1. Community
  2. Blood & Immune System
  3. Haemochromatosis

Ferritin level 1887. What is yours?

Posted , 7 users are following.

Chris8968
Chris8968

Just had my first appointment and venesection and found my ferritin level is 1887.how does that compare with everyone elses?

1 like, 8 replies

8 Replies

  • aj98048
    aj98048 Chris8968

    Posted

    The highest mine has been is 1348. I just had 4 phlebotomies in the past 2 months. Next week I will get my levels checked again. I will be interested to see what my ferrritin is like next week. I've read different things about how much they go down after each visit. 

  • abookreader
    abookreader Chris8968

    Posted

    Mine started out at 597, rose to 602 and now is 151. Ive had 6 phlebs...1st three were every 8 weeks apart. last three are now every 2 weeks apart.
  • bruce97898
    bruce97898 Chris8968

    Posted

    Mine was right at 4,000 when I was diagnosed.  Needless to say, that is much higher than most people's.  After a year and a half, I am down to 650, currently.  I did weekly phlebotomies for the better part of a year but my doctor was anxious to reduce that as doing it so frequently takes a toll.   I have mild cirhossis from it, but things looked bleak at first.  I am much better.  I go every other week now, so I'm hoping I will be down quickly.  

    • patrick00275
      patrick00275 bruce97898

      Posted

      4.000 is high and you have done well to get down to your current level,Mine was 26.000 not a typeo i've been 3yrs of weekly bleeds and its down to 17.000 so still some way to go,

    • bruce97898
      bruce97898 patrick00275

      Posted

      Wow!  I have never heard of anyone that high, one other person in the teens.   How were you diagnosed?  Are you able to function?  I can't imagine going weekly for that long.  

      Have you ever looked into apheresis or concurrent ex-Jade?   I know both can be tricky to get into.  

      I hope you are doing as well as can be with such high levels.  I am interested in hearing more about it. 

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.