New diagnosis ?type 1 @ 38yrs old.

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Maisiemoo

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Hi all, I’m 38; new diagnosis of ? Type 1 - awaiting confirmation from Oxford Hospital!
I’m not overweight, eat pretty healthy. But after a recent holiday, came back 3 days later I got blurred vision and thirst, bm was 24.8 when I got in to see my gp! i was sent to a&e but Waited 6hrs for them to say yes my blurred vision was from the high sugars, wouldn’t do anything else, they said it was up to my gp to start me on something!
Next day I started gliclazide, then 3 days later insulin - lantus once a day, then a further 2 days later started novo rapid three times a day with food. Got a libre monitor that v helpful until I have a hypo and it seems to stop working!!
Been on novorapid for few days now very small dose but I’ve had hypos then, very high… I just can’t win.
stuggling! Went to 3.6 today no symptoms and took a long time to get up, seemed to plummet very quick, one minute fine then a big drop!
I know everyone says it will take time but arr it’s very annoying!!Thats me! Advise most welcome and sorry for grammar and spelling!!
 
Welcome @Maisiemoo 🙂 Are you on fixed doses of Novorapid? If so, are you counting the carbs in your meals to make sure you’re having the same amount for each meal every day? How much Novorapid are you taking? Do you have a half unit pen?

Lots of questions there!
 
they advised me to try 3; originally they said 5 but way too much.
im on Lantus 6 at night
dont have a half dose on these pens
how do you know how much insulin to give based on carbs?! Is there a calculator?! Stupid question probably!,
 
dont have a half dose on these pens
That should be relatively easy to fix (though it'll take a while it's probably something you'll want to do) at least for the NovoRapid. Ask to change over to reusable pens and insulin cartridges (the needles are the same as with disposable ones), and get the Novopen Echo Plus pen (which has half units). (I fear Lantus may well not have a suitable pen.)
how do you know how much insulin to give based on carbs?! Is there a calculator?! Stupid question probably!,
There is a calculation: once your long acting insulin dose is right, you just take the carbs in grams and multiply by some fraction to get the insulin doses. Unfortunately the fraction you need is individual and is usually different at different times of the day.

And probably it's early days for your diabetes so you can expect everything to be in flux for a while.
 
There are no stupid questions @Maisiemoo 🙂 The amount of insulin you’ll need to cover X amount of carbs varies per person and sometimes per meal. It also depends on what you’re about to do, eg sit down and watch TV or go to the gym. You should have been given a rough amount of carbs to aim for per meal, eg breakfast 50g carbs or whatever.

What you can do is keep records of how many carbs you’re eating. This will help them calculate your meal ratios - ie how many grams of carbs 1 unit of insulin covers. You’ll then be able to inject what you need for each meal, varying the amount as needed.
 
Welcome to the forum @Maisiemoo

Sorry to hear about your diagnosis, and that your diabetes is giving you the runaround :(

@Bruce Stephens and @Inka have given you some handy descriptions of balancing insulin and carbs. If it helps there’s an overview here too:

In the early years I found it easier to base things on meals. Mostly keeping my doses consistent day to day, and knowing I had x grams of carbohydrate to aim for at each meal (so a pair of dose/carbs for each meal).

This meant I could experiment with different sources of carbs, and see which ones seemed gentlest on my BG levels, and which gave rapid ‘spiky’ rises and falls.

Once I had a bit of experience I was able to move towards ratios, and adjusting the dose for whatever meal / amount of carbs I was about to eat on a meal-by-meal basis. But in the early days, reducing the variables helped me.

Plus, as has been mentioned, you may still have a little residual home-grown insulin production “helping out”. This is sometimes called the honeymoon period. And for some people it can be a bit of a challenge, where their pancreas doesn’t help gently or consistently, but sort of stutters and panics throwing a good amount of randomness into the mix o_O😱
 
Its always a bit hectic/ chaotic at first, so try not to worry too much. It does get better!

When i had libre it did tend to go awol when the situation got 'interesting'. But it is advised to make treatment decisions on finger prick testing.

Its also harder to see patterns at first, amid the chaos. Do you stay level overnight? If so, your lantus dose is around right. Can you do a screenshot of your libre so we can give informed advice?
I believe lantus does have a half unit pen (junior star) but it may be you need to get it generally right before you get into half units. Half unit on novorapid perhaps more useful for correction doses...but again, you may want to get the basics right before you do too many extra injections.

I always eat the same breakfast, and it can be useful to eat the same sort of food for breakfast, dinner (eg a sarny) whilst you work on the ratio of insulin you need to carbs.

I would recommend the book 'think like a pancreas'

Like learning anything, its hard at first (we've all been there' but you will get the hang of it
 
Whilst 'Think Like a Pancreas' has indeed been regarded as essential reading for us for a good many years, there's a somewhat more reader friendly book that has been published (and indeed more regularly revised) since TLAP appeared (and yes I know very well you're 38 so please please don't let the title put you straight off because anyone 'new to all this' will benefit from it.)


Written for the parents of such children, who certainly won't have been expecting to have to cope with their offspring being diagnosed, and feeling like they've been hit with a lightning bolt (as if having the responsibility of kids wasn't enough already)

I'm sure there are bits that won't be relevant; however it's no bad thing for any of us to know what happens in our bodies when any other bit of it than is immediately noticeable is in action.
 
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Hi and welcome from me too.
Don't worry, it is perfectly normal to be overwhelmed and scared at the beginning and unfortunately levels can be most erratic at this time because of the honeymoon period although for some people their own insulin production smooths off the edges, others of us found it unpredictable and unhelpful to say the least, scary sometimes. Gradually you will start to see patterns though. They won't be exactly the same but you might start seeing that you drop a bit low (or very low) 3 afternoons out of 5 or perhaps your levels shoot into orbit after breakfast most mornings. You have to look longer term than just day to day to see these patterns although the "Daily Patterns" feature on Libre can sometimes help to identify them once you have enough data built up.

Talking of Libre, it might be pertinent to point out that Libre and other CGM systems have limitations and knowing and understanding those limitations is important, particularly when dealing with hypos, which is something you mention. Once Libre indicates you are below 4, use your finger prick BG meter to assess if you are actually below 4 (Libre exaggerates sometimes. My sensors generally read about 1mmol below finger prick readings, so Libre might say 3.6 when I am 4.6. This may well be the case for you too and could be why you didn't feel hypo when Libre was showing 3.6. Added to that, Libre reads interstitial fluid(IF), not blood and IF is about 15mins behind blood, so if your BG levels are rising, the interstitial fluid will be 10-15 mins behind. Libre has an inbuilt algorithm to overcome this time lag, which extrapolates the previous readings to predict what the current reading will be. This is fine when your levels are level or going up or down slightly but not when they are changing direction for instance when you have dropped into a hypo and then had some fast acting carbs to bring you up. Libre will almost always show your levels continuing to drop 15 mins after taking your hypo treatment, due to this algorithm whereas a finger prick will show you the true situation, so always be guided by your BG meter when treating a hypo. If you just go by Libre you will almost certainly over treat it and end up too high and then you are on the BG rollercoaster and it is usually a bumpy ride.

There are a few other limitations all which are documented in this thread....

Just really want to say that it does gradually get easier. You are on the very steepest part of the learning curve at the moment but gradually things will start to make a bit of sense and become more routine until you are sitting eating your meal and trying to remember if you actually injected for it. I can wake up in the middle of the night hypo and eat a couple of JBs and be back to sleep in minutes, or wake up high, calculate a correction dose, inject and be back to sleep without even putting the light on! It gradually just becomes second nature. The only thing that doesn't seem to normalize is your frustration when diabetes doesn't play by the rules and moves the goal posts when you aren't looking and the strategies and ratios that worked well for the last 3 or 4 years suddenly don't work any more and you have to develop new strategies. Libre and other CGM are wonderful though and take a lot of the guess work out of it. We are so lucky to be diagnosed at a time when we have this great technology. My uncle didn't even have a BG meter, had numerous really serious hypos where he was found semiconscious and hospitalized several times with DKA and yet he was still cycling solo at 80yrs old, so despite it being pretty scary the odds are stacked well in our favour these days, with the modern insulins and CGM and insulin pumps and closed loop systems to come for most of us in the future, making our lives with diabetes much easier to manage.
 
That should be relatively easy to fix (though it'll take a while it's probably something you'll want to do) at least for the NovoRapid. Ask to change over to reusable pens and insulin cartridges (the needles are the same as with disposable ones), and get the Novopen Echo Plus pen (which has half units). (I fear Lantus may well not have a suitable pen.)

There is a calculation: once your long acting insulin dose is right, you just take the carbs in grams and multiply by some fraction to get the insulin doses. Unfortunately the fraction you need is individual and is usually different at different times of the day.

And probably it's early days for your diabetes so you can expect everything to be in flux for a while.
Today she has prescribed a half unit pen as you said above!
We will see how that goes!
Just struggling to eat and worry of eatting and making it go high!
Thanks for your advise
 
Hi and welcome from me too.
Don't worry, it is perfectly normal to be overwhelmed and scared at the beginning and unfortunately levels can be most erratic at this time because of the honeymoon period although for some people their own insulin production smooths off the edges, others of us found it unpredictable and unhelpful to say the least, scary sometimes. Gradually you will start to see patterns though. They won't be exactly the same but you might start seeing that you drop a bit low (or very low) 3 afternoons out of 5 or perhaps your levels shoot into orbit after breakfast most mornings. You have to look longer term than just day to day to see these patterns although the "Daily Patterns" feature on Libre can sometimes help to identify them once you have enough data built up.

Talking of Libre, it might be pertinent to point out that Libre and other CGM systems have limitations and knowing and understanding those limitations is important, particularly when dealing with hypos, which is something you mention. Once Libre indicates you are below 4, use your finger prick BG meter to assess if you are actually below 4 (Libre exaggerates sometimes. My sensors generally read about 1mmol below finger prick readings, so Libre might say 3.6 when I am 4.6. This may well be the case for you too and could be why you didn't feel hypo when Libre was showing 3.6. Added to that, Libre reads interstitial fluid(IF), not blood and IF is about 15mins behind blood, so if your BG levels are rising, the interstitial fluid will be 10-15 mins behind. Libre has an inbuilt algorithm to overcome this time lag, which extrapolates the previous readings to predict what the current reading will be. This is fine when your levels are level or going up or down slightly but not when they are changing direction for instance when you have dropped into a hypo and then had some fast acting carbs to bring you up. Libre will almost always show your levels continuing to drop 15 mins after taking your hypo treatment, due to this algorithm whereas a finger prick will show you the true situation, so always be guided by your BG meter when treating a hypo. If you just go by Libre you will almost certainly over treat it and end up too high and then you are on the BG rollercoaster and it is usually a bumpy ride.

There are a few other limitations all which are documented in this thread....

Just really want to say that it does gradually get easier. You are on the very steepest part of the learning curve at the moment but gradually things will start to make a bit of sense and become more routine until you are sitting eating your meal and trying to remember if you actually injected for it. I can wake up in the middle of the night hypo and eat a couple of JBs and be back to sleep in minutes, or wake up high, calculate a correction dose, inject and be back to sleep without even putting the light on! It gradually just becomes second nature. The only thing that doesn't seem to normalize is your frustration when diabetes doesn't play by the rules and moves the goal posts when you aren't looking and the strategies and ratios that worked well for the last 3 or 4 years suddenly don't work any more and you have to develop new strategies. Libre and other CGM are wonderful though and take a lot of the guess work out of it. We are so lucky to be diagnosed at a time when we have this great technology. My uncle didn't even have a BG meter, had numerous really serious hypos where he was found semiconscious and hospitalized several times with DKA and yet he was still cycling solo at 80yrs old, so despite it being pretty scary the odds are stacked well in our favour these days, with the modern insulins and CGM and insulin pumps and closed loop systems to come for most of us in the future, making our lives with diabetes much easier to manage.
Thanks so much for taking the time to write that. Really helps me.
Ill drfo finger prick next time before i eat if low!
Thanks
 
You can self refer onto an on-line course BERTIE which may be helpful in knowing what you can eat with relation to your insulin doses and working out carbs etc.
 
You can self refer onto an on-line course BERTIE which may be helpful in knowing what you can eat with relation to your insulin doses and working out carbs etc.
Take care advising this to someone just diagnosed and overwhelmed. There is a reason why people are not instantly registered on DAFNE the day they are diagnosed with Type 1.
 
Just struggling to eat and worry of eatting and making it go high!
Going a bit high is probably unavoidable for a little while. Things should stabilise over time and you can try and get better control gradually. But initially trying to reduce hypos is probably what your healthcare team will emphasise.
 
Today she has prescribed a half unit pen as you said above!
We will see how that goes!
Just struggling to eat and worry of eatting and making it go high!
Thanks for your advise

It’s normal to be a bit high to start with. Firstly, it’s better than going too low, and secondly, it’s better for your body to bring your blood sugar down gradually.

Please don’t struggle to eat. Even if you eat and go too high that in itself will be good information for your team and you. Food isn’t your enemy 🙂 The first weeks are hard and can be stressful, but it honestly does get easier. Hold this in your mind, take things slowly, and eat well.
 
Thanks everyone for your kind replies!
Ive now been confirmed as type 1 from oxford and this week seen the diabetic nurse specialist and dietician!
The carb counting still a mine field for me’
They arnt sure yet what my ratio to carbs is but potentially 1:15 or 1:20 i seem very sensitive to the novorapid! I cant seem to take 3 units without having a hypo no matter what i eat!!
The ratio is a bit mind bending for me!
They did mention about the honeymoon period so i really just have to see where it takes me over the next few months.
Ive been off work since my diagnosis and not done exercise so thats my next plan to get back!
Any tips from anyone?
Thanks again for all your help x
 
You can work out your own ratios @Maisiemoo They might well vary for each meal (ie breakfast, lunch, etc). A ratio can be anything, eg 1:15, 1:17, 1:8, 1:25, and so on. You might also find your ratios change over time or for any reason really.
 
Just to add, it might be obvious but don’t take 3 units of Novorapid if that’s too much for you. Count the carbs in your meal and inject what you need to ‘cover’ them by using your ratio. If you go too low, you know your ratio is wrong.

You’ll find that concentrating on one meal at a time and trying to get that right is easiest. You’ll also find that eating the same thing for that meal while you’re tinkering with your ratio will make things easier too.
 
Here is some helpful carb-counting info if you haven’t seen it already:


There’s also BERTIE online:


.
 
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