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My count is 2,500 is that mental?

Posted , 4 users are following.

lorraine73505
lorraine73505

Hi All, my sister and I have just been diagnosed with HCT (abbreviation for Heamachromatosis) and she had a 990 count - but mine was 2,500. We have the HFE gene and our kids are all booked in for tests. BUT Our first appointments with heamotolgists in the UK are not for 8 weeks - yet we are both suffering the aches, joint pains and sleepiness.  We just want to start getting this iron-heavy blood out!  What can we do in the meantime to chelate/block the iron that we are inadvertently taking in and adding to our count on a daily basis?

Thanks x

1 like, 6 replies

6 Replies

  • mike80628
    mike80628 lorraine73505

    Posted

    Hiya. My count was 2000 last year! It was 38 last week after weekly venesections for a year. You'll get there too! In the meantime...no red meat, any offal, no cereal with extra iron eg cornflakes. Drink milk and tea with your meals..it prevents iron absorption! No vitamin c when eating..so no fruit juice at breakfast or vitamin c tablets. Vitamin c makes you absorb iron. That's a few basic tips for you. Hope you start venesections soon. Keep in touch...Mike.

    • wendy00586
      wendy00586 mike80628

      Posted

      Thanks Mike - I'm the sister. No more shreddies for me then!! Wend

  • mary92507
    mary92507 lorraine73505

    Posted

    Hi Lorraine

    welcome to the iron house! I am in the same position as you and am keen to get my Iron count low, it's horrible feeling like this isn't it? The good news at least we know why.  Mike and all the others on this site have been a great support and offers great encouragementKeep signing in I had a bad day last week but hey got me laughing which I didn't think would happen.. Your in the best group in the world.

    hugs

    • wendy00586
      wendy00586 mary92507

      Posted

      Did/do you suffer from blurry vision episodes or shaky hands? Wendy
    • mary92507
      mary92507 wendy00586

      Posted

      Yes, but I do get a weird warning before my vision goes funny, my hands however shake at all different times.  It's not until I use them that I realise there shaking, it's not nice, it's kind off scary.  The only thing that is constant is the joint pain.  It's a nuisance because I hope sometimes to be free off it but theses days the pain is a constant companion.  I have no idea when the shaky hands blurry vision is going to happen.  And no GP can help so it's down to you to work out what brings on these episodes until your treatment is functioning well.  One thing I do know is red meat is a definite trigger for me, you need to work out your own.  We are all on quite a lonely path but hey we can do it.  Keep a diary of everything you eat and drink and all your reactions good or bad that will help. Your feelings and your reactions, even if you think they are not related to what you eat they probably are. 

      Its ok to be scared also, we all are but together we can overcome this, that's why it's important to talk to each other.  However, bad you think it is for you, one of us will have experienced it so please don't worry about expressing yourself,.  If you look back I have and I'm glad I did.  It helped big time.

      hugs

  • lorraine73505
    lorraine73505

    Posted

    Hello - and thanks to everyone who is joining in to help me and my sister manage our new journey with HCT.  I have now got an appointment with a heamatologist specialist on Saturday (9 July) - bit of bullying and drama on my part brought my appointment forward.  I just can't manage the joint pain - which for over a year my GP just put down to wear and tear/arthritic pain - now we know its not that because once they diagnosed HCT genetic FE from the blood tests, the GP then said, "Aah maybe its due to HCT then!"  I only went for blood tests to see if I could take HRT for early menopause (I'm 49). Anyhooo - can't wait to get some blood out because I ache constantly.  HOWEVER, my main point tonight is my right foot, heel.  I have a lump on my heel, not caused by any knock or damage, it has just occurred.  I find it difficult to walk when I get up in the morning, in fact I come down the stairs like an 80-year-old (btw I am fit, slim and active normally!).  Anyone else getting this or is it something random and seperate that I should just see GP about?  Love to all, Lorraine x

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