Iron Overload

[Mikem123]

I was wondering whether anyone might be able to offer me some advice.

I am a 33 year old male and was diagnosed with haemochromatosis (via genetic testing) in September of last year and immediately started weekly venesections. At that time I was a normal healthy person with no symptoms of anything at all. I ran about 20k a week and played football regularly.

The first few weeks went fine but within a month or so I was really struggling with them. It would leave me very tired for several days and with a tightness in my chest that was akin to being at high altitude. By the time I was 3 months in I was not able to exercise, had to regularly skip weeks and was taking a whole 2 weeks or more to get back to normal after the venesection. My thyroid was tested and the results were normal. Eventually, they stopped the treatment with my ferritin levels at just under 100. This my consultant assured me was fine and well within normal levels. He moved me onto 3 /4 monthly venesection with the first one in July.

This was all about a two months ago but I have not even nearly recovered. I am permantly shattered and find it difficult to even climb stairs. My chest is incredibly tight and painful and my heart beat raised to high levels. Everyday is a little bit worse. I have gone from being fit and healthy with no symptoms of anything to being like an old man in a matter of months.

The symptoms, far from getting better, seem to be not improving at all and even getting worse. I am currently signed off work sick as I am unable to work. I am a teacher and you can imagine what dealing with a group of fifteen year olds is like when you feel like this! Everything I read tells me how the treatment for haemochromatosis makes you feel better but for me it has made me feel progressively worse.

Does anyone have any advice? I feel desperate and don't understand why I am getting worse not better.

[arboc50]

Really need to know what your iron and other blood levels are at. Are you having those checked? What were your iron levels when you started?

[Mikem123]

Hi there

My ferritin levels started at about 600 and are now 91.6. My HB is 14.5. My T3 (whatever that is ) is 'normal'. That is all I know.

Thanks

Mike

[arboc50]

You certainly don't sound like you're too low on Iron. My ferratin (I'm similar age) was 450 2 years ago and has worked its way down to 10 and I've never experienced symptoms like that. I'd suggest a full battery of blood tests as obviously giving blood is affecting more that just your iron levels.

Also, I've read about importance of maintaining B vitamin intake especailly as well as other vitamins and minerals while giving blood. Also, don't avoid vegetables, and fruits and whole grains - although some are high in iron, they aren't as "Bio-available" as, say, red meat and contain Polyphenols that inhibit iron absorption.

In other words, maintain a health diet not worrying about eating too much iron, with the exception of iron enriched foods (usually processed products containing wheat) and too much red meat. Also limit alcohol and Vitamin C supplements (they both increase iron absorption) and don’t take vitamins (multi or otherwise) with iron. Lots of multi vitamins do not have iron and specifically state “no iron added.”

Beyond maintaining proper nutrition, get a full battery of blood tests to see what levels are going askew from your blood donations.

[suzwilson]

Quick background..my starting numbers were about the same as yours. I have undergone weekly tretments for about 3 months now and am still in the 400 range. I was a long distnce triathlete before the treatments started and now, some days, like you, i cannot climb a set of stairs.My only exercise is walking, which on some days, I can do rather vigorously! To help cope, I have started walking with a group, taking acting lessons and am registered in a course at the university in the fall. Focus on what you can do, and do something that you have always wanted to do becasue now you have some time!
Also, I went to a naturapath who has helped me a lot with my energy levels. I still have a long way to go, but today was the first work day missed due to fatigue in about a month..and I think that was becasue I was partying in Vegas all weekend with 7 other gals!

Good luck and keep positive!

[haggis95]

Take Vit B12! It helps!

[philipds]

There could be many things going on...
Please read this article:
http://hemochromatosis.co.uk/tpph.html

There should be some info in there to help you.