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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chantelle88647 any30878
Edited
To anyone who has had an iron transfusion and is feeling awful weeks on please read my story below:
I am a 36 year old mother of three and my third was born in September 2019. I had a very traumatic birth after unexplained bleeding in the weeks leading up to his birth and lost over 1.5 litres of blood following a failed induction. Emergency c-section was performed. I was diagnosed with PND and PPA a few months later and have been on an antidepressant and Valium for panic attacks and insomnia. When i got my period back I began having the heaviest periods I have ever had even with endometriosis since I was 14 they had never been so heavy. Ferritn and iron dropped quickly and I began having dizziness, headaches, fatigue and heart palpatations. So good for my anxiety! I had the Mirena inserted last month and two iron tranfusions of FerrInject (1.5g) a week apart. The first dose I only had a headache but since the second dose my quality of life has drastically declined. Yes flu like symptoms are common but should resolve within days or a week. I have experienced overwhelming fatigue, pins and needles in hands and feet, shortness of breath, numbness in my face, poor appetite, nausea, non stop anxiety and increased heart rate. Last month I was excercising every day and now walking up the stairs leaves me breathless. On the weekend I ended up in emergency and diagnosed with severe hypophostamia (low phosphate) and my calcium was also low. They put me on phosphate tablets but they gave me chronic diarreah and actually caused my phospate to fall again. After doing my own research about this under reported side effect, I emailed my endocronlogist along with the research and he saw me today and put me on a
tablet that they use to treat oesteoarthritis. He said by some bizzare coincendence he has seen four other people this month with the same symptoms. He assured me it would go away but gave me no time frame. I then went to see the nurse who runs the infusion clinic and adminstered the iron. He told me the following;
He assured me once my phosphate levels go up I should start to feel better but it could be days weeks or months. The iron should then settle and do the job its suppose to do and alleviate the symptoms of iron deficiency. He also said the symptoms are real and not in my head. so for anyone out here experiencing this rare reaction get your phosphate levels checked and find a good endocrinologist who has knowledge of this. If you have a good GP who knows about this you are really lucky but I have found them to be useless. My mental health deteriorated so quickly that i thought i was going to end up in a mental institution, I couldnt stop crying and felt absolutley hopeless. This has ofcourse completely derailed my postnatal depression recovery and i even switched anti depressants as my husband and doctors were so concerned about my mental health. Now that I know I am actually experiencing a severe metabolic and electrolyte disturbance, I feel mentally better. I will keep this board updated with what happens as i have to get bloods performed every three days. This board is the ONLY source of info I could find and I hope you are all recovering from this debilitating reaction. I have also provided a link to the published research regarding the incidence of hypophospatemia following intravenous iron therapy.
(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6689119/pdf/EDM19-0065.pdf
Hugs to all you strong women!
Chantelle
elizabeth31062 chantelle88647
Posted
yep a year and a half ago when i got my infusion, i ended up in the er a couple weeks later and had low phosphate. no one mentioned it, but i saw it on my chart. i barely survived that summer. BP was 80/60 and i dropped 20 lbs in one month. i cant believe I got through it. what was the other drug he gave you to bring it up? did it work?
chantelle88647 elizabeth31062
Posted
hi elizabeth thanks for your msg oh my god so they never even gave anything for the phosphate? how long did it take you to recover? im so sorry you went through that. as of yesterday the have put me on calcitriol and they hope it will gradually push up my phosphate but they have to make sure it doesnt make my calcium go up too high. i am losing weight fast why? i seriously can t believe this is the only website in the world that has support and info!
elizabeth31062 chantelle88647
Posted
i started to recover about 4 months later. and it was slow. you are the first person that i know of that said it might be phosphorus related. this is unbelievable. im surprised im alive to be honest.
websbysara elizabeth31062
Posted
Oh my gosh!! This is horrible people are suffering like this!! After weeks of misery and a ton of searching online I finally found this forum too! Thankfully you got better! My sympathies for what you had to live through!
bec86991 chantelle88647
Posted
hi @chantelle88647
just curious, was your periods very heavy after iron?
ever since my infusion my periods have been so weird and very heavy.
chantelle88647 bec86991
Posted
hi bec86991,
the reason i had the transfusion was due to heavy periods so its hard to tell but yes they were still heavy. do you have endometriosis? my natropath explained that iron tranfusion can cause an imflammatory crisis with those with endo so yes heavy bleeding would be part of that. are you feeling any better?
bec86991 chantelle88647
Posted
thanks for your reply.
my period has always been heavy but since the infusion its really really bad and lasting 11 days, i only used to have it for 7.
i have never been diagnosed with it no but i have asked the dr about it.
im having an internal ultrasound next week to see if there is anything else going on.
other then that im pretty much back to my normal self apart from feeling sick constantly and feeling out of breath.
i really felt like i was going to die for a while there. so scary.
im so thankful i came across this thread.
maria33196 elizabeth31062
Edited
Hi Elizabeth, I’m not sure if you have read my post but I was overdosed one year today & still have not recovered...I couldn’t thank you enough for your post about phosphorus, I seen my Dr yesterday to find out mine was low along with vitamin D, Now I’m hoping with getting the right treatment I can start to recover from this torturous nightmare ...I believe your post has saved my life...GOD BLESS YOU !!
maria33196 chantelle88647
Posted
Hi Chantelle, I’m not sure if you have read my post but I was overdosed one year today & still have not recovered...I couldn’t thank you enough for your post about phosphorus, I seen my Dr yesterday to find out mine was low along with vitamin D, Now I’m hoping with getting the right treatment I can start to recover from this torturous nightmare ...I believe your post has saved my life...GOD BLESS YOU !!
chantelle88647 maria33196
Edited
Maria, i am sitting here with goosebumps im so so sorry you have been like this for a year! and they never checked your phosphate levels in that whole year??? complete negligence thats why i had to get this info our there. i dont know if your saw my other post but if they offer you phosphate tablets and you dont respond to them (they gave me such bad diarreah i was so dehydrated they couldnt even get blood and made my levels go further down) ask for calcitriol which since you are low in vitamin d would be more suitable for you anyway. Within 48 hours of taking this i felt 20% better which as you know its a massive step up from feeling like the walking dead. oh my heart breaks for you how this must have impacted your whole life. but you will get better just keep fighting and yes phosphate and vitamin d levels are a perfect storm for a complete metabolic and electrolyte imbalance. the iron literally is pulling the phosphate and vitamin d from our bones! please let me know how you go and if you need more info.
maria33196 chantelle88647
Edited
OMG Chantelle I read your message & immediately burst into tears. I will go out & get this first thing Monday morning. I thank you from the bottom of my heart as I had reached the point were I just wanted to close my eyes & never wake up again not to feel this living hell. I’ll keep you posted as to how I’m going once I get onto this medication. Thank you one again.
chantelle88647 maria33196
Posted
hi Maria, i hope it works for you. are you being monitored by a dr? i have to have bloods done every three days to make sure it doesnt put my calcium up too much. what was your phosphate level? good luck praying it works for you!
maria33196 chantelle88647
Posted
Hi Chantelle, I’m doing my bloods tomorrow testing for phosphate & vitamin D levels. My last test a couple of months back were showing my phosphorus under range 0.69 normal range being (0.80-1.50) & my Vitamin D was 33 which was also under normal range (50-140) calcium was in normal range. Pre-iron infusion my phosphorus was (1.22) & vitamin D both within normal range. What was your reading ? I’ll keep you posted letting you know once I get blood results & see my Dr. Thank you for making me aware of this issue which is giving me a glimpse of hope in making a full recovery.
Ps I'm from Sydney Australia, where are you from ?
chantelle88647 maria33196
Posted
Maria im in sydney too!!! my levels were 0.3 last week. i suspect yours were probably that low at the start of this nightmare for you. My vitamin D is normal at 76. do you have a good specialist now?
maria33196 chantelle88647
Edited
Oh wow !! Is there any other way we contact each other apart from here ? As I’m sure we have many questions for one another that could be beneficial for us both.
beckie37292 chantelle88647
Posted
Hi Chantelle,
can you tell me what drug you are on please? Many thanks, Becky.
chantelle88647 beckie37292
Posted
hi specialists put me on Calcitriol a calcium medication. i had to have regular bloods to ensure calcium didnt go up as that can be dangerous too. The oral phosphate gave me chronic diarrreah. 5 weeks on i feel so much better.
beckie37292 chantelle88647
Posted
thank you for your help. I'm seeing my GP today and blood test booked in for afterwards. Fingers crossed I get some answers.