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Just diagnosed and worrying

Discussion in 'Young People/Adults' started by Jazz97, Apr 16, 2019.

  1. Jazz97

    Jazz97 Type 1 · Well-Known Member

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    Hi, I'm 22 and just been diagnosed with type 1. It's my first day at home and doing everything for myself.
    I'm trying to be calm, but my glucose was just at 32.5 a couple of hours after breakfast. I did have quite a big breakfast, but this is still just messing with my head a bit. I don't think I need to worry, because obviously they haven't sorted out my dosages yet, and my ketones are fine.
    I guess I'm just looking for some reassurance if there is any, and wondering if other people had this when they were first diagnosed.

    Thanks
     
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  2. Resurgam

    Resurgam Type 2 (in remission!) · Expert

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    Although I am not one of the insulin users, be assured that this is the place to find people who have been through the process and won out - they'll be along with advice and reassurance any minute.
     
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  3. Diakat

    Diakat Type 1 · Expert
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    Totally understandable to be worried, it will get easier.
    Right so - you did actually take your insulin? I ask because Even now I have been known to start eating and then think “doh”
    Have a drink of water and test again.
    It is probably just as you say, early days and not the right dose yet. Also medics like to bring you down slowly to avoid eye damage.
    How all feels better soon.
     
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  4. Madmaureen

    Madmaureen Type 1 · Well-Known Member

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    Hi there I was diagnosed when I was 21. And didnt know what the hell it was I had either!!

    I got there in the end but it is trial and error most of the time dont worry just live your life like I have done and you will achieve as much too!
    Type 1 fir 50 years worthwhile medal to prove it ..
    Keep on top of it and don't let it win!! IMG_20190313_132028.jpg
     
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  5. Juicyj

    Juicyj Type 1 · Expert
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    Well done @Madmaureen :)

    Welcome @Jazz97 :)

    I felt exactly the same as you, but also felt really disappointed in not getting between 5-9 mmol/l which was what my nurse on diagnosis was telling me I should be, this is completely unrealistic when diagnosed as you're still adjusting and getting your dose right. There's alot to take in on diagnosis, bit like wading through mud is the way I felt, your body has been through an awful lot and it will take a good few months to recover fully, so take it easy, one day at a time, don't get floored by numbers is my best advice, NHS offer guidelines which will be achievable in time, but right now get used to testing and injecting and getting into a routine if you can.

    Record your results, it will help when you speak to your nurse about adjusting your insulin doses and keep talking to others, it's vital to get support so anything you need please shout, best wishes J
     
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  6. LooperCat

    LooperCat Type 1 · Expert

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    Hi, and welcome to the club none of us wanted to join... I was diagnosed at 23, two decades ago. It’s scary and baffling at first, especially the first time they release you into the wild to cope alone. So:

    You’ll get the hang of it.
    It will get easier.
    You’ll learn fast!
    Promise.

    Meanwhile, do drop by the “Type 1 Stars” thread on this forum where you’ll find a few of us T1s talking rubbish about not just how we live with it but an awful lot of random stuff too. Most of us have been at it for a long time now, and we like to bring newbies into the fold and help where we can x
     
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  7. porl69

    porl69 Type 1 · Well-Known Member

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    Hi @Jazz97 and welcome to the T1D club
    32.5 is high. Are you sure you injected? What did you have to eat for breakfast? How much insulin did you give yourself?
    Glad t see you have come on here to ask.....
    Only been type 1 for 48 years so am just getting used to it! :hilarious::hilarious:. Even after this long I am still learning
    At the moment everything is going to be confusing for you. DON'T give up. It will take a time to get you sorted and onto a regime which will work for you
    How much info was you given at the hospital? Was you given a telephone number for your DSN (Diabetic Specialist Nurse). Give her a call if you are worried.
     
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  8. Jazz97

    Jazz97 Type 1 · Well-Known Member

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    Thank you,

    I've been recording my results and have spoken to a nurse now. Dosages have gone up now, so hopefully everything will sort itself out
     
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  9. SB.25

    SB.25 Other · Well-Known Member

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    Hiya, I think it is relatively usual to feel scared and worried when first diagnosed. I was only diagnosed in November 2018 and felt worried, embarrassed and slightly ashamed. I didn't even tell my mum that I had been in hospital with suspicions of diabetes as I was embarrassed - which seems silly given that she is a T2 diabetic!!!

    I also thought the diagnosis would ruin my life and that I would be different to everyone else.

    Whilst I do not yet have a 'diagnosis' of which type, I am treated as a T1 so can sympathise on how scary it can be to start injecting insulin.

    Despite only being recently diagnosed, I think I have achieved a lot in the short amount of time. I sat 6 university exams and managed to get a first in each exam, I went on a city break with friends including going our drinking, I faced my fears and done a Go Ape treetop challenge and much more.

    You can still do all the usual things your friends do just with slight adjustments :).

    You will do just fine :)
     
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  10. Jazz97

    Jazz97 Type 1 · Well-Known Member

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    Well this week has been full of ups and downs. Both mental wise and BS wise. Thankfully my ketones seem to be staying down, but my BS has just shot up to 28. Admittedly this was 2 hours after eating a fry up, but this is the highest it's been in the last few days.
    It being a bank holiday weekend doesn't much help either, as I cant even speak to a nurse until Tuesday and could really do with some reassurance that my levels will go back down.
    It's especially annoying as I was told to eat as normally as possible without overdoing it on the sugar. But I also dont really know what I need to look out for.
    I know it's only been one week and things will get better, but right now I'm frustrated and scared
     
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  11. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Deep breaths, @Jazz97 , deep breaths!

    28 is obviously too high, but provided the ketones are in range and you have insulin in you, it's not dangerous, but do keep an eye on the ketones.

    You'll presumably have injected for the meal, so have a think about the amount of insulin you took, how many carbs were in the meal and where your bg was at before the meal and then discuss with your dsn how the dose size can be adjusted.

    It's not a failure - it's just part of the learning curve which we all go through. After a while, you'll have learned from mistakes, and be much more confident in saying, ok, that meal will need x units.

    Maybe too early for you to try this just yet, but a lot of us find that 'pre-bolusing', injecting a while before the meal, usually about 20 mins or so, gives the insulin time to get to work before the food digests.

    People new to this often experiment by eating the same meal a few days in a row and starting with a 5 min pre-bolus and adding another 5 mins to find their sweet spot. I could eat a 70g meal and if I didn't pre-bolus I'd be away up at around 15 or so, but with a 20 mon pre-bolus, it'll barely touch 7.

    Like I say, though, it does take a bit of trial and error - there's been a few occasions where the insulin has kicked in hard long before the meal has turned to glucose and I've ended up a bit hypo before the food has caught up. Brown rice and pulses can take a while to digest, so I'll normally reduce the prebolus timing for those down to only about 5 mins or so.

    You said you tested about 2 hrs after the meal? Bolus insulin tends to be active for about 3 to 5 hrs, so it's likely that the remaining iob (insulin on board) will still be working, so it's probable that it will drop, but you won't know for till about 4 hrs are up.

    Testing after 2 hrs is more of a T2 thing - what's more important for T1s is seeing how it's played out at the end of the bolus activity about 3 to 5 hrs later.

    One of the most useful things to know is how much insulin you have on board. Some meters do that, and cgm apps like the android one xDrip+ do it even if you're not using it as a cgm.

    For example, if I was sitting at 10, 15, 28 or whatever, if the iob indicator on xDrip+ was telling me I only had 1 unit iob, I'd be saying that's not enough to bring me down and I'd do a corrective shot to lower it, whereas if it said 6u with 3hrs to go, I'd say, ok, that last shot is peaking, still a fair amount, so I'd leave it to see if it drops ok.

    I'd be tempted to wait till about 4 hrs after the meal when the last injection has more or less run its course and see what it looks like then.

    If it's still very high, you might want to think about a correction dose - taking a few units of fast acting insulin without food. We can't advise on doses, it's something you'll need to experiment with as we all vary.

    As a very general starting point, official courses like DAFNE teach that 1u will drop by about 2 to 3. But at very high levels, insulin has a difficult job to do before it drops. Although we can't advise on doses, if you're still at 28 after 4 hrs, you've got safe room to experiment with corrective doses without getting anywhere near a hypo, and remember that if you overshoot with the size of dose, some lucozade will sort it.

    Yes, it can be a scary situation, but, believe me, it does get a lot easier when you become more familiar with how insulin works. I'd highly recomnend getting cgm - being able to actually see how your bg is moving makes it a lot easier to "steer" it instead of the guesswork which strips involve.

    Here's where to get xDrip+ if you want to have a go with tracking iob:

    https://github.com/NightscoutFoundation/xDrip/releases

    Click the "Assets" tab and download the .apk file.

    You need to go into Settings/xDrip+ Predictive Simulations Settings to switch it on.

    Good luck!
     
  12. Jazz97

    Jazz97 Type 1 · Well-Known Member

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    Thank you,
    I've calmed down a bit now!
    My levels have dropped back round to where they have been (still too high, but normal for me at the moment).
    I dont really want to start taking extra insulin just yet without permission from the nurse, but that's definitely something to take into consideration for the future.
    I'll have a look into the xDrip+ and see if that could help me.
    Thanks again for the advice and encouragement. I'm feeling very in the dark at the moment, not helped by the fact that I keep googling things I probably shouldn't. Still, trying to keep positive, but blips are inevitable I guess
     
  13. flowet

    flowet Parent · Newbie

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    when my daughter was diagnosed a year ago at 17 she started off on a set does of ins ulin, then after a week of getting used to injecting herself they started her on carb counting and adjusting her insulin to suit. this year shes running the london marathon!
    it will get easier, jyst listen to your nurse and try not to panic!
     
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  14. Scott-C

    Scott-C Type 1 · Well-Known Member

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    That seems to have worked out well - getting back to your starting level shows that the bolus amount was correct.

    Here's a tip: T1 is inherently unpredictable and it will always throw unexpected fliers. Injected insulin doesn't work in the same way as pancreatic insulin. Some of it gets destroyed travelling around the body, which is why 5u one day might act differently to 5u the next day.

    The reason I mention this is that we've seen many newly dx'd T1s posting that they've been recently dx'd, they've read all the books, they've totally caned it, they have their ratios figured out.

    But then, a few months later, they post that they've become totally disillusioned with it because it's just not playing by the rules.

    Don't be surprised if that happens to you. It's T1, it does unpredictable things.

    Fortunately, none of them are really that dangerous. It is nice to see a nice run of in range readings, but, honestly, if you get the occasional hypo knock down to 2.5, some lucozade or dextrotabs will sort that, and if you make a mistake with a fish supper and end up at 12 or 15 for a few hours, that's not a big deal in the wider scheme of things.

    I've been doing this for 30 yrs, I've got some very bling cgm, I know a lot about how insulin works, but I still make mistakes and end up above 10 from time to time. I don't worry a jot about it, because that stuff happens with T1.

    The point I'm making is not to fret too much about your levels right now. You'll pick up ways to tighten them up over the next few months, but, psychologically, also be prepared to deal with situations where levels are doing a flier for no apparent reason. It's a normal part of being T1, so don't sweat it too much when it happens, just take some time to nudge it back into range.
     
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  15. cireland

    cireland LADA · Active Member

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    Really good advice! - I can't add to this!
     
  16. jane1754

    jane1754 Type 1 · Member

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    Welcome Jazz97! Yes, it's a tight-rope walk into the dark from now on, but take comfort that loads of Type 1s have been there before you and wobbled but not fallen off. I've been Type 1 for 10 years now and am still learning, because every day is different. The advice I got in hospital when first diagnosed was, frankly, not a bit of help and when I look back I was amazed at what they gave me to eat - I've learned better since. When I was a newbie I read everything I could get my hands on to try to understand what was going on. I learned from this and by experiment what works for me. There are some good books around. Dr Cavan and Dr Bernstein come to mind as really helpful. Don't worry, it will all settle down.
     
  17. Wallin

    Wallin Type 1 · Member

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    Hi,
    I had my pancreas removed four years ago, and on leaving hospital was given needles, syringes, and insulin, and told that a diabetes nurse for my area would contact me.
    She did, and brought masses of leaflets, and information with her. All of which was totally baffling to a very nearly diagnosed T1.
    Like you I was told to keep a record of BG before meals, and two hours after, and told how much insulin to have before each meal.
    Reading the literature I was terrified when my BG rose to the 20+ I even packed a bag to take to hospital if I went hyperglycaemic. I frequently went hypoglycaemic too.
    I woke every night at one hour intervals to test my BG levels. I was anxious all the time, and running to my GP almost weekly with concerns.
    I started asking to go on a DAPHNE course, but was told that there wasn’t one in my area. Then was told that there was a waiting list of a year to attend the course. In desperation I rang round hospitals within a thirty mile radius, and finally found one that could offer me a course within six months. Once I attended the course there was no looking back. Yes, I still get the occasional high or low, but I now know how to treat them, and no longer go into panic mode. Knowledge is everything. You are dealing with a dangerous unknown, and it is very scary. My best advice to you is to get onto a DAPHNE course at a reputable diabetes centre. You won’t be expected to do any tests. Everyone on the course is either new to their condition or having problems. It’s very useful to meet others who may have been T1 for a while, and can add to your experience.
    I know how to adjust my dose. How to manage sick days. Carb count, etc. but most of all not to panic.
    Good luck to you, and don’t expect to know it all, or how your body reacts so early on.
     
  18. Jazz97

    Jazz97 Type 1 · Well-Known Member

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    Thank you! I definitely want to go in a DAFNE course at some point, but have been told that I need to be in a routine of taking insulin for 6 to 12 months first. A bit frustrating, but I guess I get it.
    I know things will work themselves out eventually!
     
  19. Wallin

    Wallin Type 1 · Member

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    Even though you can’t do the DAPHNIE course yet, I would try and get your name on the waiting list.
    I would still try and get your name on the waiting list now, because it could be at least six months before there is an availability place.
     
  20. Alternative Diabetic

    Alternative Diabetic Type 1 · Active Member

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    I still only use the old table for glucose so not sure what 32.5 is ...However I tempered how daunting it was when I was first diagnosed out the blue when I was 33 years old ... read my blog www.alternativediabetic.com it may give you some help you have to scroll down to bottom to see how it all started ... all I can say is a low carb diet is the way to go ... your sugars won’t spike so much , also were you over weight when diagnosed or is it an issue with your pancreas ?
     
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