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Misdiagnosed Type 2

Discussion in 'Ask A Question' started by rosemaree, Oct 2, 2020.

  1. rosemaree

    rosemaree Type 2 · Well-Known Member

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    Hello Everyone,

    I am just looking to hear peoples experiences of being misdiagnosed type 2, and how you eventually managed to get some answers, as well as what type of symptoms etc you had,

    I was diagnosed pretty young, and have had some questionable symptoms from childhood years. I don't necessarily think I have been wrongly diagnosed, I just haven't been able to find a doctor willing to investigate anything with me, and my past experiences make me nervous to blindly trust them (drs). The doctor that diagnosed me only did an hba1c test because I told him I thought I was diabetic after I tested myself at home - he didn't listen to my history, symptoms or anything really. And the doctors I have seen since then haven't been much help either,

    Thank you :cat:
     
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  2. xfieldok

    xfieldok Type 2 · Well-Known Member

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    How old were you when diagnosed and can you remember what your hba1c was?

    Are you testing at home?
     
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  3. UsmanMo96

    UsmanMo96 Type 2 · Well-Known Member

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    Your GP should have referred you to a specialist and you should have had a c-peptide and GAD and anything else that i have missed tested, my GP is honest and when he cant help me he will refer me to a specialist; although he will get me to have some blood test done ect but he is straight up and honest when he doesn't know how to help me. // i hope you get the answers you're looking for & keep questioning the gp and even ask to be referred;
    :)
     
  4. Rose22

    Rose22 Type 1 · Well-Known Member

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    I was told type 2, by default and treated like that for 2 years, each med failing to help and feeling unwell. Finally saw consultant Endo who did the gad tests and I was positive and islet cell positive, told late onset type 1. I’d say over ten years, though as had gestational diabetes young fit and slim, and then prediabetic and then type 2, the type 1. Family history too, grandmother type 2, grandmother type 1, father type 2.
    Best of luck finding out what type, don’t give up, keep asking to be seen and for tests that what I did! Only took me two years for someone to listen hehe.
     
  5. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Hi I was misdiagnosed in 2009 for T2 after the symptoms and high blood glucose levels from a finger prick test.
    I was misdiagnosed with prediabetes in 2001, mainly because my overall health issues were heading the wrong way and I needed some medical advice. Especially my liver function results.

    I have wrote my story in the blogs forum.
    Click on blogs and click on Lamont D blogs.
    It is my first blog called ' The Reactionary'.

    Hope it helps.
     
  6. DCUKMod

    DCUKMod I reversed my Type 2 · Master
    Staff Member Administrator

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    Rosemaree - exactly what is it you want doctors to investigate? My experience is for things like this, if you can be clear about your concerns, you have a better chance of a way forward. If your request is a bit vague, it's easier to rebuff.

    If you have concerns about being T2, what do you feel you are?
     
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  7. rosemaree

    rosemaree Type 2 · Well-Known Member

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    @xfieldok I was diagnosed last year at 31, but had symptoms for a few months before. My hba1c was 123 (13.4% I think), got it down to 42 (6%) in 3 months, same at 6 months, haven't had another done because of covid.

    I do test at home when I have strips!
     
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  8. rosemaree

    rosemaree Type 2 · Well-Known Member

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    @UsmanMo96 :) thank you,

    I have been looking to try get some more tests done privately, I have had 2 doctors tell me my pancreas can't be functioning properly with my hba1c on diagnosis, and 4 tell me more tests aren't necessary!

    I am in South Africa, and have been to most the doctors I can on my medical plan, can't afford to do too much privately at the moment though,
     
  9. xfieldok

    xfieldok Type 2 · Well-Known Member

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    Yeah, stips can be a problem. Do you believe that you might be T1 rather than T2?
     
  10. rosemaree

    rosemaree Type 2 · Well-Known Member

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    @Rose22 thank you for sharing!
     
  11. rosemaree

    rosemaree Type 2 · Well-Known Member

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    @Lamont D I will check out your blog, thank you :)
     
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  12. rosemaree

    rosemaree Type 2 · Well-Known Member

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    @DCUKMod I've had such bad experiences with doctors laughing things off and not taking me seriously no matter how clear I have been with them, I am just looking to find a doctor who will work with me!

    I may have worded the title wrong, I don't think I am not type 2, I am just curious to learn about the other types and how people have experienced them!
     
  13. rosemaree

    rosemaree Type 2 · Well-Known Member

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    @xfieldok I don't think so, I don't think I would've been able to get my levels down as much as I did if I was! I did lose quite a lot of weight before being diagnosed, but it happened realtively slowly compared to type 1s.
    I would like to know more about my pancreatic functioning and to be able to monitor it,
     
  14. Marie 2

    Marie 2 LADA · Well-Known Member

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    Not sure if this is pertinent to you or if it's what you are looking for.

    40% of type 1's are misdiagnosed as type 2's at first. This is still way to common. One of the problems is as an LADA/type 1 you still make insulin for a while, sometimes 8 years or longer so change in your diet, medications will work at first and slowly stop working as you start to make less and less insulin. This time frame of still making some insulin is called the honeymoon period. One of the signs of being a type 1/LADA is needing insulin within 3 years. But people have gone longer than that with changing diets and medications.

    The tests that help tell if you are a type one are an antibody test, the most common positive one is the GAD test, but there are a few other antibody tests. If you test positive, it's a sign of being a type 1, but a negative doesn't guarantee you aren't as a few type 1's test negative but don't make insulin and they don't know why a lot of the time, this is rarer though. The next important test is a C-Peptide. This tells you how much insulin you make. A low or low normal is a sign of type 1, high or high normal is a sign of type 2. When you are a type 1 your level will slowly drop but can vary a little through the honeymoon phase. A type 2 will test higher as they make insulin but just don't use it properly, their pancreas will make more to try to compensate for that, so a type 2 has the high or higher result.

    So the 2 most important tests are an antibody test, with the GAD antibody test as the most important antibody test and then a C-peptide test.

    http://www.diabetesforecast.org/2015/sep-oct/tests-to-determine-diabetes.html

    http://www.diabetesforecast.org/2015/sep-oct/diagnosing-type-1-in-adults.html?loc=ymal
     
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    #14 Marie 2, Oct 2, 2020 at 10:15 PM
    Last edited: Oct 2, 2020
  15. TashT1

    TashT1 Type 1 · Well-Known Member

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    I would agree with Marie above. The tests you needs are antibodies and c-peptide. Because of the healthcare structure in SA it might be difficult to get these tests. In the UK you can struggle within the system but eventually you can find a dr willing to investigate.

    Do you see the same dr every time or a diabetes specialist nurse? I’d book an appointment & go armed with information about these tests & ask how you can get them done. Unfortunately the answer may be privately.

    I’ve not been misdiagnosed but my diagnosis is under investigation. I’m currently labelled as an insulin dependant diabetic, no type issued until the test results come back & provide clarity.

    I am antibody negative on all 3 antibody tests but the fact that I have required insulin from day 1 & still do despite making diet changes & slowly reducing doses I expect to be diagnosed LADA or type 1 with some insulin production. But until those results come in I’m in limbo.
     
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  16. rosemaree

    rosemaree Type 2 · Well-Known Member

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    @Marie 2 thanks for all the info! I haven't seen the GAD test as an option, but know the c-peptide is on the blood test forms.
     
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  17. rosemaree

    rosemaree Type 2 · Well-Known Member

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    @TashT1

    I have prescribed doctors that I can visit with my medical plan, so have been to most that are available in my area, am thinking to try ask the one doctor again, she said it wasn't necessary initially, but she wasn't as harsh as the others so maybe she'll agree. We don't have diabetes nurses or anything, I was told I should see a dietician, but nothing for feet, eyes, or to check up on me :(

    I'd love to find an integrative doctor, but they are mostly all private so I just can't afford it at this point.

    Good luck with your results, I think it is much easier to address once you have some answers!
     
  18. Daibell

    Daibell LADA · Master

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    Hi. I believe the C-Peptide test is the most important of the two T1 tests as it covers any cause of beta cell output increase/decrease and hence what type you are and the treatment. The antibody tests just cover antibodies and not beta cell damage caused by viruses. I think you said you are 31? if so and are not overweight then you may very well be T1 (LADA) and if so will need insulin eventually. Sadly far too many GPs haven't a clue about diabetes but think they do. I've come across a lot of GP ignorance and arrogance during my diabetes 'journey'. My DNs have generally been very good and don't have the arrogance of some GPs.
     
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  19. searley

    searley Type 1 · Moderator
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    I was diagnosed in 2010 as T2 by a consultant... my 2 don't at the time kept saying no you are a classic type 1.

    Consultant did gad and cpeptide still said t2. Incase intolerant to metformin. So was put on insulin

    Dec 2019 after still being told I'm a t2 I said I'm stopping insulin.. started tablets which had no effect so was referred to a genetic team who started with cpeptide and came back said sorry you are t1

    Trouble with slow onset t1 is you don't always show gad antibodies and you'll have days where you are still producing good insulin so cpetide come back OK.

    Like having a 10 year honeymoon period..

    My dad was exactly the same

    I don't blame anyone for my misdiagnosis its just the way my body was reacting at the time..


    Now classed t1 I get more help though... got a pump and dexcom and all the phone/email help i need
     
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