Haemochromatosis

fireplace2010

Before I start I just want to say that I am new to this so if I have put this in the wrong place or done something wrong please don't devour me.

If there is anyone with this condition I would be grateful if you could read this. I am not looking for a diagnosis but for a bit of advice if anyone can help.

I am writing this regarding my husband. For the past number of years he has been suffering from joint pain, which is usually there in some shape or form, but which also flares up quite badly fairly regularly. Originally the doctors had been treating him for gout. He has always been a blood donor. He always noticed when he donated blood to IBTS that he would get great ease, and be in great form with no joint pain etc. Last year someone mentioned haemochromatosis to him, so he investigated it. Every symptom he has points to it, and the fact that he gets so much relief when he gives blood makes us feel that he may have some form of this.

Recently he attended doctors for tests for it, and they came back negative. His iron levels at one stage was 17.5, but they told him they would not consider hemochromatosis until his levels went over 18. Last time he got them checked, they were at 14, and the doctor spoke about maybe putting him on Iron tablets, which in our opinion, could actually make him worse.

I would be grateful if someone could possibly point me in the right direction as to what we can do now. Is it possible to have hemochromatosis while having normal iron levels? Any information you could give me would be gratefully received as we would like to be armed with as much as possible when we speak to a doctor again.

Again apologies in advance if I have done something wrong when posting this here, this is a scary place!

RobFowl

I'm not going to give any advice on your husband but here is the advice leaflet from the Irish haemachromatosis association which should answer any of you questions.
http://www.haemochromatosis-ir.com/files/docs/ihabrochure.pdf

sam34

we cant give you any advice regarding your husband.

if he is concerned he should seek a second opinion