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Heamochromostosis advice

Posted , 4 users are following.

Flangies
Flangies

So does anyone know roughly how long it will take to reduce my iron levels? Currently don't know proper figures but I have been told in lamens terms that it is v high at 97% and it needs to come down to less than 50%

1 like, 7 replies

7 Replies

  • megan36105
    megan36105 Flangies

    Posted

    It's hard to say without knowing what they are or how often you're having phlebotomies/venesections done.

    When I was diagnosed my ferritin was at 600. For two months I went every two weeks and had a bag of blood taken out. Then it dropped to every four weeks for about two months, then every six weeks. I'd say that after... 5/6 months I was relegated to every 3-4 months. I stayed that way for a couple of years then I had a serious look at my levels and based on how I was feeling we changed it to every six months. Now, my ferritin (well, I'm getting my blood tested tomorrow so I can only give you what my last tests from 6 months ago said) is at 48 and my new specialist told me that based on my age (I'm 25), how slow my iron climbs (it only climbed about 8 points in 8 months) and my regular menstrual cycles there's a very good chance that I won't need another phlebotomy until I hit menopause.

    • Flangies
      Flangies megan36105

      Posted

      Hello Megan, thanks for taking the time to message, I am currently under private medical and having them ecery 2 weeks, until end of February, so another 2 to go privatley.  Then I am going to see specialist to see if my levels are good.......then I am being refred to NHS for the rest. Hopefully then I will need them every 2 months, then down to 2 times a year moving on; this is the plan

       

  • sheryl37154
    sheryl37154 Flangies

    Posted

    Hi Flangies, there are a number of factors involved.  For example, are you homozygous C282Y (can be aggressive), compound heterozygous C282Y/H63D (less aggressive), and homozygous H63D (barely effective)?  There are more, but we are told they are less and less effective.  Except if ferroportin comes into the picture which I don't understand a lot about.

    You appear to be mentioning Transferrin Saturation %.  After 16.5 years of venesections, my last lab report was 107%!  It is often in the 87-99% range.  I have not come across anyone with homozygous C282Y whose TS% reduces to less than 50%.  It appears to be a feature of 'real' haemochromatosis.

    My serum iron is always high too.  My haemotologist got my ferritin iron down to 7 (maybe accidently!) and I now find my optimal level is 34.  I am now on maintenance venesections of every 3 months.  By the 3rd month I have crept up to about 60 or less, then a venesection removes about 25 and I am back down to my optimal level.

    So while is is known that a venesection will remove 25 (micrograms??) it depends on how much you are absorbing in the meantime.  In the beginning, the more frequent the better to get your ferritin down to <50, some="" haemotologists="" go=""><30 to get the stored iron out of your organs.  i was weekly to begin with.  some need twice a week.

    to get the best answers, you need to supply all the information necessary to do so and even then it is a guestimate.

    ask for copies of your lab reports so that you can analyse the results and self evaluate.

      to="" get="" the="" stored="" iron="" out="" of="" your="" organs.=""  i="" was="" weekly="" to="" begin="" with.=""  some="" need="" twice="" a="" week.="" to="" get="" the="" best="" answers,="" you="" need="" to="" supply="" all="" the="" information="" necessary="" to="" do="" so="" and="" even="" then="" it="" is="" a="" guestimate.="" ask="" for="" copies="" of="" your="" lab="" reports="" so="" that="" you="" can="" analyse="" the="" results="" and="" self="" evaluate.="">

    to get the best answers, you need to supply all the information necessary to do so and even then it is a guestimate.

    ask for copies of your lab reports so that you can analyse the results and self evaluate.

     >

    • Flangies
      Flangies sheryl37154

      Posted

      Hello Sheryl,  I do have my lab reports and here are the results.  P. C282Y genotype: YY

      P. H63D genotype: HH

      I am HOMOZYGOUS for the p.C282Y mutation.

      What does this mean?

    • sheryl37154
      sheryl37154 Flangies

      Posted

      Homoyzygous means you have two genotypes of C282Y, i.e. one from your mother and one from your father.  They are entitled to a free genetic test as are your siblings.  If they have not done so, get on their backs about it.

      Your country's HH assoc may have a sample letter you can print off for them to take to their dr to have this test done.  Don't let dr get away with just doing an iron test.

      Even if they are just carriers (i.e. one C282Y genotype) and have normal Iron Studies, it is important to know this as further generations will be affected, depending on if their partners are carriers or not.  That would mean their children could have hereditary haemochromatosis, or when they have children (depending on their partners being carriers also), their children could have HH.  And so on it goes.

      Does this answer your question?

  • terrihigashi
    terrihigashi Flangies

    Posted

    I started out with ferritin counts of 1675 and in two months I was 1100 and I just had one last week, will find out today, but I was told that it could be a year.
    • sheryl37154
      sheryl37154 terrihigashi

      Posted

      Terri, If you are homozygous C282Y, my haemotologist would be venesecting at least once a week, if not twice, for a little while with a level starting at 1675.  Then after 2-3 months, and depending on how much the ferritin level was dropping and how much you were absorbing (i.e. TS%), he would go to fortnightly, then monthly, etc.
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