times a day before meals - will I see a difference in blood sugar by lunch that relates to what I ate for breakfast as well as if I have a mid morning snack?

Thank you to everybody who replied yesterday, as I have said in my reply to @trophywench above - I feel like a new person today! Whether that's because I can now see a way forward and yesterday I just felt a bit scared and confused (don't get me wrong, that feeling has not completely gone away!), or because my body finally has the insulin it's been looking for for the past few months, I don't know. But I am feeling more positive today! 🙂

On post meal testing I believe the standard advice is to test two hours later. There are exceptions but that, as a generality, should have given both the carb in the meal and any Novorapid taken time to take effect. Note that the time to kick in differs for different insulins but Novorapid is supposed to start having an effect after 10 or 20 minutes.

Has any more organised training on how to carb count been mentioned? Many places run schemes such as DAFNE (dose adjustment for normal eating).

Other questions are whether you're going to be put on the lists to be given an insulin pump and any form of continuous glucose monitoring? Both of those are where T1 technology is heading.

 

[pawprint91]

On post meal testing I believe the standard advice is to test two hours later. There are exceptions but that, as a generality, should have given both the carb in the meal and any Novorapid taken time to take effect. Note that the time to kick in differs for different insulins but Novorapid is supposed to start having an effect after 10 or 20 minutes.

Has any more organised training on how to carb count been mentioned? Many places run schemes such as DAFNE (dose adjustment for normal eating).

Other questions are whether you're going to be put on the lists to be given an insulin pump and any form of continuous glucose monitoring? Both of those are where T1 technology is heading.

Thank you for the advice 🙂

Nurse told me to download a few apps and use these to begin to learn/recognise carbs that are in the foods I would normally eat at home - only had a look this morning but bloody hell, I can't believe how many carbs are in some things. Obviously you wouldn't be going mad with eating carbs, but is there a limit a diabetic can have in a day? However, no novorapid in relation to this yet, only 2/3 units if readings remain high. I didn't write this part down, but I'm sure she said in the end when I'm confidnt with carb counting etc 1 unit of insulin (novorapid) is needed for every 10g of carbs? Have I made this up? I wouldn't be surprised if it differs from person to person. She has also booked me on a course at the hospital in August, I didn't catch the name but it could well be the one you have mentioned!

No mention of an insulin pump yet, but she did say I would be able to get a Freestyle Libre device - she said due to me being a teacher it will be invaluable to me in terms of checking blood sugars etc and not stressing when teaching.

 

[Robin]

Thank you for the advice 🙂

Nurse told me to download a few apps and use these to begin to learn/recognise carbs that are in the foods I would normally eat at home - only had a look this morning but bloody hell, I can't believe how many carbs are in some things. Obviously you wouldn't be going mad with eating carbs, but is there a limit a diabetic can have in a day? However, no novorapid in relation to this yet, only 2/3 units if readings remain high. I didn't write this part down, but I'm sure she said in the end when I'm confidnt with carb counting etc 1 unit of insulin (novorapid) is needed for every 10g of carbs? Have I made this up? I wouldn't be surprised if it differs from person to person. She has also booked me on a course at the hospital in August, I didn't catch the name but it could well be the one you have mentioned!

No mention of an insulin pump yet, but she did say I would be able to get a Freestyle Libre device - she said due to me being a teacher it will be invaluable to me in terms of checking blood sugars etc and not stressing when teaching.

There’s no limit to the number of carbs you can have, once you’re matching your insulin doses. However, many of us find it's easier to have a well balanced meal, with a mix of fats and proteins with the carb, because it best matches the action of the insulin.
A ratio of 1 unit insulin to 10 carbs is what most people are started off with, and it’s a good starting place. Mine is basically that, but I need more at breakfast, some people find they need different ratios at different times of day, depending when they exercise etc. You’ll find out what suits you once you get going.
Hopefully you’ll get a Libre fairly soon, it’s certainly been a game changer for me. Most people have to wait to be considered for a pump. If you’re doing well with injections, you won’t be offered one, as they are a scarce resource and are given to people most in need if they are struggling to maintain levels with injections. Also, a pump or any of its component parts, (like the cannula that inserts under the skin) can fail, and you need to have injecting down to an automatic process and know what you’re doing, in case you have to revert back to it in a crisis.

 

[trophywench]

Testing before each meal is the first step, assuming you have 3 meals a day, with 5 'ish' hours between those meals.

The '2hrs after' mantra for Type 2 diabetes not using insulin does NOT apply to you and me. It is not 200% essential to avoid post meal rises because fast acting insulin does not 'just stop' working after 2 hours - in fact by now in my relationship with it (24 years) it's 'ramping up' for the first 45mins-1 hour then consistently effective for the next 2 hours, then slides downwards fairly gradually for the next hour -ish. I reckon approx 4.5 hrs in total. It kicks in pdq for me so if I was out for a meal and jabbed it all in before my starter, which deliberately wasn't carby, say prawn cocktail, because I had ordered fish and chips for my main which was carby (ie the batter and the spuds) - I'd be hypo before my main arrived and have to start drinking someone's fullfat coke ..... DO be careful!

And for 20 -odd years people on forums have been saying 'Novo-not so-rapid' to me. (Well how bloomin quick do you want it? ) I'm not going to guess how quick it will kick in for you - just saying, is all!

To begin with, you're trying to get your basal insulin dose as near 'right' as you can. Please do start studying the carb content of whatever you eat as soon as possible, cos it's something we all absolutely do have to do. Start getting used to what X amount of Y food, looks like in your real life - aaah, so if I use one of these dishes to have my breakfast cereal in, and put up to this line of cornflakes, then add milk up to that line, It will be Z grams of carb. If I use this serving spoon for mash, 2 spoons of it will be ~grams.

It's OK saying 'an egg sized spud = 10g' but as I commented in 1972, they haven't told me though, who laid that egg - a wren, a hen or an ostrich? Aaaarrgghh.

You'll get there!

 

[pawprint91]

There’s no limit to the number of carbs you can have, once you’re matching your insulin doses. However, many of us find it's easier to have a well balanced meal, with a mix of fats and proteins with the carb, because it best matches the action of the insulin.
A ratio of 1 unit insulin to 10 carbs is what most people are started off with, and it’s a good starting place. Mine is basically that, but I need more at breakfast, some people find they need different ratios at different times of day, depending when they exercise etc. You’ll find out what suits you once you get going.
Hopefully you’ll get a Libre fairly soon, it’s certainly been a game changer for me. Most people have to wait to be considered for a pump. If you’re doing well with injections, you won’t be offered one, as they are a scarce resource and are given to people most in need if they are struggling to maintain levels with injections. Also, a pump or any of its component parts, (like the cannula that inserts under the skin) can fail, and you need to have injecting down to an automatic process and know what you’re doing, in case you have to revert back to it in a crisis.

Thank you. I'm not sure how I feel about insulin pumps; I think I'd be happier sticking to injections to be honest! Sorry if this is a silly question, but does it hurt to put your libre on, and does it ever get knocked about?