Personal Story
Michael
My Journey with Pernicious Anemia
At 54, I’m a world traveler with 15 years of experience living abroad as an expat. My career as a freelance journalist has taken me from fashion shows to American-Georgian defense projects, and more recently, I’ve worked as an independent contractor in delivery services.
Early Symptoms and Diagnosis
I first noticed symptoms of pernicious anemia at age 30, though lab tests at the time didn’t indicate this possibility. Over the next few years, I experienced weight loss and frequent hospitalizations, two to three times annually. These effects subsided until 2020 when, two decades later, symptoms began affecting my balance and gait.
Prompted by these changes, I got a B12 level blood test, which revealed extremely low levels. After six months of testing, I underwent an intrinsic factor antibody test. The results led me to a hematologist in Georgia, who ordered CBCs (Complete Blood Counts). These tests, along with the intrinsic factor antibody results, strongly indicated pernicious anemia.
In August 2022, I received an official diagnosis of pernicious anemia based on intrinsic factor deficiency from a hematologist/oncologist in the United States.
Treatment and Management
My treatment journey began in June 2021 with daily B12 injections. Currently, I administer methylcobalamin B12 injections every other day. It took about 2.5 to 3 years to effectively treat my condition and find the right supplementation regimen.
In addition to B12, I’ve found great benefit in supplementing with other B-complex vitamins, particularly various forms of vitamin B1 (thiamine), including benfotiamine and TTFD. These have been crucial in addressing the neuropathy symptoms I experienced as early as 2019.
Family History and Personal Insights
Pernicious anemia runs in my family; my grandfather had it in his later years, requiring blood transfusions every four months. His experience has given me perspective on how treatment has evolved.
Managing this condition requires strict adherence to a specific diet, consistent mental and physical activity, and maintaining a positive outlook. After 3.5 years of treatment, I feel significantly better and maintain an optimistic attitude towards my health and future.
The Role of Support and Education
Joining the Pernicious Anaemia Society has been instrumental in my journey. Their resources, including YouTube videos, website information, and live Zoom support groups, have been invaluable. Through these, I’ve learned about the importance of comprehensive B-complex supplementation and the need for ongoing education about this rare condition.
My experience has taught me the importance of being proactive in my healthcare. I’ve had to educate some medical professionals about pernicious anemia and seek out specialists who are knowledgeable or open to learning about this condition.
Complications and Choices
I experienced problems with my left eye, which occurs in about 1% of pernicious anemia cases and is indicative of optic neuropathy. This influenced my choice to use methylcobalamin B12 for injections rather than other more common forms.
Gratitude and Advocacy
I’m deeply grateful for my membership in the Pernicious Anaemia Society and would encourage anyone affected by this condition—patients, loved ones, or medical professionals—to consider joining. Their resources have been crucial in my journey.
I also extend my gratitude to all the healthcare providers who have assisted me along the way, as well as to other informative websites that have been vital in supporting my treatment journey.
In sharing my story, I hope to raise awareness about pernicious anemia and encourage others to seek proper diagnosis and treatment. With the right approach, it’s possible to manage this condition effectively and maintain a high quality of life.