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Ferritin levels dropping too fast?

Posted , 5 users are following.

karyn001
karyn001

Hi all,

Newbie here, found out I was homozygous H63D in January with a ferritin level at 483.  I have since given blood twice in 5 months and my ferritin has dropped to 63. 

I was told that my ferritin levels should drop by about 30 each time so I was expecting to be at about 420.

Should I count my blessings that my level dropped so fast?  Or is something else going on here that I should worry about?  Thanks for you help on this as I has got me a bit worried.

 

0 likes, 9 replies

9 Replies

  • outremer84
    outremer84 karyn001

    Posted

    I started at 612 and only took 6 goes to get below 50. Everyone's different, I wouldn't worry.

    If you want reassurance you can ask for your transferrin saturation to be measured.

    • karyn001
      karyn001 outremer84

      Posted

      Thanks for the quick response Outremer84!  

      My saturation was at 37% in January and is down to 30% now.

    • outremer84
      outremer84 karyn001

      Posted

      Well, at least they're both going in the right direction!

      Hope you feel better for it.

  • eric89660
    eric89660 karyn001

    Posted

    I seem to remember reading that H63D is quicker to deiron.
    • karyn001
      karyn001 eric89660

      Posted

      Really?  I was looking for infomation on that just now!

       

  • eric89660
    eric89660 karyn001

    Posted

    I can’t remember where I saw it but it could have been the Iron Disorders Institute. Perhaps others could back me up. Also,there’s a good UK Haemochromatosis support group on Facebook. I’m C282Y/C282Y so it took longer.
  • jwrhn1951
    jwrhn1951 karyn001

    Posted

    Hi

    I'm also a homozygous H63D. My ferritin was 2000+ when I started  and it took 25 venesections to de-iron and my ferritin level dropped to 25. My ferretin did not drop evenly it was step wise, it would go down a little or sometimes even go up a bit and then drop a couple of hundred points and level out again.

    Most Docs have little to no experience dealing with a H63D homozygote, and a lot of them will swear that we will not load iron. It took a liver biopsy showing 4+ iron deposition and liver damage for them to admit I was loading iron.

    Don't worry sounds like they diagnosed you before any damage was done.

    I would not worry apparent

    • sheryl37154
      sheryl37154 jwrhn1951

      Posted

      jwrhn, yes, homozygous H63D is deemed to be fairly harmless, and some countries don't accept that you really have haemochromatosis.  They will say the high ferritin is caused by something else going on.

      My husband is homozygous H63D and when diagnosed (because our son was diagnosed C282Y/H63D - I am homozygous C282Y) with a ferritin level of 552 in his early 50s (husband).  His ferritin level reduced quickly after a few venesections.  Then he got Hodgkins Lymphoma (but that is another story) and his ferritin never rose again.

      Yep, everyone is different.

       

  • miller.jones
    miller.jones karyn001

    Posted

    It can vary 30 is a guide number that is used when numbers run lower but for some people there first few sessions they can drop large amounts.

    I saw someone who had 900 and had a 1 session every 2 weeks after 3 months he was down to 326 but then he really went slow it took 7 months to get to 119.

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