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

Hi Aspelua - sorry to hear you're going through it with anaemia - I suffer from Crohn's and the infusion was necessary as I think I had been anaemic for a year, I can't imagine what it's like to be constantly dealing with it for 20 years, I have a lot of respect for you!

I had the infusion about 4 weeks ago, and was feeling pretty terrible for about 3 weeks solid - however the past week has been a lot better, and slowly I am starting to feel a bit more like myself again. Through reading threads like this it becomes apparent that we all seem to react differently, but the fact you were told it couldn't be the infusion that was making you feel bad seems a little off.

I hope you can get some relief and recovery very soon.

hi beckie have read my story? Get your phosphate checked if you look up hypophospatemia all those symtpoms are it. im into week three of taking medication to increase my levels.

yes! i had my iron infusion on Jan 29. It has been the worst time since then. I have been so unwell. Dizziness, huge heart flutters, chest pain, heart rate shooting up really high, pains all over my body - the list goes on. i ended up in an ambulance twice. Needless to say I insisted on blood tests at my GP and found out i have pretty severe hypophosphatemia - low phosphate which is a complication of iron infusions. And also low calcium. Not to mention my ferritin has gone from 6 to 282 - my body is feeling so overloaded. Get a blood test and hoping we all feel better soon!

Thanks for your information. How are you feeling now?

terrible 😦 started on phosphate tablets only today and will have to have blood test tomorrow - hoping that after a couple of weeks of treatment i'll be back feeling like myself. This iron infusion has literally sucked the life out of me!

sorry to hear that. fingers crossed uou start to fell better very soon. I've got an appointment this afternoon with my gp amd a blood test booked for straight after, hopefully I will find out soon.

Hi

I posted a few months on this forum regarding my issues with hypophosphatemia and ferrinject (I am a GP).

I hope you are starting to feel better.

I'm actually just in the process of getting a case review published and I will forward on when it has been.

Because of the lack of - and often conflicting - information out there, I need to discuss a few things that have been mentioned thus far..

Firstly, hypophosphatemia is actually a "common" or "very common" side effect to ferrinject:

Secondly, the paper you cited is only one opinion of treatment and not one that I agree with. The carobxymaltose element of the ferrinject treatment upregulates (switches on to a high degree) FGF23 which in turn causes the kidney to pump out excessive amounts of phosphate. If you had your renal phosphate clearance measured while you were unwell you would see this (you need urinary and serum phosphate and creatinine to calculate this). Unfortunately, there is enough evidence out there to suggest that being treated with phosphate (whether via infusion or orally) will only upregulate further and make the situation worse. I know this because the paper you cited was the one we followed initially. Only when we had a search round for other case studies did we understand the mechanism. Once my paper if published, it will explain this. The only reasonable way to treat this is to correct the phosphate to a level that is 'safe' then dietary phosphate only and sitting it out. The average number of days for the effect of the ferrinject to wear off is 60 days and once I compared many case studies of this reaction, no matter how people were treated, the levels on average were only back to normal at 60 days.

A paper has recently been published in JAMA that you may find interesting: moderator removed it but google "JAMA carboxymaltose" and it will come up

From having the iron infusion, it took 8-9 weeks for my phosphate levels to return to normal and approximately 14-16 weeks until I felt completely back to normal.

Best wishes

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Ask for your renal excretion of phosphate to be calculated. You need serum (i.e. blood) and urine levels of phosphate and creatinine measured. Normal should be below 10-15% (some say below 20% and some say below 5% so I've averaged it!) At it's worst, mine was over 100%. So my body was pumping out all the phosphate. Phosphate infusions and high dose oral supplementation made it worse.

if phosphate infusion made it worse, how do you deal with it?

I had my appointment at the doctors they wont test me. I have a follow in 2 weeks of i'm still bad they will check then. I am so disappointment. what else can I do? thanks

Thank you thank you! I am a nurse and understood exactly what was happening to my body when they gave me the oral phosphate. I emailed my specialists (endocrine) with research backing up the mechanism you described and he switched me to Calcitriol right away. its taken three weeks but finally my levels went back into the lowest normal range and will continue to rise. There needs to be evidence-based research to create specific guidelines regarding treatment and I thank for your future published work!

So they took you off phosphate completely and just put you on Calcitriol? It seems none of the doctors know anything about this. Mine said it was a very rare complication and had to go on to the UP TO DATE website for GPs here in Australia to read about it. I started Phosphate tablets yesterday and ive woken feeling shocking this morning. I have a blood test this arvo so will be interesting to see what the go is. God - what a process - all from an iron infusion that i thought would make me feel amazing. Not! 😦

yes as it causes a negative feedback loop in your kidneys that cause you to excrete the phosphate at a greater rate than what you can replace it with. I'm under the care of an endocrinologists who has seen this before but i believe most GPs are clueless. its really a simple electrolyte imbalance that can be corrected but its an absolute joke there isnt a standard guideline to follow. The calcitriol is used off label to treat low phosphate but my calcium was also low so it got that up. My phosphate was really low 0.32 and i felt absolutley like death warmed up for over a month. this week (week 5 post infusion) is the first time that im feeling better as my levels just went into the lowest normal range (0.8) my calcium is now normal. But they are keeping me on the medication for another month. Are you in Sydney?

Hi. You could die from a very low phosphate so if your GP won't test you I suggest you print off the JAMA article (moderator here won't let me post the link) and take it to your nearest emergency dept. If you can send me a private message (I don't know how to do this sorry), I can send you my paper - not yet published but that is fine - I'd rather you improve and if my paper can help it will have served the purpose of the efforts.

I can send you my paper - not yet published but that is fine - I'm happy for you to read it. It is currently under review by a journal so fingers crossed it will be in print shortly. It is a case review of my case with back up of other case reviews. If you can send me a 'private email' (I'm not sure how to arrange this sorry), I can send you it. That goes for anyone else on here reading this 😃

If your phosphate level is incredibly low and you are at high risk of death then yes you need to be given phosphate - I would suggest IV and very very slowly. However, as soon as you are out of the very high risk category, then it is a waiting game - I ate a lot of chicken and turkey. I didn't take any oral phosphate supplementation. I did take vitamin D and calcium supplementation though (I was low anyway but Vit D is involved in phosphate/calcium metabolism). I had blood tests every other day then once weekly when I was improving.

Thank you SO much for helping others! I'd found some information online with regards to the phosphorus and FGF23 negative feedback loop, It was rather technical and over my head, but my intuition made me skeptical about taking the oral phosphorus tablets. I'm 5 weeks post infusion and still feeling horrible. The last phosphorus test the hematologist ran at MY request two weeks ago.. I'm down to 1.3. I went to the ER a few nights ago but after 5 hours of waiting I left. Ive seen my GP and he ordered some bloodwork. I'll be printing all of this new information you've provided and be bringing that with me!! I'm drinking goats milk or quality low fat A2 milk daily, gatorade, and lots of water. Thank you again for helping others!!

At the ER they gave me 6 phosphate tablets and then told me to go home and sit it out. I have been eating phosphate rich food and drinks and still feeling unwell after 7 days. do you think this is the correct way to treat it?

I'm in Adelaide. It honestly feels like the doctors have no clue 😦 i had couple days of phosphate and then got blood checked - my phosphate was back near normal. Doctor told me to stop the phosphate. Those few days on it i felt normal for first time in 5 weeks since infusion. So happy... until yesterday i had another bad episode - weird turn/rush from head, heart rate shooting up and then irregular, dizziness, weak legs - horrible. So rang doctor and asked if i should keep taking the phosphate because it did mske me feel better... she said no.. i dont know what to do i feel utterly bizarre again today 😦 getting my levels checked next week and iron too - hopefully my ferritin has gone down - it was 282 last week - it was 6 before that. i want this to end 😦 it's been a dreadful experience.

Hi, After many days of infusions, I was feeling no better (possibly worse as my arms were so sore from the infusions), I switched to eating lots of chicken and turkey and had my bloods taken every 2-3 days. It was scary when it dipped below 0.3 on several occasions but once I understood the mechanism, and could see the effect it was having on my renal phosphate excretion rate - and once I had managed to read a lot of the published cases - I knew this was the only way forward. However, when it was very low, I needed an infusion then as I was seriously unwell.

thats good to hear your levels are normal. i still get those symptoms you described i think its still the body adjusting/ compensating for everything it has been through. im also getting my iron checked in two weeks so will be very interested to see what they are at. I have been eating turkey everyday plus chicken. i think we just have to ride it out i know myself i feel like 70% better, i agree what an awful experience but if our levels are normal there isnt much else the doctors can do but from what i have read its a good three to four months post infusion that people feel completley back to themselves. i still dont understand if phospate levels go back to normal why are we experiencing these bouts of those intense symptoms but if the doctors dont know then how are we suppose to work it out? my levels just went to 0.8 but maybe my baseline before all this was higher and thats the reason i dont feel 100%? what a total nightmare though!

I agree it is an awful thing to have. It affects every part of your body.

I'm sorry to report that after having a normal result in January, I thought all was fine. My fitness was so, so dreadful - even walking up hill was a chore and that was with a normal level. Anyway, I've been building things up slowly and can now do a 5K run. I've just had my phosphate level checked for the first time since January and it has dropped to 0.79...clearly not as bad as it was but I've noticed the chest heaviness again and the feeling like my head is being squashed like a vice. These are 2 of the symptoms that have taken ages to resolve and have never really gone - but they are worse again now. I'm wondering whether a) My muscles are building back up and so I'm using up phosphate at a slightly higher rate than normal or b) the ferrinject effects last a lot longer than any of us were aware of. I'm going to increase my chicken/turkey etc intake again and get back on the higher strength vitamin D. I will get checked again next week and post here again.

im so sorry to hear that! yes im getting bloods next week and will be really interested to see as iv had some great days then others i feel bad! i used to be so fit and now im trying to ease back into it my body must be going stop i need more time! but i know how important it is to get my strength back as i also have PPD and dont want to go back into the black hole i was in a few weeks ago. i think it lasts alot longer than what the drs have said. and yes to the chest and head in a vice symptom! thought i was going mad! are you able to send your report through a private message on this website? think you just click on my username and go from there. im doing my masters in nursing and very interested. i hope you feel better soon!

Hi BA44810, just wondered how you have got on three months on and if you are feeling better now?

Hi Beckie, has your heart rate settled? How long did it take to get back to normal?

Hi BA44810

I can't tell you how helpful your posts have been. I am 6 weeks after a ferrinject infusion that i wish i had never had. My ferritin was 6 but i had only just started to have symptoms of anaemia and was very healthy and fit. I am now bed bound on many days with high levels of fatigue and feeling dreadful. The last weeks have been really up and down but i had a severe case of the iron flu on day 2/3/4 when I was given a vit d injection and it took a week to recover. i had a couple of weeks where i wasn't too bad but it week 4/5 was awful and my phosphate was found to be 0.51. I am taking your advice and eating phosphate rich foods and resisting the phosphate tablets (although i took 1 per day for 2 days when i was at my worst). My biggest fear is ME as my mum suffers from it and at the moment i feel like I am going down that road. I am remaining positive and cling to your post that states 60 days is a time that things could improve and 12-14w was the time it took for you to feel better. I seem to cry at anything which is so out of character and i wish i could have a glass of wine but it makes me feel worse- help!!!

I am a chiropractor so reading everything out there but would really love to read your paper. Did it get published and how are you feeling now?

Hi, I hope you are still in this forum. I ate meat to bring my phosphorus back to normal, but my ferritin also so increased. How can I prevent muscle loss without increasing my ferritin? by having blood tests too often? I am so desperate about how to feed.