Iron,hemoglobin and the heart!

[Sigi1]

Hi everyone ❤️

First of all I wanted to say how grateful I am for this forum as it’s a great help.

I was diagnosed 3 years ago with AF and have since then had two ablation and now having the third one.(just waiting for the date)

I don’t tolerate the medication really well and also getting episodes still much much less AF but now it’s more Atrial tachycardia and atrial flutter…. According to the dr.

What I wanted to ask has anyone had any experience regarding the iron levels and the hemoglobin being rapidly low all of the sudden and is that someway connected to the heart or is that something that one can develop with AF in the long run? Or could it be completely random this time around.

I have always been fine in my levels but all of the sudden I dropped really low as diagnosed with anemia.

Had a iron infusion yesterday and feel very wobbly today with fever but I guess it’s all part of the normal healing from that.

I was just curious if iron and hemoglobin are somewhat connected or not really and if anyone has had experiences with that.

I really appreciate you time and effort as this forum is so so helpful.

Thank you x

[Autumn_Leaves]

I have the opposite problem. I have hereditary haemachromatosis causes iron overload. It’s well known that haemochromatosis can lead to excess iron deposition in the heart which can cause arrhythmias and cardiomyopathy. It’s treated with venesections to get the iron levels down.

I don’t have experience of anaemia obviously, but there are sometimes people on the day ward having iron infusions when I’m in having a venesection, so it’s not that unusual. In my experience the staff on the ward are very helpful and you can phone them if you have any problems following treatment, or even call in to see them if you think it’s more urgent. They may want to do some further blood tests and they have a far better idea on what else to test for than the GPs.

Obviously if you are anaemic your body is less efficient at getting oxygen to where it’s needed and you may well develop palpitations, breathlessness etc, so it might not be a good idea to push yourself right now. Put your feet up, if you can. You’ll need to get to whatever is causing your anaemia, especially if you’ve been fine up to now. It may be dietary, but it could a stomach ulcer bleeding, perhaps if you’ve been taking NSAIDs or aspirin. There’s also an autoimmune condition called hemolytic anaemia which you can be tested for. Also, if you haven’t been tested for B12 deficiency you should be - my sister felt very unwell with that. If you don’t feel better by Monday, definitely seek an opinion either from the haematology ward or from your GP, and try not to overdo things in the meantime.

[Colutd in reply to Autumn_Leaves]

I too have haemachromatosis and AF at i I doubt it’s a lack of iron that’s contributing

Regards

[Autumn_Leaves in reply to Colutd]

The OP is being treated for anaemia, not me. I suggested he/she get in touch with the ward where he/she had the iron infusion if feeling unwell afterwards. In my experience, the staff are very helpful if any kind of aftercare is needed.

[CDreamer]

I have almost permanently low iron levels and struggle to keep in range but I know in my case that it’s an affect of the medication I take, not the AF directly.

Many antibiotics have the affect of lowering iron levels as do some drugs for lowering cholesterol and immune suppressants. There are also quite a few conditions which have low iron as a symptom but don’t scare yourself by googling!

Perhaps you can ask your doctor what they think is causing your low levels?

[mjames1]

Yes, I've had this problem for many months now. Depending on the extent of your hemoglobin (hgb)and Iron stores, including Ferritin, the usual work up is to have a colonoscopy and endoscopy to see if anything is bleeding. If that is negative, they sometimes will do a capsule endoscopy to look at the small intestine missed with the colonoscopy. They might also check your urinary system depending on symptons. Other reasons for anemia might be poor absorption due to drugs such as antacids/PPIs or Celiac disease. Lastly, a hemotologist might look at your bone marrow to make sure it's healthy. This is the work up for men. Can't tell by your screen name if you're a man, but if not, they might look at menstrual bleeding if present, etc.

I'm not trained in medicine and don't know your whole story, but I'm surprised they just started you on IV iron without doing some sort of work up as mentioned above, unless you just didn't note it. I see no connection with afib. The IV iron may or may not work, but you want to investigate the reason your hgb and Iron are low, not just treat it.

In any case, do let us know how things work out. Personally, I'm interested in your experience with IV iron, as I might try that soon. BYW, what were your pre iron infusion hgb and Ferritin levels?

Jim

[Autumn_Leaves in reply to mjames1]

That’s very good advice. The underlying causes of anaemia can potentially be very serious especially as people get to middle and older age.

[PlanetaryKim]

My afib began in 2015 when I became quite anemic from progression of a leukemia that had not yet been diagnosed. As far as I'm concerned, you cannot expect to resolve afib if you are anemic. Of course, getting your iron levels back into right zone doesn't guarantee the afib will go away. but it's an essential piece of the puzzle.

[PlanetaryKim in reply to PlanetaryKim]

To be more precise... anemia refers to hemoglobin below normal. iron deficiency refers to ferritin level below normal. You can be one without the other. I was both - anemic (low hemoglobin) and iron-deficient (low ferritin). Both need to be normalised to address afib - but especially low hemoglobin. Have you had your hemoglobin levels checked?

[LaceyLady]

haemochromatosis.org.uk/c28...

I’m having to tackle my drs who are avoiding sending me for testing! This society say I should be. I think there’s a possibility of fluctuations

[Autumn_Leaves in reply to LaceyLady]

Have you checked your most recent routine blood tests, particularly your ferritin levels? If your ferritin levels are normal, chances are that there is no suspicion of haemochromatosis. You are unlikely to have further tests ordered unless your blood tests are showing abnormal results. Besides, if your ferritin levels are normal, it’s not as if you are going to be missing out on any necessary venesection treatment because there would be nothing to treat. Why can’t you check your most recent ferritin levels?

[LaceyLady in reply to Autumn_Leaves]

my brother had it, my sisters a carrier and the info from the Haemochromatosis ass. Say I should have the test. One time my ferritin was over 900+ 🤷🏼‍♀️ latest I think is 190 but, the link the association sent me says that even carriers may have problems

haemochromatosis.org.uk/c28...

[LaceyLady in reply to Autumn_Leaves]

also I have PAF and now T2 diabetes which is mentioned on their site, interesting

[Autumn_Leaves in reply to LaceyLady]

If your ferritin was 900+ then you should definitely have had more investigations. 190 isn’t massively high but would be considered above the maintenance level for someone with haemochromatosis. So you really need to get an iron panel and an up to date ferritin at the very least. Unless you are properly assessed and diagnosed, you can’t be treated. If you are actually overloading and you’re not being treated, it’s not a good situation. Forget the genetic testing for now and see what’s happening with your iron levels. The genes themselves don’t harm the body, it’s the iron that does, and it’s the iron levels that inform the decision to treat.

[LaceyLady in reply to Autumn_Leaves]

GP agreed to do the genetic test today, booked for next week. I had blood tests about November which the 190 was then.

[Autumn_Leaves in reply to LaceyLady]

That’s excellent news! What took them so long?! Did they agree to do an iron studies/TIBC test too? I hope it all goes well, not that a diagnosis of haemochromatosis is a good thing in itself, but it’s important to know if you have it and are treated if necessary.

[LaceyLady in reply to Autumn_Leaves]

so far it’s just the genetic test, said they found they can do it with a local laboratory. I have already some blood tests done I think October/November so maybe I’ll have to wait and see. I get annoyed because my son can get anything he needs from same GP, do what does that they’ll you?

Look up Caroline Criado Perez, wroteca book ‘Invisible Women’! She’s on Twitter and I get her newsletters.

Ps I wrote to the Haemochromatosis society sending copy of my brother’s results! They said I should be tested and that even carriers may have problems as they’ve found. Also, as I was worried the drs would refuse to do tests needed, they would advise them what they should be doing👍🏻

[Autumn_Leaves in reply to LaceyLady]

Well, you definitely should have been tested if you have a first degree relative with haemochromatosis. My sister was tested immediately after I was diagnosed with no problem and she turned out to be C282Y/C282Y just like me, and her venesections were started shortly afterwards. Fortunately her GP was aware of the condition.

I agree 100% that women are dismissed too often by healthcare professionals. We know our own bodies and we know our own minds, and we’re perfectly capable of differentiating between physical symptoms and “stress” or whatever, and being fobbed off rather than being treated or investigated further. Women and cardiac symptoms is a prime example of women not receiving timely care, and consequently a lack of public awareness. I always feel I have to convince health professionals that what I’m reporting is real, and that’s from a lifetime of encountering these attitudes at random. It’s something that I feel I need to be on the lookout for and go in being prepared to assert myself.

[Autumn_Leaves in reply to LaceyLady]

I need to read that book!

[LaceyLady in reply to Autumn_Leaves]

article in DM yesterday, league table on quality of women’s health care, UK something like 8th!!

[Jajarunner]

Docs think anaemia in patients with a bleeding disorder called HHT makes them prone to get Afib as a result. Which suggests a link but doesn't really answer your question!!