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GAD Autoantibodies

Discussion in 'Type 1 Diabetes' started by CC1, Sep 6, 2019.

  1. CC1

    CC1 Type 1 · Member

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    So got my results back for antibodies today. Negative!! Argggh. So still not sure if T1 or T2 but treating as type 1 at the moment as responding well to the insulin. This disease is soooo confusing.
     
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  2. Antje77

    Antje77 LADA · Moderator
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    Same here, but my T1 treatment works very well for me (and has done so from the beginning, close to 3 years ago). I've decided I'm happy as it is as long as treatment works, especially as my internist is happy to go with T1 as well.
     
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  3. EllieM

    EllieM Type 1 · Well-Known Member

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    So have they done a c-peptide test on you? Though a positive GAD test would confirm T1, a negative test doesn't rule it out, and I'd have thought that a c-peptide would be much more conclusive.
    But if the insulin works, I guess you just have to embrace it. As a T1, insulin is my best friend.:)
     
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  4. Antje77

    Antje77 LADA · Moderator
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    That one can be inconclusive as well. High = T2, very low = T1 (or 3C), normal, low normal and below normal can be anything. In adults the insulin producing cells tend to take their time dying with T1. And T2 can go unnoticed for a long time, which can compromise insulin production as well.

    In my case GAD neg (no other antibodies tested), C-pept. just below the low normal threshold, Gliclazide and lower (but not very low) carb did help a little but not enough to go below 10, ever, only basal insulin left me with high spikes after food. A basal/bolus insulin regime works very well.

    My internist says something along the lines of she won't bet her life on it, but if it looks like a duck, quacks like a duck etc. it's probably a duck.
     
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  5. becca59

    becca59 Type 1 · Well-Known Member

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    @Antje77 consultant said pretty much the same to me. He wouldn’t do tests as they are very expensive and often inconclusive. Plus often done too early in diagnosis to actually be reliable. It does actually say in the NHS guidelines tests shouldn’t be done until 6 months in. If I’d had to wait 6 months before starting insulin I doubt very much I would be here now typing this.
     
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  6. Antje77

    Antje77 LADA · Moderator
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    I started insulin a month from diagnosis and added mealtime insulin within 2 months. C-pept. and anti GAD were only tested after 2 years, and mainly because I was frustrated by not knowing, not for medical reasons.
    Should I have tested a definite T1 my treatment would have stayed the same, bun in case of a clear T2 it would have stayed the same as well because it was working so well.
    So now I still don't know for sure but am not frustrated about it anymore.
    Besides, most T1's never have their antibodies or C-pept. tested, they get diagnosed by presentation. It's only with the grown ups there may be confusion usually. I'm fine with being diagnosed by presentation.

    edit:
    And @CC1 , I hope our musings help you with your own feelings and decisions around your diabetes. If you have questions, please ask, maybe we can help :)
     
  7. KK123

    KK123 Type 1 · Well-Known Member

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    Hi Antje, I get what you are saying totally but I do think that being diagnosed by 'presentation' is a bit tricky with some people. I was 56, h1ac of 15%, with ketones, slim. In the hospital, half of them thought type 2 and the other half thought type 1. I think the ONLY reason they did the C peptide and GAD/antibodies test around 3 months later was for some sort of clarification. It confirmed type 1. If I had been overweight, I have NO doubt they would have gone for type 2 right at the start because of age, even with ketones and all the rest some of the Consultants kept saying, yes, well even type 2s can have all that at presentation. Had they done that on presentation I would have probably spent the next 3 months on tablets and become very ill as it turned out I was producing very little of my own insulin. I wonder how many 'type 2s' have been misdiagnosed because someone took one look at them and said 'You're old and fat, ergo type 2'. MASSIVE stereotyping. x
     
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  8. Antje77

    Antje77 LADA · Moderator
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    To be clear, I was talking about presentation when treatment works, not when you don't get insulin when it's needed. So not the quickly concluding without thinking, but taking every bit of information and deciding that based on a, b and c, the most likely answer is x.
    With high ketones T1 should always be considered, it's an important part of your 'presentation'.

    Initially I was treated by my GP's practice nurse, who was happy to prescribe me insulin when my numbers wouldn't come down on tablets but couldn't understand why I thought I might be T1 (being fat and 40 looks like T2 and she doesn't know much about the slowish process of LADA). I had to explain to her what anti-GAD and C-peptide tests were for.
    She was happy to take everything in consideration and happy to send me higher up when getting too far out of her depth. It was a real eye opener for her when I told her that being fat doesn't protect you in any way from having T1. She won't forget again and will be an even better consultant for it
     
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  9. helensaramay

    helensaramay Type 1 · Expert

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    There have been some articles recently about the percentage of adults with type 1 who are wrongly diagnosed with type 2 (https://www.sciencedaily.com/releases/2019/04/190430105748.htm). It is scary to see one third of people diagnosed with type 1 over the age of 30 are initially misdiagnosed.

    I was correctly diagnosed in my mid-30s but the method of diagnosis was not very scientific: “you are too slim to have type 2”. Something, I now know, is not necessarily true but I have no desire to confirm this with GAD or C peptide tests. My treatment works with no nasty side effects so getting the label confirmed is irrelevant to me.
     
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  10. becca59

    becca59 Type 1 · Well-Known Member

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    And I too was thought to be type 2 by Gp prior to ending up in hospital on an insulin drip because I was 54. And I still say for me those tests are irrelevant because I am fit and well. Which is the most important thing.
     
  11. CC1

    CC1 Type 1 · Member

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    Thanks everyone there's a lot to take in at the moment but I appreciate your help and advice. I really don't think anyone knows if I'm 1 or 2 but at the moment I need to concentrate on what works best for me in terms of getting things more stable x
     
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  12. Scott-C

    Scott-C Type 1 · Well-Known Member

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    I'm treated in the NHS Lothian area. The group here, Edinburgh Centre for Endocrinology and Diabetes, publishes a protocol on how to interpret C-pep and GAD tests:

    http://www.edinburghdiabetes.com/diabetes-protocols

    I'm not a scientist, but my general take on it is that docs know that c-pep and gad tests don't offer as much certainty as folks on this site make out.
     
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  13. ert

    ert Type 1 · Well-Known Member

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    It's difficult not to have a clear diagnosis. But even with one, it's difficult to accept such a diagnosis. I would give anything to be able to come off insulin.
     
  14. Scott-C

    Scott-C Type 1 · Well-Known Member

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    The uncertainty must be difficult.

    If it pans out as T1, hmm, there's a lot of long term T1s here who will be happy to teach you a lot of tricks which really aren't approved by DAFNE....
     
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  15. ert

    ert Type 1 · Well-Known Member

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    NHS guidelines? GAD antibodies only stay around for 6 months after an immune response, so my specialist says. That would be a sure way to miss them. Until your next attack.
     
  16. KK123

    KK123 Type 1 · Well-Known Member

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    I agree about the Docs. My C peptide was 'the low end of normal' which could mean 'anything' on its own they said, my GAD was positive but that didn't necessarily mean type 1 on its own they said, 'even non diabetics can have positive GAD'. They all said they look at a whole host of markers in order to decide. Very helpful, not, ha ha.
     
  17. Scott-C

    Scott-C Type 1 · Well-Known Member

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    It would be a lot simpler, and would save the NHS a lot of money, if they just used a variation of the trialled and tested 17th century Witchcraft: Trial by Drowning method - row the patient out to an uninhabited island, with a few tins of mackerel, a can opener, and a bottle of whiskey.

    Come back in a month, if they're still alive, it's T2, if they're dead, it's T1. Simples! I'm going to tweet Partha Kar about this tomorrow...
     
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  18. Shiba Park

    Shiba Park Type 1 · Well-Known Member

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    Well I'm a freak then...

    GAD antibodies still in the 'emphatically T1' range after 3 years!
     
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  19. ert

    ert Type 1 · Well-Known Member

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    Guess that means you didn't have a honeymoon period. :(
     
  20. becca59

    becca59 Type 1 · Well-Known Member

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    Honeymoon periods are highly overrated in my opinion. Once mine had gone management was so much easier. So much easier to stay in range.
     
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