Type 1. New diagnosis. Advice.

[RichardSp8]

Hi everyone,
I was diagnosed 4 days ago with type 1.
I am jumping into learning, reading, researching and really getting my head around everything. ( it’s how I deal with stressful/unexpected/shocking situations) I’ve just started carb cou ting today after a visit to my dietician and diabetes nurse.
(1 unit of Humalog per 10g of carbs to begin with)
Then 12units of my Abasaglar on an evening.
My main concern isn’t the eating or the carb counting or watching what I’m eating. I used to be a chef and have quite an exentisve knowledge of food and food backgrounds.
It isn’t learning about all the millions of things that I can come to expect with my new diagnosis.
The thing that is making me panic is how erratic my reading seem to be. Now if I’m just being dramatic or premature just tell me to stop.
When I was admitted to hospital my blood sugars were high 20’s.
Since beginning my insulin regimen they seem to be very erratic my nurse told me to test pre breakfast, pre lunch, pre dinner and pre bed.
They jump between 8 and 20 and seem to spike the most just before bed.
I’m going to bring this up at my next appointment.
My question is as a newbie to this new life is it to be exepected to see my blood sugars to be so erratic even though I have started on the insulin? Does anyone remember the first few days of their diagnosis? It’s just worrying me a little.
Thank you & apologies for the long winded post.

 

[Jaylee]

Hi @RichardSp8 ,

Welcome to the forum.

My first days of diagnosis was a dizzy haze back in the summer of 76.

I'll tag in some guys with a more recent recollection of diagnosis to say hello.
@Scott-C @therower

It does get easier. Just take it in bite sized chunks.

 

[RichardSp8]

Hi @Jaylee thanks for the hello! I’m just realising how valuable this forum is going to be. It’s amazing!

 

[Jaylee]

Hi @Jaylee thanks for the hello! I’m just realising how valuable this forum is going to be. It’s amazing!

No problem Richard,

If I was to add anything at this stage? Test two hours after your meals too..it gives an idea of what the effects of your insulin dose is doing with what's eaten.

When is your next apointment with a health care professional?

 

[SueJB]

Hi everyone,
I was diagnosed 4 days ago with type 1.
I am jumping into learning, reading, researching and really getting my head around everything. ( it’s how I deal with stressful/unexpected/shocking situations) I’ve just started carb cou ting today after a visit to my dietician and diabetes nurse.
(1 unit of Humalog per 10g of carbs to begin with)
Then 12units of my Abasaglar on an evening.
My main concern isn’t the eating or the carb counting or watching what I’m eating. I used to be a chef and have quite an exentisve knowledge of food and food backgrounds.
It isn’t learning about all the millions of things that I can come to expect with my new diagnosis.
The thing that is making me panic is how erratic my reading seem to be. Now if I’m just being dramatic or premature just tell me to stop.
When I was admitted to hospital my blood sugars were high 20’s.
Since beginning my insulin regimen they seem to be very erratic my nurse told me to test pre breakfast, pre lunch, pre dinner and pre bed.
They jump between 8 and 20 and seem to spike the most just before bed.
I’m going to bring this up at my next appointment.
My question is as a newbie to this new life is it to be exepected to see my blood sugars to be so erratic even though I have started on the insulin? Does anyone remember the first few days of their diagnosis? It’s just worrying me a little.
Thank you & apologies for the long winded post.

Hello Richard,
My greet and eat message to you is eat low carb and use this forum to the max.
My first few days, 8 months ago, were weepy, head banging, worried, uninformed and scared. I thought I was going to have a hypo and die in my sleep, hahahaha breathe hahahahaha. I kept a food diary and still do, it's soooooooooooo useful. My initial BGs varied between 15 & 5 but this has stabilised more or less to within range. It's a long haul but it does slowly get better but I still get a figure and think "where the *********** did that come from?"
Virtual hug.

 

[Juicyj]

Hello @RichardSp8 and welcome

I was diagnosed over 6 years now and still remember how bewildered I felt with all the information, it’s good that you understand food, a good app for getting your head round carbs is ‘carbs and cals’ which is comprehensive with carb values, My best advice at this stage is to learn as
much as you can and keep a diary of your readings as it will help to see patterns, also get ‘think like a pancreas’ which is written by a type 1.

We are also here to help support and no question is too silly, I haven’t seen one yet

 

[RichardSp8]

No problem Richard,

If I was to add anything at this stage? Test two hours after your meals too..it gives an idea of what the effects of your insulin dose is doing with what's eaten.

When is your next apointment with a health care professional?

My next appointment is Thursday the 12th.
I was thinking I’m going start testing after eating as well. Thanks Jaylee

 

[RichardSp8]

Hello @RichardSp8 and welcome

I was diagnosed over 6 years now and still remember how bewildered I felt with all the information, it’s good that you understand food, a good app for getting your head round carbs is ‘carbs and cals’ which is comprehensive with carb values, My best advice at this stage is to learn as
much as you can and keep a diary of your readings as it will help to see patterns, also get ‘think like a pancreas’ which is written by a type 1.

We are also here to help support and no question is too silly, I haven’t seen one yet

Hi Juicyj,

Hi & thank you for your advice. I got that app and have found it very useful
Over the last couple of days and I also got the book to keep in my kitchen.
Thank you for the recommendation I have just ordered it now.
Have a lovely weekend.

 

[Juicyj]

Thanks @RichardSp8 yes you too and stay in touch there’s always someone about to chat to here if you need to vent/talk

 

[urbanracer]

Hi everyone,
I was diagnosed 4 days ago with type 1....................................

...........................They jump between 8 and 20 and seem to spike the most just before bed.
I’m going to bring this up at my next appointment.
My question is as a newbie to this new life is it to be exepected to see my blood sugars to be so erratic even though I have started on the insulin? Does anyone remember the first few days of their diagnosis? It’s just worrying me a little.
Thank you & apologies for the long winded post.

My blood sugars were up and down like a yo-yo for the first 12 weeks.

You are probably still honeymooning which makes getting dosage correct on a regular basis, very difficult.

The idea behind this (honeymoon) is that when you start taking insulin, it gives your pancreas a bit of a rest and it recuperates to the point where it can produce small amounts of insulin. This adds to your injected insulin, driving your blood glucose levels lower than expected. It is sporadic and it may last a few days or a few months (maybe longer).

 

[Robinredbreast]

Hi and welcome, so sorry to hear of your diagnosis, but it will get easier and more manageable in time. When I was diagnosed I was in hospital for a week, BS relatively stable then, but once out and about, I had to reduce my insulin intake, but that was a long time ago.
Take care and just ease yourself into it slowly and I'm sure you be will be fine.
All the best

 

[therower]

Hi @RichardSp8 . Welcome to the forum.
Congratulations on joining an esteemed club.
Everyone has given great advice and as you are maybe beginning to realise there are numerous ways to incorporate diabetes into your life. Most importantly you do have to incorporate it. You can fight it, make it your enemy. You can embrace it, make it your best friend. I prefer the latter.
Definitely do not worry at this early stage, get used to the basics. This is for life, cast your mind back to childhood, diabetes is no different, it will grow, it will develop, it will evolve, it will play up and you'll have fun going through all this together.
Diabetes is a lot about averages and trends. One high reading isn't going to kill you.
You will see a lot of posts here from different types of diabetics you have to remember that you are T1 and that is specific to you.
There are no rules. Everyone manages their diabetes their way. You , through trial and error will find what suits you best.
A few things I tell people ( listening is optional ).
1. Diabetes control is 80% mental/ emotional, 15% medication and 5% just winging it.
2. Diabetes wants to destroy you and it will try every trick in the book. It thrives in dark, stressful, argumentative places. Don't let it. Open up and let the light in, tell people you're diabetic, be proud. Don't get overly stressed, learn to shrug your shoulders, smile and move on. Don't fight it , embrace it, make it the reason you live and succeed..
Good luck and keep posting.

 

[RichardSp8]

Hi @RichardSp8 . Welcome to the forum.
Congratulations on joining an esteemed club.
Everyone has given great advice and as you are maybe beginning to realise there are numerous ways to incorporate diabetes into your life. Most importantly you do have to incorporate it. You can fight it, make it your enemy. You can embrace it, make it your best friend. I prefer the latter.
Definitely do not worry at this early stage, get used to the basics. This is for life, cast your mind back to childhood, diabetes is no different, it will grow, it will develop, it will evolve, it will play up and you'll have fun going through all this together.
Diabetes is a lot about averages and trends. One high reading isn't going to kill you.
You will see a lot of posts here from different types of diabetics you have to remember that you are T1 and that is specific to you.
There are no rules. Everyone manages their diabetes their way. You , through trial and error will find what suits you best.
A few things I tell people ( listening is optional ).
1. Diabetes control is 80% mental/ emotional, 15% medication and 5% just winging it.
2. Diabetes wants to destroy you and it will try every trick in the book. It thrives in dark, stressful, argumentative places. Don't let it. Open up and let the light in, tell people you're diabetic, be proud. Don't get overly stressed, learn to shrug your shoulders, smile and move on. Don't fight it , embrace it, make it the reason you live and succeed..
Good luck and keep posting.

Wow what an amazing post therower. Thank you so much for such a light and positive message.
I’m already finding the forum so amazing and I’m looking forward to starting a positive and healthy journey living with type 1.

 

[therower]

@RichardSp8 . You're welcome.
27 yrs and the little ****** ain't beat me yet.

 

[Daibell]

Hi. I agree that testing 2 hours after a meal may be useful as it tells you what effect the mealtime insulin has had. A pre-meal test tends to focus on how much insulin to inject based on more woolly information so may be less useful. When I went on insulin my control was immediately improved but we all vary a lot. You need to check that your 18 units of Basal is the right amount. If you fast for a good few hours after the Basal injection your blood sugar should remain stable indicating a good balance as it works to balance the liver's background 24/7 glucose output. The 1unit of Bolus to 10gm carb is the normal startpoint for most of us but might need a slight tweak up or down

 

[Robinredbreast]

@RichardSp8 . You're welcome.
27 yrs and the little ****** ain't beat me yet.

I concur with @therower, it's 29 years for me.

 

[Circuspony]

I was diagnosed last year and it took a good 3-4 months for my BG to settle and my metabolism to adjust. I'd been running on levels of 30+ prior to diagnosis so they brought me down slowly.

I still get days where I test a few hours after eating if I'm feeling 'off' & will see a 14. Not always for any good reason either - but I seem to get a 48 hour warning of being ill!

I broadly eat what I want and bolus for it. A few things don't seem to work well any more, but its trial and error. I exercise a lot and that's really helped with BG levels.

They make carb counting sound very straightforward, but its so dependant on so many factors - temperature, illness, exercise, type of food , what you're eating it with etc etc - that it really is trial and error a lot of the time....

 

[Scott-C]

Thanks for the tag, @Jaylee .

@RichardSp8 , you've asked about it being erratic. It comes with the territory but as time goes by you'll learn skills to make it less so.

The main problem is that, although there's some basic rules, for example 1 u for each 10 g (that can vary a lot too, often within the same person at different times of day), as soon as you inject and eat food, they are subject to a whole lot of bodily processes which can throw the calculations out.

In a non-T1, most insulin goes straight to the liver to tell it to suck up excess glucose. Our injected insulin tends to get nowhere near the liver, and some of it will be destroyed by insulin antagonists before it does anything. There's some work being done on adding, " hepatic directed vesicles" to insulin, which taxis insulin straight to the liver so that it more closely emulates normal insulin function, so that might be a new toy to play with in the next few years.

So, it's always going to have a degree of uncertainty to it.

One useful way of dealing with it is to understand how insulin operates over time. It has a pattern, not sure what humalog looks like, there's no doubt a graph on the internet, but my novorapid, for example, takes about 20 mins to get to work, peaks after about an hour or hour and a half, and works at a declining rate for about 3 to 5 hours.

Knowing that, it means that I can take a shot about 20 mins before a meal, so that it'll already be working when the food hits it, instead of playing catch it, and then I'll know about the hour mark whether I've got it right or under or over bolused. I'll also know that if I'm going to be doing some exercise later on within the 3 to 5 hour window, I'll still have some active insulin on board, and that might lower me a lot if I'm exercising because things called glut4 transporters in each of my cells will be stimulated by exercise and lower bg.

Once those basic mechanisms are understood, it lets you then think about tweaking doses and timing. For example, if I'm having a Thai green curry, white rice, with me, at least, gets absorbed fairly quickly, so I'll pre-bolus about 20 mins, but if it's brown rice, it's absorbed more slowly, so 20 mins would make me hypo, so 10 mins would do. Or, if I know I'm going to be sitting in the office after lunch, it'll be x units, whereas if I'm on holiday and know I'm going to be spending a few hours walking around sightseeing, I'll know that'll bring glut4 into play, so I'll likely shave quite a few units off to avoid the insulin and glut4 doubling up. Or I might leave it at the same amount as I often holiday in Krakow and there's always a quality ice cream parlour at hand! I might also shave off or add a few units if my levels are on a downward or upwards trend at the time of the shot


I suppose the point I'm trying to make is that just looking at the number of carbs when carb counting is too simplistic. We have to consider the surrounding circumstances too, in terms of type of food, what's happened in the last few hours, and what might happen in the next few hours.

One of the big things happening in the UK at the moment is freestyle libre starting to become available on the nhs. It's still very much a postcode lottery at the moment. Some areas are very liberal with it, but most are not - google your area's health authority and there will likely be a policy statement on it. Strips just give you a snapshot in time, which is of limited use when you're dealing with a constantly moving target. But then you've got cgm - continuous glucose monitoring. It makes it a much fairer game when you can actually see what you're dealing with. Formal nhs education is not keeping up . It's based on strips. Official carb counting courses like DAFNE will say things like don't test between meals unless you feel hypo and save corrections until meals. Sorry, f*ck that. With cgm, if I see my graph starting to inflect up or down, I can decide on the fly whether I need a small 5g or 1 or 2u correction to tweak it back imto line before it gets anywhere near out of range. It removes a lot of the uncertainty and erraticness. Plus your phone will ring if you go below a set point, so you can avoid hypos.

Cgm is hugely liberating and I'd strongly encourage you to look into it. There's dexcom, officially costs £200 per month, but there's ways of using it unofficially which bring it down to about £100 per month. Libre is £100 per month, and there's a small add on transmitter called blucon for £96 one off cost which turns it into cgm. If you live in an area which does libre on the nhs, all the better - cgm for free.

Some good books:

Think Like a Pancreas - Gary Scheiner
Sugar Surfing - Stephen Ponder
Beyond Fingersticks - William Lee Dubois
Breakthrough... - Thea Cooper

The middle two are about cgm. The last one won't teach you much about the management of T1, but it's still worth a read. Well researched book about the history of the discovery of insulin. The stories about parents queuing up around the block in the desperate hope of getting some of the limited supplies are harrowing. We're not lucky to be T1, but we've got it relatively easy compared to back then.

Good luck, mate, this is often not an easy ride, but it's do-able. Once you get the basic rules under your belt, you'll be surprised how much latitude there is. And if it all goes wrong, there's nothing a bag of jelly babies won't sort!

 

[RichardSp8]

Thanks for the tag, @Jaylee .

@RichardSp8 , you've asked about it being erratic. It comes with the territory but as time goes by you'll learn skills to make it less so.

The main problem is that, although there's some basic rules, for example 1 u for each 10 g (that can vary a lot too, often within the same person at different times of day), as soon as you inject and eat food, they are subject to a whole lot of bodily processes which can throw the calculations out.

In a non-T1, most insulin goes straight to the liver to tell it to suck up excess glucose. Our injected insulin tends to get nowhere near the liver, and some of it will be destroyed by insulin antagonists before it does anything. There's some work being done on adding, " hepatic directed vesicles" to insulin, which taxis insulin straight to the liver so that it more closely emulates normal insulin function, so that might be a new toy to play with in the next few years.

So, it's always going to have a degree of uncertainty to it.

One useful way of dealing with it is to understand how insulin operates over time. It has a pattern, not sure what humalog looks like, there's no doubt a graph on the internet, but my novorapid, for example, takes about 20 mins to get to work, peaks after about an hour or hour and a half, and works at a declining rate for about 3 to 5 hours.

Knowing that, it means that I can take a shot about 20 mins before a meal, so that it'll already be working when the food hits it, instead of playing catch it, and then I'll know about the hour mark whether I've got it right or under or over bolused. I'll also know that if I'm going to be doing some exercise later on within the 3 to 5 hour window, I'll still have some active insulin on board, and that might lower me a lot if I'm exercising because things called glut4 transporters in each of my cells will be stimulated by exercise and lower bg.

Once those basic mechanisms are understood, it lets you then think about tweaking doses and timing. For example, if I'm having a Thai green curry, white rice, with me, at least, gets absorbed fairly quickly, so I'll pre-bolus about 20 mins, but if it's brown rice, it's absorbed more slowly, so 20 mins would make me hypo, so 10 mins would do. Or, if I know I'm going to be sitting in the office after lunch, it'll be x units, whereas if I'm on holiday and know I'm going to be spending a few hours walking around sightseeing, I'll know that'll bring glut4 into play, so I'll likely shave quite a few units off to avoid the insulin and glut4 doubling up. Or I might leave it at the same amount as I often holiday in Krakow and there's always a quality ice cream parlour at hand! I might also shave off or add a few units if my levels are on a downward or upwards trend at the time of the shot


I suppose the point I'm trying to make is that just looking at the number of carbs when carb counting is too simplistic. We have to consider the surrounding circumstances too, in terms of type of food, what's happened in the last few hours, and what might happen in the next few hours.

One of the big things happening in the UK at the moment is freestyle libre starting to become available on the nhs. It's still very much a postcode lottery at the moment. Some areas are very liberal with it, but most are not - google your area's health authority and there will likely be a policy statement on it. Strips just give you a snapshot in time, which is of limited use when you're dealing with a constantly moving target. But then you've got cgm - continuous glucose monitoring. It makes it a much fairer game when you can actually see what you're dealing with. Formal nhs education is not keeping up . It's based on strips. Official carb counting courses like DAFNE will say things like don't test between meals unless you feel hypo and save corrections until meals. Sorry, f*ck that. With cgm, if I see my graph starting to inflect up or down, I can decide on the fly whether I need a small 5g or 1 or 2u correction to tweak it back imto line before it gets anywhere near out of range. It removes a lot of the uncertainty and erraticness. Plus your phone will ring if you go below a set point, so you can avoid hypos.

Cgm is hugely liberating and I'd strongly encourage you to look into it. There's dexcom, officially costs £200 per month, but there's ways of using it unofficially which bring it down to about £100 per month. Libre is £100 per month, and there's a small add on transmitter called blucon for £96 one off cost which turns it into cgm. If you live in an area which does libre on the nhs, all the better - cgm for free.

Some good books:

Think Like a Pancreas - Gary Scheiner
Sugar Surfing - Stephen Ponder
Beyond Fingersticks - William Lee Dubois
Breakthrough... - Thea Cooper

The middle two are about cgm. The last one won't teach you much about the management of T1, but it's still worth a read. Well researched book about the history of the discovery of insulin. The stories about parents queuing up around the block in the desperate hope of getting some of the limited supplies are harrowing. We're not lucky to be T1, but we've got it relatively easy compared to back then.

Good luck, mate, this is often not an easy ride, but it's do-able. Once you get the basic rules under your belt, you'll be surprised how much latitude there is. And if it all goes wrong, there's nothing a bag of jelly babies won't sort!

Wow Scott-C thank you so much for that in depth and educated reply. I’m so grateful to have tools and people to talk to that probably wasn’t as readily available some time ago.
I’m on the education train and ready to work this all out

 

[Scott-C]

Wow Scott-C thank you so much for that in depth and educated reply. I’m so grateful to have tools and people to talk to that probably wasn’t as readily available some time ago.
I’m on the education train and ready to work this all out

Ha, yes, it is very different now! When I started out in pre-internet days, I was given a few sheets of paper showing carb values of some foods in relation to the carb content of a Digestive biscuit!

A small note of caution. Newly dx'd often attack it head on, read all the books, and there's absolutely nothing wrong with that, there's definitely a technical aspect to it, and it's worthwhile learning about the biology of it.

But then, what sometimes happens is they think they've got it sussed, got their ratios worked out, but then a few random results pop up, and they get dispirited. Some go on a major downer. They've put all that effort in and T1 then just doesn't play by the rules.

There's no easy answer to this. Sometimes, it just doesn't play by the rules. I've been doing this for 30 years, am fairly clued up on it, but I still get unexplained hypos and hypers (although, with cgm, nothing disastrous).

One way of approaching it is to simply accept that because of the many chemical interactions going on which insulin and food are subject to, we're highly unlikely to get it right all the time.

So, don't be too disheartened if you get unexplained flyers. It happens.