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?
megan17636 any30878
Edited
My question to everyone who has been on phosphate for an extended time, is why ? Is it because you have regular blood tests and your levels keep dropping ? I went back in range fairly quickly and stayed good over a few tests over a month or so , so did not continue with phosphate eventhough still not feeling great. I am now feeling about 90% being 3 months post infusion.
joanne91451 megan17636
Posted
Hi Megan,
I've had the same issues as everyone else but never went on phospate or calcium treatment as phosphate levels a few weeks after were low but within normal so GP wouldn't do anymore. My infusion was 21st Jan so 4 months ago and I have very slowly got nearly back to normal although keep getting occasional bursts of symptoms again although not quite as bad. This whole week for example I have had anxiety, headaches, nausea and diarrhoea again, exactly as before. No other reasons for it. Wondering if this is the negative feedback loop thingy mentioned by a GP in a previous post. Sigh.
Wish I had never had the infusion as it did nothing for energy levels/fatigue.
Keep plodding on everyone xx
paradisecity megan17636
Posted
hi megan, I'm close to week 9 too and my stomach is terrible. In how many weeks did your stomach start to improve? Did it improve gradually or all at once? I feel so helpless I hope you are still in this forum
paradisecity joanne91451
Posted
hi, in how many weeks did your stomach start to improve?
megan17636 paradisecity
Posted
Hi, I am now more than 1 year since the horrible 3 months I had after my iron infusion and gernerally feel good now, but do still suffer from reflux or more burping than I used too. My stomach did gradually got better, think if you are stressing it probably makes it worse and try taking reflux medication. Honestly I had so many symptoms going on at that time , I still really don't know what to think, or what actually caused it, I actually think now it had as much to do with hormone changes as the affect of the iron infusion.
paradisecity megan17636
Posted
When I had an endoscopy 2 years ago, nothing was detected. But when I had an endoscopy after iron infusion, reflux and gastritis were detected. So I think this is caused by the iron infusion. Exactly, the hormonal change and the stresses we went through had a especially bad effect on our stomach. Besides these symptoms, I think my memory is not as good as it used to be. I don't know exactly if this is due to the intense stress I've been through. When my ferritin goes down, I hope all my symptoms go away. Because I am very tired.
Thank you very much for your reply. The symptoms you experience each week are very similar to mine. That's why I'm motivated by your writings in every bad moment
megan17636 paradisecity
Posted
I feel for you those 3 months were horrendous for me including a few trips to hospital which resulted in nothing being diagnosed . Not sure of your age but as I said believe alot of my symptoms could also be attributed to removal of Mirena causing sudden hormone change along with probably heading in to menopause. I gather you have probably also done alot of internet research of your symptoms to find this forum This forum helped me alot at the time. Try to keep your mind occupied with other things, I also tried to fill my day with doing short walks, trying to go a bit further each time. Hope some of this helps, take care
shay13182 any30878
Posted
Hi Everyone,
I am still having some vertigo/unsteadyness and heart racing with minor activity, it has improved greatly since it first started 6 weeks ago. I have just done bloods that show phosphate, calcium, vit d and full blood count are all normal apart from still having a slightly raised ferritin level.
I've also had 2 ECG's which are normal.
I have been given vertigo/balance exercises but they give me a bad migraine - so I have stopped doing them.
Has anyone else simply had these side effects for a long period and of time which go away on their own?
lisa26966 shay13182
Posted
hi Shay, how long did your dizziness/vertigo last for and did it just go one day, or was it gradual? My daughter still has these symptoms and it is almost 6 weeks since her iron infusion. thanks
shay13182 lisa26966
Posted
Hi Lisa,
I'm now 6 months post but have still been experiencing these symptoms although they have been gradually fading. It's been a really terrible experience and I totally understand what your daughter is going through. As the iron level has been decreasing, the better I have felt. As the Ferinject is only stored in the body until it needs to be used, I found myself having days where symptoms were so severe and unbearable then some settling etc, so I think my body didn't tolerate the it at all. I really hope your daughters symptoms ease soon.
kim81868 any30878
Edited
I had one yesterday due to my levels dropping to 5.9 & my Dr said it was heading into dangerous territory so I had no choice after chickening out for so long. Infusion was fine, hardly felt the canula, over in 20 minutes & they gave me Ferinject. Told me I might get nausea or a bit dizzy but usually passes after a couple of days. I came home feeling strangely tired but other than that fine for about an hour then my nose felt like it was starting to run. I automatically put my finger up to it & there was blood, I grabbed paper from my desk then both nostrils just gushed out blood, it literally poured. Grabbed a towel as blood was everywhere, rang the surgery & they said nose bleeds are not a side effect of an iron infusion however it would be the spike in my blood pressure which is a side effect. OMG was so scared, thought I was going to drop dead from a heart attack due to high blood pressure. Last night I had headaches & stomach cramps all over. Today, feeling off as in hot flushes, head feeling like it has alot of pressure in it & blood pressure still up a bit which I'm monitoring. Dr says benefits outweigh risks so I can't wait to feel normal again!
shay13182 kim81868
Posted
Hi Kim, I also had Ferinject and it increased my blood pressure too! It will pass.
rosie53203 any30878
Posted
If there is poor absorption of iron in the intestine, it is necessary to add iron from the vein, but iron is more irritating to the venous blood vessels and often causes phlebitis. It does not have much impact on other organs.
katy_80 any30878
Edited
Hi everyone,
Wow, I have to say it's reassuring to read that my symptoms match with so many of yours, and I sincerely hope you are all feeling starting to feel better.
I had a Ferinject infusion 11 days ago, and it's been a pretty awful time ever since. I felt so dizzy the day after, but it wasn't til four days post infusion that I felt truly weird and took myself to the ER. Fatigued, breathless, a panicky/constant sinking feeling, achey all over, weak, heavy feeling arms and body, sometimes dizzy. I had googled 'feeling weird after iron infusion', and the word hypophosphatemia kept coming up, so I mentioned it to the doctor and he ordered blood tests. Two days later the results came back, and sure enough, I had low phosphate, 0.52. I was given phosphate phebra tablets, but a few hours after taking them, my hands started to get a weird spreading numbness and tingling and I actually went back to the ER, because by this stage I was so freaked out.
Since then, I have seen a new GP who has been really thorough and has monitored my phosphate levels and checked my heart etc at my request. My phosphate is back to normal already but I have another blood test scheduled this week to check the levels don't keep dropping.
Now I still have a lot of the symptoms but I'm trying to get on with life, I mostly just feel completely exhausted. So ironic considering this infusion was meant to give me more energy! I wish I could go back in time and not have the infusion. Weirdly, I actually had Ferinject 2.5 years ago in late pregnancy, and had no such symptoms. So this has really taken me off guard. It feels like I'm recovering from a trauma! I have a toddler and I was all set to start working out at a gym to try to get fit, but who knows when that can happen.
Because everything looks back to normal on paper, but I still feel so strange, my doctor asked (kindly) if I might be suffering anxiety. I'm pretty sure these residual feelings are from the infusion though. My ferritin was 800 one week post infusion. Maybe my body is just struggling to process all this. Anyway - just wanted to share my story. To anyone reading this who is wondering why the hell they feel so weird after a Ferinject infusion, please get your phosphate levels checked asap!
deborahek83 katy_80
Posted
Hello,
I am from Australia and just wanted to reply as I have also had an awful experience with iron infusion (Ferrinject 1000mg) and it appears not many doctors know potential complications of these infusions for those unlucky people.
Katy my story echoes your own and I hope you are all better now.
I had my infusion 12 days ago. The first couple of days I had common effects headache nausea then at about day 3 & 4 tired and nausea nothing alarming though continued to feel off.
I awoke day 7 to tingling hands cramps headache shaky feeling like I'm having a heart attack. weak muscles like I cannot walk properly and panicked. suddenly have panick attacks? out of nowhere at 40 years old. I dont think so and complete mental confusion for a couple of days too very scary. changed taste and no appetite also remains have to force myself to eat.
A couple of GP appointments and hospital ( called an ambulance so terrified and unwell) I was found to also have low phosphate. I did not have this problem prior. the week before bloods normal. I am now taking Phosphate tablets and back for bloods in one week.
My symptoms have remained fairly consistent though thankfully slightly better though I am still fairly unwell walking around the house is an effort but at least I am able to do this now.
It alarms me that not many gps know about this possible side effect complication. my first GP was unaware my second knew what to check straight away and hospital also was unaware! one GP told me cant be related I have an infection. yeah an infection that started a week after iron infusion and my phosphate which has been normal for years suddenly drops to 0.4 and I am symptomatic of low phosphate and the symptoms on box of ferrinject!
more education for the medical fields about this is required.
anyway sharing incase this helps anyone. I will not do this ever again and hope I improve from here.