Personal Story
Kelly, South Carolina, USA
I’m not really sure how long I have had pernicious anemia because I have been struggling with health issues for years. I have seen endocrinology, cardiology, neurology, and made multiple trips to the emergency room. I wanted to share my story because after learning more about pernicious anemia, it seems that it is too common to wait years for a diagnosis.
For me, the health issues came on slowly and I thought it was probably just due to aging and exhaustion from having three young kids. Over the course of a few years, I went from regularly being able to run 50 miles a week to barely being able to make it through a beginner tennis lesson and needing to lay down afterwards. I could see in my lab work that something was not right, but I listened to doctors that told me it was normal to struggle with anemia and other health problems.
Some of the symptoms I had were iron deficiency anemia, unstable blood pressure, extreme exhaustion, brain fog, clumsiness, numbness in my extremities, heart palpitations, and many more that are classic symptoms of pernicious anemia. I think one of the reasons my diagnosis took so long is that I was also suffering from symptoms that are not typically associated with pernicious anemia like low cortisol and trouble regulating my blood sugar. If I got sick with a cold, it would sometimes last for months with no explanation. My health was not great but not alarming enough to get the help I needed. I tried to listen to doctors that told me to exercise, get lots of sleep, and eat well but I was not getting better. I was taking an iron supplement but couldn’t seem to heal my anemia. I was surviving off on too much coffee, unnecessary medication, and prayer. I felt like I was slowly dying, and I knew I had to do something if I wanted to see my kids grow up and feel like I was actually living again.
I decided to take my health into my own hands and not just blindly trust doctors. I tried a variety of diets, supplements, and health protocols. One thing I tried was going for various vitamin injections at a health spa. I was having some reprieve from illness but was not getting enough regular injections to feel completely well and would end up sick again. After enough trial and error, I was able to make the connection that it was specifically the vitamin B12 shots that were helping. The numbness in my hands started to go away and colors looked more vivid. I took this information to my doctors and was initially dismissed. I had to find new doctors and use concierge health care to convince a doctor to run the blood tests I requested: an intrinsic factor antibodies test and several others.
Finally, I was diagnosed with pernicious anemia. I was happy to have an answer, but I was also extremely angry when I got my test results back. I was pushing through an illness that would have eventually killed me without treatment, while doctors convinced me I was just anxious and aging. Within two months of consistent treatment I had normal bloodwork, something I have not had in years. Pernicious anemia affects so many systems of the body I think the recovery process really needs more than just treatment with B12 injections. For me the B12 deficiency caused iron deficiency anemia that snowballed into various other health issues. One important part of my recovery has been seeing a holistic doctor. I have found that I have had to educate myself about this disease and to also educate my doctors. Being a rare disease that affects so many bodily systems I have not spoken with a doctor that is familiar with treatment and current recommendations.
Overall, I have been ecstatic with my recovery, but I can also be hard on myself when I cannot meet the expectations I have. My memory is not what it used to be, and I can have fluctuating levels of energy. Sometimes, I am in the position of feeling ill again while I learn how often I need to inject. Like many others with pernicious anemia I have found that I need more injections than what my doctor initially prescribed. My diagnosis is pretty recent, and I am still learning how to manage my health but I wanted to share my story so that hopefully someone sees this and will not have to face the years of illness that I did. My advice I would give to anyone with a new or suspected diagnosis would be to trust yourself and advocate for your health, do your own research, switch doctors if need be, and demand answers. Moving forward, I want to advocate for others with pernicious anemia and other rare and invisible diseases. I hope my story will inspire others to get the help they need.
On a final note, I am really grateful to the Pernicious Anaemia Society because if I had not found their website and read the other patient stories I would have not had the information to get my diagnosis. Thank you to them for all that they do!