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Newly diagnosed and worried about life expectancy

Discussion in 'Type 1 Diabetes' started by Emertype1, Nov 13, 2019.

  1. Emertype1

    Emertype1 · Newbie

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    Hi I'm a recently diagnosed 28 year old female type 1. They told me I don't fit any real bill and I was called into a&e with the worst DKA the hospital had seen without symptoms....5 days later I'm out and have been told they need to treat me as a type 1 ...their understanding of what happened to my pancreas doesn't matter as it's shut down either way.
    I've googled everything...from health complications to life expectancy and
    I'm having real problems with the idea I'm going to lose 12 years of my life?! Recently married and really trying not to let the diagnosis affect my mental health. Any help with the whole mortality side of it?
    Are eye and kidney problems a 100% given or can I avoid these things?
     
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  2. Mike D

    Mike D Type 2 · Expert

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    Nothing's a 100% given. @Jaylee @urbanracer are very clued up on T1. That's a prompt to them. The "12 years lost" is not true either.

    There are a heap of T1s here who know their stuff
     
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    #2 Mike D, Nov 13, 2019 at 8:19 PM
    Last edited: Nov 13, 2019
  3. therower

    therower Type 1 · Well-Known Member

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    @Emertype1 . Stop, stop and stop googling.
    Welcome to the forum.
    You’re at the start of a new journey in life. Being diagnosed 28+ yrs ago was the start of my journey.
    Hand on heart I can honestly say I’m healthier and more likely to see old bones than I was back then.
    Diabetes requires a lot of input, it has to be accepted, you can’t ignore it and it’s no use trying to fight it.
    There is so much to learn it’s pointless even starting to worry about it, take each day as it comes, try to learn little and often.
    Ask questions no matter how trivial they might sound.
    Reasonably good control consistently will make you an unbelievably strong person, mentally and physically.
    There are a lot of helpful people on the forum who I’m sure will be along to have a chat as well.
    Positivity is the most important aspect of living with type 1.
     
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  4. therower

    therower Type 1 · Well-Known Member

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    @vic hill . Maybe this member could allay some of your fears.:)
     
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  5. miahara

    miahara Type 2 · Well-Known Member

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    Hi and welcome Emertype1.
    It's easy to say, but stop stressing, it doesn't do you any good, in fact it's probably worse for your health than diabetes. You'll find as you browse the forum that that are very many T1s who have happily managed it for donkey's years are thay are well, healthy and happy.
    When I was diagnosed T2 it was a bolt frrom the blue and three days later a very good friend wss diagnosed T1 after a similar hospital expereince to yours. He adapted to D better and faster than I did and lives a very complete and happy life with excellent control over his blood glucose. I've now more or less caught up with him as my pancreas has packed in and I now inject insulin too. But I've also found the insulin is giving me great control and I'm experiencing no health issues.
    Odds-on you'll still be around in 50 years time!
     
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  6. urbanracer

    urbanracer Type 1 · Moderator
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    Hi @Emertype1 ,

    Welcome to the forums.

    I'll start by endorsing what the @therower has already written above.

    All I would add is that taking good care of yourself and watching those darned glucose levels stacks the odds massively in your favour.

    Although I don't think it's possible to give cast iron guarantees with this condition we have some people here who have been living with diabetes well into their 80's without complications.

    Much of the doomsday predictions for our diabetic outcomes are steeped in history and in all honesty it wasn't too long ago that it would have been true. Personal glucose testing meters haven't been around that long in the general scheme of things but they have made a massive difference to blood glucose monitoring.

    So take a deep breath, read up and inform yourself. Being here, is a great start too! (But then I would say that wouldn't I.)
     
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  7. Jaylee

    Jaylee Type 1 · Expert
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    Hi @Emertype1 ,

    Welcome to the forum.

    I would agree with @therower 's sentiment. If you were to google a "headache" it's easy to find some darker diagnosing on the matter? ;)

    Congratulations on your recent wedlock status. :) Sorry about the T1.

    Regarding the T1 diagnosis; take it in bite sized chunks. Your story hasn't been written yet. So where's the "bad news?"

    Your hopes, dreams & aspirations didn't get exchanged for a bag of medical supplies...
    By all means ask questions you're unsure of..

    Wishing the very best!

    J>
     
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  8. annliggins

    annliggins Type 1 · Well-Known Member

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    Id echo everyones replies on here . Yes , its a lifetime commitment , yes you'll make mistakes , yes you'll learn by those mistakes ...but by the time youve learned alot and gained control ( which you will ) , this thing will be a pest thats all
    Ask away on here , help is at hand and a problem will be halved x

    Edited by Mod
     
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    #8 annliggins, Nov 13, 2019 at 10:04 PM
    Last edited by a moderator: Nov 13, 2019
  9. EllieM

    EllieM Type 1 · Well-Known Member

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    Take all those life expectancy threats with a severe pinch of salt (or sugar :)). When I was diagnosed age 8 49 years ago my diabetic T1 mother was in tears, she thought I was going to die before I was 50... She made it to 77 with the cause of death being the fact that she smoked for 50 years, not that she'd been diabetic for that length of time. And glucometers only became available in the 1980s, before that the only way we could test our blood sugars was to do a chemistry experiment on a urine sample to see how much sugar was in it (and sugar's only excreted once you reach a bg of 10). Remember all the figures now quoted are based on people who may have had decades pre glucometer.

    A cure: they've been promising me one in 10 years my entire diabetic life, so I've sort of given up, but treatment has improved so dramatically, even in last 10 years, that I'm not too bothered. For you young T1s, yes I think there's really a chance, but don't act on that assumption.

    As my friends slide into late middle age I start to feel that I am one of the lucky ones health wise. My diabetes is an almighty pain but there are things I can do to improve my control, and it's my control, whereas so many other people are completely dependent on the luck of the draw as to whether certain drugs may help them.

    And on the plus side, all those blood tests mean that non-diabetic health issues get picked up relatively quickly....
     
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    #9 EllieM, Nov 13, 2019 at 11:49 PM
    Last edited: Nov 14, 2019
  10. Shannon27

    Shannon27 Type 1 · Well-Known Member

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    Hi! I'm so sorry to hear you've been in hospital with DKA, it's absolutely horrible!

    Best thing to do, try not to worry about everything that can go wrong. It probably won't if your diabetes gets controlled properly! There's no reason a T1D can't have the same life expectancy (and life quality) as everyone else, it just means you have to work at it a little more. I'm hoping for my first child in the next couple of years and i'm worrying a little but feeling reassured that there really is so much support for us out there. We are so lucky to have the NHS!

    Eye and kidney problems are definitely NOT 100% a given. These tend to arise due to poorly controlled blood sugar levels over a period of time. You will get free diabetic eye tests every year to check the blood vessels at the back of your eyes, and regular blood tests at the hospital to monitor your HbA1c (or average blood sugar level) and kidney function.

    At 28 years old i can understand its a massive change in your way of life - I'm 24 and i've been T1D since i was 4. It will take a while to get it figured out in your head. Don't worry about years dropping off you if there's a couple of hiccups on the way. They won't. Very few of us have absolutely perfect control 100% of the time. We drink, we like sweet things, we're human. Plan your diabetes management around your life, and not the other way around. :)
     
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  11. porl69

    porl69 Type 1 · Well-Known Member

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    Hi @Emertype1 and welcome to the forum

    Firstly ignore Google! You will get so much **** of there it will scare the life out of you.
    I have been type 1 for 49 years and plan on going for a long time yet. As long as you look after yourself and keep in targets there is no reason you wont have a long and successful life.
    Any questions/queries you have get them posted up on here. There are a load of VERY knowledgeable type 1s on here who are more than willing to help out
     
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  12. Rokaab

    Rokaab Type 1 · Well-Known Member

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    I agree with many of the posts and definitely ignore Google (looking up many medical issues on Google is generally a bad idea cos most of the time, somewhere you get to will say its cancer).
    I'm another one who is racking up the years (42 so far since diagnosis), not as long as quite a few members though, just try and manage it as best you can (sometimes it will just not behave), and whilst you have read that diabetes can take time off your life, there's not much that doesn't (personally I don't want to live to 100 anyways), when I was young, T1's were told that they didn't really need to think about a pension (they didn't expect me to get past 35 apparently - ha, I proved them wrong), now you'll get told yes you definitely should sort one out, a lot has changed, tech has improved immensely.
     
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  13. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    Hi @Emertype1 I was diagnosed Type 1 in 1959 at 11 months, 5 day coma in 1966, passing protein in urine from 1973 - 2013, several laser treatments to both eyes from 1979 - 1983, kidney/pancreas transplant in 2013. Yet in 1971 I was told I might make it to 20. An actuary at the headquarters of the Prudential told my father that I might make it to 40. Thank God I ignored them as I am now 61 and still going strong. Had another good transplant MOT today. As the saying goes, seize the day! Good luck in your life!
     
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  14. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    What will be will be. So live your life to the fullest and always remember that diabetes is just a small part of who you are. 2020 will be my 31st year of type 1, I had my daughter at 42 1/2 years and I am looking forward to many more years.
    Take care :)
     
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  15. KK123

    KK123 Type 1 · Well-Known Member

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    Hi @Emertype1, I do agree with previous posters but I would also say it is perfectly natural to 'grieve' for the life you had before diagnosis and for you to feel as you do having been told you have a lifelong condition for which you have to take medicine for the rest of your life! Who wouldn't feel the same after just a few weeks of diagnosis and a violent introduction to it? As others have said first off it takes time to even take it all in and it's not like you get a chance to ponder it, it's here's yer insulin, off you go. You will (in all likelihood) come to terms with it but please don't feel as if somehow you are failing or not as fab as the rest of us because of the way you are feeling right now. I know we all mean well when we tell you our tales and our desire to live every day as if it were our last (sounds exhausting to me) BUT take time to grieve, learn to accept and manage what you have and remember NOBODY gets from A to Z in a fortnight. xxx
     
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  16. smc4761

    smc4761 Type 1 · Well-Known Member

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    Hi @Emertype1 welcome to the forum. If you ever need any guidance, advice on your diabetes, dont use Google, come on here The folks on here have years and years of experience

    I believe that if anything type 1 may live even longer and have fewer complications. Quite simply Type 1 tend to look after their health, eat better foods, avoiding high sugar foods.

    As long as you are sensible, test regularly. get yourself checked, eyes feet, and attend diabetic clinics, you should live a long and healthy life.

    Type 1 has improved dramatically over past 20 years or so. better insulins, blood testing, insulin pumps, flash glucose monitoring all help us manage our condition

    I have been doing this for nearly 40 years and I am generally in good health, diagnosed when i was 20
     
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  17. Dexterdobe

    Dexterdobe Type 2 · Well-Known Member

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    Stop worrying. If your diabetes prompts you to lead a healthy life with good diet and lots of exercise, you will live a lot longer than all those overweight, lazy people who refuse to change their lifestyles. I've never felt better than in the last 2 years since I was diagnosed and I fully intend to live to a ripe old age. Stop worrying and enjoy life.
     
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  18. Lynne C J

    Lynne C J Type 1 · Well-Known Member

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    Ignore the losing 12 years of your life, if you can keep control of your BG's, eat well and keep exercising there's no reason you can't live a long and healthy life. I've been T1 for 40 years this Christmas, no complications but I work hard at me control and HbA1C is 42. I also exercise a lot plus Pilates and Yoga, great for mental health. Not saying it's easy but I'm 72 and planning on being around for a lot longer! We're all here to help, no matter how simple you think the question is. Good luck! x
     
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  19. Hotpepper20000

    Hotpepper20000 · Well-Known Member

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    Oh WOW :banghead::banghead::banghead:
     
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  20. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    One of the advantages of any chronic condition is that you are under the clinical spotlight. At least 25 years ago I was working for an organ building firm. One day at tea break the manager said to me "You'll probably outlive us all, since you are constantly monitored". I'd like to prove him right!
     
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