Getting my first Venofer infusion today, nervous and excited!
I’ve been feeling like absolute crap recently and decided to do some of my own research to try to figure out what was going on.
I am diagnosed with ADHD, depression, anxiety and have been anemic in the past. I’ve been experiencing significant fatigue, daily headaches, brain fog, significant forgetfulness/absentmindedness, exercise intolerance, depression/anhedonia, irritability, emotional dysregulation, chronic muscle pain especially in neck and shoulders, heat intolerance, cold hands and feet, dizziness, restless legs, heart palpitations, shortness of breath, hair loss, the list goes on and on.
Something told me to ask my PCP to add ferritin to my recent labs. Lo and behold, my ferritin is 12. Looking back it’s only been 12 or 13 for at least 3 years. The labs show a range of 8-300+ as ”normal” so my PCP never thought to investigate further. They literally just thought I couldn’t get my ADHD, depression and anxiety medicated properly despite trying to for at least a decade now.
I feel a lot of relief and believing I have figured out why I have been feeling so sick but at the same time I am incredibly angry at this systemic failure that I know affects women significantly more than men. I am trans/non-binary and take testosterone weekly which is known to increase overall red blood cell count and hematocrit. I had been donating blood 3-4 times a year because I’m O- as well as for the relief it provides me from getting overheated with the increase in red blood cells. Needless to say, I have to put donating in pause for the foreseeable future.
After advocating for myself hard with a doctor that was taking place of my normal PCP while they’re out of office, they still did not take my symptoms seriously. I asked them to prescribe an iron infusion and they said they are new to that office and had never done so before. They ended up placing a routine referral for me to see a hematologist which will take months and then the hematologist would have to prescribe the infusion which would probably get denied by my insurance then I would have to appeal, blah, blah, blah. I love living in America, the best country in the world! /s.
Thankfully, I am able to afford at least one iron infusion out of pocket at a private IV therapy clinic. After consulting with their nurse practitioner, they suggested 3 infusions of Venofer (200mg) to bring my ferritin close to 100. I’m a bit nervous as I haven’t had an iron infusion before but I am much more tired of being sick and tired so I am willing to take the risk.
Would love to hear people’s experience with iron infusions, particularly Venofer. Did it help raise your ferritin? How long did it take you to feel better after the first infusion?
Demographic:
Age: mid-30s
Gender: Transmasculine/NB
Sex: F
Current Diagnosis's: ADHD, Major Depression, General Anxiety, iron deficiency without anemia.
Most recent labs:
Ferritn: 12
Iron: 77
Iron binding capacity: 416
Iron saturation: 19%
RBC: 5.33
Hemoglobin: 14.6
Hematocrit: 47.4
MCH Concentration: 30.8