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ferritin level not going down despite fortnightly blood donations

Posted , 4 users are following.

chorleyboy
chorleyboy

For 15 months now, I have been giving blood fortnightly, the last one being wednesday, and my ferritin is up again.   It is always around 3000 and no sign of it going down.    Because the iron overload resulted in a tumour on my liver, which was removed by ablation, I am being monitored just in case it returns, but the consultant says it is not the liver that is affecting the ferritin level from going down.   What could it be?    I would like to know if anyone else is having the same problem.   Glyn

1 like, 9 replies

9 Replies

  • philx
    philx chorleyboy

    Posted

    Hi Glyn

    I am very sorry to hear of your situation, there seems no logic as to

    Why your levels are not going down you must be completely dejected

    I truely hope I am not put in your situation???

    What happens if they take no blood at all,do your levels go higher???

    It will be very interesting to see if anyone else is in your situation but

    Soul destroying to people who are waiting to start treatment, and it could

    Happen to them.

    Best of luck I hope things improve for you

    Cheers Philx

    Ps perhaps or American or Canadian participants might know of advance

    Treatments over there

    • chorleyboy
      chorleyboy philx

      Posted

      Hi, thank you for your kind message.    It is very disappointing when there seems to be no improvement.    Just recently I decided, well what the heck, its not going down, I give blood fortnightly with no significant change and decided to change to monthly to see what happens.  I had the ferritin reading after a month and it was up again, only slightly, but still in the 3000 range.    It was suggested I could try weekly but another patient tried this and it made no difference.so they scrapped that idea.    My only concern is that the iron overload in my body will decide to store itself in my liver again, or perhaps another organ, if I can't get the ferritin level down.    Will keep going and hoping for the best, Glyn

  • Mrs._Z
    Mrs._Z chorleyboy

    Posted

    Wow, you appear to be having difficulties with the ferritin level.  When diagnosed my Dr. wanted me to donate 2 x weekly and I freaked out and my levels were just under 1000, so she agreed to once weekly.  So have you asked your Dr. if by giving more frequently could help to lower the ferritin. As we've said many times, we all have different symptoms, different reactions to giving blood etc. and that's probably the most difficult thing about treatments etc. Maybe assure your Dr. that you want to be very aggresive with this treatment and ask  all kinds of questions.  Hopefully you'll soon be in a better place.  Also, diet can affect your ferritin levels.  Stay away from foods high in iron (cereals) , learn the difference in heme and non-heme iron and work with that for awhile to see if that helps at all.  Avoid vitamin C, have more calcium and avoid sugar loaded foods and drink with your meals drinks with tannins (coffee, tea and red wine).  Good luck!!!!!

    • chorleyboy
      chorleyboy Mrs._Z

      Posted

      I tried monthly blood donations to see what the difference would be and it was up again, only slightly, but I am back now to fortnightly.   Another patient was asked to give weekly donations and I thought that perhaps that would do the trick, but it didn't work either.      I am very careful with diet and everything you say to avoid, I do.   I have asked lots and lots of questions but no-one seems to have an answer as to why the iron in my body will not go down and I am concerned that it will store itself yet again in my liver or perhaps another organ.   The hospital are monitoring the liver for signs of a recurrence but even they dont have an answer.     They seem only interested in the liver and not haemochromatosis or any of the other symptoms.  But, I shall keep going and hopefully be surprised one day with a lower ferritin level.

    • pete_15992
      pete_15992 chorleyboy

      Posted

      Hi Glyn, very sorry to hear of your dilema I can see it must be very concerning. I'm waiting for my venesection to start so I can't speak from experience but the way I imagine it is that the serum ferretin which is removed by extracting blood is very quickly replaced when the body produces more blood cells and depletes the iron stores. So even though the body's iron stores  are decreasing the serum ferritin level (which of course is the iron in your blood) may bounce back up. In anycase the iron stores must have decreased by the amount of iron removed by venesection - which is key.  This is just my way of looking at it - I'm not a health care professional. Hope you see an s.f. decrease soon - I'll be curious to see how mine reacts.

      All the best

  • sheryl37154
    sheryl37154 chorleyboy

    Posted

    As you know, this is abnormal.  I hope they are doing a lot more health checks on you.  Something else is going on.  Are you leaning on them for a 2nd opinion from another specialist? or another consultant up the chain - someone who actually researches and studies this problem.

    When was the last time they did a C-Reactive Protein (CRP) test of your blood?

    Don't accept a 'wait and see' from them any longer.

     

    • chorleyboy
      chorleyboy sheryl37154

      Posted

      Hi, thanks for the advice.  As far as I am aware I have not had a C-Reactive Protein (CRP) test done on my blood but I will be asking for this next time.     When I was first diagnosed I was told that haemochromatosis caused my diabetes melitus and I am on 4 metformin a day for that.   Also, barretts esophocus, small lesion on the windpipe and I am on 2 tablets to control acid.     My diabetes is still too high and I am waiting for a check up on that, it is 13.5 and should be between 4 - 7.     Not sure what a C-Reactive Protein(CRP) test will show, perhaps you will be kind enough to advise on that.   Many thanks for your advice, Glyn
    • sheryl37154
      sheryl37154 chorleyboy

      Posted

      Inflammation, malignancy - off the top of my head.  My haemotologist tests it regularly.  Obviously there is something very wrong going on with you, and it should not be left uninvestigated.

      Have you checked if your medication might be a cause?  Also, have you been checked for helicobacter pylori, regarding your esophogus, windpipe and acid problems?

      Actually, I have just looked at wikipedia's description of Barrett's Esophagus and it sounds quite serious.  Your CRP is probably through the roof, and this inflammation could be causing your high ferritin.  Check to see if you are being treated properly for this BE.

       

    • chorleyboy
      chorleyboy sheryl37154

      Posted

      Thank you for the update.   I will ask to have my crp checked out because there is no sign of it coming down and no-one seems to know why.   Just keep donating blood is what I get but I need answers.     

      The Barretts esophagus lesion they are leaving for now as long as it doesn't change or grow and I was told I would need to have regular endoscopys to keep an eye on it but I haven't been asked to have that either.    It's annoying when I keep trying to clear my throat.     Many thanks for your input, Glyn

       

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