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High Ferritin links to AF?

Dippy22 profile image
27 Replies

Does anyone have any information on high Ferritin levels and links to AF?

I you suffer from AF have you had your ferritin levels checked?

My levels have been increasing since 2021 and are just about to tip into the dangerously high range and I think it’s linked to the increase in AF episodes that I’m experiencing.

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Dippy22 profile image
Dippy22
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27 Replies
CDreamer profile image
CDreamer

Quite the opposite for me, mine are borderline limit anaemia but that is partly because of the meds I take.

BobD profile image
BobDVolunteer

Haemachromatosis, where iron accumulates in organs in the body is a known cause of AF and needs treating. Have you been checked for this?

Dippy22 profile image
Dippy22 in reply to BobD

hi Bob. Yes, I was checked for it by the GP back in 2021 when I flagged it up to him. It came back negative, but worryingly my F levels have continued to rise from 183 back then to 233 now. I spoke to a GP last Friday and he’s referring me to haematology, but everything goes at such a snails pace here in the U.K. 🫤

Fryguy profile image
Fryguy

I have Hemocromatosis and had a genetic blood test to find it. Now I check my ferratin every month to keep it in check and if need be i give a bag of blood . The electrophysioligist / cardiologist never seems to interested that I have it...My level was around 1000 when I was diagnosed and now my cutoff is 50 andthen I give a bag of blood to keep it in close range . Hope that helps ...

Dippy22 profile image
Dippy22 in reply to Fryguy

Thanks. I reported it to my cardiology dept, but got no response which I find somewhat incredible. 🤷‍♀️

secondtry profile image
secondtry

My Naturopath advised my Ferritin level should be much lower to guard against AF. I can't give blood (the only way to reduce it) as I take Flecainide but he does do blood letting if I wanted to reduce it.

For the record, I have my levels tested every year at my GP surgery (one of a number of annual tests) and it seems to vary quite a bit within the normal range (currently 30-400), which also changes 😆. I had 2018:285, 2019:149, 2020:135, 2021:141, 2022:239. So far I have taken no action as remain AF free.

Dippy22 profile image
Dippy22 in reply to secondtry

Thanks. I too can’t donate, but will look into non-donation draw off. I’m shortly due to have spine surgery, so a by product of that my be that I lose some blood during the operation. I’m just concerned that I won’t stay AF-free to get on the operating table next week. 😬

Adalaide2020 profile image
Adalaide2020 in reply to Dippy22

Good luck with your surgery 👍

Afibsimon profile image
Afibsimon

hi Dippy. I was diagnosed with Permenant AF Five years ago. I am ablated and am currently fine. I am just currently having investigations conducted as have high Ferritin. It is only slightly high but have had high levels for 12 years apparently. I know this does not answer your question, just letting you know, there is another one out there. Will post up with any outcome to tests that I should get in a couple of weeks.

19591959 profile image
19591959

Hi Dippy, it was such a relief as I have the same problem at the moment. My last two blood tests have shown ferritin levels of 672. I have been to the GP as I have been feeling quite poorly. No explanation has been given & I keep being booked in for another blood test, which can take another 5 to 6 weeks due to the queue. It is so worrying....

Dippy22 profile image
Dippy22 in reply to 19591959

I’m getting some interesting responses to my post. 🤔 It seems some docs are concerned whilst cardiologists aren’t! If for any reason you can’t donate blood (one answer said if you're on Flecainide then you can’t), then maybe you could investigate having some blood drawn off by a private phlebotomist.

Figbar profile image
Figbar

My level was 236 and not one MD was concerned!

Frustrating!

Profound15 profile image
Profound15

I have haemochromotosis and af. I have regular venesections to keep the level around 50 to 75. My haemo specialist is a professor and he is quite happy keeping it there. I am Scottish and am led to believe that the HH gene which causes the issue was never bred out in either Scotland or Ireland. I live in the south of England now and was told I was the first case they had experienced in the early noughties. There’s now loads of people who have been diagnosed with this. You need a genetic blood test to determine that you have the rogue gene. Perhaps asking for this blood test may tell you one way or the other. My brother also has the issue. My granny had dementia and it was in other members of my older family from my fathers side. I think both diseases could have occurred due to very high iron (ferritin) in their systems but who knows. Parkinson’s has also been identified in the family. They were never tested for haemo.

Dippy22 profile image
Dippy22 in reply to Profound15

Oh my goodness! Both my mother and her mother have/had dementia!! I’ve been tested for heamochromotosis and it came back negative. I gather high ferritin levels can cause liver damage too.

LaceyLady profile image
LaceyLady

get checked for Haemochromatosis, Celtic disorder effete your iron levels increase.

I’ve finally managed to get GP to do genetic test and yes I have. Liverpool/Irish

Dippy22 profile image
Dippy22 in reply to LaceyLady

Thanks. I was tested for that back in 2021 and thankfully it was negative. x

Profound15 profile image
Profound15 in reply to Dippy22

hi Dippy

Was it the HFE gene test that they did as ordinary blood tests will not pick it up. It’s a specialised blood test. Worth checking. If you have high ferritin it’s deffo worth have a few venesections. When I was diagnosed (I advised them which blood test to do as my brother was diagnosed first and he told me which test) I had quite a few venesections before the ferritin was at normal levels. I was at 635 ferritin. Had no symptoms at all.

Dippy22 profile image
Dippy22 in reply to Profound15

I can’t find out cos my GP records online don’t go that far back, so I’ll enquire. .

LaceyLady profile image
LaceyLady in reply to Dippy22

Ferritin levels fluctuate. If you have parent/s or siblings with it you need a genetic test. I have a variety called ‘compound’ because I have 2 variants and apparently that’s not been studied as well as other variants. 🤷🏼‍♀️

Gre-ta profile image
Gre-ta

Hi, I had very high ferritin levels too. I had been taking quercetin during the pandemic & once I had my first vaccine I stopped. 6 months later I had my annual review, ie blood tests & that’s when the high ferritin level showed up.

A couple of months later I started taking quercetin again, as an anti- inflammatory & had a few months after that had another blood test which showed my levels were down. I did some research & found out that I have a mutation of the gene that causes haemochromatosis but uploads ferritin more slowly, but also that quercetin helps the body process iron & get rid of it naturally. I’m not expressing this very well but this was a relief as if you take blood thinners you can’t donate blood which would have been the way I would have dealt with it. I don’t know if this had anything to do with my AF or not as that started 6 years ago.

I now take quercetin every day & according to my latest blood test my ferritin level is normal. Quercetin has lots of other benefits & is used in Chinese medicine. It is a polyphenol.

Dippy22 profile image
Dippy22 in reply to Gre-ta

That’s really interesting, thank you. I’ll look into that. x

Dippy22 profile image
Dippy22 in reply to Gre-ta

Yo! Quercitin looks Awesome! I’ve ordered some. Thank you!

Dippy22 profile image
Dippy22 in reply to Gre-ta

update. I start taking quercitin (and milk thistle) just over a week ago and managed an entire week without an AF episode! That’s an incredible result for me, as my AF episodes have been at least two per week and lasting anything from one to three days since October last year.

Hopefully it’s not just a fluke, so I’ll give it a few more weeks and then get my Ferritin level tested again and see if it’s made a difference.

AussieHeart profile image
AussieHeart

Love this forum. Who knew there was a link! I have HH but got lucky as genetic test showed mine was compound heterozygous (ie C282y/H63d) combination meaning my iron load is lower. I still get Ferritin levels checked every 3 months and usually have one venesection bag of blood removed per year. My cardiologist/ EP never mentioned it as a cause for AF but nor did they raise sleep apnea either!! These links are interesting haemochromatosis.org.uk/c28... and haemochromatosis.org.au/

Dippy22 profile image
Dippy22 in reply to AussieHeart

When I searched on Health Unlocked I only found links to ferritin on other sites like thyroid issues, etc. We certainly need more info about it on this AF chat site, as there’s lots of comments from people on this thread with Ferritin issues.

Gre-ta profile image
Gre-ta

That is good news. I’m not sure the quercetin works that fast but perhaps the combination with milk thistle is good. I have a friend who had problems after a hip replacement. It’s complicated & I can’t remember which alloy was used for the joint but she ended up with dangerous levels of metal in her blood & was being tested every 6 months or so. She started using kombucha every day & the level went right down. She didn’t even know that was a thing but when she was trying to figure out how that happened she realised the only change in her diet was the kombucha. A bit of research on the internet revealed that kombucha does also somehow rid the body of metals.

Dippy22 profile image
Dippy22 in reply to Gre-ta

Hmmmm, I spoke too soon and started an AF episode shortly after writing that. 🫤. It only lasted 24 hours which is short for me. However, I identified that its eating cream that triggered it. I DO like cream! The episode the week before was a few hours after eating quite a lot of gorgeous clotted cream and then a couple of days ago I ‘treated’ myself to some cream eclairs and bam! off it went again. Darn it! As another person on this site said - if I really like it, I know it’s probably not good for me. 😟

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