Hi just wondering how many of you with aFIB also have Haemochromatosis?
I only learned this iron overload disorder can cause aFIB. Listen to episode 9-10. haemochromatosis.org.au/hae...
Luckily my HFE variant is compound heterozygous C282Y / H63D combo so not as severe but I still need three-monthly ferritin checks and occasional venesection (twice a year).
To the best of my knowledge only one member from our old Yahoo forum had ever been diagnosed with the disease and he never came across to HUL. It was through him that I learned about it and how it (amongst lots of other problems ) could cause AF. I have maybe sign-posted three people since then.
Given aFIB and Haemochromatosis symptoms are similar and GPs rarely test for it let alone cardiologists, I thought I’d raise awareness to discuss this with primary medical care provider. A simple ferritin blood test diagnosis it. Depending on the gene combination it’s extremely important for those dx with aFIB
Hey Ozz...Do you have haemochromatosis and if so, what are your symptoms. That link was very interesting indeed.
Hi, yes my HFE variant is compound heterozygous C282Y / H63D combo so not as severe but I still need three-monthly ferritin checks and occasional venesection (twice a year). Go to the home page in that link but pretty much episode 10 of the podcast outlines symptoms like breathlessness, fatigue, leg weakness, restless legs, etc… all the symptoms of aFIB!
Yes Aussie...do you have any pigmentation of lower legs with heat and itchiness in general but specially on lower legs. ❓
Where do you live in Ozz. My son has lived in Sydney for six years.
I used to live in Queens Park in the Eastern Suburbs of Sydney… I moved to Lake Macquarie near Newcastle four years ago. I too suffered with a thick Pigmentation on legs but back then they didn’t know I had Haemochromatosis. Maybe you should get your ferritin levels checked. If it’s not that maybe gut issues causing a niacin deficiency?
That’s very interesting indeed Ozz. I’ve recently had blood tests, including iron and thyroid. Do you think they would have shown Haemochromatosis, or is a more specific test needed. This itchiness that I get drives me absolutely bananas, especially so, when my legs are warm. I have to sleep with my legs uncovered. Living in Australian heat would kill me, without doubt. I live in North East England (for my sins). My son who is a pipe organ builder, travels quite a lot and from time to time, gets up to Newcastle area (Armidale etc). He now lives in Wollstonecraft and loves it.
PS...Do you still have pigmentation on the legs. ❓
Mine supposedly was caused by a niacin deficiency due to an endocrine condition. Once that got sorted the pigmentation disappeared until now, 5 years later it’s coming back. itching could be kidneys or allergies. I get that sensation sometimes and thought it was from AFib
Just thinking about your itchy question… B6 or Vitamin D can cause a rash. Or Prickly heat which is more common in summer but if you’re sweating a lot and cool down suddenly your sweat ducts could be blocked. Hormone fluctuations too. Ask whether your medication is behind it. Just some benign causes to consider 
Thanks Aus for your follow up...it’s much appreciated. This condition is certainly having a detrimental effect on my life. I have vasculitis (so they tell me) and also type 2 diabetes. I tend to have itchiness here there and everywhere but especially on the lower legs when they are warm. I’m going to ring my GP in a few hours time to see if there were any signs of high ferritin levels from my recent blood tests. I’ve had many blood test analyses recently and they’ve all come back good. Even my blood sugar readings were low. Without sounding dramatic, I think I’m living in a nightmare‼️‼️
I’m sorry to hear that. I’m sure too many of us here can relate re: experience of living a nightmare … how we survive these symptoms is a miracle. We all deserve better from the medical professionals who treat us. Too many Drs Don’t Know and often Drs Don’t Care! Vasculitis I read can cause your symptoms. I truly hope you get an answer. If all fails try to soothe it with Calamine lotion. An oldie but goodie remedy.
Thankyou and Happy New Year to you and yours.
Yes you need iron studies to pick up ferritin levels. If high you do another blood test for the HFE genes. The UK probably has its own hemochromatosis association providing info but your GP should know.
Interesting post. I had a violent AFib episode for 8 days last May before it was controlled and converted at the Emergency Room. I did not know what AFib was, but would go in and out of it paroxysmal for 24-48 hours a couple times per year for 5 or more years. This past May it wouldn't resolve on it's own.
I've had ongoing complications since the week in May. I've met with a "lot" of doctors and had a "lot" of tests, with mostly uneventful results except sleep apnea. I've been treated successfully with CPAP and remain in NSR but still have ongoing complications from that week (constricted breathing on inhale randomly, nighttime congestion, chest pain randomly usually at rest, stomach bloating, dizzyness). I'm able to exercise fine, but have these ongoing symptoms.
The most recent cardiologist I went to in December is a heart failure specialist, because I thought I had some degree of HF. My third Echo came back good and am scheduled for a Cardio/Pulm stress test (have already had regular stress test and a nuclear stress test normal) and a Cardiac MRI. This doctor also did tons of blood work (caridac and HF tests normal). One of the pieces of blood work was a Ferritin test and mine was 3x high from normal. All my other liver tests were normal.
I wonder if there is a connection, which caused which type of thing.
If your ferritin is high you need to do the gene test for Haemochromatosis. You are born with Haemochromatosis by your parents passing one or both HFE genes down so guess it comes first. Of course there are other reasons for aFIB like stenosis. I was born blessed fist with Haemochromatosis and at age 8 supposedly with mitral valve stenosis (rheumatic fever). I didn’t stand a chance!
I ended up getting genetic testing for HH. Turns out I'm homozygous for the H63D variant (each parent sent down this abnormal gene). Negative for the C282Y variant, so I guess that's good. I have the Irish heritage, which is common for HH. Ferritin was high on its own with normal iron sat numbers. Currently doing monthly phlebotomies until normal and then periodically as needed.
My AFib was driven mostly from sleep apnea (and probably other metabolic stuff like BP, weight, alcohol, etc.). My CPAP has been keeping me in NSR for the last 7 months, so I doubt the HH had much to do with it. I do get ectopics now, which are a pain, but after what my heart went through, not shocking either.
Thanks for setting up this thread originally!
I don't have the disease but my Naturopath did say my Ferritin at 285 (nr the top of the usual range) should be lower. I eat a lot less red meat now and my last test 2 months ago was 141 (i.e. mid range).
Here they want it between 50-100. I’d keep a check on that.
My brother had haemochromatosis, and though it is genetic, I dont' have it. But I have enough other things to keep me on my toes. 🙂
Aussie, I have mitral valve stenosis from having had rheumatice fever as a child. It damaged the valve, but it functions ok. Your valve may be able to be repaired or even replaced, if needed. I needed to have my aortic valve replaced 11 years ago, and thought the surgeon would also replace mitral valve, but he said it was functioning ok and may never need to be replaced.
Haemochromatosis is genetic. When I was dx all my family had to be tested. My mother and sister were carriers with one gene. My brother and I had it so our father who had passed away must have had the other gene for it to be passed down. We’ll never know if he carried one or two genes.
I have haemo and control it with regular venesections. My cardio advised that harmo can cause damage to your main organs but thankfully mine were checked and found to be fine. I didn’t know I had until my brother found out he had the HH gene and then I got tested. It’s a specific gene blood test here in the U.K. so you have to ask for this blood test. Apparently it stems from where your ancestors came from. As I’m Scottish it came through this route. I have read that it’s because it was never bred out as the Scots were never really conquered so to speak. Same with the Irish I’m led to believe. I now live in England and my daughters have married English guys so it’ll be bred out of my family thankfully
Lol … I’m of English, Scottish and Irish descent and I got it as a fifth-generation Australian. It can be passed down if each parent carries one gene. My sister only got one gene. My brother and I both genes. The genetic studies to date suggest that the C282Y mutation first arose in Europe and was spread by Vikings and later by the Normans throughout Europe, indicating a genetic link between hereditary hemochromatosis and Viking ancestry. Apparently they couldn’t get enough iron in their diet so the body responded by making its own! 1 in 7 Aussies have it but few get dx!
Yes I have both. I was diagnosed with haemochromatosis about 14 years ago resulting in now 6 weekly blood tests and approx 4-6 venesections a year. I then started suffering with AF about 8 years ago and had an ablation in 2016. Danny
I have a first cousin once removed who was diagnosed with haemochromatosis. We all took ferritin tests and no one else seemed to have it (on our side of the family). We have a history of AF but in this case the two are not related. The lady in question is in a bad way unfortunately. AF is one of the lesser results.
Thank you that was an interesting link. My blood tests for years has always shown slightly over range red blood cells and ferritin at top of range but not over. Once my ferretin was a bit over range but now back within range. I eat only small quantities of red meat these days. My Afib am told was caused by sucessful aggressive breast cancer treatment.
Heamachromatos is rare in females that are sexually reproductive. Affected males need to have venesections or blood letting on a regular basis. Females menstruate so do not suffer with this problem.
Thanks Palpman....but am long past the point of menstruation....😊
I was told it gets dx later in life due to menstruation. They didn’t pick mine up until age 54 or 55.
Not true Women do suffer from it too.
I never said women do not get it. Menstruating women do not suffer symptoms for obvious reasons.
"Females menstruate so do not suffer with this problem"
Yes. That's correct. It affects men with liver, heart and other organ problems. Women with Haemachromotosis get rid of excess iron by menstruation.
I’m sorry to hear that as I was dx with a rare cancer (Neuroendocrine tumours, of which the aggressive form took out two sisters and my father), add mitral valve stenosis, AFib/ectopics, osteoporosis and haemochromatosis. I have other chronic health complaints (could there more already I say). Yet I look fine! It’s my innards that are a mess. Sadly of the 7 specialists I’m forced to see re: surveillance or treatment not one can tell me which caused what. It all unravelled at age 47. I’m about to turn 59 and feel I’ve got through amazingly. I credit giving up alcohol, great diet and exercise. Best cure on earth but rarely supported by the medical profession. Of course haemochromatosis needs venesections. Sending you a virtual hug. No one understands the impact of cancer until they get dx with it. A journey in itself you want no-one to experience.
Thanks Aussieheart.....sending u a virtual hug back. Am good now - 7yrs since diagnosis & still in remission. Am lucky to be here so every day is precious & a gift. Grateful to the fab team who treated me. I seem to have accrued a little raft of conditions and tbh am hoping Haem....wont be another as it will mess with other well treated conditions....but will keep an eye on it!
I have hereditary/ genetic Haemochromatosis.
There are many myths - it is sometimes called the Celtic curse but actually is widespread in Northern Europe and the USA. It is probably the commonest genetic disease in the uk and there will be folk on this forum who have it and have no idea, and it may never become a problem or it may be damaging, the effects and degree of iron loading are so varied.
There may be more affected in Ireland and Scotland because some settled communities will have allowed a recessive gene to become obvious.
One is not born with it, although the genes are necessary especially the 282 mutation, the majority of those with the full genetic picture, ie the HH genes from both parents, never load iron. The triggers for iron loading are subject to research. To be diagnosed with genetic Haemochromatosis you need to have BOTH the genes and increased iron stores.
A full iron panel that includes ferritin and other iron measures can pick this up. Ferritin can be raised by inflammation from all sorts of illhealth and is not always a reliable indicator of itself.
The symptoms are so general and so like other illnesses that it is hard to diagnose without blood tests. The liver is the most vulnerable, joints especially in the fingers and ankles, but yes heart and other organs and glands too. Fatigue is often the most quoted symptom. The degree of damage is associated with the amount of iron loaded but there are some folk who have a hard time with relatively low stores of iron and some with very high who seem ok. It is a disease that will benefit from research.
And women can have it when young but less likely as menstruation is like venesection! Ironically (pun intended) I was anaemic up until age 50.
If you have any doubt, ask for a full iron panel, and if ferritin and a marker called tranferrin saturation are higher than normal, ask your GP to arrange a genetic test. The treatment is crude but effective - venesection- I had a lot. You will also have all your organs scanned and then rescanned when older, to check for iron stored in the wrong places.
There is a brilliant Uk Haemochromatosis Association with great information and they can also provide a reliable and NHS compatible genetic test for a fee.
Phew, apologies, that was a long post
Thank you for the info. Thats really helpful. I had a full bloods panel done - will look it back out & have nosey again. I dont remember there being a saturation figure. I do remember that red count was over a bit (normal for me) & ferritin had dropped back into range, again was a tadge over last time. Am never massively out so its probably just the normal for me.
Europeans with Celtic ancestry migrated to many continents including Australia (voluntary and/or imprisoned as in my family’s case). Anyone who is Caucasian could have it, they told me. We now believe I am the first in all generations for it to be picked up. Most of my siblings on my father’s side died of cancer and liver damage… they were big drinkers so of course that was primarily blamed but I think haemochromatosis surely plays a contributory role.
Absolutely- the damage can go undetected for years! The relevant genetic testing is relatively and the understanding increases all the time. I suspect my mother had Haemochromatosis but she died before there were tests.
I was diagnosed with HH about 4 years ago. I also have A.fib. I am awaiting an appointment for venesection as my iron is high again. I had my blood tested due to feeling unwell with exhaustion etc.
Hi there Eire...Sorry to hear of your disposition. Could I just ask if you have any skin pigmentation issues (legs in particular) and also itchiness❓
Itching can be a symptom of liver issues, which can be HH related, it can also be due to histamine, which also can be HH related. Severe itching was my first symptom, I was surprised when liver tests came back fine but iron tests came back too high, and HH suggested and the whole genes, testing sibs, Venesection’s, regular blood tests started. Bodies …
Thanks for that info Fab...I’ve had much blood analysis done but have been invited again to the GP surgery for more blood tests. I’ve got a feeling they’ve got a sideline going making black pudding😉. I’m taking antihistamine, which I’ve recently changed to a different brand (used to be certirizine). I’m going to surgery on Sunday to discuss things with doctor but I think my recent ferritin levels came back normal. Thanks again for your contribution and Happy New Year.
Hi, 😊 I don’t have pigmentation problems but I do have annoying itching which comes and goes. Have you had a liver function blood test done. I think itching can be a symptom of liver problems (among other things, including medications etc) Best of luck getting to the bottom of this problem🍀 ☘️
Hey Eire...It just so happens that I’m, this minute leaving my GP surgery, having had more blood tests, relating to liver function. Thankyou kindly for your response.
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