Has anyone given blood to help with iron overload?

[merryxmasx]

I’ve got high transferrin saturation levels (65%), I’m not actually sure if this is the same thing as iron overload but I have all the same symptoms (severe fatigue, weakness).

Someone told me that giving blood helps so I’m booked in for January. Has anyone else done this and what can I expect?

Tea and biscuits afterwards.

IIRC you need a diagnosis first if you're thinking you have iron overload/haemochromatosis. Best explore it with your GP first.

@Greybeardy my GP has been aware for a while and I’m due to see a haematologist in Feb, but the appointment has already been pushed back once and I guess I’m just impatient because my symptoms are a real nuisance :(

Yeah you need to see a doctor. I’m getting tested for this at the minute. I don’t have a result for the saturation levels yet but my ferritin is 430.

go to heamochromotosis.co.uk for more info. I don’t think they will take the blood until you have a normal level from watching their videos.

My friend doesn’t give blood but has regular blood letting as a treatment for this. She’s not allowed to give blood anymore.

@StCuntyMcCunterson oh really? I read that some places will take your blood if you have haemochromatosis but that they dispose of it

@PotteringAlonggotkickedoutandhadtoreregister yes blood letting that’s what it’s called, do you know where she gets it done?

So part of the treatment is blood letting which is exactly the same process as giving blood but yes, they dispose of it. The video says “you can give blood as normal once your iron is at a normal level” so I think anything taken is just disposed of which is a real shame as I bet some people could do with the excessive iron.

Not necessarily - I have high saturation levels but very low ferritin, it can be something else. You need to get it properly investigated.

that would be a waste of the donation service resources. Venesection is part of the management for haemochromatosis, but it's not done via the blood donation service. There is an easily googleable info page on donating with haemochromatosis. IIRC once you're diagnosed (or not) and stable they may be happy to take the blood for donation, but you can't just use it for unofficial treatment. It'll also probably stuff about with some of the bloods the haematologist you're seeing might be interested in so no point doing it before seeing them.

@StCuntyMcCunterson that’s exactly what I thought, that they would use it for people with iron deficiency. Suppose there must be a reason why they don’t. Thank you for replying

A friend of mine has haemochromatosis and has fairly regular blood-letting. This isn't via the donation service, and he isn't allowed to give blood. You should wait for a definite diagnosis. Sorry it's taking so long though.

They check medical history and measure your iron level before the donation. After the donation you can have some snacks there. I carry on as usual after the donation though they say to be careful.

Thank you for all the replies - I’ve cancelled the booking for January and will wait and see what the haematologist says in (hopefully) Feb

Exactly. There’s probably something they know that we don’t. Have you had your liver tested and an array of blood tests? My doctor told me high ferritin (do you know what your levels are?) could be due to liver problems but that the rest of my results suggest a healthy liver.

do you have memory/brain fog?

My friend has haemochromatosis and she has regular hospital appointments to take a bag of blood. It's done in the endoscopy department of the hospital. She says she feels fine, it was only discovered by chance when her sister had a blood test so the whole family were tested.