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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BA44810 any30878
Posted
Hi, me again. Since my last post I've spent 2 weeks in hospital. I've had severely low phosphate. Still have it but at home now and I'm not taking anymore treatment as it is not working.
There is so much conflicting advice on how to treat this but it seems that phosphate infusions/oral supplements are not the way forward as they make the body get rid of more phosphate.
My symptoms were so severe that I couldn't stand or breathe properly. If this is you then I urge you to get your phosphate level checked. Having said that, even if it is low, getting replacement may not be the best way forward-unless you are desperately unwell. Don't let doctors tell you they know how to treat this as there is no general agreement on how to treat it.
Best of luck everyone
andrew28896 BA44810
Posted
sorry to hear what has happened.
when you say treatment isnt working, what do you mean?. what have they tried?.
thank you.
BA44810 andrew28896
Posted
It appears that ferrinject (iron infusion) causes the upregulation of FGF23 - this in turns causes the kidney to pump out far too much phosphate. Level should be around 5% or lower and at its peak, my kidney was working at 110%. Phosphate IV infusion and oral supplementation have been shown to upregulate the FGF23 activity further meaning it will make the kidney pump out even more phosphate.
So my week of infusions and oral supplementation have only made the situation worse.
andy76456 any30878
Posted
Hi everyone, I am 31 weeks pregnant and 5 days ago I had an iron infusion(1000mg in 15 min). My hemoglobin was 9.7 but my iron wasn't tested. I was feeling really good previous to this iv. Next day after the infusion I woke up with a rash all over my abdomen. My ob prescribed me an antihistaminic. Before I even took it, I had to leave work because I was incredibly weak and tired. Went home, spend all day in bed cause nausea started and also the pain in muscles ans joints. Next day my rash became horrible and scary, looked like leprosy, it appeared on my ring finger as well, which became numb. Pain in top of my stomac and in my upper back and feeling so full I couldn't even breathe. I slept on an off that day until I confused my heart pounding with an actual earthquake. I was sure I was dying and didn't even had the force or urge to call anyone. After some time I felt my heart rate calming and remembered I had a mini baby doppler on my nightstand. I checked my heart rate, it was 120, still high but I wasnt' feeling it so crazy strong anymore. Saw 2 doctors and spoke to a third one, they all have different opinions but not one who connects all this with the infusion. They mostly blame everything on my pregnancy. I would be happy if these were just side effects that will eventually pass but I am a afraid I wasn't even low on iron as it was never tested and I might have an overdose now. I tested my b12 levels after I read there is a different type of anemia and it was low. If I test my iron level, will it show the real value or is it already deposited in my organs? Can my liver fail? How can I prevent that? And of course, has this affected my baby?...
BA44810 andy76456
Posted
you absolutely must go and get your phosphate level checked. Tell your doctor that hypophosphatemia is one of the side effects of ferrinject
katie88190 any30878
Posted
Hi all, I had an iron infusion about ten days ago, my second one. The first one I had no issues with, however this time my energy levels have actually gotten worse and I'm struggling to stay awake some days. I was ill before it so I'm not sure if it's a combination of that and the infusion but did anyone else have increased lethargy and how long did it take to recover? I honestly feel so terrible right now and my anxiety is freaking out.
ann52675 katie88190
Posted
Yes I had a Monofer iron infusion 2 weeks ago (for low ferritin of 10 and not absobing oral iron supplements very well) and I am still off work!
Had minor symptoms at first, low grade fever, drowsy as though I had taken some strong drugs but then on day 4 I developed a raging high temperature of 39 for 24 hours and red marks appeared on my skin which I have still got. My husband kept checking me for Sepsis and did the glass blanch test on the red marks. Then on day 6 I went to the doctor who thought I just had an infection and that it wasn't related to the iron infusion, he looked quite perplexed that I even attributed my symptoms to it. Then on day 7-10 was bed-ridden, extremely tired, asleep, headaches, nausea, not really hungry. Have been up and about now for a few days but only pottering round the house. Have missed an important deadline at University as I am doing a part time degree, I had to get a sick note and I have never had to have one in my life!!
I am so pleased that I found this site as I feel like I am not going mad anymore, I just hope that I soon start to feel better like I did before the infusion! and yes have anxiety too!! Just feel so rubbish!
carmen45778 katie88190
Posted
hi , i had my iron infusion last week on thursday 12th december which was already on day 6 of my period . i wasnt feeling well begoreit as i think the keto diet id been on for the last month depleted my electrolytes so i had low levels i believe. during this infusion it was going in faster compared to the last infusions ive had. That night i was ok but next morning i had dizziness, weakness, diahhrea, jittery , extreme fatigue, nausea, anxiety , crying spells, lowblood pressure racy heart and chest pain. it eases a little by night time only to start up again. its a week later and still no appetite. the symptoms arent better . feel so teary as i am scared as to how long otll last . will go to ER if it doesnt get better .
shay13182 carmen45778
Posted
how are you feeling now? how long did it take you to get better?
j13280 any30878
Posted
Hi
I am too so glad I found this website - the resources and advice from HCPs doesnt cover what really can happen. A month or so ago I had a pediatric dose of Ferritin (1/10 of full dose). My ferritin went from 11 to 70 to 26 then back down to 13 again within 8 weeks. I just had a half dose 3 weeks ago and to be honest felt great the next day. But then the side effects kicked in and my whole body ached - I believe it is the ferritin being absorbed into the bone marrow - as it was a bone ache type feeling everywhere. I have read doing th einfusion slowly really helps deter these side effects - but in most clinics I think they just want you in and out as quick as possible. Oncology centres are different and my pediatric dose was given over a longer time than my half dose and side effects were very mild (although could have been the dose as well). I started to feel good about 1.5 weeks later but only for a for days - and I am back with major fatigue, cant concentrate, cant think straight, for some reason severely blocked up and - yes Anxiety galore! Im so frustrated as I am sick of telling people I am tired and no one really gets it. 'You had your iron infusion - surely you are better by now'. And I think everyone thinks it is in my head - so I am so glad to read these posts and know that I am not alone. I am not sure what to do from here on in - if it doesnt get better - my doctor is pretty much out of options. From what I have read here I am giving it a nother week (or maybe two) so it will be 4-5 weeks post infusion. Fingers crossed that everyone overcomes the side effects and gets that big boast of energy they tell you about as soon as possible!
carmen45778 any30878
Posted
mine was ferrinject. i only took the 500 mg and surprised as my last two infusions wwre ok . the problem is the the side effects came up
later about two days later . i havent heard of tne one you mentioned .. sorry . hopefully it never happens again
DanDan83 any30878
Posted
Hey Everyone
I had an iron infusion last week (monofer 1500mg) infused over 60mins.
No immediate reactions however severe flu symptoms started after 48 hours, every part of my body that could ache, ached. Its been a week and most of the side effects have gone except for a terrible headache.
My original ferritin was 9, but my haemoglobin was within range
ive suffered chronic fatigue syndrome for 8 years and now drs are thinking it could have been down to low ferritin the whole time.
carmen45778 any30878
Posted
yes that sounds about right. i ended up having bad symptoms for 10 days. super heavy spaced out feeling still there . apparentky lots of water is extremely impirtant maybe some electrolytes as well
chris11704 any30878
Posted
I'm also experiencing most of these symptoms almost two months later. Instead of the infusion, I was taking the recommended doses of iron supplements of up to 400 mg's in total with each capsule of 28 mg's until the side effects kicked in hard. The shortness of breath isn't as prevalent anymore but the panic creeps in at least once every other day for an hour or longer due to feeling extremely lightheaded with sweating and a racing heart. Digestion isn't all that great either. Hopefully everyone is doing better and overcomes this!
arlene90159 any30878
Posted
i had 2 infusions 12 Dec and 19 dec and was fine afterwards. I had another one on 30 Dec and only difference was the nurse didnt complete the saline flush at the end. 10 days later I'm nauseous as anything especially in the middle of the night. My numbers are good but I feel as nauseous as I did before the infusions began. Zofran doesn't help. Any explanations guys? Hematologist says virus or hormonal but the timing makes me doubt that. Help!!!! Nausea sucks!