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Newly Diagnosed -Type 1

Discussion in 'Newly Diagnosed' started by Xal, Feb 6, 2020.

  1. Xal

    Xal · Member

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    So I've never been on a forum before and this is all new to me so please forgive me if I overshare! There has been a lot of new things in my life recently, so I guess all part of the experience, however as I am 50 I really wasn't expecting this.

    I started getting ill in January 2019 and slowly got worse and worse - endless visits to the GP with them giving me a different reasons each time for the problems. In mid-October I collapsed and was admitted to A&E - I don't remember much of the next week as I was unconscious. When I came around I was told that I had been in severe DKA and almost died. The hospital consultant told me I was lucky to be alive but I had Type 1 Diabetes and would need to inject myself for the rest of my life in order to stay healthy. I was sent home with needles and insulin pens, very blurry eyesight and a large amount of fear.

    So my diabetes journey started 4 months ago and I have to admit that I do feel lucky and very thankful to have survived the DKA however little did I realise (at the time of being released from hospital) what was to come. The rollercoaster ride of hypos (and the fear of not waking up in the night) and hypers - not to mention the endless injections, carbo counting and carrying "my kit" with me where ever I go. I have to admit I am struggling with it all.

    So ....... does it get any better?
     
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  2. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

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    Hi there. Sounds like a traumatic diagnosis and now you are stuck with the day to day dramas of being diabetic. All I can say is that it does get better because it becomes so familiar however the hypos and hypers should not be part of your daily life. How is your diabetes team on these practical matters?
    Many many diabetics fail to hit their target numbers, just like you, because there's more to it than counting carbs and guestimating the insulin bolus so please don't feel disheartened but rather get a bit more pushy with your team and ask to go on a diabetes education course e.g. Dafne where you will finesse the carb counting amongst other things but also have some peer support.
    There are some useful books on the topic of type 1 but I always mention this one because it is free and written by a non doctor type 1 plus very optomistic and practical.
    https://brightspotsandlandmines.org/
    So welcome to the club. You didn't want to join but as they say what doesn't kill you....
     
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  3. xfieldok

    xfieldok Type 2 · Well-Known Member

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    As a T2 I won't offer any advice, but you have reached the best place on the internet for all things diabetic.

    So, welcome to the forum, you will get loads of help and support.
     
  4. Xal

    Xal · Member

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    Thanks for the tip about the book- I will check it out. I need all the advice I can get.

    In the last 3 months had about 25 hypos and the maybe 35 -40 hypers. From your reply It seems that maybe that is more fluctuations than normal? The doctor just tells me it is the start of my journey and I am in the honeymoon period and it will settle down. It is frustrating because I feel like I am doing everything I am supposed to and my blood glucose is wildly swinging and makes daily life difficult.

    I will ask again to go on a Dafne course but I keep being told that I have wait at least 6-12 months but perhaps as you say I need to push a bit.

    The diabetes nurses have been amazing and I don’t know what I would have done without their support.
     
  5. Antje77

    Antje77 LADA · Moderator
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    Depends. Were those 25 hypo's mostly the ones just below 4 and easily caught or very low ones where you almost passed out? Were most of those hypers above 20 or only higher than 10?
     
  6. Jaylee

    Jaylee Type 1 · Moderator
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    Hi @Xal ,

    Welcome to the forum. Yep, there are times when it can feel like nailing jelly to a wall..

    What insulin/s are you prescribed?
     
  7. Xal

    Xal · Member

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    About 60% hypos between 4-3 and about 40% below 3. Most of the hypos at night but some during the day - none so severe that I have gone back to hospital. Although I got so scared about the nighttime hypos that I bought libre sensors and miao miao to wake me up before my BG dropped below 3.5. However seems impossible to get sensors at the moment.

    Hypers all above 13 although less than about 10% above 20. Generally my HbA1C has fallen from over 9% to 7.1% which is definitely progress.
     
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  8. Xal

    Xal · Member

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    Hi!- I am on Levermir and Novorapid. I know nothing about different insulins - does that make a difference?
     
  9. Jaylee

    Jaylee Type 1 · Moderator
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    Hi,

    Not at this early trial & error stage of the game. (Don't worry.)

    It just helps to know what you're using with regards to the appropriate advice given. :)
     
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  10. Antje77

    Antje77 LADA · Moderator
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    At what time do you take your Levemir?
     
  11. Xal

    Xal · Member

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    About 11 in the morning and 11 in the evening - I try to keep 12 hours between doses. I was on a dose of 7 morning and evening but I have changed after advice from the diabetes nurse to 5 at night and 8 in the morning. I am having less hypos at night not this does but I go to bed with a good BG reading of between 7-9 m/mol and then BAM it drops at about 4am. Usually if I catch it before it is too low some orange juice will get it back up quickly. Then before breakfast in the morning it can be ridiculously high.
     
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  12. EllieM

    EllieM Type 1 · Well-Known Member

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    You shouldn't be going hypo at night if your Levemir (basal) dosage is correct. It is supposed to keep you steady throughout the night at whatever level you went to bed at. Talk to your nurse about this. It's definitely not normal to go hypo at night. Plus, having to wake at 4am to have hypo treatment is bound to put stress on you and add as another reason for a high in the morning. Your liver pumps out sugar when you go low so it's very easy to overtreat a hypo and get a "rebound high".

    But your doctor is right, 3 months is very early in your diagnosis and things should get a lot easier once you have got your doses right and got used to the routine.

    Good luck, things should get much better.
     
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  13. Mad76

    Mad76 Type 1 · Well-Known Member

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    I was diagnosed in April so around 9 months for me. It does get easier, well I mean you get used to the new way of life anyway.
    My bg are still up and down so I wont advise you on that
    I will say this forum is super helpful. I have libre on prescription and the miomio which are both great. Plus I've read sugar surfing and think like a pancreas. Also bought carbs and cals book. All these were recommended to me on here, and are excellent reads.

    All the best on your journey !
     
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  14. Ushthetaff

    Ushthetaff Type 1 · Well-Known Member

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    Hi welcome to the club , not the one you really wanted to join but your in it now and as you will find out better off for it.
    Diabetes is an absolute minefield at first , and now there is so much information it can be confusing to say the least. he first thing to say is try not to panic. It takes time to get use to your body as you have to look at it slightly different to before.
    even though you may think it now diabetes isn’t a jail sentence , as many here have said try and go on the carb counting course it will help , as far as the night time hypos are concerned very few people have hypos in the night that they don’t wake up from, something to do with the liver bumping up your blood sugar , ive had diabetes 40 years and I don’t know the technical jargon for it but why should I lol I just know it does it. Good enough for me.
    By joining this forum you have probably made the biggest step as it means you are willing to talk , and as you will find out there’s a lot of talking goes on here and I would say most of it is excellent.
    It’ll take time but I and hundreds on this forum can assure you it does get easier , but to coin a phrase an old foreman of mine used “ don’t try to eat the whole elephant” think it means don’t try to do everything at once. ( hmm now thinking what eating a whole elephant would do to my blood sugars lol)
    Anyways welcome and all the very best on you new journey and don’t worry it will all be ok
     
  15. Waterfall 888

    Waterfall 888 LADA · Well-Known Member

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    Glad you posted. I am a newbie of 4mths too who also went into a type 1 diagnosis through a diabetic coma. I found lots of eating avoided hypos especially wholemeal food. Eating wholemeal toast before bed helped eliminate night time lows. During the day I ate every 2 hrs only fruit - berries, keeping carb snacks to 10g max and dairy/veg/meat.snacks. In honeymoon period now, off basal insulin and taking low doses of bolus only when I eat carbs. Not ideal eating carb free , meat, veg and cheese only makes me lose too much weight. If I eat carbs my bg goes very high. Don't have the bolus dosage right and I might need to get back on basal. Had no education about carb counting. I understand when you say it affects your day. I find it all exhausting and try not to let it take over my day. But you can't ignore diabetes. Wish you well on your journey.
     
  16. Xal

    Xal · Member

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    @EllieM
    Thanks for the advice - I am definitely going to discuss with me diabetes nurse as it has been exhausting having the disturbed sleep due to the hypos. Glad to know that if I get the basal dosage right that I might get some control over the nightime hypos!
     
  17. Xal

    Xal · Member

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    @ Mad76
    Sounds like I am in good company! It is nice to realise that I am not alone and that others have walked the same path and can guide me. Thank you for your support.
     
  18. Xal

    Xal · Member

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    @ Ushthetaff
    Well I have to admit I definitely didn’t want to join this club but seems like the people are fantastic. It is certainly a huge learning experience and I have to admit it is a bit overwhelming all the information and things I am having to learn. Really helpful to have such positive messages from others - thank you!
     
  19. Xal

    Xal · Member

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    I am really sorry that you had a similar experience of diabetic come - it is pretty scary! I am currently a bit scared of eating anything let alone carbs. I also have coeliac disease which makes everything a bit more fun. Sounds like you are also struggling with figuring out how what you eat affects everything. I hope that I am able to get to a place where it is not exhausting and it doesn’t take over my day. I guess it is all part of the journey- I will try and stay positive and
    keep learning.
     
  20. Waterfall 888

    Waterfall 888 LADA · Well-Known Member

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    @Xal
    Recently changed my diet and bg is 5 - 8'6 mmol most of the time. No hypos :) but goes up to 12mmol during the night or after meals. This rise only happens when I eat wholemeal toast before bed and certain foods like sweetcorn or lentils. With the help of my diabetic nurse to reduce my insulin - checking in with her daily with my bg numbers and the dietician to make sure I am eating a balanced diet - I removed all carbs (bread, pasta, potatoes, rice) except the before bed slice of gluten free toast and only eat meat veggies and dairy free cheese and dairy free milk. I don't eat fish but that's also good for you to eat. Reading the book bright spots and landmines confirmed this was a good way to manage diabetes. I am going to read Dr Bernsteins book too. I am still in the honeymoon and don't need basal insulin. I take 1.5 units of fiasp fast acting with food 3 times per day with carb free meals. Having stable bg makes such a difference to my life. I also have Gerd and recently got labrithitis. It frees up.space to focus on other areas of my health. It will be tough to stick to this no processed home cooked wholesome diet. I have a sweet tooth. I saw in hospital what can go wrong. Am trying my best to keep well and have a happy normalish life. Here's to good health and calm minds :)-
     
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