Haemochromatosis & training
bigburnsgeoff
Posts: 35
All,
I've just been diagnosed with Haemochromatosis which is a genetic disorder that causes your body to store iron to levels that are effectively toxic. If untreated it results in major issues with your liver, heart and other vital organs. At the moment it's just giving me issues with managing my blood pressure when recovering from training and a lack of energy and performance. The treatment is to go through an intensive period of several months or more giving blood. Effectively a pint a week until your iron levels reach a safe limit at which point you just need the treatment every quarter.
I was planning a major assault on events for 2016 starting with the Paris Roubaix sportive in April.
Anyone else out there had experience of suffering with this condition, it's treatment and trying to train?
I've just been diagnosed with Haemochromatosis which is a genetic disorder that causes your body to store iron to levels that are effectively toxic. If untreated it results in major issues with your liver, heart and other vital organs. At the moment it's just giving me issues with managing my blood pressure when recovering from training and a lack of energy and performance. The treatment is to go through an intensive period of several months or more giving blood. Effectively a pint a week until your iron levels reach a safe limit at which point you just need the treatment every quarter.
I was planning a major assault on events for 2016 starting with the Paris Roubaix sportive in April.
Anyone else out there had experience of suffering with this condition, it's treatment and trying to train?
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Comments
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All,
I've just been diagnosed with Haemochromatosis which is a genetic disorder that causes your body to store iron to levels that are effectively toxic. If untreated it results in major issues with your liver, heart and other vital organs. At the moment it's just giving me issues with managing my blood pressure when recovering from training and a lack of energy and performance. The treatment is to go through an intensive period of several months or more giving blood. Effectively a pint a week until your iron levels reach a safe limit at which point you just need the treatment every quarter.
I was planning a major assault on events for 2016 starting with the Paris Roubaix sportive in April.
Anyone else out there had experience of suffering with this condition, it's treatment and trying to train?
In addition to becoming a blood donor in addition, follow the dietary advice (less iron, less Vit C) that is speciific to the condition. You should get a referral to a dietician to discuss how to mange it.
I was tested for it a few years ago but was in the clear (though I am a carrier). Large numbers of my extended family have the condition. It's very prevalent among the Irish population.
High levels of activity shouldn't be an issue - most of my extended family worked in very physical jobs (farming, construction), and it was the level of activity that masked the condition - many of them were diagnosed in retirement.0 -
Good to get some re-assurance on the training. I'm hoping that apart form taking it easy on the day or two after giving blood I should be OK.
Nod to the Celtic link. Welsh born of Irish parents!!
Also I'm a carrier, but I have another gene that they have recently discovered is also mutated and linked to the original faulty gene. So I've been developing it more slowly although probably accelerated through taking of supplements. So annual checking of iron levels recommended.
For everyone else its a highly un-diagnosed condition which can result in major issues. I'm suffering with an inability to control my blood pressure during post ride recovery. I've been re-assured that it will sort itself once the iron levels come down.0 -
But of an update.
After ~10 weeks treatment iron levels have halved, irrational heart rate and blood pressure seems to be resolving itself and training is going ok.
Feel pretty washed out the day immediately after treatment but seem to bounce back quite well. FTP is still below my peak but it's definitely increasing.
As a result the frequency of treatment is being reduced which is nice and will give my veins a chance to recover.0
