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Ferritin Blood Test

Posted , 6 users are following.

Mazzamo64
Mazzamo64

Well here I am again!  Having occupied space on Fibromyalgia, PMR and various other groups during my 3 year quest for answers, I'm now here and so hoping that someone can help or advise so I can pick up what's left of my life.

I've had so many consultations with so many doctors.  Having had two cancers. I've found that there's never been any reluctance to try to help the enigma that is me.

I'm having daily headaches/migraine, pain in all my joints and muscles, especiallyhips, lower back, shoulders and arms, shins and calfs (everywhere smile  I have been diagnosed with OA in my left knee and await an arthroscopy for multiple cysts - which are rupturing one by one - and patella misalignment,  My daily activities are severely limited and I have constant fatigue.  Among my many visits to various consultants, I've seen a specialist in cfs/fibro who 'didn't know' and suggested I avoid any weight bearing exercise as I am in such a lot of pain.  He said I should 'rest' - much as Lazarus did before he was raised again.

I have a superb GP who is really going the extra mile.  He rang me on Monday to tell me that he he'd been reading an article about Haemochromatosis and thought it fitted all my symptoms.  I was really excited at the prospect of no longer being an enigma.  I knew nothing about this condition (my internet medical training hasn't got this far yet).  I was amazed when I did some research to find out just how many symptoms I have got - including red palms and others.  I've lost a stone since beginning of March, partly because my appetite has been less.  Oddly, I've really 'gone off' certain foods.  Can't remember the last time I ate eggs or sardines whih I really like.  I have osteoporosis so have 2 x Cal/vit D a day and magnesium.

Had Ferritin bloods done yesterday.  Results today show 179 (lab range 13 - 200 for post menopausal women).  Haven't spoken to do yet as he's not in.  He's phoning me tomorrow.  Wondering how to approach this.  Is this Ferritin result conclusive?  I have so many scans, blood tests etc over the last year or two - I don't know what else can be done.

Thank you 

Maureen 

2 likes, 21 replies

21 Replies

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  • Charlieangel
    Charlieangel Mazzamo64

    Posted

    Hello I am new here,but I have been seeing various different specialist over the past year I have only been diagnosed as a carrier but have symptoms so needs to be looked into more ,your doctors needs to do a genetics test it is simple but you need a consent form from your doctor,not enough is known about hemochromatosis by the medical profession and you really need to push because left untreated the inpact on your life can be incredibly profound, many doctors won't even do a genetic test unless you have a familly member with the condition ,my son was diagnosed as a carrier,it is rare for carriers to display symptoms or need treatment yet my son has to let blood,it has recently been confirmed there are new faulty genes that have previously not been known about ,research is ongoing about the effects of these new faulty genes.i would insist on genetics testing or if you can afford it you can pay privately enquire online,I am now committed to find out as much as I can about this ,hope this helps somewhat.

    • maureen99963
      maureen99963 Charlieangel

      Posted

      I am a carrier and I overload iron in a robust enough way to get therapeutic phlebotomies.  They stopped testing for iron values in the customary blood panels back in 1979 in the States due to a law suit of some kind.  My dad had HH and I suspected my daughter and inherited it. So, our pediatric Hematologist tested both us about ten years ago. I am a carrier but she has two gene mutations.  I get regular therapeutic phlebotomies since I was postmenopausal and began to overload iron. I agree that we should all be tested for iron levels but only those with high levels need a gene test.  My siblings will not be tested but, I fear at least some of them inherited HH and it is destroying their organs ;-(

       

    • Charlieangel
      Charlieangel maureen99963

      Posted

      When i told my doctor that my son was a carrier she sent me straight for genetics testing regardless of iron levels. Your right i worry to every day is thing destroying my loved ones organs i wish doctors knew more and more research was being done i.it is a silent killer for some so frustrating.
    • haircrazydaisy
      haircrazydaisy Charlieangel

      Posted

      The more I read and hear from family members about treatment by medical professionals, the more worried I become. There really needs to be some consistency of understanding & treatment. My niece's doctor told her he thought it was the "latest fad" when she went to ask to be tested because her mum has HH - he refused to test her. Then you have doctor's who are really knowledgeable & clearly read up on the condition - they do seem to be few and far between. I've joined the UK society so hope the more money they can raise from subscriptions like mine, the more research they can sponsor & the more quality information can be passed on to doctors & sufferers. Remember, we're the lucky ones - we know what we're up against and at least have a chance to live a longer life because of that. We just need doctors to gain more education in the area, now.

      Good luck, everyone :-)

    • Charlieangel
      Charlieangel haircrazydaisy

      Posted

      Yes this is true my other son went to the doctors a different doctor and she had to google the condition yet mine knew straight away its hit and miss with doctors but your right they need to be more educated about it because in the meantime lives are being destroyed and it continues to pass down the familly tree. Heres hopeing.
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