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iron overload

Posted , 7 users are following.

sue93252
sue93252

iron overload

my ferritin levels have come back at a level of 1008 is this high?

1 like, 12 replies

12 Replies

  • philx
    philx sue93252

    Posted

    Hi sue

    Yes it is high,mine was 1130 to start,I've had my 7 th venesection today

    It has to come down to 50,it varies from week to week how much it drops

    My last one only dropped by 10,so I have no idea how many more venesections

    I will need,down to 661 at the moment, sue take it one step at a time

    Cheers philx

  • terry34297
    terry34297 sue93252

    Posted

    Hi Sue.

    Yes that's pretty high. Mine was 1078. On my 4th vs now and still feeling awful! My ferritin was tested last week and it's down to 887, so still a way to go. Has your consultant booked you in for a venesection yet? You will probably have one every week until your levels drop to 50. I'm slowly adjusting to having this condition and each vs gets a little better.

    • philx
      philx terry34297

      Posted

      Hi Terry

      You finding v/sections easier now???improvement on the way

      You were apprehensive about your first one???

      I had 6 weekly one's. now I'm having fortnightly,v/sections, my

      Hemoglobin is a bit irratic between 160 to 120 this is why I was feeling

      Tired.aches and pains-lightheaded .I'm hoping this is just my body

      Adjusting to the drop in iron,????they say they will only be concerned

      If it drops below 120 and doesn't go back up.

      Good luck to all enduring this Celtic curse

      Cheers philx

    • terry34297
      terry34297 philx

      Posted

      Hi Phil.

      Yes I'm getting used to my weekly vs. First 3 didn't go well. Blood clotted on 2nd, 3rd they couldn't get a vein for the iv drip. They stuck 3 needles in my hand before giving up! I continued with vs without the iv drip and felt fine without it so not bothering with that anymore. The nurse noticed my hands were cold (it was a boiling day) and I told her my hands and feet never warm up but it was just another thing I have always lived with, but she said I should mention it to my gp. My hemoglobin has dropped to 168 ( it was 190) to begin with. I'm still suffering with these awful headaches, they never go away. Hopefully things will improve as levels come down.

      Sorry to hear about your problems with hemoglobin. At least you on fortnightly vs now. It's nice to come here and have a moan as no one really understands how hard it living with this condition.

    • philx
      philx terry34297

      Posted

      Hi Terry

      Its true when you tell people you have hemochromatosis, and you

      Explain its high iron levels they say is that anaemia (well to me they do)

      But that said before I was diagnosed I had never heard of it.

      I was thinking of buying a hemochromatosis t.shirt with the details

      On it so people will read it and learn about it,I have put a poster up in my

      Gym but I cannot gauge reaction I've felt too ill to go,there should

      Definitely be more publicity about this Celtic curse, even my GPS

      Don't know a great deal about it.

      So yes it's good to have this forum to help each other through this

      Cheers philx

    • mike80628
      mike80628 philx

      Posted

      I agree Phil. We actually end up becoming the experts on this. Nurses know a little, GPS a little, the Consultant a lot more, but still not enough to give you good advice on diet etc etc. We become the real experts...and it's great as we share all we know and learn with others....

      Hope you're doing OK...I've been following your progress. Being in maintenance is great....I'm training for the half marathon at the mo, and I'm feeling great. Good to be a regular donor as well....

      Keep me posted...

      Mike.

  • mike80628
    mike80628 sue93252

    Posted

    Hiya Sue...

    Yep, that is high..should be between about 50-300 at the very most.

    Mine was 2000 last summer. Had a year of weekly phlebotomy treatment. It's now 23. Has been low 20s for last three months. I'm now a blood donor going every 6-7 weeks at the mo. If my levels stay in low 20s over the next 6 months or so, I'll start going less, maybe every 2-3 months...just got to monitor it. My hospital gave me 20 blood test forms...so I just go as I please...quite regularly initially.

    Have you been tested for HH yet, Haemochromatosis? Sounds likely that you may have it?

    Let us know....it will all be fine. Get the test, and chat with your doc about lowering the ferritin level asap...

    Keep in touch...we're a good supportive bunch here...the iron Gang...

    Mike

    • sue93252
      sue93252 mike80628

      Posted

      hi mike 

      thanks for reply i have to have another test in 2wks thats all iv been told so far and that last time my levels were 935!! well i didnt even know i had been tested before, i think now i have this info and feeling a little concerned i will be seeing Dr asap for some answers... 

    • sheryl37154
      sheryl37154 sue93252

      Posted

      Sue, go armed with information from your country's haemochromatosis assoc.

      It is important to self educate, to ensure you are getting appropriate treatment.

  • anne59990
    anne59990 sue93252

    Posted

    Hello, hope you dont mind me butting in here. smile. Im in Ireland, have lost 2 first cousins to HH many years ago, 6 years ago I had a blood test which showed I had an elevated iron level in my blood, but for all sorts of reasons stuck my head in the sand, and its taken me 6 years to get a repeat blood test, and some has been sent away for genetic testing. My ferritin level has come back at 381, but my saturation is normal, does that make sense?

    • sheryl37154
      sheryl37154 anne59990

      Posted

      It does make sense, if it turns out you are only a carrier, i.e. one gene.  Then other factors should be looked at as you why you have a slightly high ferritin level (depends on your age), and the possibility of it increasing.

      Other factors include inflammation, malignancy, alcohol, fatty liver, etc. which need to treated differently.

       

  • sue93252
    sue93252

    Posted

    well i went to see dr today (a different one) and she was surprised at my levels and has booked me in for more test on tuesday,she admitted that she was not up to date on this condition and would read up on it before i go back to see her so she knew how to deal with it she also told me my ferritn level was 900+ back in 2007 so its been for a long time , so hopefully ill get the treatment i need now . 
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