Hemochromatosis
Discussion
The old man has one of the many variants of this disease. His iron levels were through the roof, as were all of the associated markers. Treatment isn't pretty really, just having blood removed every now and then, with all the fun that can come with (he actually ended up having both anaemia and haemachromatosis, which was weird).
It's certainly easy to live with though, once you get your treatment on the go. Might be worth having a think about getting family members tested too.
It's certainly easy to live with though, once you get your treatment on the go. Might be worth having a think about getting family members tested too.
Useless bit of info. Many years ago barbers used to do venesection to keep evil spirits away!! Next time you go past a proper barber you will see or should see the red and white pole.
I have to have regular venesection 500mls not for Haemochromatosis but for a very rare acquired disease due to high levels of Chemo to treat my advanced cancer.
My ferritin level can go to 600 but the hospital like to keep it low and at the moment it is 13.
Not sure if this is still running but try www.ghsoc.org
Good luck with it all.
I have to have regular venesection 500mls not for Haemochromatosis but for a very rare acquired disease due to high levels of Chemo to treat my advanced cancer.
My ferritin level can go to 600 but the hospital like to keep it low and at the moment it is 13.
Not sure if this is still running but try www.ghsoc.org
Good luck with it all.
I have also recently been diagnosed with this and my ferritin level is also over 1,000. - My first venesection is on Monday and I can't wait because at the moment I feel really ill (extreme fatigue, , weakness, collapsing, upset stomach etc.).
The thing is: this normally only comes to light once patients are in their 40's or 50's; I'm 25. I know it affects people in different ways but I feel like it's killing me at the moment. - I collapsed in the bathroom last monday an put my head through the mirror.
Thoroughly fed-up.
The thing is: this normally only comes to light once patients are in their 40's or 50's; I'm 25. I know it affects people in different ways but I feel like it's killing me at the moment. - I collapsed in the bathroom last monday an put my head through the mirror.
Thoroughly fed-up.Don't go out in the rain otherwise your hair will go ginger!
On a serious note if it's diagnosed early you should be fine- I was diagnosed 3 years ago and all I do is is give blood periodically which does 2 birds with one stone especially as a lot of people who need blood need additional iron in their blood.
Don't worry.
On a serious note if it's diagnosed early you should be fine- I was diagnosed 3 years ago and all I do is is give blood periodically which does 2 birds with one stone especially as a lot of people who need blood need additional iron in their blood.
Don't worry.
A11UUH said:
On a serious note if it's diagnosed early you should be fine- I was diagnosed 3 years ago and all I do is is give blood periodically which does 2 birds with one stone especially as a lot of people who need blood need additional iron in their blood.
Don't worry.
Thanks. I'm so glad to have started venesection because I've been suffering quite badly (my knuckles are killing me as I type this) for years now, not knowing what was wrong.Don't worry.
I'm having another rough night tonight though...I can only hope that in a few weeks the blood letting will begin to alleviate the symptoms. Is it common / heard of to feel so fatigued that you end-up staggering about, falling over or basically bedridden on some days?
It runs in my family, but I am not affected myself. It is surprisingly common, might be as much as 1/200, but underdiagnosed. My family members feel much as you describe (brain fog, achey, slow) when ferritin levels are high, then they have venesection (blood letting) and feel a bit knackered for a day or two and then feel much better as the iron levels fall. The time between venesections varies from maybe a month to a year or so, depending on ferritin levels and symptoms. You should be under the care of a haematologist and they might also want to do precautionary scans of your liver and heart
(I am a doctor but not a haemachromatosis expert, the above just based on experience with my family)
(I am a doctor but not a haemachromatosis expert, the above just based on experience with my family)
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