Haemochromatosis
Discussion
After a few blood tests over the last couple of months and weeks, I see to have been diagnosed with
Haemochromatosis. I’ve never heard of it before. But seems to be something to do with high iron readings in my bloods.
I’m glad they have got to the bottom of my tiredness, aching bones, and feeling low. Apparently I have been referred to the hospital as I’ve got to have have some blood removed. I’ve been reassure it’s fairly common and not life threatening. I’ve never heard of it before and don’t know anyone with this condition.
Anyone here have the condition ? Any advise ?
Haemochromatosis. I’ve never heard of it before. But seems to be something to do with high iron readings in my bloods.
I’m glad they have got to the bottom of my tiredness, aching bones, and feeling low. Apparently I have been referred to the hospital as I’ve got to have have some blood removed. I’ve been reassure it’s fairly common and not life threatening. I’ve never heard of it before and don’t know anyone with this condition.
Anyone here have the condition ? Any advise ?
Wife has it. She was diagnosed over 20 yrs ago and at the time she was the youngest female the consultant had every encountered with it, so much so that she was interviewed by the BMJ.
It meant she had years of being misdiagnosed and largely ignored until a young GP just took a punt, defied her superiors and ordered the C282Y gene test.
It is now more common in younger women (which means it probably always was, it just wasn't tested for).
It's incurable, but is managed through venesection (blood letting). My wife gave a bag a week for 6 months until her Serum Ferritin levels were under control, she now has it every 3 months or so, 3 to 4 bags.
It is unusual for pre-menopausal women to be diagnosed with it as women naturally venesection every month, but my wife also had PCOS so her periods stopped for many years.
Whilst fairly benign and easy to treat, it can easily be fatal. As you say, it is an overload of iron in the system, effectively, the condition prevents your duodenum from stopping absorbing iron, so it just keeps absorbing. It ends up overloading you organs, initially your liver but ultimately can cause major organ failure.
The only real symptoms are, ironically, the same as anaemia, tiredness. My wife knows when her iron levels are creeping up as she gets tired more easily, but as standard she has a blood test every 2 to 3 months to check her Serum Ferritin levels AND crucially the Transferrin Saturation score (which is often ignored by the NHS GP but is a very very high indicator of the rate of absorption).
You can help yourself by avoiding iron-rich foods. Red meat, iron dense vegetables etc, but our constant will always say that he ca get the iron out of her body after than she could ever get it in!
One thing that has worked extremely well is eating raw coriander!! Well known holistic remedy for drawing heavy metals out of the human body. Skeptic or not, my wife has seen both Serum Ferritin levels and Transferrin Saturation reduce through eating it. It does mean she sweats like an Indian restaurant owner though!
It meant she had years of being misdiagnosed and largely ignored until a young GP just took a punt, defied her superiors and ordered the C282Y gene test.
It is now more common in younger women (which means it probably always was, it just wasn't tested for).
It's incurable, but is managed through venesection (blood letting). My wife gave a bag a week for 6 months until her Serum Ferritin levels were under control, she now has it every 3 months or so, 3 to 4 bags.
It is unusual for pre-menopausal women to be diagnosed with it as women naturally venesection every month, but my wife also had PCOS so her periods stopped for many years.
Whilst fairly benign and easy to treat, it can easily be fatal. As you say, it is an overload of iron in the system, effectively, the condition prevents your duodenum from stopping absorbing iron, so it just keeps absorbing. It ends up overloading you organs, initially your liver but ultimately can cause major organ failure.
The only real symptoms are, ironically, the same as anaemia, tiredness. My wife knows when her iron levels are creeping up as she gets tired more easily, but as standard she has a blood test every 2 to 3 months to check her Serum Ferritin levels AND crucially the Transferrin Saturation score (which is often ignored by the NHS GP but is a very very high indicator of the rate of absorption).
You can help yourself by avoiding iron-rich foods. Red meat, iron dense vegetables etc, but our constant will always say that he ca get the iron out of her body after than she could ever get it in!
One thing that has worked extremely well is eating raw coriander!! Well known holistic remedy for drawing heavy metals out of the human body. Skeptic or not, my wife has seen both Serum Ferritin levels and Transferrin Saturation reduce through eating it. It does mean she sweats like an Indian restaurant owner though!
dundarach said:
My daughter 16, went for a second blood test only yesterday.
Symptoms include, stomach pains, headaches, palpitations and infrequent periods.
This is what they're suspecting!
You really need to push for the generic test, but they typically own't test under 18yrs old (we've had to really push for my daughter despite her mum's diagnosis. It is the only way to tell. From our experience, those symptoms aren't overly consistent with Haemochromatosis and 16 would be really young to have severe symptoms.Symptoms include, stomach pains, headaches, palpitations and infrequent periods.
This is what they're suspecting!
unzippy said:
I wonder if the lettings could be donated to those with low iron issues. Waste not want not etc.
If your Serum Ferritin is under 100 (I think that's microgram/L), then you can give blood via the Blood Donation service, but not if it is over (and venesection often only becomes needed once it's over).Thanks for the updates and knowledge.
My symptoms are tiredness and aching bones, like I’m seizing up. I’ve been like it for years (53m)
About 6 years ago I went to the doctors as my blood left like it was cooking my body. Making me itch and genially feel unwell. It was brushed off and told to take antihistamine that I’ve been taking daily ever since.
It’s taken a long time to get to this point, so now just waiting for the hospital to pick up the referral and contact me.
My symptoms are tiredness and aching bones, like I’m seizing up. I’ve been like it for years (53m)
About 6 years ago I went to the doctors as my blood left like it was cooking my body. Making me itch and genially feel unwell. It was brushed off and told to take antihistamine that I’ve been taking daily ever since.
It’s taken a long time to get to this point, so now just waiting for the hospital to pick up the referral and contact me.
Wish said:
Thanks for the updates and knowledge.
My symptoms are tiredness and aching bones, like I m seizing up. I ve been like it for years (53m)
About 6 years ago I went to the doctors as my blood left like it was cooking my body. Making me itch and genially feel unwell. It was brushed off and told to take antihistamine that I ve been taking daily ever since.
It s taken a long time to get to this point, so now just waiting for the hospital to pick up the referral and contact me.
Yes, push. Chase. Badger them. Bully them. From our experience the NHS are utterly sMy symptoms are tiredness and aching bones, like I m seizing up. I ve been like it for years (53m)
About 6 years ago I went to the doctors as my blood left like it was cooking my body. Making me itch and genially feel unwell. It was brushed off and told to take antihistamine that I ve been taking daily ever since.
It s taken a long time to get to this point, so now just waiting for the hospital to pick up the referral and contact me.
te at Haemochromatosis in every way. We went private, and even just getting blood test results from the GP are near impossible because they just like to feedback 'no action required' purely because they were the same as the last test (that were too high anyway).
As above, push your GP to get the C282Y genetic test done, and your Serum Ferritin levels. Then start blood letting.
You can be sneaky and before a formal diagnosis/levels, you could just go and give blood
I have haemochromatosis, was diagnosed a few years ago.
The key question for the OP is what is your ferritin at the moment. If it's over 1,000 they need to get a move on, - mine was 1,200 at diagnosis and it took me 15 venesections to get it down to 50, which is where we like to keep it.
I was diagnosed and my de-ironing was private, I then got moved into the NHS for maintenance. I donate every 6months, but due to the donation service being a PITA on the last two times, I'm moving back into the NHS for a while in a nurse led unit. Seems ok for now. but getting blood results out of the receptionists is a PITA.
Not sure where this you have to be ferritin under 100 to donate came from, thats certainly not my experience - you have to be in maintenance but thats it. Ferritin is the measure of Iron stores in the organs not the blood, so its irrelevant what the ferritin stores are on the blood. We remove the blood so the body use up iron to make more blood. It's not like we carry more iron in the blood.
You cant Treat this with diet.
I'd avoid raw seafood until de-ironed due to some of the bugs in seafood potentially causing issues with the high iron in the body.
Lots of really useful Facebook groups for the newly diagnosed - look at haemochromatosis family. The uk charity is becoming a bit more useful again so may be worth a look. The have some paperwork which may help and can do discounted high speed genetic testing if you need that confirmed.
Otherwise if you have any questions feel free to fire away.
The key question for the OP is what is your ferritin at the moment. If it's over 1,000 they need to get a move on, - mine was 1,200 at diagnosis and it took me 15 venesections to get it down to 50, which is where we like to keep it.
I was diagnosed and my de-ironing was private, I then got moved into the NHS for maintenance. I donate every 6months, but due to the donation service being a PITA on the last two times, I'm moving back into the NHS for a while in a nurse led unit. Seems ok for now. but getting blood results out of the receptionists is a PITA.
Not sure where this you have to be ferritin under 100 to donate came from, thats certainly not my experience - you have to be in maintenance but thats it. Ferritin is the measure of Iron stores in the organs not the blood, so its irrelevant what the ferritin stores are on the blood. We remove the blood so the body use up iron to make more blood. It's not like we carry more iron in the blood.
You cant Treat this with diet.
I'd avoid raw seafood until de-ironed due to some of the bugs in seafood potentially causing issues with the high iron in the body.
Lots of really useful Facebook groups for the newly diagnosed - look at haemochromatosis family. The uk charity is becoming a bit more useful again so may be worth a look. The have some paperwork which may help and can do discounted high speed genetic testing if you need that confirmed.
Otherwise if you have any questions feel free to fire away.
haydj-ver2 said:
I have haemochromatosis, was diagnosed a few years ago.
The key question for the OP is what is your ferritin at the moment. If it's over 1,000 they need to get a move on, - mine was 1,200 at diagnosis and it took me 15 venesections to get it down to 50, which is where we like to keep it.
I was diagnosed and my de-ironing was private, I then got moved into the NHS for maintenance. I donate every 6months, but due to the donation service being a PITA on the last two times, I'm moving back into the NHS for a while in a nurse led unit. Seems ok for now. but getting blood results out of the receptionists is a PITA.
Not sure where this you have to be ferritin under 100 to donate came from, thats certainly not my experience - you have to be in maintenance but thats it. Ferritin is the measure of Iron stores in the organs not the blood, so its irrelevant what the ferritin stores are on the blood. We remove the blood so the body use up iron to make more blood. It's not like we carry more iron in the blood.
You cant Treat this with diet.
I'd avoid raw seafood until de-ironed due to some of the bugs in seafood potentially causing issues with the high iron in the body.
Lots of really useful Facebook groups for the newly diagnosed - look at haemochromatosis family. The uk charity is becoming a bit more useful again so may be worth a look. The have some paperwork which may help and can do discounted high speed genetic testing if you need that confirmed.
Otherwise if you have any questions feel free to fire away.
Thank you for your advice, I will look at Facebook groups, never thought of that.The key question for the OP is what is your ferritin at the moment. If it's over 1,000 they need to get a move on, - mine was 1,200 at diagnosis and it took me 15 venesections to get it down to 50, which is where we like to keep it.
I was diagnosed and my de-ironing was private, I then got moved into the NHS for maintenance. I donate every 6months, but due to the donation service being a PITA on the last two times, I'm moving back into the NHS for a while in a nurse led unit. Seems ok for now. but getting blood results out of the receptionists is a PITA.
Not sure where this you have to be ferritin under 100 to donate came from, thats certainly not my experience - you have to be in maintenance but thats it. Ferritin is the measure of Iron stores in the organs not the blood, so its irrelevant what the ferritin stores are on the blood. We remove the blood so the body use up iron to make more blood. It's not like we carry more iron in the blood.
You cant Treat this with diet.
I'd avoid raw seafood until de-ironed due to some of the bugs in seafood potentially causing issues with the high iron in the body.
Lots of really useful Facebook groups for the newly diagnosed - look at haemochromatosis family. The uk charity is becoming a bit more useful again so may be worth a look. The have some paperwork which may help and can do discounted high speed genetic testing if you need that confirmed.
Otherwise if you have any questions feel free to fire away.
My ferritin levels are 505.4 so not sure how good / bad that is
The Facebook group I mentioned is run by a really lovely lady called Alma, very helpful and everyone on the site has been supportive. Really useful for the newly diagnosed.
Ferritin 500 is not too high I doubt you'll have any damage to anything else, over 1,000 is where they get a bit worried as you can get into liver problems especially if you're a drinker. When checked the consultant said my liver looked like I was an over weight alcoholic, - and I dont drink much and I'm skinny. Thankfully my liver returned to full health as I was treated. At the much higher ferritin levels, more serious liver problems, diabetes, heart problems etc become more likely.
The treatment can be a bit tiring, but post treatment I started to feel a lot better and a few months after finishing felt really quite good. Heamochromatosis also affects the joints and unfortunately that isn't fixed with venesection.
I also forgot to say, it's a good idea to have a break from excessive alcohol until de-ironed.
Ferritin 500 is not too high I doubt you'll have any damage to anything else, over 1,000 is where they get a bit worried as you can get into liver problems especially if you're a drinker. When checked the consultant said my liver looked like I was an over weight alcoholic, - and I dont drink much and I'm skinny. Thankfully my liver returned to full health as I was treated. At the much higher ferritin levels, more serious liver problems, diabetes, heart problems etc become more likely.
The treatment can be a bit tiring, but post treatment I started to feel a lot better and a few months after finishing felt really quite good. Heamochromatosis also affects the joints and unfortunately that isn't fixed with venesection.
I also forgot to say, it's a good idea to have a break from excessive alcohol until de-ironed.
My Ferritin level was 859ug/L at a recent check which I know is reasonably high, Docs don’t seem interested in doing anything about it though, considering going private but don’t even know where to begin with that.
Been feeling lousy for 6+ months, I don’t drink or smoke but I am quite overweight, I’m approaching mid-50s.
Been feeling lousy for 6+ months, I don’t drink or smoke but I am quite overweight, I’m approaching mid-50s.
oobster said:
My Ferritin level was 859ug/L at a recent check which I know is reasonably high, Docs don t seem interested in doing anything about it though, considering going private but don t even know where to begin with that.
Been feeling lousy for 6+ months, I don t drink or smoke but I am quite overweight, I m approaching mid-50s.
The problem with ferritin is that it can be influenced by many things, so it can be high without haemochromatosis being present - 800+ is quite high thou. Usually you need to have high transferrin saturation and high ferritin for Heamochromatosis to be suspected, then a genetic test is offered to confirm. There are a few genetic variations of the condition which are best explained from the charity website tbh. Been feeling lousy for 6+ months, I don t drink or smoke but I am quite overweight, I m approaching mid-50s.
I was steadily getting unwell for 10 years, went to my GP who fobbed me off, it was only when I was feeling really ill and I used my private medical insurance to get checked out that they found the condition.
if you want to go private, look at Gastro at the local hospitals and see who specialises in the condition, then call their private secretary for an appointment. Alternatively you can pay for the genetic test through the charity, and if positive use that to get a referral from your gp.
Runs in our family - but we are Irish and Scottish heritage, so the 'celtic curse' nickname is well chosen. Of 36 cousins on one side of family, 28 of us have Haemochromatosis.
I have been diagnosed now for 5 years. Started with 6-weekly venesection (blood letting), now balanced out at every 10-12 weeks. Wander into outpatients, stick a (ferking big) needle in chosen arm, sit there for 10-15 mins, needle out. Offered a coffee. Can leave 10 mins later. Easy as. Yearly check in with consultant.
It does not solve other issues - so yes, I was a little tired and achey. But I also have high blood pressure that is not solely the hemochromatosis. I am also wrong side of 50. Carrying a stone too much. Stressed by work. Not enough fitness these days. etc. So you do have to look holistically at lifestyle and venesection will not solve it.
I have been diagnosed now for 5 years. Started with 6-weekly venesection (blood letting), now balanced out at every 10-12 weeks. Wander into outpatients, stick a (ferking big) needle in chosen arm, sit there for 10-15 mins, needle out. Offered a coffee. Can leave 10 mins later. Easy as. Yearly check in with consultant.
It does not solve other issues - so yes, I was a little tired and achey. But I also have high blood pressure that is not solely the hemochromatosis. I am also wrong side of 50. Carrying a stone too much. Stressed by work. Not enough fitness these days. etc. So you do have to look holistically at lifestyle and venesection will not solve it.
TheHeadhunter said:
Yes, push. Chase. Badger them. Bully them. From our experience the NHS are utterly ste at Haemochromatosis in every way.
Wheras I was as smooth as. I walked into GP appointment to say 'my brother had a health check up for new job last month, he has Haemochromatosis'. Doc took bloods there and then. Given a consultant within about 2 months, one more set of bloods and I was hooked up for treatment. Maybe 3 months from query to being treated. But then I am Scotland - our NHS is organised differently and they are used to 'celtic curse'.te at Haemochromatosis in every way. Gassing Station | Health Matters | Top of Page | What's New | My Stuff