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Frustrated about being lied to

Discussion in 'Type 1.5/LADA Diabetes' started by DaftThoughts, Sep 22, 2017.

  1. DaftThoughts

    DaftThoughts LADA · Well-Known Member

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    Morning all.

    Just got back from my DSN checkup and I'm growing increasingly upset about the fact I was lied to on my diagnosis. I got my official diagnosis of LADA on December 16 2014 after spending a few months being misdiagnosed as T2. I was told I tested positive for antibodies and had decreased insulin production. I never got a print-out of the tests, I just trusted what I was told.

    Today, I requested print-outs for my own administration and lo and behold - I tested GAD negative. I don't even know how to process this. I tested low on C-peptide on diagnosis (1.08, the normal value is 2.35 or higher) and I know that this is ultimately more important than the GAD tests, but I'm kind of struggling with my diagnosis validation here.

    They also never bothered to test me further for ZnT8 and IA2 markers, which can be present even if the GAD test is negative. I don't know how much this matters, but it just feels like they dropped the ball on me here. They COULD have been more thorough, they COULD have communicated better, but they didn't. I inquired about doing a new C-peptide and they deemed it unnecessary - if I want another test done, I have to pay out of pocket for it, which I can't afford right now.

    I think this is hitting me hard because I already run into the issue of not having LADA recognized by a lot of people, including healthcare professionals. I spent a long time feeling backed up by test results that I now know are at least 50% false. I know based on my diabetes progression, insulin dependence and initial C-peptide results that it's pretty clear I fit the LADA profile, and I know only 75% of T1 and LADA even test positive for GAD in the first place, but now it just feels like I'm a liar somehow.

    It probably shouldn't affect me this much, but I feel like my diabetes is incredibly invalidated because they let me believe something was true when it wasn't? I can't even right now.
    • Hug Hug x 5
  2. Daibell

    Daibell Type 1.5 · Expert

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    Hi. It's annoying when you are given the wrong result but it really doesn't matter. As you have said a negative GAD doesn't prove much as there are other anti-bodies that are not often tested for and viruses etc can also cause islet death. In one of the NICE Diabetes documents they say that a GAD test carried out a long time after initial diagnosis can often give an unreliable negative result. I've been down the same route but had to get my two tests done privately as my GP was intransigent about my diagnosis. You appear, like me, to be Late onset T1. At least you are 'officially' LADA; I'm officially still T2 which is even more annoying. Yes, many organisations like DUK and the NHS don't really recognise LADA but at least NICE now does. It's a pity these organisations don't keep up with the NICE Guidelines. It's taking time but gradually it's being recognised that T1 is not just a disease of childhood and needs to embrace islet cell death thru causes other than anti-bodies. Sadly even the acronym LADA assumes an auto-immune cause.
  3. fletchweb

    fletchweb Type 1 · Well-Known Member

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    You really have to be your own health advocate when dealing with Health Care Systems (from any country). I've met my fair share of Health Professionals over the years I've been living with Type 1 and have discovered, it's like any other industry - lots of incompetence and a high level of arrogance - along with a lot of influence from BIG Pharma - as a result I've done my best over the years to avoid health professionals and to only see them when it's absolutely necessary. There is an opiate crisis where I live as Doctors used to freely prescribe them to their patients - the other problem - my Health Care System assigns Doctors to patients so you have to cross your fingers and hope you get a good one - that in itself scares the hell out of me. Anyway - it's quite a game isn't it ...
    • Hug Hug x 1
  4. Meggsie

    Meggsie Type 2 · Member

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    Its a very frustrating game really..... i fit the profile for lada but tested negative to antibodies..... the pharmaceutical companies really have our lives in the palm of their hands......
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