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Antibodies "just negative"?

Discussion in 'Type 1 Diabetes' started by moonstone, May 28, 2010.

  1. moonstone

    moonstone · Well-Known Member

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    Does anyone know what that phrase means - "at diagnosis your antibodies were 'just' negative" - having replied to someone else about differences between types 1 and 2 diabetes it dawned on me that this was the only thing anyone ever said to me about my blood test results. On the day they treated me as a type 1 due to the state of me, but when I asked a month or two later what the tests had shown, that's all I was told. I can't get my head around all the ins and outs of it so does anyone know off the top of their head what that means? Thanks in advance for any replies.
     
  2. catherinecherub

    catherinecherub · Guest

    Haven't got a clue moonstone but will bump your post up. :) :)
     
  3. cugila

    cugila · Master

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    Antibodies: Persons with type 1 diabetes and LADA usually test positive for certain antibodies (GAD, ICA, IA-2) that are not present in type 2 diabetes.

    GAD antibodies: Persons with LADA usually test positive for GAD antibodies.

    All depends as well on what exactly the test was that was carried out, there are many types of antibodies.

    Ken
     
  4. phoenix

    phoenix Type 1 · Expert

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    Sorry, its very hard to answer,
    as Ken says people with the most common type of type 1 (type 1a autoimmune) will test positive for one or more of the antibodies he mentioned. For people out of childhood and adolescence this almost certainly includes GADA.
    However it's not always clear cut and some people that have not tested positive at diagnosis develop antibodies later (and conversely after 12 years some no longer test positive especially to ICA, )
    There is also a form of type 1 (type1b idiopathic) which is really a catchall and not all doctors use it. It seems to mean diabetes that has all the signs of being type 1(ketosis prone, insulin sensitive, low C peptide ie produces little or no insulin) but there is no evidence of an autoimmune attack.

    I think the problem is with phrase 'just negative.'.. you couldn't for example have a just negative pregnancy test!

    I wonder if it means that you have slightly fewer antibodies than a predefined cut off point?
    In one study, they refer to the levels of GADA as percentages and the higher the percentage the more likely the person is to become insulin dependent.(the same study says that they need more clarity about cut off points and even the units used which are not international)
    Sorry can't really be of more help.
     
  5. moonstone

    moonstone · Well-Known Member

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    Thanks for the answers, it's a very ambiguous statement isn't it! I've emailed my nurse now to ask her to either send them to me or give them to me at our next DAFNE follow-up in a couple of weeks. That's what I was thinking, about a kind of pretermined point, because an antibody is either there or not and I can't see how they can be 'negatively' there!
     
  6. moonstone

    moonstone · Well-Known Member

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    Right, so she says my antibodies were negative (meaning not present), and that they're treating me as a type 1 due to my clinical symptoms at diagnosis (so maybe it's what Phoenix said about type 1b idiopathic), and that I should discuss this with one of the doctors on my next visit (which is going to be next January). But even if I was type 1b idiopathic, I've never shown anything more than the tiniest traces of ketones except on diagnosis, and even then it was only +1 with an FBG of 21, so I couldn't really say I was 'ketosis-prone'.

    So I now wonder why they didn't even try treatment for type 2 diabetes? I had a 'honeymoon period' - was that maybe a lost opportunity to resensitise myself to insulin? I just assumed the test results must have come back showing I was a type 1 - after all, I've been on DAFNE, been offered a pump, and no-one ever told me otherwise - but I inject relatively low amounts of insulin, and often become more sensitive to it for a few-several days, which causes obvious problems.

    I just don't know what to make of all this. I'm thinking about getting a private 2nd opinion from an endocrinologist or diabetologist if possible. I have the 2nd DAFNE follow-up on Monday too, so maybe I can have a chat with someone then.
     
  7. mishigato

    mishigato · Member

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    Hi Moonstone,

    I share manypoints with your case. I have been treated as T1 for ten months, injecting insulina from day number one. As I was using less and less insuline, they decided to test me, thinking that I was having a too long too happy honeymoon period.Recently I was told I was antibodies negatives which made then think I am T2, but I am not as C-peptides too low. I have been told I may be LADA, keeping Lantus and susbtituting Humalog for an oral/day.

    My profile doesn't match LADA either ( I am antibodies negative nevertheless), but gonna try this new medication for a few weeks/months. I have just got to hear about this T1b that Phoenix mention. I will go to my endo to ask about it. I will keep you posted about any info I will get about it.

    ps- If you injecting so small quantities of insuline, are you finding DAFNE helpful? I was told it wouldn't really help me as i use 1/ humalog dosys even if i have a whole pizza with beer..let me know as if it is, i may ask for it.
     
  8. moonstone

    moonstone · Well-Known Member

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    Hello Mishigato,

    Well, I went back and requested I got retested, and this time I did have antibodies. Apparently they can show up sometimes and not at others, which is irritating! My c-peptide was also low. They did other tests to rule out other forms of diabetes (I can't remember what now, as this was a year ago) and the answer is, I'm a type 1 diabetic, but very likely to be LADA. This fits perfectly with what happened to me because I feel I had it coming on for several years - minimum 10yrs. The first real clue was when I decided to stop using salt in food in the year 1999 because every time I ate, I'd get a really dry mouth afterwards, and all I could imagine this could mean was that I was using too much salt. Obviously now I know what that really was. I got generally more ill and more thin over time until things got completely out of control back in early 2008 and I was finally diagnosed.

    When I was honeymooning I was on 1-3 units for each meal, and nothing at breakfast, and this went on for 11 months. I only broke out of the honeymoon when I got a chest infection and suddenly had to find a way forward with these rising sugars, so I started carb counting with ratios off my own bat. Before that I'd refused to do the DAFNE course because I thought it was totally pointless whilst honeymooning. Now though it generally works for me but sometimes I'm more sensitive to insulin than at others. I don't feel I have a level playing field, so it's just quite difficult to deal with sometimes.

    Good luck to you, I think it's possible you're in the exact same scenario as I was - a hard place to be, not quite knowing whether this is true or not. I had to accept it in the end as the medical evidence finally came up with the reality of the situation - and actually, it was a great relief to truly know what was going on.
     
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