Post Iron Infusion Dizziness

Jennifer K.
on 4/28/21 10:03 am - Phoenix , AZ

Question: Has anybody experience delayed side effects from iron infusion? Or any change in symptoms after having a transfusion?

Background: I had my first iron infusion 4/15 due to low ferritin. I have been struggling with this since August and have been under doctors care, she had me triple my oral iron with very little success. I had no side effects after the first iron infusion - I saw maybe a 10-15% improvement in how I was feeling and was still experiencing dizziness, lethargy and low energy levels. I had my 2nd infusion this past Thursday 4/22, no side effects at the time. With this infusion I am seeing a 50-60% improvement so far in dizziness, lethargy and energy levels.

Last night I wa**** with extreme dizziness, I laid down and went to bed. Slept fine, felt fine when I woke up and when I went to get out of bed I felt like I was drunk. I was very dizzy, uncoordinated and foggy. Best I can equate it to is if you stayed up late drinking and woke up and was still under the influence. I called and spoke with the on-call Dr and he said this would be a very delayed response to the iron and felt its something else, referring me back to my PCP. I am currently awaiting a call back from my primary. Ive been awake for 5 hours now and most of the symptoms have subsided but I still feel "weird" and "off", again kind of like when you are hungover and your equilibrium is off and have brain fog.

TIA for any feedback.

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hollykim
on 4/28/21 3:05 pm - Nashville, TN
Revision on 03/18/15
On April 28, 2021 at 5:03 PM Pacific Time, Jennifer K. wrote:

Question: Has anybody experience delayed side effects from iron infusion? Or any change in symptoms after having a transfusion?

Background: I had my first iron infusion 4/15 due to low ferritin. I have been struggling with this since August and have been under doctors care, she had me triple my oral iron with very little success. I had no side effects after the first iron infusion - I saw maybe a 10-15% improvement in how I was feeling and was still experiencing dizziness, lethargy and low energy levels. I had my 2nd infusion this past Thursday 4/22, no side effects at the time. With this infusion I am seeing a 50-60% improvement so far in dizziness, lethargy and energy levels.

Last night I wa**** with extreme dizziness, I laid down and went to bed. Slept fine, felt fine when I woke up and when I went to get out of bed I felt like I was drunk. I was very dizzy, uncoordinated and foggy. Best I can equate it to is if you stayed up late drinking and woke up and was still under the influence. I called and spoke with the on-call Dr and he said this would be a very delayed response to the iron and felt its something else, referring me back to my PCP. I am currently awaiting a call back from my primary. Ive been awake for 5 hours now and most of the symptoms have subsided but I still feel "weird" and "off", again kind of like when you are hungover and your equilibrium is off and have brain fog.

TIA for any feedback.

sounds like it could be Meneries ( so) disease, an inner ear problem, google it snd see if it fits.

 


          

 

Janet P.
on 4/29/21 3:15 am

I've had many infusions over the past 18 or so years and never experienced anything you describe. Since it happened so long after your infusion, it's possible that it's completely unrelated to the infusions - maybe a drop or spike in your glucose levels? Hopefully your doctor will have some ideas.

I started getting infusions about a year after my DS. I simply don't absorb oral iron. I've had many different types of drugs (they've definitely gotten better over the years). The latest infusions I had was a drug called Injectafer - last infusion was more than 3 years ago and my ferritin numbers are still over 100 (it was probably below 10 when I had the last round).

Hope they can figure out what's wrong.

Janet in Leesburg
DS 2/25/03
Hazem Elariny
-175

sweetpotato1959
on 5/1/21 7:42 am

Did Dr try you on Foltrin,? It worked well for me, to build and maintain. It is pharma's answer to low iron absorption. requires script, generic/cheap now. Contains EVERYTHING the body requires to absorb iron..(most "iron pills "do not.)from the small capsule and your food, There is the" intrinsic factor" missing from most. look up "intrinsic factor for iron absorption+ natural source". FOLTRIN Can be prescribed 2 X's /day if tolerated well . There are2 others- I am aware of- those are extremely large and hard to swallow. Walgreens has one- other is a maternal vite.

Natures answer is liver. I use desiccated organic liver caps now, better for me than eating it 5x a week,

Balance issue could be any disturbance of inner ear- those are also associated with chronic sinus /allergy. I have had dizziness like that that did respond to a decongestant.

H.A.L.A B.
on 5/11/21 9:14 am

What type of iron did you get?

Some iron, such as Injectafer , can cause a really dramatic drop in phosphorus

"The pharmaceutical drug Injectafer (generic name: ferric carboxymaltose), an iron carbohydrate complex used to treat iron deficiency anemia, has been linked to severe hypophosphatemia (HPP) - a dangerously low level of phosphorus in the blood that can cause life-threatening complications.

Severe Hypophosphatemia Can Be Life-Threatening

Iron deficiency anemia occurs when the body lacks sufficient iron. Injectafer is an iron deficiency anemia treatment used in adult patients who have an intolerance or unsatisfactory response to oral iron. The drug is injected intravenously by a healthcare professional, often in two doses, approximately seven days apart.1

Injectafer has been shown to dramatically reduce the amount of phosphate (phosphorus) in the body, leading to severe hypophosphatemia. Symptoms of severe HPP include extreme fatigue, muscle weakness and confusion, and left untreated, severe HPP can cause seizures, respiratory failure, heart failure, rhabdomyolysis, and osteomalacia.2 Complications involving severe HPP can even lead to coma and death.3

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