General Questions for a newly diagnosed Type 1

Hi @Jingaling , welcome to the forum.

Jingaling said:

i have gained a lot of the weight i have lost but feel like i kinda dont want to gain anymore now?

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You lost the weight because you were very ill, regaining it means your body is recovering from this illness, which is a good thing. It might take some time to settle though.

Jingaling said:

My question really is i suppose whats next ?

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I think learning how to get your blood glucose as stable as possible comes first, that's the part where you can avoid nasty complications in the future.
What type of insulin regime are you on, what insulin(s) do you use, how do you decide on the dose you take with each injection?
Do you use a CGM like Freestyle Libre to find patterns, or are you relying on fingerpricks?

Jingaling said:

Thanks for the reply, so at the minute I’m on novarapid - 8 units in the morning, 6 for lunch, 10 for evening meal and 14 for the toujeou at night .. I’ve had the libre fitted in for 3 weeks now ( changed for the first time last week) been on the injections for around 6 weeks now. Doses have been given to me by the nurse but I’m hoping to move onto a more suitable regime soon… it’s difficult for me lately to know just how much carbs I need to maintain a consistent level on my glucose levels.

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Sounds like you're off on a good start, already working out how many carbs cover how much insulin!
Ideally, you'll work the other way around, you eat however many or little carbs you want, and adjust your doses to match the carbs.
It's very common to start with fixed doses, like you are though, and work towards adjusting insulin.

The quickest way to learn is to keep tabs on carbs (you can log them in the Libre app), and before and after blood glucose. This will eventually tell you how much insulin you need for how many carbs.
Don't expect your insulin to carbs ratio to be the same during the day, so compare breakfast (if you have it) with breakfast, lunch with lunch, dinner with dinner for easier pattern spotting!
It's not a perfect system, you'll likely find on some days your insulin is like water, on other days lows keep threatening, but it's a very good starting point.

Jingaling said:

Question for everyone.. how often do you get hypo’s ?

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Depends on your definition of a hypo.
My endo is mainly interested in the sub 3 ones (2 or 3 times a year for me, usually because I did something stupid), and the ones needing outside help (hasn't happened in my 7 years of diabetes).
As per guidelines, I try to stay above 4, but I'm not worried about short drifts into the high 3's, which happens multiple times a week and is usually corrected with just a small bite of something or other.
Anything 3.6 and below I try to avoid like the plague, numbers between 3.2 and 3.6 still happen about twice a month though.

This may be completely different for others. I never wondered about this, very good question!

Happy to get back at you tomorrow, it's very much bedtime around here.

But I will answer this one quickly:

Jingaling said:

I always feel very paranoid especially when walking home recently around 3.3ml and very anxious about it

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I do not walk home at 3.3.
I sit down right wherever I am, even if it's on my bottom in the mud in the pouring rain, treat, and wait for treatment to do its job.

Walking (or any other activity) uses the glucose I'm ingesting to treat the hypo. It will take a lot longer for the hypo to resolve if I try to keep doing what I was doing, not worth the risk for me.
I still make the occasional mistake though, I'm not a saint! But in general, a hypo below 3.6 equals stopping whatever I'm doing and treat.
Here's the last time I ignored my own rule, didn't feel very good: https://www.diabetes.co.uk/forum/threads/what-have-you-eaten-today-low-carb-forum.75781/post-2687233

Welcome to the forums mate, I'm now into my sixth month since diagnosis so all your comments are still very familiar to me. One thing I will say about the weight gain from my experience, I am naturally not very heavy at all, probs 10-11 stone at my heaviest however on the day of diagnosis I was just under 8 stone. 6 months in and with relatively decent control, I'm currently up to around 10ish. I definitely noticed as I got closer to my natural weight, the weight gain slowed down a lot compared to the initial few weeks. My approach (as like you I was conscious of gaining too much weight) is basically make my food choices the same way I did before I was diabetic, try not eat too much fatty foods and takeaways, eat veg, bit of exercise etc. Everything works differently for everyone however it seems to be working for me.

If you have any questions, make sure to shout on here. This forum has taught me so much and the people here are great. Personally I think it's been 1000x more useful than my healthcare team as you really get the insight and understanding from people living with T1 and it seems there's always at least 1 person who has experienced the exact same question or issue you are looking for.

Hello @Jingaling Welcome to the forum.

Absolutely normal to have the concerns you have, it's easy to fall into the trap about worrying about the future but it's also important to live in the moment too, do the right things now and the odds of future complications are vastly reduced, I was exactly the same and now I hardly think about the future as long as I do my best that's all I can do, why worry about something that hasn't happened is my view.

Great advice above, but remember you're never alone in this, always some other t1d you can chat to here about any concerns you have, it's a minefield if you let it, but try and empower yourself with information so you are prepared for anything, great book to get is 'Think like a pancreas' written by a t1d.

Also always treat your hypo, glucotabs are my go to as I treat them like medication and no one is likely to steal them either, but 3 tabs when dropping below 3.9 and wait 10 mins, if still low 3 more. The NHS offers a 'Dose adjustment for normal eating' DAFNE course but about a year or so after diagnosis once your out of your honeymoon phase, they key is just checking your levels, it become intuitive over time and you'll not even realise you are doing it.

Best wishes - shout if you need anything.

If you use the libre try setting the low alarm at about 4.1 this will give you a bit of a buffer to stop you going actual hypo . Personally I find my libre reads lower than actual bs ,when my alarm goes off I treat as hypo even though I don’t actually feel hypo as a consequence I’ve not had an actual hypo in ages,
diabetes is all about what works for you , it’s a marathon not a sprint , all about small steps and not trying to eat the whole elephant so to speak, you’ve definitely come to the right place For help and sound advice

In my student days I would almost invariably be hypo by the time I arrived home from a night out, I think if I had my time again now with a CGM I'd actually realise (via the alarms) and fix it with a half of coke before leaving, but back then it was easy to be distracted and find the bar was closed (or 10 deep and likely to be closed soon) and I just needed to get some carbs, and home was a sure thing, even if it was a 30min walk.

I never used to take snacks out with me, I now take a funsize (i.e. small and sealed) pack of skittles wherever I go in my jeans pocket and more in my jacket.

Hypos can feel different, ranging from just feeling a bit tired, to falling over or otherwise not being able to control your muscles, not being able to talk or make any sense. I used to sometimes gradually wake up from a dream and to find myself sitting somewhere strange with something sweet in my hand - I'd either got something myself and not remembered until my BG had come up, or had concerned friends standing around me who'd been plying me with sugary food and drink.

Much easier these days with CGM and not being a student!

Welcome to the club nobody asked to join!

Alot of good advice has been given already. It certainly is a rollercoaster ride at the start but the more you do it and practice the easier it becomes. Just don’t beat yourself up when you make a mistake … this condition is alot of trial and error and doesn’t play by the rules. Like others mentioned everyone is different and try not to benchmark yourself against others too much.

To answer the hypo question I still function perfectly normal in the high 3s even though they say “4 is the floor”. I will try to have a snack or avoid alot of activity before I do just incase. Like many I find my CGM tends to overstate lows - so when the alarms sounds i will double check with fingerprick. I generally don’t feel a hypo until i am sub 3.4mmols which is rare and may happen once a month or a couple times a month.

Hi, both myself and my mother were diagnosed at about the same age as you fifty and twenty years ago. The best piece of advice she passed to me on my diagnosis was to be your own doctor. You'll find your rhythm and how you react to carbs, activity and insulin and learn to balance them all. And you'll never stop learning.

The advice I'd give you is pester your GP/nurse to get on a carb counting course asap so you can adjust your insulin to what you eat and do rather than using fixed doses and eating and exercising around that. You should be deciding your dose, not a nurse.

As for long-term outlook - as long as you avoid prolonged periods of high blood sugars then you should avoid the complications Dr Google has been terrifying you with. A high spike after a meal for an hour or two is okay. And as others have said, set the alarm on the CGM for higher than 3.9 so you can treat it before the hypo hits you. The CGMs are not 100% accurate at that level, but it will be in the ball park and a few jelly babies won't kill you.

Jingaling said:

when i asked the nurse she told me she strongly suggests i dont drink at all ever,

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Whilst you are on fixed doses and not injecting for the amount of carbs you eat it may well be tricky to balance out drinks and stuff like that - however this does not mean forever.

Some drinks have carbs, some dont, once you know about carb counting and are not just having fixed doses (ie taking a varaible amount based on carbs consumed) you can work that out - but I do know that if I go out drinking (friday night - 4 drinks maybe), I do have to make sure I eat without taking any insulin for it when I get home before going to bed but then I am having vodka and diet coke and that has zero carbs in it, if you were having beers or other drinks with carbs in them then you may be fine with no snacks or may need some insulin - but it will be trial and error to work it all out.

It will be alot easier for you when you get an Insulin to Carb ratio and can dose accordingly instead of having to work backwards all the time. Definitely try and get on a DAFNE course when you can.

Alcohol is a big curveball and we aren’t Saints so we all can’t avoid it … i know I don’t. Alcohol is one of those things that involves alot of trial and error.

Cocktails are a bloody hard type of “poison” to dose for. Most spirits don’t contain carbs at all however its the mixers and the syrups that will get you. My own way of dealing with it is as the nurse suggested have a carby meal beforehand and then i dose less then i usually would for the amount of carbs in the cocktails/drink. (You probably can’t do this bit yet). I set my CGM alarm to 10mmol and wait for my 3am wake up call to give a correction after usually ending the night with a BGL around 5mmol.

What happens with Alcohol is that the body wants to deal with it first as it is considered a toxin and stops making glucose. So after it has dealt with the alcohol it then starts to dump glucose into the bloodstream (hence my 3am alarm sounding when my BGL has reached 10mmol).

Of course that is an incredibly unscientific explanation but hey it works for me and was well tested on a 2 week cruise i was recently on!

RoughcutAU said:

It will be alot easier for you when you get an Insulin to Carb ratio and can dose accordingly instead of having to work backwards all the time. Definitely try and get on a DAFNE course when you can.

Alcohol is a big curveball and we aren’t Saints so we all can’t avoid it … i know I don’t. Alcohol is one of those things that involves alot of trial and error.

Cocktails are a bloody hard type of “poison” to dose for. Most spirits don’t contain carbs at all however its the mixers and the syrups that will get you. My own way of dealing with it is as the nurse suggested have a carby meal beforehand and then i dose less then i usually would for the amount of carbs in the cocktails/drink. (You probably can’t do this bit yet). I set my CGM alarm to 10mmol and wait for my 3am wake up call to give a correction after usually ending the night with a BGL around 5mmol.

What happens with Alcohol is that the body wants to deal with it first as it is considered a toxin and stops making glucose. So after it has dealt with the alcohol it then starts to dump glucose into the bloodstream (hence my 3am alarm sounding when my BGL has reached 10mmol).

Of course that is an incredibly unscientific explanation but hey it works for me and was well tested on a 2 week cruise i was recently on!

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Also wanted to add beer for me is basically like liquid bread the way carbs go for me so i can dose normally for it as I would most other carbs. Again something you will only learn what works through trial and error for your own body.

Have a think about carb-counting (before you get to a DAFNE course) - will help you estimate how much carbs you need for the fixed amount of insulin you have at each meal.

If you have 8 units of insulin for breakfast - how many carbs so you return to the same BG as you started at? Only way to tell is different amounts till you work it out.

For now (its a pain) but measure your cereal and read the pack to understand how many grams of carbohydrate are in the bowl you're eating.

Once you know you're eating 60 grams (or whatever) you can watch what it does to your BG on the libre - will spike up-to 2 hours then come down. At 4 hours the insulin has pretty much done its stuff, and you 'should' have returned to your starting BG if the insulin amount is correct for the amount of carbs.

If your BG is low or high - decrease your cereal or increase it till you get it to return to the starting level (or there abouts) after 4 hours.

Once you know the amount of food needed for 8 units, you know your insulin to carb ratio (in the morning at lease) so can increase insulin for a bigger breakfast, or reduce for a smaller one.

This ratio can alter throughout the day - so if you find lunch behaves differently for 6 units (calculate carbs based on breakfast ratio) then alter your ratio for lunch and so on.

Soon you will be able to alter your insulin for the three times a day - so knowing your ratios is really useful.

Also remember exercise usually drops your BG - so if you start to see your BG drop, carry some fast acting carbs (dextrose / glucose tablets or similar) so you can avoid hitting a low BG

Lots of us have been diabetics a long time - there is some horrible stuff, but good control and being careful means we can live a full life for a long long time - its not all problems, just takes some learning

Jingaling said:

is there anymore advice so that my sugars aren't in the 20s over night ? ( i'm aware the answer of not drinking is the most sensible) but i will be out for probably a handful of hours and in that time will at most have 3-4 alcoholic drink

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The reason for the eating before and after is that our livers don't like alcohol an sees it as poison that it needs to purge before doing anything else.
As a result, when we drink, our liver may stop dripping glucose which works with our basal insulin until it has cleared the toxic alcohol.
So, it is less likely that you will end up in the 20s - a night time hypo after drinking is more common than when not.

I am not a big drinking but certainly don't refrain.
But I realised I have to balance the carbs in the drink against the possibility of a night time hypo.
I find wine is best for me - it contains little carbs so I don't have to worry about insulin for it when drinking but I still need to make sure I am ready for the shenanigans from my liver during the night. There are two ways for doing this - less insulin or more carbs. The latter is the easiest, especially when you are on fixed doses.