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Just diagnosed - confused about two subsequent ferritin results

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richburg
richburg

Hi all. I was diagnosed about two weeks ago at age 37 - homozygous for c282y. My first blood results came back at 1,732 and 91%. Obviously high and I was buckling in for the long haul of blood draws. I also quit drinking immediately (heavy-ish drinker at 3-4 per day) and stopped eating red meat. Now two weeks later after doing my first therapeutic phlebotomy I find out that the ferritin is at 3,600! I'm just generally confused now... I was doing this 30 per blood draw math and pretty dejected at how long I was going to be doing the phlebotomies and now this? I don't even know what to make of it. Maybe the sudden lifestyle and diet changed caused something to happen? Maybe it's temporary? Help

Btw, the liver ultrasound showed moderate fatty liver and I have an endoscopy and liver biopsy scheduled for early July

0 likes, 4 replies

4 Replies

  • Chris8968
    Chris8968 richburg

    Posted

    When I was diagnosed my ferritin level was 1887 and trans sat 92%.

    After 16 weekly phlebotomies my ferritin was down to 50. 

    I am now on maintenance with one phlebotomy every 6 months.

    I never changed my diet and if there has been no liver damage than drinking is ok when you’re in maintenance.

    Diet has very little impact on ferritin levels.

  • johan55235
    johan55235 richburg

    Posted

    I agree the sharp increase does not make sense.Definitely needs to be confirmed .My ferritin levels were 3900 to start with and in all the years of phlebotomies only on the odd occasion did my ferritin levels go up.Went through a period of low blood pressure so skipped giving blood at those times.Even then ferritin only showed a slight increase.

  • sheryl37154
    sheryl37154 richburg

    Posted

    Some of this high ferritin could be caused by your fatty liver which causes high ferritin on its own whether you have HH or not.  It may have worsened in the interim.

    You can have red meat now and then, but eliminate sugar and starchy carbs - these are what causes fatty liver, apart from alcohol.

    Everyone is different and it may take a while for you with a high ferritin level and a high TS%.  You just have to keep persistent.  I have been having venesections since 1998 after a 9 year delay in diagnosis.  25 is the average reduction in ferritin per venesection but it is not set in concrete.

    You are only two weeks after your first phlebotomy - you have a ways to go.  Just be resigned to it - it is better than having chemo.

     

  • miller.jones
    miller.jones richburg

    Posted

    Numbers like that tend to indicate organ damage or illness/infection

    You can correct fatty liver with diet change and quitting alcohol is a must depending the damage it can take few years.

    bitter vegetables, coconut oil and apple cider vinegar all help

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