Anyone have an iron infusion, and if so how did it affect your afib, or for that matter anything? Had my second infusion yesterday and had a short afib episode last night. Could be a coincidence, but very unusual for me to get episodes with my daily dose of Flecainide. FWIW I do not have anemia (low hemoglobin) but just low iron (ferritin).
Jim
Hi Jim, I have had several iron infusions, none seemed to affect my Afib However I’m convinced that the lack of iron ( Ferritin) was the cause of my Afib. Regards Lynne
Thanks Lynne. Did you have weekly infusions and how many? How soon after the first infusion did you start to feel better, or did you just feel the same?
Jim
Hi Jim , I had 2 iron infusions one week apart , it took me a fortnight to feel a little better as my ferritin level was very low at the time ! I was really at rock bottom as I’d had to wait nearly 8 weeks for the treatment, It took another 2 weeks to start feeling normal again !
Thanks. Do you remember what your ferritin and hemoglobin was before the infusions and then after? I also had two infusions and am on day 10.
Jim
I had one last year. No problem with afib. Just felt a bit more bouncy after it which was welcome.
I had one recently for iron deficiency anaemia with no affects to my AF. More concerned as they can’t find any cause for the rapid HB drop
Thanks. Did the single infusion make you feel better? If so, how long did it take after the infusion?
Jim
I have the same hing. The iron infusion helped. I take oral iron daily. I'm hoping they authorize another. Felt better in one week. All the testing showed no source. Sure don't want another round of testing. One Doctor told me they may never find it. Ain't technology great.
What testing did they do? Colonoscopy? Endoscopy? Anything else?
They did colonoscopy, endoscopy, small bowel series and blood work. Asked for a hematologist but was denied. I'm trying to get another iron infusion. I noticed no change in afib status. It is probably time to change doctors. So many are not accepting new patients. The pandemic changed so much in my town.
Hi Jim - I know nothing about this except that I believe a friend in Australia (without AF) has to have these infusions and she has never said anything except that they work and make her feel less tired. I see there's a study in progress on intravenous iron and AF: bmjopen.bmj.com/content/11/...
Steve
I have them on a regular basis. I dont notice any special effects,but not sure what would happen if I didnt have them.
Hi, I had a number of iron infusions a few years back. I didn't notice any change in my PAF but they did make me feel a lot better!
I’d an iron infusion before diagnosis of my permanent AFib and it was the best thing ever. 6 years on my bloods remain good. My anaemia was blamed on the steroids and inflammation of Polymyalgia rheumatica.
My last serum ferritin test returned a figure of 42 mcg/L, with a normal range given as 30-400 mcg/L.
I was concerned it was so low, but at that time I had no idea of the link with AF as shown in the article referenced by Ppiman, where one of the prerequisites for a deficiency was a ferritin level <100 mcg/L.
My GP seemed unconcerned, even expressing the opinion that she preferred it low.
So I am more confused than ever as to whether, given my PAF, I should be supplementing with ferritin, either by infusion or oral ingestion, and given it is well below the 100 mcg/L level referenced above.
What do others think? All comments welcome.
PS. My haemoglobin is midrange of normal.
probably a couple of weeks but sadly I sustained bilateral sacral fractures just after that so that floored me. Certainly would’ve given me the strength I needed to cope with it all.
Sorry about that. I'm only on day 10 and do not feel any different, but my hemoglobin is not all that low.
Jim
I was surprised the trial was for <100mcg/L when over 24 is considered normal, which you seem to be. My ferritin was 9, therefore the infusions, even though my hgb is in the 13-14 range, which is not technically anemic but a bit low for a male. The goal is to get Ferritin up to 100-150 range. I have read that low iron is good for the heart, therefore your GP's comment. In your case, I wouldn't be concerned given a normal Hgb, as long as you aren't manifesting symptons of low ferritin which are similar to anemia.
Jim
Just wanted to add to my previous post that depending on your afib situation, it could be worth a Hail Mary to bring it up over 100. I could not tolerate oral iron plus given my very low ferritin, infusions made the most sense. In my case, I didn't do it because of the afib, simply because of the very low ferritin, but lowering my afib burden would certainly be a bonus, but not expecting that.
Jim
Yes, thanks for the clarification.
If your read my Bio, you will see I have supplemented Vit D3 for my AF as it was discovered at same time as my AF, and no AF for 5-6 months now.
The link between Vitamin D and AF and reduction of inflammation seems now well established, and I can certainly verify that at the moment.
But at that same time as my AF and Vitamin D deficiency were diagnosed, I had those low serum ferritin levels, and with no assistance from my GP, I decided myself to supplement with daily Floradix. But so far I haven't had my ferritin retested to see if this has been effective. I will get it retested in the annual blood tests I have been promised in April.
And, in the light of the 100 mcg figure mentioned in the article on deficiency, and ferritins' possible link to AF, I am more keen than ever to see those upcoming ferritin results. Roll on April.
Bob
In your reply, in reference to my GP being unconcerned about my "low" ferritin level, you said you had read that "a low iron level is good for the heart", which perhaps explained my GP's apparent unconcern. Obviously you don't mean a deficiency, but a level near the bottom of the normal range, as mine was. But can you give me any pointers to where you read this information about low levels being good for the heart?
Yes, not deficiency but overload. Here's just in of many references.
healthline.com/nutrition/wh...
So it's not that low is good for the heart, rather it's that high is bad. So I'm still encouraged to try to raise my level to around 100 mcg as you suggested. My next ferritin test in April will ensure my supplementation with Floradix is not raising my level to the higher more problemmatic levels.
Another paper that supports the study using <100z A bit confusing. Maybe ask your doctor why they like low iron
No, you don’t need your ferritin to be over 100! Where does that idea come from? I have hereditary haemochromatosis (iron overload) and my therapeutic target (in line with NHS NICE guidelines) is a ferritin of 50 which is actually difficult for me to achieve, maybe I’ve been that low just once after multiple venesection treatments. But anyway … too much iron in the body = more oxidative stress. Why do you think people should have lots of “antioxidants” in their diet? Excess iron will be deposited in the liver, heart and pancreas = not good. Whatever you do, don’t get your health info from internet gym bros extolling the virtues of “carnivore” diets! It’s all macho BS! (But I know you’re a smart guy, you’re not stupid 😉) But seriously, all this BS about lectins, and phytates, and so called “anti nutrients”… as an iron overloader I say bring ‘em on. And yet my iron levels still increase so I’m not convinced. If I hear any of that I take no heed of it. But seriously, you just need to be on the lower end of the normal range, keep an eye on your blood test results and adjust your diet if you see a downward trend rather than supplement.
The idea came from this trial posted earlier in the thread:
bmjopen.bmj.com/content/11/...
I have also seen Ferr> 100 as desirable elsewhere such as here:
frontiersin.org/articles/10...
My hemotologist also told me that my Ferritin goal should be 100-150. It is now 9.
That's why I'm taking iron infusions.
Jim
I've only just seen this reply of yours to Autumn_Leaves, and it answers the queries I directed (earlier) to Autumn_Leaves below.
And thanks for that particularly relevant new article on iron deficiency.
Thanks again for your help in this matter. Keep up the good work.
Well, 9 is very low and needs to be addressed. The treatment targets for iron deficiency and iron overload are going to differ because of the characteristics of those two distinct patient groups. Im pretty sure if we saw the same consultant we’d still have different target levels because let’s face it, I’m highly unlikely to become anaemic and you don’t look like your at any risk of iron overload. Too low or too high isn’t good.
By "two different patient groups" are you referring to those with and without haemochromatosis? If so, I agree, however that was not what this discussion was about, nor what the two papers posted were concerned with when defining low ferritin as <100, which my hematologist would like to see me at as a minimum but preferably at 150. I also agree that it's not a black and white subject.
Jim
Thanks for extra link. Asking my GP would be the obvious thing to do, but these days that's a hope too far, as is a face-to-face appointment. I haven't read the latest link, but will do (I've downloaded it), as the 100 level does seem to be a minimum in these trials/findings.
I will pursue it further, as my low 42 still doesn't feel right.
You’re grand. 42 is fine.
Thanks for your input re this matter.
Did you read the trial referenced above where below 100 mcg/L is one of the criteria for a deficiency?
I did already acknowledge that high is bad, and low is good as a generalisation, but am still curious, when the NHS normal range is 30-400, as to why my level of 42, well below 100, is not considered noteworthy by either my GP or yourself.
I understand your point of view about high levels, presumably based on your experience of haemochromatosis, but is your eager acceptance of 42 based on any research you can point me towards?
Remember, mjames1's haematologist advised him to achieve 100-150 mcg/L. So that's even more confusing for me!
Iron metabolism is rather complex and being honest here, we are probably a long way off from being experts in iron metabolism. We’re just patients bumbling along trying to do the best for ourselves.
The key feature of the two studies above are that both patient groups had clinical iron deficiency at baseline. It’s feasible that clinical iron deficiency will put someone at a disadvantage compared to a similar group with normal iron. The question is, should the treatment targets for people with clinical iron deficiency apply to populations who aren’t deficient?
As this is an AF forum, people are probably interested in is whether those who are not clinically deficient should supplement or increase their intake of iron-rich foods with the goal of a ferritin level of 100 in the hope it will reduce their AF or stop it progressing.
As for UK NHS guidelines, I can’t answer why their ranges are set where they are, but here’s a link to a very long document that discusses many,many aspects of iron and health
assets.publishing.service.g...
But… it’s a very long read indeed. But here’s an interesting quote
“low serum ferritin concentrations indicate low iron depots in tissues but they do not necessarily represent a functional deficiency of iron. It is not clear at which level above or below the reference range for serum ferritin there is an increased risk of an adverse outcome. Similarly, the thresholds used to define anaemia do not correspond to concentrations of haemoglobin below which functional consequences of anaemia occur.”
Be prepared for a lot of nuance in that document because much of the evidence is inconclusive or weak for many associations between iron and specific health outcomes.
However… it’s obvious that that too much or too little iron puts our health at a disadvantage. I’m sticking with the treatment guidelines for haemochromatosis.
Just to add, there are studies on haemochromatosis and cardiac conditions including cardiomyopathy and arrhythmias, but there is no specific and conclusive ferritin level that prevents or reverses any of it. It’s more of a case of reducing and maintaining a ferritin level of <50 to minimise or reduce risks, not just cardiac but liver conditions and damage to other organs. But you’re asking a question that probably can’t be realistically answered ie is a person with normal iron at the lower end of the range at greater risk of their AF progressing? All I know is that higher iron levels didn’t do me any favours when it came to developing AF but we’re also individuals with different genetics, different metabolisms, different genders, different lifetime exposure to sunlight etc, so we really can’t conclude anything with any degree of certainty.
Just briefly, apparently the reason the ferritin thresholds are so different in the study, is because in certain populations -- heart failure for example -- Ferritn levels can be falsely elevated because of inflammation and therefore the target levels are much higher and therefore why the study uses these high levels for enrollment. So these higher levels as desirable may not apply to you and I. On a personal note, my Ferritin was 9 with hemoglobin in the 13's. After three iron transfusions Ferritin is now 130 with hemoglobin in the 14's. I have one more infusion scheduled which should put my Ferritin in the 150-160 range. Then I retest in six weeks to see if the level holds or if I need further testing.
Jim
Thanks for the update and the numbers. I was aware of the reason for the use of the higher figures because of inflammation, but while not having heart failure, I was assuming having AF puts me into a raised inflammation situation, and hence appropriate for my possibly inflammation raised level of 42 nmol/L being considered an effective deficiency and relevant for the trial. Although I could be wrong about AF and inflammation.
Related to this, I credit vitamin D and it's inflammation reducing effects for my current 6 months free of AF ( after previous monthly events). I am soon to be retested for my ferritin level, and it will be interesting to see if 6 months of daily Floradix supplementation has had any significant effect on my ferrtin level. I will keep you updated.
Re haemoglobin, I have read your previous and current mentions of your level, but I am unfamiliar with the units you are using in USA.
My blood test returned an estimated haemoglobin of 157 g/L (normal 150-170). Is it just a matter of a decimal point? so in your units I would be 15.7?
So the search for understanding continues.
Thanks again,
Bob
Interesting thought about inflamation for many of us with afib and therefore perhaps we need higher ferritin levels. It certainly can't hurt raising yours up to the 100-150 range. I will have to revisit vitamin D. Apparently some are sour on it now due to recent studies but medical opinions sometimes change with the wind. Looks like it's a decimal point thing. 15.7 is a good hemoglobin level. I'm now low 14's and would like to get into the 15's, but I think some of it is genetic as my hemoglobin has often been lower than 15 even before afib.
Jim
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