General Questions for a newly diagnosed Type 1

[Jingaling]

Hi guys, found this forum last night and it was quite comforting reading everyones journey and experiences, mine isnt too dissimilar to alot of people. went to the doctors with other issues and ended up finding out i was diabetic ( althought wrongfully diagnosed as type 2 at first ) after 6-8 weeks on Gliclazide tablets and losing a few stone i finally got rightfully diagnosed.. on the day i went to the specialist team my Ketones were 4.1 !! thankfully im around 5 weeks into it and have lost a lot of the symptoms ( thirst, peeing constantly through the night, weight loss ) My question really is i suppose whats next ? i have gained a lot of the weight i have lost but feel like i kinda dont want to gain anymore now? so i try not to eat breakfast ( i never ate 3 meals before my diagnoses ) and another thing is finding out little things which a diabetic nurse wont really tell you or wont experience .. im 35 years old and didn't really think much about the future but now i worry more about the risks this illness can have later in life. so any tips would be gratefully appreciated , thanks

 

[Antje77]

Hi @Jingaling , welcome to the forum.

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

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.

My question really is i suppose whats next ?

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]

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. I think the part where you said about avoiding nasty complications is what worry’s me most.. it took me a while to get my head around the fact that this is a serious illness and I think I’m still naive at how dangerous it is.

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

 

[Antje77]

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.

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.

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

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!

 

[Jingaling]

Just interests me because I start to feel it around 3.9, such a strange feeling.. really hard to explain to someone who doesn’t have diabeties. Sometimes I get into the low 4’s and it will just naturally rise on its own without me doing anything and other times I just need something kick me back up a bit but it’s hard to know when to act and when not too.. i was curios to see how people act when their blood start to drop, today I didn’t eat anything for breakfast and had my first meal at 6pm ( it was a Chinese takeaway with I would guess around 100g carbs) because I was late having it I’ve only given the 6 units I was told to have fixed for my middle meal, there plan was to then have another very light meal with the 10 units but I haven’t felt the need for food and now find myself with a reading on my libre of 20 ml.. it’s the first time in maybe 7-10 days and I have been drinking a lot the last few hours.. I haven’t experienced this thirst for a while and I do not miss it !! Oh one other thing I wanted to mention have you experienced heart palpitations? I noticed recently at certain times this happening and I’ve never experienced it before.. I did read somewhere it’s a side effect of too much insulin? Just wondered whether you’d read anyone else on the forum experiencing anything similar?

 

[Jingaling]

Oh and another thing ( sorry I’m just really intrigued) how do the sub 3 hypo’s feel that you have a few times a year differ to the ones in your mid 3s? And have you ever feinted ?? I always feel very paranoid especially when walking home recently around 3.3ml and very anxious about it

 

[EllieM]

Oh and another thing ( sorry I’m just really intrigued) how do the sub 3 hypo’s feel that you have a few times a year differ to the ones in your mid 3s? And have you ever feinted ?? I always feel very paranoid especially when walking home recently around 3.3ml and very anxious about it

I've had some bad hypos, particularly before cgms were available, and I definitely feel worse the lower I go. Below 3 my judgement is definitely affected, which is one reason why I try to treat so I don't go below 3. But my cgm (dexcom) isn't desperately accurate once in hypo territory so it might say 3.0 while my glucometer says 3.6.

Yes I have been taken to hospital for hypos 2 or 3 times in my life (hypos during pregnancy pre cgm were not a fun experience).

I try to always carry glucose (or equivalent) with me so that I'm not struggling to find hypo treatment while hypo. (I remember being in a shopping centre once and struggling to work out what I needed to to in order to get some carbs - the human brain does not work well when starved of sugar). Likewise I have a jar of glucose tablets by my bed so should I wake at night (confused and wanting to go back to sleep) getting some glucose is as easy as possible.

And as regards worrying about complications, the prognosis for newly diagnosed T1s is far better now than when I was diagnosed in 1970 (pre glucometer). It is much easier for T1s to maintain normalish blood sugars than it used to be, and complications typically happen after many many years of not so great blood sugar control. (Not that you can't get complications earlier, there genuinely seems to be a certain amount of luck in the process, and some people have metabolisms that are easier to balance with insulin than others, but modern treatments for T1 continue to improve.)

 

[Antje77]

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

But I will answer this one quickly:

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

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

 

[TJM13]

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.

 

[Juicyj]

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.

 

[Ushthetaff]

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

 

[SimonP78]

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!

 

[RoughcutAU]

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.

 

[Jingaling]

Appreciate all the feedback guys.
Question if anyone can help? its something i seem to struggle with, so obviously at the minute im being told to stick to a specific level of units at certain meal times so for my break i take 8 units.. i only had a bowl of cereal which i reckon was an average size portion. its been 2 hours and im hungry again but im never sure if its the case where im not supposed to eat? or is it im not supposed to eat a certain amount of carbs until i can inject more insulin?


and secondly, im off out later tonight my friends are wanting to go to the pub as it was my birthday yesterday. Im not a big drinker by any means im usually happy having a couple and thats me but one thing is i like the worst kind of drinks a diabetic could have and thats cocktails! this will be the first time since i have been diagnosed where im probably going to not have diet coke all night and actually have a couple of drinks. when i asked the nurse she told me she strongly suggests i dont drink at all ever, after i told her thats not going to be the case she said to make sure i have a meal before i go out and make sure i eat when i come home. 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 drinks.
thanks again for the feedback/help its really comforting to be able to gain knowledge from people who i know have gone through the same challenges.

 

[Olddogandgrump]

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.

 

[Rokaab]

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

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.

 

[RoughcutAU]

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]

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!

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.

 

[CheeseSeaker]

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

 

[In Response]

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

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.