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Diagnosed today type 1, scared and could use some advice.

Discussion in 'Newly Diagnosed' started by Cd-astro, Jul 31, 2019.

  1. Cd-astro

    Cd-astro · Member

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    Hi,
    Tbh I kind of feel like I need a vent and some advice. This monday I was called by my doctor after a blood test becauss I was tired with a HBa1c level of 98 mol/mmol and he immeadietly tried to get me to go to the hospital for type 1 testing. Unforntunately I was headed on the train home (uni student) so he recommened I get tested at my local hospital.
    I tried to do this but a&e had a 5 hr wait time and all I got were two finger prick tests which cams out at 15.5 and 14.7 (6 hrs since I'd eaten) and then sent home with a fasting blood test booked for the morning.
    So I did all that and got my result back today of 14.7 and basically the doctor wasn't going to do anything about it because I don't have keytones in my urine. Tomorrow I've got an appointment at the hospital with the diabetic nurses at 9 and tbh I'm a bit shocked and scared as there is no history of diabetes and my uni doctor said he'd be very surprised if it wasn't type 1 but no one else seems concerned at all. I'm 24 btw.

    Do you always have to have keytones for type 1?
    Am I being concerned for no reason?
    Did/is this happening to someone else?
     
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  2. MeiChanski

    MeiChanski Type 1 · Well-Known Member

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    Hello, welcome! I’m sorry you are going through this. As far as I’m aware you’ll need to pester your doctor for a GAD and cpeptide test to determine which type. However there are a certain number of cases where people don’t know what type they are. For ketones to happen is when your body is insulin deficient, dehydration and lots of peeing and that is going towards DKA because of the high glucose levels running for a long period of time.
    There are other symptoms to look out for in type 1 diabetes is, unintentional weight loss, dehydration, lots of peeing, extremely tired. If you are vomiting, you have to go to A&E asap. Best way I can describe it is type 1 diabetes happens very very quickly.
    If you can get yourself a blood sugar meter to check if your blood readings are okay. But don’t take no for an answer, keep pestering your doctor.
    If you read around, there is a lot of information that might help you.
    https://www.diabetes.co.uk/diabetes-and-ketones.html

    I hope you feel better soon, best of luck :)
     
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  3. mouseee

    mouseee · Well-Known Member

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    I completely understand your fear. The thought of diabetes is scary particularly type 1. I was only diagnosised last week as t2 (I'm double your age nearly).

    Your tests will hopefully come back quickly and you'll have some kind of answer soon. I emailed Dr on Mon with symptoms and had an answer 24hrs later so it can be a really quick turn around.

    Everyone is different and as the post before says if you feel ill then get help straight away.

    If it makes you feel any better, my results were almost exactly the same as yours and I'm still here a week later! I have got my bloods down to pretty normal level with medication and low carbs. It's not fixed yet but it's going in the right direction.

    You'll get loads of advice and support here from people who have t1 and t2. Ask questions, read threads and you'll find you are definitely not alone even if it feels like it right now.

    Fingers crossed it's sorted quickly for you and you get the answers you need.
     
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  4. Marie 2

    Marie 2 LADA · Well-Known Member

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    If they don't respond locally with type 1 testing, go back to the doctor that thinks you are a type 1 and see if he can get the testing done or put in some kind of referral for testing. It's important to know because it plays a part in how they help you deal with your diabetes and what kind of treatment plan you get.
     
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  5. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Hi, @Cd-astro , the bad news is that the a1c and bg readings are way out of whack, so it's likely you've got some sort of metabolic condition, the good news is that there are ways of dealing with that.

    If it's T2, adjustments to diet will do the trick.

    If it's T1, sensible use of insulin, some bling technology like cgm, and a bit of thought about what you're eating will do you fine.

    Whichever it is, it'll still be a riot of emotions for a while, but pretty much all of us get past that and it just becomes a new normal.

    I was standing on a sunny Scottish ski-slope a few months after my T1 dx, and, 30 years later, I ate a 6 course taster menu today.

    I wouldn't have thought either of those things possible in the first few days after dx, but they are. This is really not as extreme as you think it might be.

    Good luck!
     
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  6. SB.25

    SB.25 Other · Well-Known Member

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    Hello,

    Hope you are feeling ok - I know it can be scary when this all happens.

    I was diagnosed as diabetic back in November with a hba1c of 103. I am 26, have a normal bmi and had no ketones in my urine. The reason I went to a and e was because I had been feeling really dizzy for weeks and every doctor I saw told me it was stress at work.

    I get how scary all this can be as I’ve been there!

    The tests you will have are likely the GAD antibody test - this looks to see if you have antibodies associated with killing off the beta cells in your pancreas. If this is positive then you are T1. This means eventually your body will no longer produce its own insulin.

    The other test is a c peptide test which looks to see how much insulin you are naturally producing. If this is low it can be linked to T1 and if it is high then it is T2.

    MODY is another, rarer form of diabetes which you may be tested for if the other tests are inconclusive.

    Just to give you a heads up, you could end up in the unique situation like me where you do not get a diagnosis of either T1 or T2.

    If there is something I have learned, it’s that the treatment is the most important and not necessarily the diagnosis.

    This forum will be really helpful for you and if you ever need anything, just ask!
     
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  7. Cd-astro

    Cd-astro · Member

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    Thank you all for the support. Not going to lie this week so far has been rough and I've had a couple break downs. I'm mostly asymptomatic (apart from severe tiredness) but for the past few days where I've dropped 3kg and been pretty hungry and thirsty. It hasn't helped that the local doctors have been really dismissive of everything.

    Hopefully tomorrow mornings tests will reveal a bit more and at least I will know what I am dealing with.
     
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  8. Caeseji

    Caeseji Type 2 · Well-Known Member

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    Hello and welcome, all of the hugs to you! I know it's scary at first but make sure you get as much information from your care team as you can, you seriously need it. All the best to you through all this!
     
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  9. Cd-astro

    Cd-astro · Member

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    Finally getting treatment after todays test with blood glucose at 20.3 and 0.6 keytones. Got me started on 6 units of insulin 2 times a day untill monday when I can see my doctor back home. The thinking is its probably type 1 so they are treating me for that. I came away from the hospital with a big bag of goodies feeling overwhelmed but overall a bit better.
     
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  10. SB.25

    SB.25 Other · Well-Known Member

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    Glad you have started some treatment.

    The insulin is not as scary after you have done it a few times. I remember the first time being quite scared to inject it! It honestly hurts less than the finger prick (for me anyway).

    I hope the insulin starts to kick in soon and in turn you feel a bit better :)
     
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  11. Alison54321

    Alison54321 Type 1 · Well-Known Member

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    They've given you insulin, and think it's type 1? At least you know. It's a very weird shaped learning curve, you have to very quickly get used to injecting insulin, counting carbs, and avoiding, and treating, hypos, so the first bit of the learning curve is very steep, then after that you have to spend a lifetime working out how to do it as well as you can. You're always learning, and adapting. But as long as you get up that first steep bit ok, the rest will come gradually.
     
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  12. Cd-astro

    Cd-astro · Member

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    Yeah basically I've also lost a bit of weight in a short space of time. They've done the c-pep and antibodies test but they wont come back for a while. So they are working off a type 1 diagnosis.
     
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  13. Raelynn76

    Raelynn76 Type 1 · Member

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    I'm glad you are on insulin now and it is very overwhelming to hear diabetes. I was 35 when I was diagnosed and it was a shock. I don't know if the doctor mentioned this about being on insulin so I thought I would. You may start to feel the symptoms of low blood sugar even though you are not low. It's because your body is used to your sugar being higher. It might take a while for your body to get used to things. No one told me that so I thought something was wrong.
    Hang in there it gets easier. :)
     
  14. Dave Wilde

    Dave Wilde · Member

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    Given how high you are I would shocked if you weren’t type 1. I’m newly diagnosed and had ketones I was 70 and above for days and lost 16 kilos in weight in a matter of days.A GAD test isn’t definitive, but DKA is almost certainly type 1 as it indicates no insulin.
     
  15. Daibell

    Daibell LADA · Master

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    Hi from your posts it does look like T1 is likely to be the diagnosis as unexpected weight loss and being young are strong pointers.
     
  16. Colin Crowhurst

    Colin Crowhurst Type 1 · Well-Known Member

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    I know how you feel I was DX'd in Dec 18 at the age of 50! Type 1 also, feel free to shout me anytime, but I would say it is possible to cope quite easily once you get your head around Carb counting and keeping things in balance. Finally don't try to do too much too quickly watch the trend rather than the results my BS reading took about 3 weeks to get down to reasonable levels!

    Stay strong find a support network (family or friends or even both ) and use them!
    Finally where in the UK are you, both UNI and HOME as others may have details of Diabetes clinics like the superb one here in Norwich!

    I would say Good Luck, but its not luck just a bit of hard work!
     
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  17. Marie 2

    Marie 2 LADA · Well-Known Member

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    It will become second nature quickly, just a big change at the beginning!

    Be sure to always carry glucose tabs or our favorite fast sugar with you at all times. By the bed is also a good idea.

    And the really good news probably within a few weeks time you will end up feeling so much better with insulin so you can properly use the food you eat for energy!
     
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  18. Cd-astro

    Cd-astro · Member

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    So my second Hba1c came back at 11% again..now I just need to go through this all over again with my gp in Liverpool on monday. At least my bg is down below 13. Only just at 12.2 but better than the 14.7 and 20.3 I had before I finally got seen.
     
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  19. Colin Crowhurst

    Colin Crowhurst Type 1 · Well-Known Member

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    sounds like the trend is going the correct way. What information have you received on carb counting?
     
  20. Cd-astro

    Cd-astro · Member

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    At the moment nothing. I've been told to try aim for consistent amount with each meal, 50g, but thats all.
     
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