Does anyone have experience of Haemochromatosis?
Haemochromatosis : Does anyone have... - Atrial Fibrillati...
Haemochromatosis
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LaceyLady
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23 Replies
•
BobDVolunteer
Not personally but we did have a member on the old Yahoo forum some years ago who had the condition so I do know what it is and how it could be a cause of AF. Apparently the build up of iron in the organs causes all sorts of problems. The main issue I fear is that it is such a rare condition that diagnosis is often a long time coming.
Have you been so diagnosed or is this just a general query?
I was in AF all last week, long saga but paramedic recommended to my dr that I had blood tests. Ive been diagnosed with T2 diabetes and one of the meds can cause vit B12 deficiency. My GP rang in evening to say my iron level was way way over the normal levels and I’d have to have blood tests to see if I have haemocromotosis. Had blood tests now waiting for result.
hello Lacey Lady, I ws diagnosed with AF just over 2 years ago, and since them my iron levels have shot up, but I have not been diagnosed with haemocromotosis; my ferritin has also gone way above normal levels, my doctor has not advised anything, just keeping his eye on it. He has never mentioned a connection with AF though. Please let us know how you get on, I'll be very interested to see if there is a connection.
You need to get tests, it is a genetic disorder AND can damage your organs!
Hemochromatosis is associated with AF. It is quite a serious disease as it can mess up a number of organs in the body. My 2nd cousin had it and we were all tested. Our side of the family were negative. It did cause her a lot of problems. You will need blood draws to get the iron down and those should start pretty pronto I would suggest.
Yes I have it. Discovered it about 14 years ago. I have never linked it to my AF though which I’ve had for about 6 years. Regular blood giving controls the Haem and an ablation has helped with the AF and life is still very much livable.
There are far worse conditions that other people have.
Danny
Crikey. I have haemochromatosis but didn’t consider aFIB link. Mine is the better hereditary gene combo C282Y / H63D so less damage supposedly done! Here’s a link that will provide info on the condition. haemochromatosis.org.au/gen... they got my levels down to 100 I only needed to a venesection 1-2 times a year. Great podcast too haemochromatosis.org.au/iro...
Yes I have it, (HH or GH ) easier than typing Haemochromatosis!
Best to get a full iron panel done, and if ferritin and saturation higher than normal, request genetic testing.
Please don’t worry though! The best info is from Haemochromatosis Uk, they do brilliant booklets and even have an advice line.
It is the commonest genetic condition in UK and under diagnosed as any symptoms are generic and they could be any number of conditions. We will all have friends with it but have no idea! It is when the body’s self regulating of iron doesn’t function and you store too much. The commonest symptoms are tiredness and joint pain but many with the genes never load iron or have any symptoms, and even high iron can be silent, no symptoms. Because women bleed until menopause this depletes iron and HH doesn’t start.
The main danger is to the liver, although b high levels can affect all organs, especially heart and those controlling insulin etc so diabetes. But I have to stress this is rare. The condition takes time to develop and takes time to understand how it affects each person differently and what to do, or takes weeks for the genetic test but Haemochromatosis UK also offer a kit.
Ask your GP to refer you to the nearest team for HH. The first treatment is regular venesection - giving blood - to provoke body to remove iron from tissues to make more haemoglobin. I did this fortnightly, many do it weekly. You should also have your liver tested and heart and other organs. My AF unrelated to HH.
Join Haemochromatosis Uk! Really do. Good luck with the diagnosis.
LaceyLady• in reply to
Thanks, I’ve read up on it. I have PAF, last week seems I know have atrial flutter 🙄 recently diagnosed with diabetes T2! No idea where that comes from, not in family, but the HH may very well be due to G Mothers strokes, father had one stroke after another and died, had enlarged heart and I think cirrhosis, high BP. His youngest sister died at 67 with a massive stroke. We have being Liverpudlian, a lot of Irish genes. 🤷🏼♀️My level was well over 900 so 🤷🏼♀️
Are you in uk?
LaceyLady• in reply to
Yes. An Irish friend told me about this months ago, before I was diagnosed with T2 diabetes. I have PAF. Last week went into A FIB and had a right rigmarole trying to be seen by paramedics or drs. I knew I needed blood tests to check my B12 as I’m on GLICLIZIDE. Paramedic phoned my drs and asked them to do lot of blood tests, some of which I told him I wanted. Tuesday evening my GP phoned saying my iron levels were way off the scale 😳
My brother has Haemochromatosis and I'm also a carrier.He has to have blood regularly removed and me being a carrier don't yet but are keeping regular blood checks.
Hi my nephew was diagnosed with hemachromatosis and as it apparently runs in families and with some symptons I tried to get consultant to have me tested but to be honest I think something took his hearing away for a few moments so I tried a few more times and the same thing I've heard its quite an expensive test so 5 years on i still haven't had tests done its like a case of we live in hope and die in despair
Go to your GP, this is ridiculous, it’s a serious condition. It can ruin pancreas, liver and heart.
I know but I've been countless times and when I mention hemachromtosis or anything to do with tiredness they simply turn a deaf ear leaving me feeling that I'm some sort of hypochondriac but I will try again with more assertiveness
When my blood test showed high iron levels, I started donating blood regularly and the levels normalized. While I was tested for hereditary Haemochromatosis with a negative result, the blood donations were certainly helpful in reducing iron level.
I looked on the blood donation web page, they won’t take people with PAF! I have given blood many years ago, I am a rare blood group, A Rhesus negative.
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