Excess iron

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I've had fibro for a long time but saw another rheumatologist last week on referral from my GP and she says she thinks that my current problems (which include muscle pain, back pain, fatigue, cramping, nausea, etc) may be due to excess iron in the blood, which could be a sign of Haemochromatosis - an inherited disease.  Too much iron in the blood can increase the symptoms of arthritis, which I already have.  Apparently if left untreated it can go on to cause some very serious health issues such as cirrhosis of the liver, liver cancer, heart failure etc. scary thoughts.  It's detectable by a very simple ferritin test but the test isnt done as a matter of course (I wonder why?!) I'm going for blood tests this coming week, so dont know the outcome yet.  Just thought I'd pass this info on, as I'd never heard about having too much iron in the blood, only too little - eg anaemia.

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  • Posted

    Hi Loxie, I have heard of this before. Many years ago, in the early 1980's as a young staff nurse, I worked in a 'Day Ward', where early endoscopes were done, chemo was given, liver biopsies were done, patients with chronic anaemia were given transfusions, and patients with haemochromatosis were bled of some of their blood, like being a blood donor. Unfortunately the blood could not be used for transfusions, but one lady used to take hers home to put on her roses! Removing some of the blood was the best way to reduce the level of iron in the body. I expect things have changed this then, and other treatments may now be available. Good luck with this Loxie, let us know how you get on. x

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    • Posted

      Hi Jeanne, thanks for the insights.  As far as I know, the best treatment is still blood 'letting' - rheumy told me dependent on test results, it may involve weekly drawing of blood - probably just a pint at a time.  After a given period ie when iron levels are reduced, that  reduces to say once every three to six months.  Small price to pay really to prevent the condition causing serious illness and giving blood doesnt worry me at all. 

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  • Posted

    Hi Loxie Thank you for sharing that with us hun, its very interesting and something Ive not heard of before. Let us know how you get on hope all goes well for you. take care 
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  • Posted

    Same here, I've never heard of this, it also ties in with a lot of fybromyalgia symptoms doesn't it? That's useful to mention to my doctor next time I see him? Let us know when u get your results loxie please! That sounds dreadful.

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  • Posted

    are you a smoker by any chance??  My iron is on the high side as well, but the high side of normal, 16.  My dr mentioned that smoking causes an increase in blood iron because it robs my blood of proper oxygen.  Also, in the past, if its any higher where it becomes a health problem for you, I use to work at a local blood bank 25 yrs ago, and although they can't use your blood, if your iron is THAT high, then more than likely you'll be set up to donate every couple of months or so, and this helps eleviate the high iron problem

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    • Posted

      Hi Hletcher - yes I have been a smoker. I managed to quit.  I havent managed to get a blood test yet - there's a two week waiting list for a phlebotomist appointment at my GP surgery and the hospital drop in centre had a four hour waiting time, I couldnt wait as I had to get back to work, so I'll try again tomorrow sad  The consultant told me that it only becomes apparent in men from age 30 - 40 and for women a decade or two later, as menstruating release enough blood to keep the iron levels lower and its only after menopause that it becomes a problem in women.  I'm 61 so of the right age.  I've had so many tests for so many things trying to resolve my health issues, still none the wiser.  GP said fibro a couple of years ago but the rheumatologist didnt think it was and has referred for bloods on other things.  I feel a bit like a pin cushion. I still have my suspicions its thyroid related as I have severe hair loss too, along with the pain and fatigue etc.  My blood pressure and blood sugar are totally normal.

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    • Posted

      Know the pin cushion feeling, and I'm glad I found this website, as I'm still learning alot as I've only been dx with fibro about 3 yrs.  Haven't heard about fibro having anything to do with increase blood iron, but that doesn't mean it does or not.  But I do know that smoking does increase it.  Anyone on here know anything about fibro and dental work???  Had the worst toothache of my life last week, and since the VA does NOT do anything dental, went to a community health center dentist on sliding scale fee to have tooth pulled and OMG!!!!!!!  I have a high tolerance for pain, and have had teeth pulled in the past but have never had this experience.  The needle to numb me was so painful I was screaming and crying, and dentist had to shoot me like 3-4 times cuz everytime she even so much as touched the tooth after novocaine I still screamed!!  But then again, have not had dental stuff done in the last 7 yrs (??) So I'm wondering if its the fibro and no tolerance for pain now......God, it was horrible!!!!!!!!

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