adverse reaction to iron infusion

[HornM]

Hi there helpful people

I got an iron infusion (ferinject) 2.5 weeks ago and experienced a pretty severe adverse reaction. I was bed ridden for a week with extreme nausea, weakness, aches, numbness and tingling, flank pain. The more severe symptoms dissipated and I've since been especially fatigued and weak (even more than I was before the infusion, despite being iron deficient and fatigued and weak already).

My GP ordered various tests while I was very ill and it was confirmed that my kidney function is fine. Inflammatory markers (CRP and ESR) have elevated for the first time in my hashis/chronic health journey (13 and 26; ranges are 0-5 and 1-20 respectively). And my phosphate is now deficient (.35), also for the first time in my hashis/chronic health journey (range is .7 - 1.5).

I've had blood taken today so will understand over coming days if my iron levels have benefited from the infusion or not.

I am wondering if anyone has had an experience like this. Do I take a phosphate supplement to recover my levels? I've read a little bit about hypophosphatemia as a possible side effect of iron infusions.

Any info will be appreciated.

Warm thanks

[RoboTh]

Hi I've had two ferrinject infusions as can't tolerate oral iron (nausea etc) after my first infusion I was in bed for a week maybe 5 days with severe nausea& tiredness. No vomiting. Didn't Inform anyone of the side effects as I just assumed my body doesn't like iron. Then I was fine. Then at the 6 week post infusion point I felt literally 10yrs younger and felt an iron "high" or rush. It was incredible. Obviously it plateaud. I start to go downhill at about 9 months get re refered for another infusion at 12 months. The second infusion I made sure I had anti emetic meds prescribed domperidone. Which helped enormously. I only felt sick for a day or 2. No where near as bad as first time. I'm hoping to tolerate the next one. They are well worth the intial side effects. I feel like I have absolutely zero energy or zest for life at the moment and counting down the days for the next infusion. I hope this helps

[HornM in reply to RoboTh]

Ok, this is reassuring, thank you. Im hearing I should be patient and allow some time to pass. Great tho that things got better for you with the anti-nausea! I'll bear in mind for future. At this stage I can't imagine putting my body through this again.. but I guess we gotta do what works, hey.

[Pastelart]

I had a bad reaction to the iron infusion as well, felt as if I had really nasty flu and the glands in my neck were so swollen that whenever I bent my head It made me nauseous. I had swollen glands for months. I thought that maybe a litre of iron administered too quickly might have been the problem. Depletion of phosphates is a known side effect, which I didn’t have.

[HornM in reply to Pastelart]

Sounds awful. Did you feel the benefit of the iron at some point? Will you do it again?Yes, I'm seeing that depletion of phosphates is a thing and I'm wondering whether I should supplement to recover levels, or if they recover naturally..

[Pastelart in reply to HornM]

I would have another iron infusion, but would ask for it to be given in 2 doses. Yes, speak to your doctor about your phosphate levels. They probably haven’t read the contraindications, so won’t have a clue!

[HornM in reply to Pastelart]

This is my concern, that they'll know very little about how to handle it, hence my raising it with you lovely folk. But yes, I'll raise it and see where it gets me.

[Serendipitious]

I had an iron infusion a few years ago. I ended up getting what could be described as bad cold symptoms.

The thing is iron is vital for us but it also an essential nutrient for pathogens/bacteria, so that can explain why some people feel poorly after an infusion.

ncbi.nlm.nih.gov/pmc/articl...

We're not designed to receive huge amounts of iron and it's impossible to receive that much in one go through dietary means. Iron supplementation is a controversial topic. Dietary iron is absolutely essential but there are reasons for why it drops too low (or rises too high) in some individuals, the reasons aren't always favourable ones.

[HornM in reply to Serendipitious]

Right, that's an interesting point, thanks for the info. Flu like symptoms make sense if pathogens are feeding. I wonder if iron infusions lead to increased thyroid antibodies?

[Serendipitious in reply to HornM]

HornM,

Personally I’m not aware of a direct link. Might be something to research.

However iron is vital for thyroid hormone synthesis. The body prefers dietary and haem iron.

[HornM in reply to Serendipitious]

Yes, absolutely essential. I'm really hoping things improve with my hypo symptoms once my iron levels are up. At the very least will be good to eliminate iron related fatigue.

[Pastelart in reply to HornM]

I suspect that my hypothyroidism was caused by my low iron.

[HornM in reply to Pastelart]

Mm that's interesting. My iron deficiency came after my hashis diagnosis. Is your iron restored now, after your infusion? Have you found improvement with hypo symptoms?

[Serendipitious in reply to HornM]

I didn’t do enough to maintain them so I was back to square one very soon. Something to be mindful of.

[HornM in reply to Serendipitious]

Didn't do enough to maintain them? How does one maintain them?

[Serendipitious in reply to HornM]

I eat organic chicken liver once a week or take grass fed beef liver capsules. Be mindful not to have too much due to its high Vitamin A content.

I suspect they must be low again as my hands and feet are cold but I’m awaiting test results to confirm first. I always test never guess.

[HornM in reply to Serendipitious]

Yes, liver, I hear this a bit. Ok thanks for letting me know.

[Serendipitious in reply to HornM]

Eating liver has a whole host of health benefits. Haem iron is also more bio available.

[Pastelart in reply to Serendipitious]

Gosh, I read the link on iron, but a bit over my head, to be honest. My brother has too much iron. Opposite problem to me.

[Serendipitious in reply to Pastelart]

Yes that’s not a great situation to be in. Giving blood can help.

[Roadrunnergreg]

Odds are your deficient in one of the cofactor nutrienets required for iron absorption like vitamin c, B2 etc it's often the cause of feeling rough with vitamin /mineral supplementaion. just the same with vitamin d3 supplementation if folks feel rough they are likely magnesium deficient... hope that helps

[HornM in reply to Roadrunnergreg]

Right, I haven't heard that, thanks. I'm aware of vitamin c assisting absorption and currently supplement. I didn't know b2 was relevant.. and you say etc. - do you have a reference for which vits are important? (It's not obvious when I google it)

[Roadrunnergreg in reply to HornM]

may be better on duck duck go with nutrition, google isnt much good nowadays as it's favouring big pharma just search nutrients needed or required for iron absorption. it's what i do, knowing the cofactors can be a game changer

[HornM in reply to Roadrunnergreg]

Ok thanks ill have a look