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weekly venesections

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chorleyboy
chorleyboy

I am on weekly blood letting now, previoulsy fortnightly, and last week the ferritin level went up only 20 but yesterday I had another pint taken and it has gone up 700.   What is going on I wonder.      It just seems that the level is never going to reduce.   I have been told that I will not find out the level for three weeks as they only do the test once a month now.      But of course I have to go and giv e a pint of blood and yesterday I felt quite shaky afterwards but it wore off.     I am 69yrs and does anyone know how long it takes to replenish the blood they have taken out.     And, I asked about a CRP test, co reactive protein , and the nurse didn;t know what this was.    My understanding is that the test may reveal whether or not it is hindering the ferritin level from the iron overload from reducing because maybe it is too high and also it may indicate my risk of heart attack or stroke, as the iron stores itself in different organs in the body.     Thanks to everyone for all their advice, Glyn  

1 like, 14 replies

14 Replies

  • maureen99963
    maureen99963 chorleyboy

    Posted

    You have to be careful not to take out too much and too often or you can grow resistant to the effects you are trying to achieve.  The blood donation centers I donate with make us wait 50 days and my Hematologist does not recommend removing blood more than every two weeks.
  • Mrs._Z
    Mrs._Z chorleyboy

    Posted

    I am in the US and close to your age.  I am now in the maintenance program, but the procedure for me may have been a little different.  I was scheduled to have weekly blood donations and prior to each donation each week, I went to have a blood test which indicated if I was becooming diabetic or anemic as well as the ferritin level.  If there was any reason not to take the blood (like being anemic), they would notify me and I would skip a week.  Also, during the weekly donations, I was very proactive with my diet -- no RED meat, no  cereals and read every label regarding it's iron content.  Not sure if that helped but I did see some weekly a drastic decline and other weeks an increase or sometimes level.  It finally got to 41 which is when I went on the maintenance program. All the best to you

    • chorleyboy
      chorleyboy Mrs._Z

      Posted

      Hello and thank you for your comments.   I do have diabetes as a result of the iron overload and take metformin four daily.    I have also had an ablation on my liver to remove a small tumour, which again, was as a result of the iron storing itself in my liver.   I have been giving blood fortnightly for about sixteen months now and because there seems no stability in the ferritin level, I now have to give blood weekly.   Last week, it went up about 20, but this week it went up 700 and I cannot seem to see a reduction.   My ferritin level is currently at just under 3000, so you can imagine I have a long way to go to reach the goal of 50.    I am very careful with my diet and read everything.  Someone suggested  a CRP test but the nurse I spoke to on wednesday didn't know what that was.      I shall wait and see what the next reading is, not next week, but in three weeks time, because they only test the ferritin level monthly.      My main concern is that giving blood weekly may not allow my blood to replenish itself properly.     Thank you again for your advice, Glyn

  • sheryl37154
    sheryl37154 chorleyboy

    Posted

    CRP is just a reading of the level of inflammation, infection, malignancy in your body.  CRP does not cause anything.  The inflammation, infection, malignancy does and increases your ferritin level.

    As you have previously said you have a chronic aesophagus condition (if I remember right) which causes a high level of inflammation.  Your aesophagus dr and your haemotologist should work together on this.  You really need to find a way to reduce your inflammation to reduce your ferritin level.

    While there often seems to be an official line about how often someone should be venesected, when it comes down to it, the high ranking haemochromatosis researchers realise there needs to be personal tailoring.

    I cannot remember if you are in Scotland or Ireland.  If in Ireland, try to get into some program with Prof John Crowe, at University College Dublin.  I have just been talking to him at a conference in Australia.

    If you travel to France, look for Prof Pierre Brissot, INSERM-UMR 991, Department of Biochemistry, Pontchaillou University Hospital, Rennes, France.

    Not saying you will be able to get in, but at least you can try and you may be directed to some assistance.  At the very least, read their studies.

    Make sure they test your Hb (Haemoglobin) before each venesection if you are having them frequently.  If your red blood cells are not high enough, i.e. have not recovered from your previous venesection, they should not venesect for a couple of days until it has recovered.

    Good luck.

  • sheryl37154
    sheryl37154 chorleyboy

    Posted

    If you think of it this way - you have high ferritin because of having hereditary haemochromatosis, and you have high ferritin because of your inflammation.

    Your haemochromatosis ferritin has probably been reduced after those years of venesection, but your inflammation ferritin keeps increasing because the cause of this inflammation has not been cured.

    Inflammation ferritin from another cause usually does not take kindly to frequent venesection because your red blood cells are not recovering quickly enough.  You must also get the cause of the high inflammation treated and cured in order to reduce your inflammation ferritin.

    What is your current level of serum iron and TS%?

     

    • chorleyboy
      chorleyboy sheryl37154

      Posted

      Hello Sheryl, thank you for all the information.     My current levels are Hb 129   SeFn 2902 and Ts 92      When I go to the hospital to give blood, they just take it without checking whether I have replenished enough from the previous week.      They check my blood pressure before and after and my sugal level as I have diabetes melitus.      Six months ago I had an edoscopy when it was said that I should have regular endoscopies, viz., every three months, to check the small lesion on the windpipe, but I have not heard anything since.     Your advice is most appreciated, Glyn
    • sheryl37154
      sheryl37154 chorleyboy

      Posted

      You say Hb129, or do you mean serum iron 129?

      If Hb, your red blood cells are in an acceptable range for your next Vx.

      If you have a serum iron of 129, you have a lot of free iron in your blood.  92% of your serum iron is being transported into your organs.

      Prof Pierre Brissot states that TS% >75% is toxic, so I really think you need to be referred to someone who specialises in haemochromatosis, as well as get treatment to get those inflammation levels down.

      You may have to put that iron into action and get assertive with your doctors!

       

    • chorleyboy
      chorleyboy sheryl37154

      Posted

      Hello Sheryl, thank you for your comments.     I took the readings from my booklet which they update each time I have a ferritin test done.     The last entry gave these readings, I thought Hb referred to haemogloban and the ferritin level is definately 2902. as at 3rd august. I am due another ferritin test next wednesday 17th august, so I am hoping it has gone down.    If not, I shall have to speak to a doctor.   I shall let you know the next set of readings, thank you, Glyn
    • sheryl37154
      sheryl37154 chorleyboy

      Posted

      Yes, Hb does refer to haemoglobin.  I was hoping you had a reading of your serum iron too to see how much you are absorbing.
    • chorleyboy
      chorleyboy sheryl37154

      Posted

      Hi Sheryl, just had another look at my book whcih is marked up every week and now that I know Hb is haemoglobin it shows 129 don't know if that's high or not.   The Se/Fn is the result of the ferritin test and on 3rd august it showed 2902 and the next test is on 17th august.   The last figure TS which I believe is transferrin saturation is showing 92  and again, I dont know if this is high or not.    No one mentions the Hb or TS figures only the ferritin test, if they have done a test, to see if it is up or down.    I am hoping it is down on wednesday but now that I am on weekly venesections I should see a steady reduction and if I don't, well, what is the point of weekly venesections, if it is not having the desired effect.   And, I will have to ask to speak to the Consultant for answers.  The iron has already stored itself in my liver causing a tumour, which has been ablated but apparently it can store itself in any of the organs and I have know way of knowing if this is happening.     Thank you for your support, Glyn

    • Mrs._Z
      Mrs._Z chorleyboy

      Posted

      I have to agree that everything with this condition is very confusing (i.e. genetics, saturation, various blood levels as well as ferritin).  I was officially diagnosed (after having all three tests including genetics) at age 69 so I wanted to be proactive.  My Dr. rain an MRI to see the status of my organs and only had a slight problem with my liver.  Later I had a heart MRI to see if iron was being stored there which came back ok with no evidence of iron storage.  Here in the States they are only concerned with the ferritin level and nothing about saturation.  In fact after reading your issues, I was thinking that no one really knows how much iron is being stored in the organs regardless of the ferritin level. This has posed more questions for my Dr.  I wish we had more information to share with you but it may because no one really knows.  Please take care, do your research and be loaded with questions and demand answers.
    • sheryl37154
      sheryl37154 chorleyboy

      Posted

      Yes, your TS% of 92% is terribly high.  Normally it is not necessary to mention TS%, but that is only if it is doing the right thing and remaining reasonable.  However, >75% is toxic, as per Prof Pierre Brissot.  That is why you really need to get some high level consultancy.

       

    • chorleyboy
      chorleyboy sheryl37154

      Posted

      Hi Sheryl,  thanks for your message.   Wednesday is D day, and I shall ask to speak to someone who knows more about my test results and not fob me off with 'see you next wednesday for another blood donation'    regards Glyn

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