Feeling awful 10 days after Iron Infusion. Is it normal?
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Notes on Feeling awful 10 days after Iron Infusion. Is it normal?
katy_80 any30878
Edited
Hey everyone,
Just wanted to check in to see if anyone is feeling any better, and if their phosphate levels stabilised by not continuing to take oral phosphate after initial doses? Just got my blood test results back and my phosphate is back down to .70:(
shay13182 katy_80
Posted
I had the iron infusion 2 and a half months ago and I am still having side effects but they are getting milder. phosphate normally recovers by itself after 12 weeks, I took a vitamin D supplement and had lots of calcium in my diet and that kept my phosphate level normal.
katy_80 shay13182
Edited
Thanks Shay - so sorry to hear you still have effects but good they're lessening.
I'm worried that if I don't take more phosphate tablets my levels will drop to a really low level again, it's only two weeks since my infusion though - how often did you get blood tests to make sure your levels weren't too low?
Also - do you know why phosphate levels keep trying to drop in the weeks post infusion? Is it because of all the extra iron still in our systems from the infusions?
shay13182 katy_80
Edited
I had a blood test every 3 weeks to monitor the phosphate but also the full blood count to check iron level as mine was quite high. If you had Ferinject iron, a common side effect is for it to reduce your phosphate level. I contacted an Iron specialist who recommended me to take Vit D supplement and Increase Calcium in diet as they help with the production of phosphate.
chantelle88647 any30878
Posted
do you mind finding me in messenger via facebook? just easier to communicate
Chantelle Cavlovic
katy_80 chantelle88647
Posted
Thanks Chantelle. Just messaged you in messenger, not sure if it will come through as 'other' or straight through to your inbox. Cheers, Katy
zq93633 chantelle88647
Posted
Hi chantelle, How have you been feeling recenly? i have come across your post and going though the exact same thing you have and phosphate supplements are not working.
katy_80 any30878
Posted
Hey everyone,
Hoping you're doing okay. I'm one month post infusion and still feeling rubbish, though marginally better as of last week - on phosphate tablets and have seen an endocrinologist once, who will hopefully figure out what to do (have told him about the research, calcitriol etc).
Just wondering if anyone got investigated for iron overload? I note that some of the symptoms also overlap with the hypophosphatemia. Any questions I've raised early on with doctors have just been dismissed (after I was alarmed seeing my ferritin level was 800. They assured me this would settle and was too early to tell). But I think I'm going to ask my endocrinologist to investigate this as I just feel so dreadful.
Any thoughts please share....
shay13182 katy_80
Posted
Hi katy,
I had high Iron after the infusion which has gradually come down in 3 months. I have felt awful, but as the iron level has come down my symptoms have improved.
I researched and started taking tummeric daily as its good for iron chelation, and it worked wonderfully in brining the iron down.
I hope this helps. Sending lots of well wishes you way.
joanne91451 any30878
Posted
hey guys.
I'm almost 6 months post infusion but still not 100%. It's driving me crazy!
Ferritin has come down from around 390 to 197 just in the last month which is odd. Phosphate is 0.99. It was 0.85 three weeks post infusion so low end of 'normal' but i still had/have a lot of the symptoms you guys do. At my wits end!
The physical symptoms i can handle but the anxiety is terrible. Not that lockdown has helped.
mari_mari1000 joanne91451
Posted
Hi Joanne, I'm so sorry you have been unwell and dont feel better after your infusion. You have experienced anxiety after your infusion?
Its been 3 weeks since mine and i have had the worst anxiety.
My GP is on leave so i dont even know how to talk to. the moment you mention anxiety they kind of dismiss you.
Are you feeling better now?
ani10101 joanne91451
Posted
Hi Joanne,
Can you tell what was your ferritin level in a month after infusion? How it dropped down with time? Do you take any medicine to help your liver? Have you tried phlebotomy?
I am in the same boat, I have iron overloaded, anxiety, pain in my body. I can't sleep...
My ferritin level in 7 days after infusion is 1700! I don't know what to do...
tess58684 ani10101
Posted
Hi Ani,
How are you feeling now? My infusion (ferinject) was 23 days ago and my ferritin is now around 500. Do you know what your ferritin level is now (I guess we had the infusion at about the same time). Also, did you check your phosphate levels? Mine was really low and is causing lots of symptoms.
mary6760 joanne91451
Posted
Hi,I am 3 months post infusion and I am pretty much bedridden.My ferritin in the beginning was 1239. Oct.1st it was 704.I am hoping and praying that I will start to feel normal again soon!
cat03134 any30878
Edited
hi. I can not believe the experiences that people have had after iron infusion. I didn't give too much thought to having it done yesterday as my iron stores were low and my gut health is not great so I thought this would be the quicker and more effective option. I thought iron was a totally harmless element and gave no thought to dangers other than those of anaphylaxis which didnt happen for me. however 31 hrs on I was lying down relaxing and found myself struggling for breath. no pain or tightness but conscious of every breath and each being uncomfortable and like I may not be able to catch the next one. i also felt really shakey. got hubby to call healthline and the nurse went through things like how many breaths I was taking per minute, my health history etc. she was reassuring and said it was unlikely that a new reaction would surface after 24 hours. however lots of you have had them. I guess it could be a panic attack but I don't for a second doubt that its connected with the feroinject infusion as this came out of the blue. I'm normally fit and healthy although have had anxiety before. there was nothing troubling me at all tonight and this came out of nowhere. crazy stuff. it has now settled once again but of course I'm on the look out as it was a really disturbing and scary experience. I almost called the ambulance at 1 point. I appreciate you all sharing on here as if you didnt then I would have felt alone on this. I don't believe all our experiences are coincidence, and hope that you have now all recovered. xx
katy_80 cat03134
Posted
Hi Cat, sorry to hear you're going through this - it's really important that you go to your doctor and get them to check your phosphate levels. You may have experienced a phosphate drop like a lot of us have after the infusion. Make sure you read through all the posts on this board, especially from the last 6 or 7 months - and print off any information you can to take to GP. This side effect is not yet well known among doctors! All the best and keep coming on here if you need to!
katy_80 cat03134
Posted
ps. The A&E doctor I saw here in NZ four days after my infusion only did the blood test for phosphate because I had taken in a printout - this reaction is literally just not known about widely enough by medical professionals.
If you google "Symptomatic hypophosphataemia after intravenous iron therapy: an underrated adverse reaction" there is a link there to a case study regarding the phosphate drop post-Ferinject. Also google "Severe hypophosphataemia after intravenous iron administration" and a BMJ case report comes up. (The message board won't let me post the links.). If you take these printouts in, it may just help convince them to test your phosphate in case they try to refuse for any reason (which seems to have happened to some other people on this board). Good luck - let us know!