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Feeling worse just before venesection

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douglas29858
douglas29858

i been receiving treatment for a while and iron levels are nearly low enough for maintainance, however i always seem to feel terrible around the time of my next venesection. can the treatment have such and effect that i feel better afterwards or is this just in my head, im constantly told its just anxiety so i am wondering if anyone has any similar experience  

1 like, 5 replies

5 Replies

  • norniron
    norniron douglas29858

    Posted

    I tend to feel shattered for a week to ten days after each vensection when they are close together e.g. once a fortnight. When they are more spaced out, like 3 weeks or 1 month between, this is not as bad. It takes at least 3 days for me to stop feeling light headed on standing up from sitting and now that I am at maintenance level and it's been a month since my last venesection, I still feel dizzy when I stand up too quickly, perhaps because my iron levels are so low.
    • douglas29858
      douglas29858 norniron

      Posted

      i too get dizzy when standing however i feel worse just before venesection then after a day or two of recovery from it i feel much better than i did before. its usually worse when i have not had the treatment in a while. im not sure wether this is anxiety because i am anticipating that i need treatment.  
    • PaulRL70
      PaulRL70 norniron

      Posted

      U need to have a saline infusion after your section - This feeling of lightheadness is due to the volume of fluid thats being removed - Saline replaces this and you feel soooooooooo much better afterwards - Take it from me smile just finished section after a starting in Jan of this year and felt like I was spaced out and on another planet after section - at first they kept telling me I wasn't drinking enough water before section - I was practically drinking the Thames every Monday morn (was having weekly sections same time same day each week) then it was only when spoke to my consultant and explained to him about the side effect he advised on saline infusion - wrks like dream - Really bothers me that they don't treat each patient as a individual and think oh easy remove pint blood no prob - No each person is totally different to how they react - Try infusion and don't suffer like I did smile Rm spinning - dizzy spells lasting days - High & Low BP - got to the point walked in to A&E on sat night as just couldnt even sit down eat my dinner just wanted to lay down all time - but even then Rm was spinning - very frightening experience!   
  • mac5002
    mac5002 douglas29858

    Posted

    I've been having much the same experience. I believe that it is the erythropoiesis cycle. About 9-12 days from the previous phlebotomy, the new red blood cells emerge from the marrow. That's when the macrophages supply them with iron. Initially, that iron is supplied from ferritin stores. But once ferritin is lowered to a certain level - and this likely varies by patient - the organs are scoured for iron. This is the whole theory behind phlebotomy. Hemosiderin in the organs is converted back to ferritin to supply the new emerging RBCs. 

    Because I've had sgnificant cardiac iron loading, my phlebotomies occur in a monitored clinical setting. So I have a complete new set of blood work done every two weeks. I think this has afforded some key insights into this process. For me, ferritin levels declined over the course of the first 6 phlebotomies. Then they went up. This confirms that body iron is being accessed. There's nowhere else for it to come from. At some point they will plateau and then go back down again. That's when we reach maintenance levels. Body iron has been depleted.

    On these 9-12 day 'anniversaries', I've had a few AFIB events, have felt extremely fatigued, and occasionally have felt rather like my internal organs are being passed through a cheese grader.

    It's not in your mind. It's the physical cycle of the extraordinary steps the body takes to try to achieve homeostasis.

  • sheryl37154
    sheryl37154 douglas29858

    Posted

    I found I got 13 days of relief from fatigue and pain after a venesection, then it descended on me again.  I look forward to my venesections to get that toxic stuff out of me and get those 13 days of relief.  I am on maintenance venesections of every 3 months.

     

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