Recently Diagnosed Type 1

[DiabeticUnicorn]

Hi guys,

Thought I'd stop by and say hello I've been reading a lot of threads and they have been very informative!

A couple of weeks ago I was diagnosed as a Type 1 diabetic. My HbA1c came back at 105.

I was really lucky and had an urgent referral to the diabetes clinic after my glucose reading of 19.6mmol/l at the GP. I had a 'significant' number of ketones in my urine so I think we caught it just in time thankfully!

I'm on fixed doses of Insulin at the moment (Humalog - bolus and Abasaglar - basal). I'm finding the honeymoon period frustrating as there is no consistency - some days I eat a fair amount of carbs and end up in a hypo. Other days, I eat little carbs and my glucose is in the mid-teens.

I decided to start a blog about my journey so please feel free to join me!
www.diabeticunicorn.co.uk

Jade x

 

[SB2015]

Hi guys,

Thought I'd stop by and say hello I've been reading a lot of threads and they have been very informative!

A couple of weeks ago I was diagnosed as a Type 1 diabetic. My HbA1c came back at 105.

I was really lucky and had an urgent referral to the diabetes clinic after my glucose reading of 19.6mmol/l at the GP. I had a 'significant' number of ketones in my urine so I think we caught it just in time thankfully!

I'm on fixed doses of Insulin at the moment (Humalog - bolus and Abasaglar - basal). I'm finding the honeymoon period frustrating as there is no consistency - some days I eat a fair amount of carbs and end up in a hypo. Other days, I eat little carbs and my glucose is in the mid-teens.

I decided to start a blog about my journey so please feel free to join me!
www.diabeticunicorn.co.uk

Jade x

Welcome to the forum.

It is a shock being diagnosed with T1 at any age (I was 53), and a bit of a life changer, BUT it does get easier and it is manageable. The Honeymoon period can be very frustrating, as those beta cells that you still have, get a bit of a rest with you injecting now, and then decide to join in, ..... sometimes.

Are there pans to switch you to Mutiple Daily Injections (MDI) , rather than the fixed mixed doses. Once you have switched to separate insulin, they can teach you how to make adjustments to your doses yourself to match what you want to eat, when you want to eat (or not eat). It just means that things are a lot more flexible, and it is much easier to adjust to what you need through the day and night.

I have learnt much of what I know from others on here, eh have always been helpful and have so much experience to draw on. No questions are considered silly on here, so just ask anything that comes to mind.
Keep in touch and keep the questions coming.

 

[DiabeticUnicorn]

Welcome to the forum.

It is a shock being diagnosed with T1 at any age (I was 53), and a bit of a life changer, BUT it does get easier and it is manageable. The Honeymoon period can be very frustrating, as those beta cells that you still have, get a bit of a rest with you injecting now, and then decide to join in, ..... sometimes.

Are there pans to switch you to Mutiple Daily Injections (MDI) , rather than the fixed mixed doses. Once you have switched to separate insulin, they can teach you how to make adjustments to your doses yourself to match what you want to eat, when you want to eat (or not eat). It just means that things are a lot more flexible, and it is much easier to adjust to what you need through the day and night.

I have learnt much of what I know from others on here, eh have always been helpful and have so much experience to draw on. No questions are considered silly on here, so just ask anything that comes to mind.
Keep in touch and keep the questions coming.

I am on 4 injections a day. I have mealtime Humalog and Abasaglar before bed at night. They said they won't start me carb counting until at least 6-months in as it is 'doesn't serve much benefit' - their words, not mine. It's something that I have challenged today as I feel it would suit me better than having fixed amounts at different meal times - some days I feel like I am eating just to 'feed' the insulin. They didn't explain to me why I'm not carb counting...

 

[SB2015]

Also just looked at your blog. Well done for getting that giong.

I am amazed that they are not encouraging you to carb count straight away, especially as you are asking to do this. The only other way you could get some consistency is to eat the same number of carbs each meal and get this to match the fixed doses that they have put you on, by trial and improvement. I do eat about the same number of carbs at each meal, but the meals are all very different. Doing this would get you started on calculating carbs, which will be essential in the future.

I would certainly keep pestering them to switch you to MDI. This is recommended for people with T1 in the NIcE Guidelines (Help someone. Can you add the hyperlink to the appropriate clause for Jade). It seems that your clinic has not yet caught up with this. See what happens when you ask again, and then keep asking. It really will make life easier.

 

[SB2015]

Oooops, I had misunderstood your earlier post. You are already on MDI. Changing the doses will come, and as they say things are going to wobble at the moment. Nothing to stop you starting to count carbs. I still weigh stuff, calculate and aim for a target of a fixed amount of carbs at each meal. I don’t always hit the target, but it works for me.

 

[DiabeticUnicorn]

I am due to meet with them again in person on 23rd August, but until then I am bombarding with questions. I am trying to eat fixed amounts of carbs in the meantime as I am having hypos at least 2-3 times a week, but some days I fall off the wagon and end up eating pizza then I end up going the other way and feeling crappy from high sugar again...

 

[SB2015]

We are overlapping messages. Sorry for my confusion.

I am 12 years in and I have a very mild hypo most days. Just make sure that you always have your hypo treatment with and dotted around the house, at work, in the car, in the ‘other handbag’, and ‘the other one ‘.

Sleep well

 

[SB2015]

I am due to meet with them again in person on 23rd August, but until then I am bombarding with questions. I am trying to eat fixed amounts of carbs in the meantime as I am having hypos at least 2-3 times a week, but some days I fall off the wagon and end up eating pizza then I end up going the other way and feeling crappy from high sugar again...

Pizzas are a bit of a problem, as they have so much fat in. That slows the release of the carbs, so you can go low soon after the meal and then high quite a lot later. Same for curries. I tend to avoid them, but having said that I am giong out for a curry tomorrow. I just know that I shall need to keep a careful watch on things overnight. Still worth it sometimes!! Staying on the wagon just isn’t possible all the time!!

 

[Matt Cycle]

Hi Jade and welcome to the forum. 🙂 Great blog. I didn't know anyone with T1 when I was diagnosed (pre-internet) but nowadays with blogs, forums, social media etc there's lots of ways to get in touch with people. You'll get the hang of things....or like the rest of us manage to muddle through!

 

[KARNAK]

Hello Jade welcome to the forum,🙂 a very high HbA1c at 105 but reducible with a bit of knowledge from your (HCP) Health Care Professional. Mine was 156😱on diagnosis (DX) but got it down to 48 in 3 months with the majority of help coming from this lovely forum. Don`t be over concerned at the moment, but try to stay out of hypo land and upper limit probably around 10. Always have hypo treatment with you i.e Jelly Babies full sugar drinks, glucose tablets. I see @SB2015 has overlapped my post but good advice.🙂 Carb counting is crucial to keep to your levels under control, if your levels go too high reduce your carbs, if too low increase the carbs but make sure you take immediate action to bring it back up. You will soon learn how to adjust your Insulin for your own benefit, good luck on your big D journey and remember we are all here for you, but it is for life so learn as much as you can. If you need to ask a question ask, if you need to rant, rant.🙂

 

[DiabeticUnicorn]

Thank you all, really appreciate your advice and support!

Jx

 

[TheClockworkDodo]

Hello Jade, and welcome to the forum 🙂

It does sound as though you were lucky to get a diagnosis when you did and not any later - I had readings similar to yours when I was diagnosed, but I ended up in hospital for a week with ketoacidosis.

They have put you on unusual (old-fashioned, I think) insulins, so it might be worth asking whether there's a particular reason for that, and whether they plan to change you to more usual ones, as well as asking whether you can tweak your doses yourself in order to be able to eat more/less rather than having to try to eat the same amount every day to fit in with your doses. That's unusually inflexible, even if they're not teaching you to carb-count yet.

I've just been looking at your blog, and I can answer one question for you - I suspect the reason you had a panic attack at 3.7 but minimal hypo symptoms when you were 2.6 is almost certainly because your blood sugar was plummeting rapidly when you were 3.7 but only gradually dropping when you were 2.6 - the speed of the drop can make a big difference to the way the hypo makes us feel.

I noticed too from the picture of your diary that you are only testing before meals and before bed - did no-one tell you it was a good idea to test 2 hours after meals sometimes too, to see how different meals are effecting you? I did what you are doing when I was first diagnosed, and thought my blood sugar was fairly level most of the time, but when I started doing some testing after meals as well I realised that sometimes it was spiking quite high between meals, which meant I needed to make some small changes to the times I injected and in some cases to what I ate (I can eat most things, but not ripe bananas, and bizarely not eggs - I know, they're carb-free, but I was injecting enough insulin for them for 100g of carbs and still ending up with my blood sugar spiking to 18!).

Anyway, do let us know if you have any questions, someone here is sure to be able to help 🙂

 

[nonethewiser]

Nice blog.

Stay positive, most of what you wrote is what we've all experienced, a year done the road you will be a pro at this game.

 

[DiabeticUnicorn]

Hello Jade, and welcome to the forum 🙂

It does sound as though you were lucky to get a diagnosis when you did and not any later - I had readings similar to yours when I was diagnosed, but I ended up in hospital for a week with ketoacidosis.

They have put you on unusual (old-fashioned, I think) insulins, so it might be worth asking whether there's a particular reason for that, and whether they plan to change you to more usual ones, as well as asking whether you can tweak your doses yourself in order to be able to eat more/less rather than having to try to eat the same amount every day to fit in with your doses. That's unusually inflexible, even if they're not teaching you to carb-count yet.

I've just been looking at your blog, and I can answer one question for you - I suspect the reason you had a panic attack at 3.7 but minimal hypo symptoms when you were 2.6 is almost certainly because your blood sugar was plummeting rapidly when you were 3.7 but only gradually dropping when you were 2.6 - the speed of the drop can make a big difference to the way the hypo makes us feel.

I noticed too from the picture of your diary that you are only testing before meals and before bed - did no-one tell you it was a good idea to test 2 hours after meals sometimes too, to see how different meals are effecting you? I did what you are doing when I was first diagnosed, and thought my blood sugar was fairly level most of the time, but when I started doing some testing after meals as well I realised that sometimes it was spiking quite high between meals, which meant I needed to make some small changes to the times I injected and in some cases to what I ate (I can eat most things, but not ripe bananas, and bizarely not eggs - I know, they're carb-free, but I was injecting enough insulin for them for 100g of carbs and still ending up with my blood sugar spiking to 18!).

Anyway, do let us know if you have any questions, someone here is sure to be able to help 🙂

Hi Juliet,

Yes I've only been testing before meals at their instruction and when I have felt a hypo. Thanks for the explanation about the hypo by the way, makes a lot of sense!

I will start to test after meals and I will also keep track of how many g of carbs I have per meal. I guess I can then start to work out how many units of insulin it takes to balance out per 10g? What if my sugar is high before a meal? Do I just work out how many units it takes to keep me on the same level then work out my sensitivity?

Sorry if I'm being dumb

Jx

 

[Kaylz]

Just thought I'd pop my head in and say welcome to you on here too!

I'm going to have a look at your blog later on today as I'm just about to head out now
xx

 

[SB2015]

Hi Juliet,

Yes I've only been testing before meals at their instruction and when I have felt a hypo. Thanks for the explanation about the hypo by the way, makes a lot of sense!

I will start to test after meals and I will also keep track of how many g of carbs I have per meal. I guess I can then start to work out how many units of insulin it takes to balance out per 10g? What if my sugar is high before a meal? Do I just work out how many units it takes to keep me on the same level then work out my sensitivity?

Sorry if I'm being dumb

Jx

First of all no questions are dumb on here. They are just things you need answered.

I am impressed with how you getting your head round things already. If I was high before a meal I would delay my meal if I can and I would correct to bring it down, but I think that your team might want to wait to start doing this. I suspect that you will be ready for this sooner than they expect. The other thing that you could do if you are high is to give your dose for the meal and then wait a while to let it get giong before you start your meal. I do this on any meal to let the insulin get to work unless I am low. (HCPs get a bit panicky about this sometimes)

As @TheClockworkDodo said, the insulin that they have given you are quite old ones, so do ask the reason for their choice, and whether they plan to change you over in the future. Novorapid does what it says on the tin, works more rapidly, and FIASP is supposed to work even more quickly for the quick acting. Levemir as a background insulin gives you the chance to split doses later on to make it easier to get things good overnight.

Lots of info, but just focus on gradually bringing your levels into a reasonable range. Your body has had a bit of a battering and they will want you to allow it to adjust. Learn as much as you can, and keep asking (that is what we are here for) and you will develop your own new ‘normal’ life.

 

[Bruce Stephens]

They have put you on unusual (old-fashioned, I think) insulins, so it might be worth asking whether there's a particular reason for that, and whether they plan to change you to more usual ones, as well as asking whether you can tweak your doses yourself in order to be able to eat more/less rather than having to try to eat the same amount every day to fit in with your doses.

I'd guess it's maybe they're assuming there's still some insulin production, so the injected insulin doesn't have to be quite so precise.

And similarly, maybe they think carb counting will make more sense after the honeymoon phase? I agree it seems odd not to suggest that a small amount of tweaking can be helpful; recommending fixed meal sizes seems a bit unnecessary.

 

[TheClockworkDodo]

You're probably right about the honeymoon period, Bruce - I was told they wouldn't teach me to carb-count for the first year. But I altered my own insulin doses pretty much from the start rather than having to eat up to them - I just did it by thinking along the lines "I had 3 units for that lunch last time I ate it and I had a hypo afterwards, so I'll have 2.5 units for it this time and see what happens", and keeping notes in my diary. And I think most people are put on Novorapid and Lantus from the start nowadays rather than Humalog and Abasaglar, aren't they (not that I think Lantus is all it's cracked up to be, it just seems to be the usual default basal)?

Jade, if you are high before a meal - well, it depends how high - at this stage I wouldn't worry too much if you're 10ish but if you're much over that you might want to inject and wait 10 or 15 minutes before eating, also maybe have a long drink of water before eating, as that will help bring your blood sugar down. I find it takes about half an hour for my insulin to start working, and the higher my blood sugar is the longer it will take for the insulin to get going, but the time this takes will vary from person to person, and it's better to err on the side of caution and stay slightly high than risk plummeting too fast. On the other hand it's not a good idea to eat if your blood sugar's in the high teens or 20s - then I'd definitely inject and wait until you've got it down a bit, and just do some extra testing so that you know what's going on.

Have you been told about correction doses?

And as @SB2015 says, asking questions is never dumb. The dumb thing would be to have lots of questions and not ask them!

 

[Bruce Stephens]

And I think most people are put on Novorapid and Lantus from the start nowadays rather than Humalog and Abasaglar, aren't they (not that I think Lantus is all it's cracked up to be, it just seems to be the usual default basal)?

The insulin choices did seem odd to me, yes. It does feel like penny-pinching, but maybe there's some convincing reason.

Had a look at NICE, and it looks like they consider Abasaglar similar to Lantus. Otherwise they recommend newly diagnosed people to be offered a bolus-basal regime, which this is (though Novorapid of FIASP would surely be more usual). (Interestingly, they seem to recommend twice-daily Detemir (Levemir) to be first choice for the basal.)

 

[DiabeticUnicorn]

Hi Juliet,

I have since been given permission by my covering DSN (original is on leave) to adjust my doses based on carb intake. I feel like the kid that goes to the other parent when I've been told no!

As you say, I feel like I am either eating to cover the insulin dose or not having enough insulin to cover my meals.

I'm day 2 of adjusting and so far so good! I've been averaging between 6.3 and 10.3 throughout the day so I'm happy with that. Also had a good night's sleep for the first time in a while so feeling smug and energised

I will ask how they decide what Insulin's to put people on when I am at the clinic next week and I will let you know what they say. I also think it's probably a cost exercise! At the moment both insulins seem to be agreeing with and working for me so I'm not too worried.

Jx