Posted , 178 users are following.
Hi I really need some help.
I had an iron infusion on the 22nd of March and since Thursday im feeling so bad: full of nausea, dizziness, headache and almost fainting.
Is it normal?
i think i have to go to hospital..
6 likes, 518 replies
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anna92475 any30878
Posted
hi there,
It has been a week since mine (2 ampoules Ferinject) and I am still feeling awful. Stitches in my chest, dizzy, weak, extremely tired, nauseous, headache. went to the ER Monday and phosphate levels had indeed dropped below minimum. Got 6 phosphate tablets and told to sit it out and rest... just not getting any better. Been trying to eat phosphate rich food and drinks but I am just not hungry. I used to exercise every day and now I pretty much feel bedridden and unable to think straight or go to work. I will never have them done again... my iron wasnt even that low so tablets would probably have been fine. any advice on how to speed up recovery ? all the best, Anna
shay13182 anna92475
Posted
hello, how long did it take for you to feel better? I hope you are feeling much better now.
joanne91451 any30878
Edited
I'm now 6 weeks post-infusion (1600mg Monofer) and am only finally starting to feel 'normal' but still have daily headaches and nausea. Got phosphate tested a few weeks ago by GP who my concerns seriously and was just into the low end of normal so I reckon it had been lower when my symptoms had been a lot worse. Week 2-3 post infusion were the worst for me, particularly the mood swings. I had to take diazepam and beta blockers just to get through the day!
One odd thing that has happened which I assume is connected with the kidneys/phosphate thing is that every maybe 7-10 days for about 4 hours I have had an incredible thirst and drank between 2-4L within that time as well as the usual water I drink the rest of the day. Very very bizarre!
Hoping that things are correcting themselves and the iron is actually starting to work now. I will never have an infusion again especially not one that cost me the best part of £1000.
joanne91451 any30878
Edited
I'm now 8 weeks post infusion and still struggling with nausea and headaches daily plus excessive thirst every now and then. Seems to come in waves. Heart palpitations and anxiety eased after first few weeks at least.
I 'think' my energy levels were improving a tiny bit (maybe 5-10%) however a month long virus (chest infection and tonsilitis) has left me weak and now stress and anxiety from this pandemic mean I am stuck in bed with exhaustion. Sort of wonder if I have had a mild dose of cv19....
Due to have my bloods taken to check ferritin levels etc. but not sure they will see me just now as it isn't urgent. I really wish I had never got an infusion now. I was never super duper low and it has not been the miracle I had hoped for!
How is everyone else doing?
rebecca29501 joanne91451
Posted
Terrible 😦 i'm 9 weeks post ferrinject infusion. I had the most hideous first 4 weeks feeling sooo sick and heart rate all over the place, dizzy, pains, chest tightness, headache, the most bizarre feeling in my brain, leg weakness etc etc They picked up i had hypophosphatemia - had 5 phosphate tablets, got tested 24hrs later my level had gone from 0.43 to 1.23, 10 days later it was 0.86 - have had a good 2-3 weeks feeling 70-80% better YAY! however... Last week i started to get ALL my symptoms back - firstly i noticed my legs, then just got sicker n sicker. This is a nightmare. I feel like i should of been on a maintenance dose of phosphate? does anyone know about this? considering my ferritin level is still so high wont this hypophosphatemia persist? anyways another ambulance called after my heart rate shot to 160 n i was about to pass out. ive taken some phosphate n hoping that'll help. Ive felt a bit better last couple of days after this but still so dizzy with chest tightness. This iron infusion has totally messed my body up :...(
chantelle88647 rebecca29501
Posted
hi rebecca, have you read all the threads in this board? There is a consistent problem that treating low phosphate with phosphate causes your kidneys to get of phosphate more, called a negative feedback loop. im 9 weeks post also my levels went up to 0.8 after being prescribed a drug to increase calcium levels as infusion also caused this to drop. my levels are slightly low again so they have increased dose. My specialist said this could go on for months but i dont feel like i did the first few weeks like you described. Everything you had i had also worst experience ever! just wanted to let you know why your symptoms may have returned.
rebecca29501 chantelle88647
Posted
thanks chantelle,
can i ask what type of specialist are you seeing? my gp is pretty useless and i'm at my wits end - i keep telling her that i think its dropping again and that's why my symptoms are back. I had blood test on saturday n it was 0.8 but i had 2 phosphate tablets a day prior to test so i reckon it was low before that but all she sees is that im back to 0.8 and its within 'normal' range despite it being 1.28 before the iron infusion. i mentioned calcitriol as i know people have tried that - my vitamin d was low also but not drastic. At 4 weeks when i had the 0.43 low phosphate my calcium was low too. apparently its now ok. Would you mind telling me your exact treatment - what drug was it? i just don't know what to do when i feel like doctor is not listening to me and i feel like death round 2! 😦
chantelle88647 rebecca29501
Edited
hi rebecca, yes GPs have no clue im under the care of an endocrinologist and on calcitriol. i think if you get on that for a few
months it should stabalise the phosphate but as i said iv been on it six weeks and my levels have dipped so there no quick fix just months and month of monitoring the blood tests that i have every two weeks and dosages increased. im so used to feeling like crap i cant even imagine how it will feel to be "normal" again!
rebecca29501 chantelle88647
Posted
thanks chantelle,
my gp literally gave me 5 tablets of phosphate in 24 hours and that's it. Blood test at that point and then another blood test one week later. After this second round of symptoms i spoke to her last friday and i was soooo sick - she told me not to take any phosphate. I'm really mad with her - i was prob the sickest ive ever been that weekend. i had to beg her on monday to get back on it and she said i could only take 2-3 tablets thats it. ive taken more than that and im feeling way more normal. Obviously i need proper management though so im gonna get a referral to see an endocronologist! thanks for your advice 😃
megan17636 any30878
Edited
i am also taking Ativan and Nexium at the moment, and going to have phosphate level checked again today, so hopefully I am on track, I have been tested for so many things , and nothing else shows as being untoward, so just have to hope i improve soon I suppose. So glad i found this forum as know Dr's understand how i am feeling.
megan17636 any30878
Posted
I would really like to hear more about your story, I am close to 9 weeks now post infusion , and stomach is awful, find to hard to digest so many foods, and have lots of gas. I am taking nexium but not even sure if its helping. I am desperate to feel well again, but feel like I have made little progress.
shay13182 any30878
Edited
hello,
I had my iron infusion 6 weeks ago, and have had 6 weeks from hell, and only now am i starting to see some improvement in my symptoms.
Are you able to tell me how long it took for you to feel better?
anna92475 shay13182
Posted
about 2 months at least!
shay13182 anna92475
Posted
did your symptoms start going gradually or did they all go at once?
did you have lots of anxiety with it?
bec86991 shay13182
Edited
I had anxiety like i have never had it before! I was was convinced i was dying. It was awful. The worst time of my life. it took me around 2 months to get back to normal and it didn't happen right way, it happened over time slowly.
hang in there. There is light at the end of it. I was so thankful for this thread. it gave me hope.
shay13182 bec86991
Posted
thank you. I hope the anxiety does begin to ease because its been so hard to control along with all the other symptoms. You have given me hope as I'm now in week 7 and have started noticing some improvement, so I hope by next week I begin to see the light.
rebecca29501 shay13182
Posted
It takes a long time unfortunately 😦 all i can say is you're not going crazy and keep pushing the doctors.... My early GP completely mismanaged my case and i got very sick for a second time because i wasn't given any sort of phosphate maintenance dose. I had my infusion end of january - whilst im much better than i was im still having some symptoms. Im seeing an endocrinoligist and on 2 phosphate tablets a day - phosphate has improved but now have low calcium again. Its been an utterly horrible experience...but there's light at the end of tunnel (with the right treatment!) i hope you continue to feel better. i found talking on this message board so helpful because my anxiety was sky high n it felt like no one understood except for on here and the people who had been through this iron infusion debacle!
anna92475 shay13182
Posted
To be honest I was so anxious I went to the ER twice. I had a phosphate shortage and could not work or exercise for weeks. I started taking in a phosphate rich diet, Calcium and vitamin D supplements as well as Turmeric to remove excess Iron. My symptoms gradually got overtaken by my COVID stress due to a close case of severe COVID in my family (8 weeks ICU), so I kind of forgot about the iron altogether which ironically helped with thise symptoms. After 2+ months I went for a run again. The headaches, fatigues, nausea and dizzyness slowly faded away from around 6 weeks... Hang in there! I will never take iron infusions again, it feels like poison in your body ....
shay13182 anna92475
Posted
thanks for this. I have been trying to request a phosphate test and have been told there is no reason to check it. But as you mentioned that supplements that help to increase it, I will incorporate these in my diet. Did you have any heart fluttering or a racing heart - I havent seen many people post about this side effect, mine is settling now but am interested to see if anyone else had any heart symptoms.
rebecca29501 shay13182
Posted
i had lots of heart symptoms! had to call the ambulance 3 times... heart fluttering and skyrocketing and nearly passing out.. def get your phosphate checked.. they didnt discover my hypophosphatemia until 4 weeks in.. calcium was also low... the iron infusion causes this to happen particularly Ferinject.
anna92475 shay13182
Posted
No racing heartrate, but a much higher heartrate when I did moderate moving such as getting up from the couch to get something from the fridge. it went up to like 130. Strange as I used to do boxing 3 times a week...
shay13182 anna92475
Posted
thats the same with me, I am used to running 5k every other day and now I cant walk far. did you get your phosphate checked?
shay13182 rebecca29501
Posted
what was the treatment that you had for the low phosphate as I have heard taking vitimin D is often the solution. I have asked my GP several times to check this but have been told that they have no reason to check my phosphate level, as it was a normal level before the iron infusion. Im not sure if I should get it tested elsewhere?
rebecca29501 shay13182
Posted
yes do... gps dont know much about it but it's a complication with iron infusions. i would show them some research - there's some case studies on web. i'm being treated with phosphate tablets but from everything i've read i think i should be on calcitriol (vit d) which im also low in... also get your calcium and vit d checked as they all relate. I speak to the specialist on friday so will see what he says... but i definitely have improved taking phosphate everyday... saying that i'm 3 and half months post infusion so hopefully this nasty iron infusion is getting out of my system with all the blood tests ive had to have lols
shay13182 rebecca29501
Posted
what phosphate tablets are you on? I'm going to try and get my bloods done elsewhere and see what my phosphate level is, as im in week 7 from the infusion i hope they will be able to pick this up.
rebecca29501 shay13182
Posted
i'm taking Phosphate Phebra effervescent tablets 500mg... and i'm taking some extra vitamin d too