This is a firsthand account submitted through SWHR’s Share Your Story portal, as part of SWHR’s Women’s Health Perspective series.
My journey begins with a drive down a busy interstate with a sudden onset of palpitations. Of course, this leads to panic, but thankfully I was able to pull over safely and call 911. While waiting for the ambulance, I was able to check my pulse and found it to be in the 120s. When help arrived, my vitals were checked, including my blood sugar, and all were found to be normal, but I didn’t feel like myself, so I opted to be transported to the emergency room (ER).
At the ER, multiple tests were performed and were overall normal, but I felt “off,” and as I was getting dressed to leave, I noticed I was short of breath, which I communicated to my provider. I was told I needed to get some rest and follow up with my primary care physician (PCP). This visit would lead to two additional ER visits, all saying the same thing.
Tearfully, I told the ER physician at the last visit that I understood the tests were coming back normal, but something wasn’t right. I shouldn’t be short of breath, heart racing, and panicking. This wasn’t my normal. She agreed to send me to the hospital for a further workup.
While in the hospital, I asked specifically for an iron study, as I had a history of anemia, and I just came off an extremely heavy menstrual cycle. I was told multiple times that my hemoglobin (HGB) and hematocrit (HCT) were a little low, but this wasn’t a concern. Again, multiple images and tests were done, all returning normal, so I was released.
I started taking iron on my own, and I began to feel slightly better, although I wasn’t 100% better. I followed up with my PCP, who agreed to do an iron panel, and it showed normal numbers. Actually, my iron was almost too high. I did not know this at the time, but if you are taking iron and test the same day, it will falsely elevate your actual numbers, which at the time led me to stop taking the additional iron.
Some time passed and the same thing with my heart palpitations happened again, also while driving, which led to another set of ER visits and a hospital stay. This time I did a self-referral to cardiology. In the meantime, I followed up with my then PCP and my gynecologist and requested another iron panel. Both denied my requests due to my HGB and HCT being slightly abnormal and my previous iron study being normal. I felt physically awful, even worse than before. Palpitations, shortness of breath, and now the visual distortion were all overwhelming.
After having to miss work for multiple days, my coworker reached out to check on me. I tearfully explained what was happening, and she immediately got an appointment for me to see her directly; my colleague is a physician assistant in family medicine. During my visit, an iron panel was drawn. My serum iron was extremely low, my iron percentage was in an alert range, and my ferritin was low. My HGB and HCT continued to be slightly low, but not alarming. I was immediately sent to rheumatology, where an iron infusion was ordered, along with a gastrointestinal Consult – which appeared normal, thankfully.
With this new information, I was able to address the underlying cause of my low iron, and my numbers are slowly climbing back up. What’s not discussed is how having iron deficiency with or without anemia is debilitating. It becomes a recalibration of multiple systems. Along my journey, I kept insisting and requesting to have an iron panel drawn. I asked multiple health care providers, from ER doctors to my PCP, gynecologist, and several hospitalists – all who denied me that request. I was given a diagnosis of anxiety instead, and prescribed medications. I had no answers and things were scary. The sudden onset of symptoms and the progression of these symptoms were all overwhelming.
While I am thankful for the extensive workup, I received to rule things out like stroke and heart attack., I can’t help but feel like I wasn’t heard. I believe in “you can’t treat what you don’t know,” but you have to search for the answers. I don’t believe our health care system is fully aware of the impact untreated iron deficiency with or without anemia has on an individual. It’s going to take more education to address this. We can do better.