Feeling awful 10 days after Iron Infusion. Is it normal?

do you ever experience vertigo/dizziness? or an increased heart rate?

I did! It was bad. I had 2 infusions 1 week apart and I felt so bad after the first one, I tried to get out of the second one. They checked my iron levels and they were improving, so I sucked it up and did it. I felt much worse for a few weeks. My last infusion was on February 21st. I was dizzy, nauseated, had an increased heart rate and generally felt awful. Then around the week of March 16th I got really sick. Nauseated and vomiting etc. I couldn't keep food down. It coincided with the beginning of the quarantine so it is possible it was anxiety related, but I won't ever really know. I slowly recovered and now I feel great! I am exercising regularly (like I have never been able to before). I have energy and generally feel good. I did not go back to check my iron because I live with an immunocompromised person and I didn't want to risk exposure to the virus. The only issue now is the bill. Each iron infusion cost $11,000! I don't know yet what my insurance will cover, but I was honestly quite shocked at the price. The infusions took 20 minutes and aside from putting in the IV and taking it out, no one even spoke to me the entire time. Cost aside, I feel great and I'm glad I did it. But it was NOT easy. I do not feel that the doctor prepared me for the side effects and the length of time it would take to recover. Good luck and take care!

thats great news! im glad to hear you are feeling much better.

did you ever get your phosphate level checked? and how many weeks did it take you to start feeling good?

Hi Megan,

Did you wait for your symptoms to go on their own or did you get your phosphate level checked and have treatment?

what phosphate did you take and how long did you take it for? I'm happy to hear you are feeling much better, its so unfortunate they do not explain potential side effects before giving the iron infusion.

My Vitamin D level was the only thing still quite low at my last blood tests a few weeks ago, so I am taking a daily supplement. But yes if you haven't had blood tests definetly have phosphate, calcium and Vitamin D checked. I had a phosphate infusion in hospital which didn't work as need the active Vitamin D for absorption. If your GP is no help you should see an Endocronologist.

my ferritin level was 528 when I had it tested around 3 weeks ago, which is double of what it is meant to be, but an Iron specialist I spoke to said that it will naturally level itself and come back in to normal range. I'm having such difficulty getting my GP to do phosphate test, so I may go private to do the blood test and get a prescription for the phosphate, and hopefully it will help with the weakness I have been experiencing because I haven't been able to carry out normal daily activities.

i think everyone is a bit different but i'm afraid the dizziness and weird head turns, heart flutters and chest tightness have only for me started to go and im nearly 4 months post infusion. When they first picked up my hypophosphatemia and low calcium i was given some phosphate tablets but only told to take 5. I did start to improve and had couple of weeks where those symptoms were less. Then a few weeks on from that i got incredibly sick again... and ended back in ambulance. I sacked my GP got another doctor who put me onto specialist and after consistently taking phosphate those symptoms have mostly gone. I have a few bad days still but im much improved thank god... It's a journey and I feel for anyone who's been through this... i really hope you get better quickly and get a doctor willing to listen x

Anyone new to this awful experience please read every single post. I had mine in January and only started feeling half decent in April now i feel alot better but my specialists still has me on meds indefinitely. Anyone who is going through this in those first few weeks please do everything you can to get under the care of an endocrinoligists GPs are downright negligent when in comes to this. People in ICU who are ventilated die from having low phosphate levels, it is an essential mineral for our brain, heart and kidneys. I am so furious this is still occuring around the world their needs to be a protocol regarding post iron infusion hypophospatemia. Please everyone keep using this board you will get through this we are here to help you.

Agree 100%... i'm definitely in the angry phase and can't believe they are dishing out these iron infusions to everyone like its nothing. i think it's absolute poison and the company should be sued. It's been an utterly awful experience. i spoke to my endocrinologist today and he said a lot of mine was from being grossly under dosed by my gp at the start. i had to fight my gp every step of the way - she left me so sick and no where to go and refused to let me take anymore phosphate than 5 initial tablets. So poorly mismanaged. i too am on phosphate for at least another 3 months... but thankfully feeling much better than the first 2-3 months!

I am also furious! The nurse from the clinic acted like it was nothing, and practically laughed at my when I mentioned the word 'hypophosphatemia'. I have been trying not to google too much, but honestly, if I hadn't googled then I wouldn't have discovered my low phosphate levels and I'd be feeling even worse than I do now!

Why on earth is this reaction not taken more seriously by the people administering the drug? Is it truly that rare?

Hi Chantelle, I'm stuck 15 days post infusion bouncing between GP appointments and blood tests showing dropping phosphate levels, it's back down to 0.5... I asked if I could see an endocrinologist a few days ago but GP insisted on another blood test to see how phosphate is tracking. I feel vulnerable and like I'm falling through cracks (as the ED department doesn't care about low phosphate)...can I get your advice about what to do? It seems like you're coming out the other end of things and have a good handle on how it all works...

Hi Katy, sorry you are going through this also. I have no idea what your GP think they are going to achieve by doing more bloods with no treatment!! That is low by 0.3 i couldnt feel my face was so scary. If they refuse to an endocrinolgists start calling and researching in your area the offices that might be willing to see you. GPs ego is all they care about they have no clue what to do and dont want to be proved wrong. you need to push and fight to get into a specialist who has treated people for this before and then they can manage your treatment. i just got a phone call from my endo saying finally after six months i can come off the Calcitriol but wants me to do more bloods in a month until he feels he can hand me back over to my GP. He thank god knows how serious this is. Which country are you from?

Thanks so much Chantelle. In fairness I was treated with phosphate phebra tablets which did bring my levels up to 1.17 (pre-infusion level) within five days, but since then it has dropped back to 0.50.

I'm in New Zealand, I think I read in another message that you're in Sydney? Do you think most endocrinologists will understand this issue properly? It seems very rare and not well understood?

Waiting to hear back from the GP office as have requested referral. I'm guessing they'll say it'll take a week or two to see someone. Did you have to fight to see someone urgently? Should I be fighting to see someone before the weekend? ( Low phosphate seems very urgent to me but I literally got ignored at the ED so it doesn't seem like anyone else thinks it's very urgent!)

I wish all this didn't have to feel like such a fight 😦

the reason your levels have dropped so low is because unfourtunatley treating low phosphate with actual phosphate causes a negative feedback loop in your kidneys which means your body is excreting the phosphate at a faster rate than what it is being replaced with the tablets. This doesnt happen to everyone but sounds like you had the same thing happen as me. They put me on the phosphate and within five days my levels were even worse. A good endocrinologist should know about this condition an act accordingly. Your levels will go back to normal eventually its more if you are showing the symptoms which usually occur when you are below 0.8. Let me get my kids off to school then i will post the only two research articles i managed to find in the

world which explains this. Our ED has its own endocrinology unit so i had to go to emergency three or four times in two days and then they sent me as an outpatient to that unit. Then my specialist took over. But yeah my original GP told me to see a psycologist when i couldnt feel my face or arms. Five days later the specialsits called me with my results and told me to get into an ambulance straight away. The nurse at the infusion clinic told me its a one in one million side effect and because its so rare they dont warn patients about the potential dangers. So thats the only good thing you are literally one in a million! Will post later today

Thanks so much for this Chantelle. I'll pm you.