iron overload...get checked!

Discussion in 'Fibromyalgia Main Forum' started by Saul, Mar 15, 2009.

  1. Saul

    Saul New Member

    Hello everyone,

    I wanted to first thank those who replied to my previous post on this topic. To follow up, I was recently diagnosed with Hemochromatosis (iron overload that is genetic in origin) by a hematologist. My ferritin levels are high and I have gradually been accumulating iron in my body over the years. I would never have known this if it were not for my naturopath who looked back over previous test results and noticed the increase. He then ordered a Ferritin test which came back high. He followed up with the genetic testing and bam...it came back positive as me being a compound heterozygote for the genes that cause Hemochromatosis.

    I saw a hematologist last week and she confirmed the diagnosis. The only way to bring down ferritin levels is to have phlebotomy (blood taken). I started this process last week and will continue each week until my Ferritin is down to 50 (currently at 650 which is high).

    What I would like people here to know is that testing for ferritin levels is NOT a routine test. This is why I did not know my iron levels were increasing over the years despite having what seems like gallons of blood drawn for testing by various docs.

    My two biggest issues are fatigue and brain fog. I am hoping that once my levels start to decrease, I will begin to feel better. The primary symptom of iron overload is fatigue and joint problems....which also mimic CFS and Fibro symptoms.

    So please...next time you see your doc, ask him/her to test your ferritin levels!

    Thanks for taking the time to read this post. I hope it helps.

    Saul
  2. hensue

    hensue New Member

    I dont have the copies of my medical records can i get all them and keep the copies i am in the US? I am also being reconsidered for ssdi.
    I have fibro they will not put chronic fatigue why I dont know? Depression migraines High blood pressure. Everthing to them is hunky dory. Now I have crickets or ringing in my ears that is making me more anxious that usual.
    I have noticed I always was high in the iron level. I dont know if he really tested me for it i ask to be tested for hemo what ever. What is exactly ferritin levels?
    Thanks
    hensue
    I guess i will just go to every doc I have been to and start getting copies of whatever they come up with.
    I promised myself this year i would either get better or get focused enough to get this money we have paid in.