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Wrongly Diagnosed?

Discussion in 'Ask A Question' started by JennieS, Mar 9, 2017.

  1. JennieS

    JennieS Type 1 · Well-Known Member

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    Hello All,

    I am wondering if anyone else has had experience with being wrongly diagnosed?

    i got diagnosed in April 2016 with type 2 and i can't help but wonder if i have been wrongfully diagnosed. from what my diabetic team have told me Type 2 comes on gradually over time which is correct with what i have also read but before i was diagnosed after having a lumbar puncture - two maybe 3 months before that i had a blood test and nothing shown up to suggest diabetes. From what i have read and been told once again Type 1 comes on suddenly in children and in adults it can take a month or two and i can't help but wonder if i am actually type 1 and not two as none of the medication i have been given to treat type 2 is working. i am on yet another course of medication which isn't working so i want to know if anyone else has ever been wrongfully diagnosed?

    thank you
     
  2. azure

    azure Type 1 · Expert

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    Hi @JenLou :)

    Yes, quite a few adults are misdiagnosed with Type 2 but actually have Type 1. Some doctors seem to,assume that any adult must be a Type 2 as Type 1 is a 'child's condition' but it's not. Recent research has shown that more people are diagnosed with Type 1 over the age of 16 than under 16, and that the age at diagnosis is fairly evenly spread across the whole age range.

    What are your blood sugar results like? If you're concerned you may be Type 1, ask for a GAD test and a C Peptide test.
     
    • Useful Useful x 1
  3. Bluetit1802

    Bluetit1802 Type 2 (in remission!) · Guru

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    Hi,

    It might help with responses if you told us what diabetes medications you are on, what your current blood sugar levels are both before and after food, whether you have excess weight to lose, and also what foods are you typically eating. :)
     
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  4. JennieS

    JennieS Type 1 · Well-Known Member

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    Hi

    my levels are all over the place and never lower that 15. i have been placed on all types of medication and none of them are working but my GP doesn't care about it
     
    • Hug Hug x 2
  5. azure

    azure Type 1 · Expert

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    Ok, 15 is to high, as I'm sure you know. I'd go back to your GP and ask for a referral to a specialist. Most GPs don't have the knowledge about diabetes that is needed to,decide a 'type'. A specialist would be able to give a better opinion.

    In the meantime, you could ask your GP to do the tests mentioned above so that the results will come though quicker (the GAD test can take a while). You could also ask if insulin would be an option while you're waiting for your appointment as that should control your blood sugar and also would avoid you taking any medication that might not be appropriate if you were to be Type 1.
     
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  6. JennieS

    JennieS Type 1 · Well-Known Member

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    I was diagnosed at the hospital and i know they're high. I have just done a finger prick before lunch and my levels are 26 at the moment and that's after taking my medication earlier, i'm just getting very annoyed with alm the messing around they are doing with me
     
    • Hug Hug x 1
  7. Kristin251

    Kristin251 LADA · Expert

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    I was diagnosed at age 50. 3 years ago. Anything can bring it on. I believe mine was from a nasty virus. Doesn't matter, it is what it is now

    I had the same trouble. Boeing prescribed meds that either didn't work or made things worse. My suggestion is to get the tests azure mentioned as soon as possible. Have you told anyone the meds aren't working and how high you've been? My concern is some of the type 2 meds work on the pancreas and squeeze it to produce insulin. If your c pepetide is very low you want to preserve any pancreatic function you still have and get on insulin. Insulin is not nearly as bad as I had imagined. The finger sticks hurt much worse. Some fortunate people are able to use insulin temporarily to bring high bs down and give the pancreas a rest. Sometimes we get too high ( maybe from your puncture) and the pancreas can't keep up or catch up. Unfortunately I am not one of those people. Those tests will answer your questions and give you a diagnosis.

    Best wishes and please get this sorted out as soon as possible!
     
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  8. JennieS

    JennieS Type 1 · Well-Known Member

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    Hi,

    I was 23 when diagnosed and it came out of nowhere, i have blood test every 3-6 months and none of them showed any signs of diabetes. It just doesn't make sense to me because everything i've been told and read goes against what i am being told that i am Type 2 - it's confusing
     
  9. Jamesuk9

    Jamesuk9 Prediabetes · Well-Known Member

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    Unless you have had a GAD antibody test and a C-Peptide test nobody is in any position to diagnose you purely on fasting glucose or hba1c. In the absence of these tests, they are guessing.
     
  10. JennieS

    JennieS Type 1 · Well-Known Member

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    I've never have a GAD test or Glucose tolerance test. Mine was just diagnosed from blood test and ketones testing
     
  11. Bluetit1802

    Bluetit1802 Type 2 (in remission!) · Guru

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    @JenLou it really would help us if you told us the names of your diabetes medications.
     
  12. JennieS

    JennieS Type 1 · Well-Known Member

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    I'm on an injection called Victoza
     
    • Informative Informative x 1
  13. Bluetit1802

    Bluetit1802 Type 2 (in remission!) · Guru

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    Victoza is a strong drug and should be helping you. I suggest you go to your GP very soon, like today and ask for the GAD and C-peptide tests, and be assertive if he says no. Your blood sugars are way too high. If you start to feel ill between now and the doctor appointment then you must seek emergency help immediately.

    I have copied this from the website

    http://www.diabetes.co.uk/diabetes-medication/diabetes-and-victoza.html

    How does Victoza (Liraglutide) work?
    Liraglutide functions over a 24-hour period to lower both fasting and post-prandial blood glucose levels, and help people with diabetes to manage their blood sugar.

    Liraglutide works by stimulating the secretion of insulin as well as suppressing the secretion of glucagon in a glucose-dependent manner.

    The drug also delays gastric (stomach) emptying, slowing down the absorption of glucose by the gut and reducing appetite.

    Who can take Victoza?
    Victoza is prescribed for people with type 2 diabetes that are obese and are suffering with significant problems as a result of their weight.


    The dose of Victoza prescribed on the NHS is 1.2 mg.
     
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  14. slip

    slip Type 1 · Well-Known Member

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    So you're 23 years of age? with high blood sugar, T2 tablets medication not working? I assume you're also loosing weight? drinking and peeing a lot...............

    Demand your GP refers you to a diabetes clinic ASAP or walk in to A&E before you involuntarily end up there with DKA
     
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  15. JennieS

    JennieS Type 1 · Well-Known Member

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    I'm 24 now, i've been admitted to the hospital over night for this before and they only gave me fluids and sent me back to my GP
     
    • Hug Hug x 1
  16. slip

    slip Type 1 · Well-Known Member

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    Hi JenLou, how can I say this tactfully..................(I can't so just take it at face value) how big are you?
     
  17. JennieS

    JennieS Type 1 · Well-Known Member

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    I was given an information pack before i started taking it back in late October 2016, since i've been on it my levels continue to rise so it isn't working for me. I've been on other medication before it
     
  18. Kristin251

    Kristin251 LADA · Expert

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    You can't just sit back on this. You need to go somewhere and get help

    It came out of the blue for me too. That doesn't make it less happen. It is what it is and your bs levels are telling you your body is not functioning right. It doesn't matter why. It is what it is and needs to be addressed.

    Not to scare you but I was on a drug much like you and as I meantioned it was ineffective. I believe it burnt out the remaining beta cells I did have and straight to insulin I went. Plenty of doctors misdiagnose type 1. I actually won a law suit with them as they left me for almost dead!! Get the tests.
     
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  19. JennieS

    JennieS Type 1 · Well-Known Member

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    Since being diagnosed i have lost 6 stone and my levels are going higher when i was told it should help my levels
     
  20. cireland

    cireland LADA · Active Member

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    I was told I had Type 2 last Oct as a then 32 year old, I am overweight but never considered myself overly unhealthy in terms of fitness, I regularly play tennis went swimming once a week, someone who always walked upstairs rather than taking the lift. my reading at the time was 11.1% fast forward to early feb I went back to hosp they took more tests including GAD this time, my average bloods were now at 6.4% which everyone thought was great, taking 2 metformin 500mg twice a day. However I got a phone call today saying my GAD is high and that I am actually type 1 which has come as a huge shock and given I am still managing my levels on the tablets I am not sure what to think myself.. Perhaps I should get a re-run of the test.
     
    • Hug Hug x 1
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