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My test results from KDM

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by justy, Jun 28, 2014.

  1. Helen

    Helen Senior Member

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    Thanks @Leachim for an interesting post. I am looking for a good book on immunology. Could you recommend any of those that you have read?
    justy likes this.
  2. Leachim

    Leachim

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    @Helen – as I recall this one was good as an overview:

    In Defense of Self: How the Immune System Really Works
    William R. Clark
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  3. justy

    justy Senior Member

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  4. taniaaust1

    taniaaust1 Senior Member

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    Also both are extremely common in ME. My specialist told me he sees low ferritin in lots of his ME/CFS patients and sees it as being one of the common abnormalities ME/CFS causes. I have abnormally low ferritin too even my normal iron blood test is in normal range.
    justy likes this.
  5. Mij

    Mij Senior Member

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    @justy when my ferritin levels were down at 5 over 10yrs ago I could barely walk without feeling out of breath.

    So does having low thyroid function cause iron and B12 deficiency? I read on stop the madness that low thyroid decreases stomach acid production.
  6. Mij

    Mij Senior Member

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    @justy do you take vitamin D3 at all?
  7. RML

    RML Senior Member

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    Hi Justy, Glad you finally got some answers and the long inpatient wait for them is over. I found it all over whelming at first, so many results all together (esp after so long of nothing). Give yourself time to go through them gradually and absorb it all. When you talk with KDM you will get more answers too and a fuller picture of what he reckons is going on.

    Sorry I can't help too much with the test results and what they mean, this is all new to me too, and I'm still trying to get to grips and understand some of mine.

    I wish I got my thyroid testing done, it was one I meant to mention and ask for but completely forgot in my dosy haze on that first visit. I should have brought my mum in with me when Jan was going through the proposed tests.
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  8. Helen

    Helen Senior Member

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    As far as I know there is no definite or general answer to this. Many still need supplementing B12 though treated properly for the low thyroid. Low thyroid makes most functions go low and slow if not treated. Hypothyroidism is mostly caused by an autoimmune reaction (Hashimoto´s disease) and there are cases that have been cured after amalgam removal or a gluten-free diet.
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  9. justy

    justy Senior Member

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    I did take it for a while about 4 years ago and it helped with my cognitive function at the time, which was really terrible. Haven't taken it since then though.

    My ferritin has also been lower - at 5 a few years ago and when I went back over old NHS blood tests I saw it had been at 5 for at least 6 years! I did take iron supplements for a few years - after taking them religiously for over a year the highest my ferritin ever got was 11, ow I see it has dropped back down again now that I have stopped supplementing.

    My GP said some people need to take iron for the rest of their lives, but im not sure if this is a good idea? I know you can have anaemia of chronic disease and I think the iron supplements can drive inflammation in some people. I dip in and out of anaemia and see my haem levels are low again. I do have symptoms - severe breathlessness and palpitations etc. Guess ill have to get back on the iron, even though it messes with my stomach and the woes in that department are already quite profound.

    I thought I might wait and see what KDM says about the iron and D3 and what supplements if any to take.
  10. Mij

    Mij Senior Member

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    @Helen interesting regarding low B12 not allowing iron supplementation to increase ferritin. This happened to me last year when my B12 levels dipped below 218. I could not increase my ferritin with iron which was not a problem in the past.

    @justy I wonder if it's possible that your B12 shots are not addressing a B12 functional problem and this is why iron supplementation is not working for you? I hope your doctor can solve this mystery.
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  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @justy

    Just a note: my TSH and other thyroid tests indicated hypothyroid before treatment with KDM. (My TSH was about 5). I did take a low dose of Armour for a while but now my thyroid function has normalized and I don't need it anymore. So, indeed, it was downstream.

    Sushi
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  12. Leopardtail

    Leopardtail Senior Member

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    Justy,

    the stuff I can comment on is the hormone/iron related. Low iron or D3 can contribute to hypothyroidism hence both matter. Ideally I would like to know what your 1,25 Vitamin D is running at, just as low D3 creates hypothyroidism it in turn can raise the ratio of 1,25 Vitamin D to 0,25 Vitamin D.

    It would be useful to know what your other iron markers are like, especially Iron Binding Protein.

    The immunology is more @MeSci 's field. My understanding is fairly basic.

    Leo
  13. AkeBono

    AkeBono

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    Im just a newbie and maybe someone else already said it:
    guess was yasko saying sometime that low ferritin is from chronic infections usually bacterial.
    maybe this should be your target - identifying pathogens ...my two cents.
    I also have Yersinia identified but also much more pathogens including Hpylori.
    any stool sample? gram negative bacteria?
    justy likes this.
  14. justy

    justy Senior Member

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    stool samples looked at levels of different bacteria an showed low levels of some and Dysbiosis due to lack of diversity.

    Looks like I may have Chlamydia Pneumoniae which is a gram negative bacteria and could be eating up all that iron I guess. I imagine he will want to treat that - I agree pathogens are the way to go. Cpn fits with my symptom picture as this 6 year relapse back into ill health began with a very long and difficult to treat bout of pneumonia, since then I have had it once more as well and it was atypical - which fits with CPn.

    Thanks for your comments.
  15. WillowJ

    WillowJ Senior Member

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    It's true that low titre ANA can be related to no specific identifiable disease and high titre ANA is related to multiple diseases, and @justy 's is low by most counts, but my rheums generally treated low titre ANA as something to be watched, in case of developing a (recognized) disease. Speckled seems to go with Lupus and RA and I forgot what else.

    However, many PWME have an elevated ANA, so it could be from that. Infection is one thing that can cause elevated ANA, but ME could be autoimmune.

    I have generally seen the significance threshold for ANA stated as 1:160. An NP or PA once told me that 320 was "evidence of widespread inflammation".

    @Kati your doc is negligent, but we knew that. sigh.
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  16. justy

    justy Senior Member

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  17. AndyPandy

    AndyPandy Making the most of it

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    Hi @justy.

    I also have had a number of the symptoms for lupus. An acquaintance who has RA told me that it took 10 years for her sister's lupus to show up on tests, although she had symptoms during that whole time.

    My ANA in November 2011 (when I was very ill, hospitalised) was 1:320. Speckled pattern.

    The comment from the lab was as follows:
    "ANA occur in association with most systemic autoimmune disease, particularly SLE. They may also be found in other acute and chronic inflammatory diseases. Low titre ANA (<320) are common in elderly individuals without apparent disease, and in healthy relatives of patients with systemic autoimmune disease."

    The neurologist and the rheumatologist both said it was nothing to worry about. Mind you, the neurologist doesn't believe in ME/CFS and the rheumatologist was the one who suggested I try drinking red bull to alleviate severe symptoms.

    @WillowJ I was never quite comfortable with the dismissive attitude towards this ANA result. At some stage I would like to have a retest. Maybe through the new Gold Coast clinic when it opens.

    In my case it could be inflammation caused by ME. I am looking forward to asking these questions when I get an appointment at the new Gold Coast clinic.
  18. Leachim

    Leachim

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    In the future I think watching for autoantibodies will be one way to screen for disease processes to find them long before they have progressed long enough for us to get ill. It seems like we tolerate a certain amount of ”load” on our immunological and endocrinal systems before they tend to get unbalanced and cause a lot of different negative effects. Today doctors diagnose the effects, but medicine has very rudimentary models of describing the processes that are going on long before that. Autoimmunity and/or inflammation are part of the core of most of the diseases that are hard to control (cancer (at least some forms), arterosclerosis, dementias (at least some forms), autoimmune diseases, ME/FM/IBS/etc, etc...).
  19. justy

    justy Senior Member

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    Of course the main issue here with antibodies is 'how do you feel'. Its all very well telling people they only have low tires so don't have an illness - what if you've just spent the past 6 years MORE ill than the average Lupus or MS patient. How can they continue to argue that low levels show you 'might be developing' a disease.

    We clearly already have one and it is well know that in Lupus titres to do not correlate to illness levels - some people have them high when they are in remission and low or even undetectable when their disease is more active. And then there is ANA negative autoimmunity as well, which is rare but possible.
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