Without venesection how does the body get rid of access iron?
Posted , 5 users are following.
Ive been suffering symptoms for a long time and been told my iron profile not high enough for venesection. My symptoms arent easing. I really lack knowlegde as does my GP as there appears to be no support. It seems that while i gave blood yearly it eased symptoms, now im not allowed to give blood Im in my early 50s so no periods for a few years to support removal of iron. Im at a loss really..is it a reality that my iron profile will continue to rise because my body cant cope and is unable to flush it all out? There dosnt appear to be treatment outside of venesection which really is unhelpful to those who are suffering with symptoms such as chronic fatigue..joint pain tummy pain etc.
1 like, 20 replies
Keano59 framac
Posted
The body cannot get rid of excess iron without venesection or chelation.It is stored in your organs etc and by removing blood the new blood cells draw iron from these stores/ferritin thus lowering your levels.Hope that helps.
framac Keano59
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Keano59 framac
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framac Keano59
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kelly18948 framac
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framac kelly18948
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Nope i was advised im not allowed to donate at public donations and um not sure we have blood banks in N.Ireland ..but id say same rule applies.
Keano59 kelly18948
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sheryl37154 framac
Posted
In Australia, the cut off age for donating is 70, definitely not 50. It does not seem right that it is 50 in Ireland. However, if you are taking certain medications, told them you have haemochromatosis, or high ferritin, they will refuse unless you have a therapeutic request from your dr.
It would be helpful if you told us your iron profile, i.e. serum iron, TS% and ferritin levels.
There are other health issues that have the same symptoms and these should be investigated. Fatty liver is just one - eliminate sugars and starches, these are the culprits for causing fatty liver.
You can try consuming calcium products with meals which reduce the uptake of iron, as well as tea/coffee with meals. Avoid vit C supplements and juices high in Vit C with meals.
In the meantime, have your Iron Studies monitored, say every 6 months. Usually when post menopause, ferritin increases more dramatically if you have haemochromatosis, and it would be evident by now - "no periods for a new years".
Are you using hrt? If not this could ease your symptoms. From what I have read, donating blood after menopause (if not all you adult life) is beneficial for everyone - unless there is some medical condition that makes it harmful for you. So if it is revealed that you don't have haemochromatosis, get a letter from your dr to take to the blood bank to inform them if they were led to believe you had it.
Good luck with your search.
framac sheryl37154
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Nope i dont have a fatty liver and yes im on HRT id say im at least 5 years into menopause or more. No periods for at least 9. After diagnosis of GH i was advised i couldnt give blood only at a specialist clinic, im 52. Im careful about my diet and unfortunately as we dont pay directly for medical care we really cant ask for blood work on our own schedule unless directed by specialist. I believe theres not enough known about the condition and more and more are being diagnosed. My symptoms are troubling particularily as there seems little or no support..im unsure whether in this country a GP can authorise a public blood donation and as far as i know we dont have blood banks Sheryl. Australia seems very progressive a well ahead of Northern ireland.
sheryl37154 framac
Posted
Actually a lot is known about haemochromatosis, it is just that drs don't bother to learn about it or keep up with new knowledge. They just read the basics. In Australia, the main focus is on obesity, diabetes and prostrate problems. So we have to educate ourselves and become our own advocates. Your country's haemochromatosis organisation can provide support, knowledge and assistance. They work towards making the medical profession and patients more aware of this disorder.
I read a lot of haemochromatosis research, attend conferences and have spoken to Australian and international research specialists. You have Professor John Crowe in Ireland, and there is an amazing researcher in Rennes, France who with his team do a lot of work on haemochromatosis other than liver. There is a Scottish Prof in Belgium doing research on how it affects the brain, and of course Prof Paul Adams in Canada.
They are the main ones I follow but there are a lot working on it and producing research studies. Portugal is up and coming as it was a 'sleeping' country with regard to haemochromatosis.
framac sheryl37154
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miller.jones framac
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I also replied to your other topic you posted about other problems.
199 is not high have you even had gene test to say if you have haemochromatosis or the type? I am guess that is a no and if you did have it your numbers would be lot higher without under going some treatment.
You need to get full work up of blood tests and I see you said the times do not suit you well that is your problem what is more important then health and this is clearly having a big impact on your life.
Sorry to say but your problems could be mental you appear to be very driven in the one direction only and I do not see how you can state not must is know about this problem when by the sounds of it you haven't even had the most basic medical tests.
The medication you are on can cause lots of side effects also women when they hit an age point chemically lots of changes happen which can cause effects you have described.
framac miller.jones
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Yes I have had the genetic test and I'm compound Hetrozygous . C282y/H63D and thankfully my mental health is very good, thank you for your concern
sheryl37154 framac
Posted
Hi framac, love it, but seriously I would push the dr to find other answers to your symptoms. Some people with HH just do not load iron, and if your ferritin level is only 199 at age 52 after stopping menstruation for 9 years then your problem is not with HH.
Even we with aggressive HH, have health issues that my not relate to HH and will not be solved with venesections. In any case, each issue has to be treated for what it is. For example, a couple of years ago, I developed neuropathy pain in my feet. Yes, it could be related to having HH, but never the less, I had to be treated as having neuropathy and only the medication for that could relieve it.
My fatigue (chronic fatigue) has never gone away, joint pain does not go away, tummy pain was relieved by eliminating sugars and starches which I was not digesting properly, now I discover that I can't eat raw vegetables as in a salad without huge pain - so I have to m/wave them for 30-50 seconds, I am prone to duodenal ulcers - so when they become unbearable, I have a HP test, and if positive, I am given antibiotics. Yours could be different and needs to be investigated.
Women who do not have HH and are post menopause generally do have small increases in iron, same as men do all their lives, and it is good for mostly everyone to donate blood now and then. But it sounds like your bridges have been burnt for that as you have informed them that you have HH unless you find another blood donation place (Red Cross?) who do not have your details on record.
Where I am, a gp can order a venesection, and it can be done at a pathologist clinic as well. You are wasting treatment and your health for your issues if you don't push your dr to look elsewhere.
Heaps of good luck with it all.
framac sheryl37154
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Hi Sheryl thank you for your very positive message. I recently was given permission to give blood at public donations, which is great. My GP discovered recently my folate levels were very low so and the symptoms are similar ie chronic fatigue, so I'm now on folic acid for three months before further tests. so Ill see how it goes from there Sheryl. All the very best to your good self :-)
sheryl37154 framac
Posted
All the best back to you too.