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Ferritin did not improve after phlebotomy

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M1954
M1954

Hi, my doctor likes to keep my ferritin at 30 it went up to 35.4 in April so on May 10 I got a phlebotomy (maybe I waited too long and my ferritin could have been higher when I got the phlebotomy then on April 19 when I saw the results).  Anyway I got my blood retested 5 days after and my ferritin didn't improve much.  It only went down 3 points.  Its now 35.1.

0 likes, 7 replies

7 Replies

  • eric89660
    eric89660 M1954

    Posted

    I have read people on the Excessiron forum say that the best time to have a blood test is 2-3 weeks after phlebotomy/venesection. They are usually quite knowledgable about this type of thing. 
  • samantha27302
    samantha27302 M1954

    Posted

    Hi everyone.

    Anyone know what the genetic tests come back like? 

    Many thanks

  • eric89660
    eric89660 M1954

    Posted

    To have classic HH someone would have two defective genes,e.g. C282Y/C282Y like me. If you just have one then you don’t have it but a few will still load iron. If you’re in the USA you may get extensive results but where I am in the UK some doctors only tell you what you ask about. Ferritin can also be raised for other reasons,e.g. inflammation/arthritis.
  • samantha27302
    samantha27302 M1954

    Posted

    Thank you so much for replying. 

    I’m in the UK.

    So if my results came back :

    282 YY mutation

    63 HH wild type

    Ferritin  458

    ALT 40

    Transferrin saturation 52

    Does this this I DO or DONT have Haemochromatosis?

    I’m so confused & worried. 

    Many thanks 

    • eric89660
      eric89660 samantha27302

      Posted

      Mine were given verbally,that I have two C282Y genes. I think yours suggest that you have one C282Y and one H63D. If that’s the case I would say you do have haemochromatosis. The transferrin saturation is a clue too. Although not excessively high,if it’s over 45% for a woman (50% for a man),you are likely to have it. I’m assuming these are your original results as your ferritin is lower now. I assume that your ALT is lower now as mine came down once I started treatment.
  • sheryl37154
    sheryl37154 M1954

    Posted

    When you get that low your ferritin does not move that much.  I was best on 34 but my TS% was always high.  I continued to have venesections every 3 months regardless of my ferritin level and it went down to 24 but best of all my TS% finally reduced to normal.

    Don't be worried about your ferritin results, it could be quite different next time.  And maybe your blood test was wrong timing.  I have my blood test prior to venesection so that I know what it has built up to.  That is more important me.

     

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