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De-Ironing

Posted , 7 users are following.

abookreader
abookreader

Hello,

Can you tell me how you felt after you were de-ironed? Also include the number of phlebotomies it took to get to maintenance phase and where you iron levels were when you started? Thanks so much for your time.

1 like, 20 replies

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  • philx
    philx abookreader

    Posted

    Hi

    People can give you info on getting to maintenance stage,but this

    Could give you unrealistic hope,what works for one doesn't mean it

    Could work for another, Glyn could well have asked this question a long

    Time ago,but he is still going,and no end in sight,

    Just take your treatment one at a time till you reach your own target

    No matter how long it may take, then you will not be disappointed???

    Good luck

    Philx

  • garrett82
    garrett82 abookreader

    Posted

    it was like 3 months, but i felt like a new person. like i was 18 again. phlems were rough, wont bs there, but i hate needles. drink a lot of fluids and when its over, you will feel like a teenager. a week after my last one i was climbing a mountain and surfing in san diego. It wears you down, forget what feeling normal is like. if you have it all set up, youll be golden soon
    • garrett82
      garrett82 abookreader

      Posted

      every two weeks. they take a lot out. but i promise you'll start seeing results fast. first month is rough. after that youll feel a lot better. not sure what phlix is talking about, but i was in there with others with it. just listen to whatever your hemo says. i was a totally different person

    • garrett82
      garrett82

      Posted

      they acually stuck a magnet to my bag. best advice is to relax and joke with them, makes it go by faster. i went through it last spring and just had a blood test. everything is fine. just take whatever meds they give you
    • philx
      philx garrett82

      Posted

      Hi Garrett

      What don't you understand ,someone can state it took them 3 months

      To drop from a certain level provided it drops each time, but it can go

      Up as well as come down, I've had 1 go up 242(could be due to overindulgence)

      1go up by 179,another 1 didn't move at all,some dropped from anything from 10

      To 219 ,I started at 1479 on the above how could I possibly put a time

      Frame on how quickly I would reach maintenance stage ,I still have

      679 to drop,if I remember right mike was 2000 took him 12 months

      I mentioned Glyn he started over 5000 he is still going .illness affects

      Levels falling, totally unrealistic to put any time frame on this condition.

      Cheers philx

  • Mrs._Z
    Mrs._Z abookreader

    Posted

    Agreed that we are all different and each of us has there own schedule on being deironed.  I may have been one of the fortunate ones......Diagnosed last Oct. and started with weekly phlebotomies and was deironed by February.  I was also fortunate with the symptoms since I never had many of the symptoms people on this site speak about.  Since being deironed, I had one phlebomtomy in July.  My last blood test was in early November and my ferritin was at 78.  My Dr. said I was ok until Feb.  During the course of being deironed, I would get upset when the number went up and my kids kept telling me not to look at because it will take time.  So, don't get your expectations too high and go along with the plan of continuing the phlebotomies.  The results can vary from week to week so it's easy to get misled.  I took hat the whole needle thing which was the most difficult part of the treatment.  Stay positive and keep following the orders from your Dr.  Good luck. 

    • garrett82
      garrett82 Mrs._Z

      Posted

      agree 100% ^ first month levels are out of control. i got so mad inwanted to quit going. ride it out.
    • abookreader
      abookreader garrett82

      Posted

      ive had 4 phlebs this year. My regular doctor said do phlebs every 8 weeks. so I did three of those starting in june and did one every 8 weeks. Then went to specialist hematologist who said no they need to be done very other week which i started doing one week ago today. nexct one is next week. What Ive noticed is Im more tired than before and have more aches and pains I think due to the more frequent schedule. Like crazy calf cramps and shoulder aches etc etc and Im fairly young (in my 30's). U have anything symptoms that sucked? Thanks for your help....

    • garrett82
      garrett82 abookreader

      Posted

      yeah, like i said, overdose yourself with water. same for me for a while, but you will surely see a change soon. im 33, so around the same age. they are taking a lot out, put something back in.
    • abookreader
      abookreader garrett82

      Posted

      Thanks dude appreciate your help. Im where you were like "is this supposed to get better??? they got my blood out!" haha

    • sheryl37154
      sheryl37154 garrett82

      Posted

      Garrett, you have been pretty lucky for your reductions and end results to be so good.  It may have something to do with being diagnosed early.  A lot of us were not so lucky.  Maybe we helped pave the way for people to get diagnosed younger.

      I agree with Philx on this.  I was left undiagnosed for 9 years with severe symptoms, till my hips broke up from my blood being so thick with iron, it could not get into the fine capilliaries which feed the bone.  I also had left side chest pains.  My de-ironing was long and many.

      I was highly motivated to get that toxic stuff out of me so happy to turn up for phlebs.  Sometimes the levels went back up - usually caused by an infection, a cold, etc.  My symptoms and complications caused by such a delay caused me to have to give up work.  27 years after the onset of symptoms, I still feel them.  Although I loved my job, there is relief from not working.  It makes it easier.

      There is no fixed formula.  It is said we lose 25mcg of iron per phleb - that is 1x50mm nail.  Based on that it takes 4 phlebs to remove 1 gram of excess iron (4 nails).  A person with with moderate iron overload may have between 4 and 10 grams of excess iron, which will take between 16 and 40 venesection to reduce to normal levels.  Severe iron overload may be up to 40 grams of excess iron which will require up to 160 venesections to reduce to normal levels.

      Then there are those whose TS% is always high, which means they are loading more aggressively than others.

      So, how long is a piece of string?

       

    • garrett82
      garrett82 sheryl37154

      Posted

      I am very sorry to hear that, that sounds horrible. I was just trying to explain my deal and give you hope.
    • sheryl37154
      sheryl37154 garrett82

      Posted

      Hi garrett

      It also depends on whether we are homozygous C282Y, homozygous H63D, or combination of both.  I am curious as to what you are to get such good results, as well as the early diagnosis.

      As I always say Haemochromatosis is better than having to have chemo.  What we need is to educate ourselves as there are a lot of drs in denial and ignorance on this.

      From an earlier post, it sounds like abookreader's dr was rather ignorant, only prescribing 8 week phlebs.  He has since looked it up and found that weekly is correct.  It is important for abookreader to educate himself too to make sure he is getting the most appropriate treatment, as his dr is only learning as well.

       

    • garrett82
      garrett82 sheryl37154

      Posted

      i have no idea what the first part meant. as i said before, im in finance, so a lot of the doctor lingo flew over my head. but yes, it was caught early and it was rough for a bit, but im fine (with medication) now
    • sheryl37154
      sheryl37154 garrett82

      Posted

      Hi garrett

      It also depends on whether we are homozygous C282Y, homozygous H63D, or combination of both.  I am curious as to what you are to get such good results, as well as the early diagnosis.

      As I always say Haemochromatosis is better than having to have chemo.  What we need is to educate ourselves as there are a lot of drs in denial and ignorance on this.

      From an earlier post, it sounds like abookreader's dr was rather ignorant, only prescribing 8 week phlebs.  He has since looked it up and found that weekly is correct.  It is important for abookreader to educate himself too to make sure he is getting the most appropriate treatment, as his dr is only learning as well.

       

    • sheryl37154
      sheryl37154 garrett82

      Posted

      Did you have a genetic test to confirm?  That would tell you what genes you carry.  (I was in finance too.)

      What medication are you on? - there is no medication for haemochromatosis unless you have a complication from it which is being treated by the medication.  If it is too personal, no worries.

      Hmm, how did I repeat myself???

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