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

Hi Lisa, how is your daughter now? how is the dizziness?

Hi,I'm almost 4 months out and still feel very unwell most if the time.I did have an issue with iron overload . Ferritin went up very high.Wish I would not have had the treatment!

I'm not a doc but I've seen some sources say that ferritin levels between 60 and 90 is an optimal range. I'm assuming anything above or below that range may come with symptoms as mine was at 221. I'm 10 months in and still not recovered with lingering symptoms such as dizziness, stomach issues, fatigue, nausea and chest tightness. Certain foods I am definitely intolerant to that I wasn't before and shortly after consuming them, the symptoms come back harder.

glad to know I'm not the only one that's noticed the intolerances. Do you feel dizzy with certain movements? have you found anything useful during your recovery and would you say you are almost 100% better?

Normally my dizziness comes and goes during the evening into night time every single day for a few hours even as I'm sitting down. I'm still experimenting on ways to get rid of these awful symptoms. I think diet definitely plays a big factor but I'm trying to figure out which foods I have to eliminate to reduce these symptoms. Initially, I could remember 3 months into this, when my symptoms were disappearing, I completely cut out sugar and avoided iron fortified foods. I was closer to 100% 7 months ago than I am now when I started to feel off again. Have you experienced any weight loss during this time?

I may have a closer look in to my diet, but i was told dizziness is a long term side effect of the infusion i had - so I'm assuming until my body uses it all up ill have the side effects, saying that the iron has dropped from 528 to 71 so im hoping my body continues to use it up fast!

When I first had the iron for about 2 months I had no appetite and so I lost over a stone but as the months have gone by im eating much better and have noticed a little weight gain.

did you notice any kind of allergy symptoms after the infusion?

I haven't really experienced any forms of itching or rashes but I have gone through many cycles of shortness of breath followed by wheezing and chest tightness. Also I've noticed my face turning beat red at times that seemed very unusual. I've also lost about 20 pounds through all this. I think a good iron specialist might know how to solve this excess iron problem or the symptoms associated with it as the ER doesn't seem to have much of a clue when I mentioned this to them.

I have lots of excess mucus, blocked ears and every time i swallow there is cracking in my ears, since I've had the infusion, I have been to see ENT but nothing detected so they assumed its inflammation/congestion

I did contact an Iron specialist who explained it was long term side effects that would eventually clear up - she mentioned each time the cells release the Iron to make the blood cells, if I'm intolerant to the Iron I will notice side effects, and this has been the case, symptoms get better and worse but I have to say gradually everything is getting much bettter.

Are you able to do normal daily activities with the dizziness?

I honestly just need to lay down once the dizziness begins to kick in or try to finish off a task that I'm in the middle of completing. The anxiety just started to come back again usually triggered even more by stimulants such as caffeine. I have no clue what the fix for this is. Have you managed to lower your iron levels and did you take any procedures to achieve this?

yes my iron is now 71, its come down from 528 but im actually due to check it again. After doing lots of research, I have done some wet cupping, had tummeric and the monthly cycle has also been good to reduce the iron. I was also told giving blood is a good idea to get rid of excess iron but i didn't try this. I can totally relate to you with regards to the anxiety - Ive never been a worrier so I never really experienced anxiety until i had this infusion and my goodness its been terrible and so hard to manage - I don't have any caffeine and i stick to minimal sugar, with lots of fruit and veg!

Hi,my ferritin went up to 1239 and it took almost 2 months for it to drop to 704.I have been feeling very ill since my infusion almost 4 months ago!

This is very interesting. I wonder how long it could take for it to clear up. I am more than 3 months post infusion and still struggling with bad symptoms every now and then. I have better days, but the next days all symptoms are back again. I believe this is due to low phosphate, but maybe it could also be related to intolerance to the iron. I am seeing a great endocrinologist so hopefully I'll be back in fitness some day. I was in such a great shape before the infusion, but started to get real bad symptoms from low ferritin. Could not imagine that I would end up even worse than before.

Hi Tess, what symptoms have you been struggling with?

Hi Shay!

When hospitalized with low phosphate I had severe headache, dizziness, back pain, nausea, fatigue and overall feeling sick. When the symptoms comes back these days its mostly headache, back pain and fatigue. My biggest issue is that I cannot exercise at all. After just a 1 k run I end up bed ridden for days! I still struggle with low phosphate and is desperate for it to return to range.

Do you still have other symptoms besides the dizziness? I am so sorry its been so long since your infusion and that you still have symptoms.

Likewise I hated the first few months I could not exercise at all - but thankfully now I've started doing exercise again and will build up my stamina and endurance slowly.

I constantly feel fatigued and I still have excess mucus, and cracking in my ears which doctors have labelled as being inflammation/allergy from the infusion - but I was never given a time frame of how long it would take for everything to clear up. From my experience I have come to the conclusion that the symptoms gradually get better but do vary in intensity from day to day.

Shay, Thank you for your reply! I have severe symptoms from my ears as well with tinnitus being the worst part! My ears also feels very congested. I had some tinnitus probably due to low iron before but it's much worse since the infusion. I haven't even mentioned that to my endocrinologist since I could not see it as something related.

I know what you mean with symptoms vary from day to day. sometimes I feel that things are clearing up just to be thrown back ten steps the following day!

I am terribly sorry you are still fatigued! That is probably the part bothering me most of all amongst my symptoms.

Do you know your ferritin and phosphate reading now?

I had also thought the ear symptoms were nothing related to the infusion, but turns out the Iron can cause prolonged flu like symptoms.

My phosphate level has remained normal since the infusion , thankfully! And the ferritin was 71 around 2 months ago - I am due for another test, hoping it will have gone down further so that side effects will soon fade away and I can use natural sources to increase my ferritin, as I will never consider an infusion again.

I am happy to see these comments and to know I am not crazy experiencing issues after infusion. I'm on day 8 after my Venofer infusion and I feel worse as the days progress. my ferritin was high prior to my infusion which was 231 range (15-204). I'm having major fatigue, muscle weakness, no appetite. I am also in menopause and have a skin disease the causes boils in which I believe it is infected and have started on antibiotics. I'm praying for better days ahead.

I'm so sorry to hear this, and pray for a fast recovery. Please read everything previously written in this thread an lets have your phosphate levels checked. l'm 4 months post infusion and my phosphate is still not in range. I was in a terrible condition for 3 months, and is still struggling with some symptoms.

Can I just asked you why they choose to give you an infusion with your ferritin being high already?

Take care

Hi Chris, how are you getting on? have you made full recovery now?

Hi, have your dizziness and tiredness gone? may I know when did you start to feel 100%?

Hi both (shay13182 and tess58684) really wondering how you are getting on. I am nearly 4 months since the infusion and i am still at times very fatigued. I am off to a functional Dr and endocrinologist tomorrow so hoping they can help. I am sure it is alot to do with phosphate levels but I am wondering if at some point the body starts doing what it should again naturally at some point. I am trying to stay positive but its tricky at times.

Hi, high ferritin levels also cause fatigue. What was your ferritin value in the beginning and how much is it now? Some sources say the ideal range for ferritin levels is 60-80.(Some sources say 30-60) I think 30-60 range is ideal for ferritin. I understand you, very well. Even after months, I still could not recover with symptoms such as stomach problems and weakness. It’s really hard to stay positive. Did you experience nausea during this period and how long did it take for your stomach to heal?

I luckily didn't get nausea .. just an overwhelming feeling of fatigue and weakness. It got better around 12-14 weeks but as soon as I do a little too much - a longish walk etc i am floored for about a week. I can't work as i just don't have enough sustainable energy. Its do disappointing... In august - about a month ago my ferritin was 71. It had been below 20 for about 4 or 5 years. I wonder if that doesn't help. How long past your infusion are you?

Hi pip8963,

The fatigue does improve. however for me I've become iron deficient again (1.5 years) after the infusion so I'm using low dose natural iron which seems to be working well.

I was bed bound for around 7/8 months and from then to now, I'm still trying to get used to being active and I do have days where i just want to lay down and rest. At first when I became more mobile I was rushing to go back to doing things but it was too much for me, so I done everything gradually.

My doctor explained to me that the fatigue I was experiencing was because my body was working harder because it couldn't tolerate the Iron and the numerous side effects over several months would caused fatigue too.

I hope you feel better soon. All the best!

Hi, even though it's been 5 months since my infusion, I can't work either. Most days I feel weakness and without energy. I still have hypophosphatemia. Do you use vitamin D? (It plays a role in calcium phosphorus metabolism.) How did you manage to lower your ferritin levels? Are you vegan or your body doesn’t store iron?

Hi, how did you manage to lower your ferritin levels? Are you vegan or your body doesn’t store iron?

Its so good to hear your fatigue did improve - I'm so sorry you became anaemic again. Its all a balance isn't it. I am now seeing an endocrinologist who had done every blood test you can imagine and an endocrine function test where you have to collect all your urine over 24hrs! My results are on Monday so will let anyone know if there is anything interesting found. I am also having blood tests taken next week by a Haematologist re autoimmune status.. I hope there is something I can do or take to help the fatigue. For now the endocrinologist (and functional dr) has suggested I take ATP fuel (a supplement to support mitochondria) and a turmeric supplement and aloe drink everyday for the reflux i suffer with. My diet is still full of sardines and other seafood, packaged chicken slices, greek yog, skimmed milk and even dairylea when i can face it!!

One other thing that concerns me is that I have supported my mum who has suffered with ME/chronic fatigue for many years and worried that i am heading the same way. Could the way I have responded be genetic? Staying positive that this happened due to the iron infusion... cause and effect. If only someone knew how we could all recover from it.. or at the very least understood it! How do you switch off the FGF23...

so I'm now 6 months past infusion. From 4.5months to 5.5 months my fatigue started to get worse. I am now on thyroid medication which has definitely picked me up and I feel more positive. This is turning out to be a very long road and I'm not sure my body will ever be the same again after the infusion... I still need to rest after any exercise. Generally I can only manage a dog walk a day. I hope everyone is ok and getting better eventually? xx