1. Community
  2. Blood & Immune System
  3. Haemochromatosis

Ferritin, Hemoglobin and Phlebotomy Effects

Posted , 10 users are following.

jan93765
jan93765

I'm sure the answer to my question is already in the existing discussion forums, but I am a new member and trying to weed through the process.  After one year, two liver biopsies, three doctors, a CT and over a dozen labs, I was finally diagnosed with HH about a month ago.  My third phlebotomy was yesterday, but the "rules" are confusing me...  One doctor says that I have to give until my ferritin level is 50, while the blood services office says that my hemoglobin level is far more telling than the ferritin.  Can someone explain that to me?  If my hemoglobin is low but my ferritin level does not decrease, what does this mean for my future?  Also, the intake nurse at blood services says that most people feel great after giving - that they have more energy, can breathe better, etc.  However, after my third, I felt like I had been hit by a bus.  I haven't really talked to anyone about this and I'm just so lost. 

1 like, 26 replies

26 Replies

Prev
  • sheryl37154
    sheryl37154 jan93765

    Posted

    Not all haemochromatosis is equal.  What are your HFE mutations?  What is your TS%?  The answers to those questions may be revealing.  What ferritin level are you coming from?

    True haemochromatosis can replace red blood cells very quickly and you would not have a haemoglobin problem.  Haemoglobin and iron are NOT the same thing.

    If you are having venesections weekly, your haemoglobin may find it difficult to keep up, it depends on your genetic results too, and you may be being overbled.

    Contact your country's haemochromatosis association and get as much information from them.  Look at their website too.  Educating yourself about this disorder is very important.

     

  • mark84175
    mark84175 jan93765

    Posted

    Hi all, new to this site and fairly recently diagnosed despite all my family having gh. I won't get into that right now, gp's in the UK are something else!

    I've had about 8 venesections now and levels are down from 650 to around 250, all good! That said the last few days I've been feeling so light headed, dizzy, out of breath etc.... my skin colour is OK one min and then really pale the next. Just don't feel right, has anyone else experienced this? Could it be too much blood off, I look enemic.... although sure they'd love some of my blood.... lol

    Any experiences, this would be appreciated.

    Regards to all, Mark

    • philx
      philx mark84175

      Posted

      Hi mark

      Welcome to the group, as soon as I started v/sections I started to

      Feel lightheaded, tired,aches and pains and occasional dizziness

      I've had 8 v/sections I started at at 1130 but by the time I had my

      First venesection it had risen to 1433 now it's down to 834.

      Yes the medical profession are very clueless of our condition???

      My opinion this iron has been comfortable attached to our organs

      For years now it been drawn away from these organs,plus blood

      Extracted on a regular basis, it's no wonder our bodies react??

      Be kind to your body till the transition is complete don't overdo it

      Cheers philx

    • mark84175
      mark84175 philx

      Posted

      Hi philx,

      Thank you for the response and indeed the welcome.

      It is a comfort having people in the and boat....

      At first everything was fine and my chest pains, stomach aches etc all eased which was great. It's only the last week I've had this paleness, short of breath, aches and wondered if anyone had similar experiences and what they done.

      I'm in agreement, doctors seem to know little or nothing about it.... seems crazy in this day and age.

      Thank again

      Mark

  • tim66463
    tim66463 jan93765

    Posted

    Hi All

    My name's Tim, I'm 64 and live in the UK. I was disagnosed with Hemochromotosis back in Nov 2106 after my sister was found to be a carrier. I've been complaining of joint pain and swelling for years and have been treated for Arhritis since 2008. When I asked to be tested, they found I had both mtant genes.

    I started my venesections with a Ferritin level of 1500. After the first it dropped to 1340, but after the 2nd it jumped back up to 2192 and after the 3rd to 3392. I felt like I had the flu most of the time, but it is getting better now. Is this normal?

    I'm hoping the level has dropped when I go for my 5th venesection of Friday, and I'm feeling much better now. If not I'm going to ask to see the specialist.

    • Mrs._Z
      Mrs._Z tim66463

      Posted

      Hi Tim, JoAnne here in the USA.  Also being diagnosed later in life (2015) after being rechecked since my brother had the condition.  Began at 900 range, but have been fortunate to have a steady decrease and am now in  

      maintenance

        

    • Mrs._Z
      Mrs._Z tim66463

      Posted

      Sorry I hit the wrong key.  Maintenance being checked every 6 mos.  If my number is over 100, I hae to have a phlebotomy.  In meeting with my Dr. last week (a hemotologist) she strongly urged to stick with a diet as she feels it's important to watch your iron intake.  There is also a cookbook for hemochromatosis, which has very valuable information regarding diet.  Start to become a label reader and learn more about foods that contain too much iron.  Also, avoid vitamin C (it helps to retain more iron).  If you take vitamins, make sure you are not taking any that contain iron.  I personally eliminated cereals and red meat to mention a few.  Know that we are all different with this condition and you have to keep trying to see what may work for you.  Good luck

       

    • sheryl37154
      sheryl37154 tim66463

      Posted

      Hi Tim, after 27 years of reading about haemochromatosis, I don't think it is normal for your ferritin to jump up that high while being venesected.  I had a cold/flu the only time my ferritin jumped 600+.

      Inflammation, infection causes a ferritin jump.  Did your arthritis flare up much more than usual during that period?  How is your liver?  Inflammation in the liver causes a higher ferritin.  Similarly fatty, liver which does not show up in blood tests.

      I would definitely be asking questions.

       

    • tim66463
      tim66463 sheryl37154

      Posted

      Hi Sheryl,  Thanks for your advise. Although I was poorly with flu-like symptoms my joint weren't particularly inflamed. I had what I though was a head cold during the 2nd Venesection, but this developed into something more debilitating and caused me to take to my bed for 3 days. The next vensection was shortly after getting up again. I'm hoping all this is due to that illness. Otherwise I look and feel fine now. lets hope the next sample shows the ferritins coming down.

      I avoid anything with iron in it, I minimise use of alcohol, I drink plenty of water, my liver scan and heart scans were normal, and my blood pressure is normal - what could I be doing wrong if anything?

      I'll report back with my Friday results and keep you posted.

  • tim66463
    tim66463 jan93765

    Posted

    Hi Sheryl,

    My last blood test results came with a Ferritin level of 1446, which is a huge drop from 3392 in one week. Not much less than the 1500 that I started with, but still higher than the 1340 after the first Venesection. That flu must have had a big impact on the Ferritin levels.

    Anyway I feel fine now and hoping that the levels will drop each week from here on.

    • sheryl37154
      sheryl37154 tim66463

      Posted

      Yes, this is a fine example of what a bit of flu can do to us.  I found the haemotologist did not know this and took me back to weekly for a while, and the next ferritin result was 13 !

       

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.