How I finally got diagnosed with B12 Deficiency/Autoimmune Pernicious Anemia
I’d been suffering from severe daily migraines for several years. The doctors didn’t know why and no medication or treatment seemed to cure them. Then I was hit with back-to-back infections for several months. I was fatigued to the point that sleep was not restorative. And stomach upset meant that I’d been on a liquid diet for weeks on end. But all of my symptoms were blamed on the typical stresses of life and on being a sole caregiver for my dear mama. Patient blaming at its finest. For years. Not cool.
Finally, at the start of this year, a doctor decided to test my Vitamin B12 level. It was UNDETECTABLE. That means it’s amazing I was even alive. Your body requires Vitamin B12 to function and thrive.
Since I have a lifelong needle phobia, I got lucky that my doctor agreed to run a bunch of tests at once rather than ruling out diseases one by one. Based on my symptoms, the doctors thought I likely had Lupus, Rheumatoid Arthritis, MS or Fibromyalgia. I was terrified, but I knew something was wrong and was just glad someone was finally listening.
The results came back and the doctor told me I tested Positive for Antibody to Intrinsic Factor. Huh? I had no idea what that meant. Turns out, it means I have Autoimmune Pernicious Anemia, which prevents my body from absorbing Vitamin B12 through food or supplements. I had literally been sick my entire life, and no one knew why until I was 33 and nearly bedridden.
Because I can’t absorb Vitamin B12 through my stomach, I require injections of Vitamin B12 to live. There are three types of injectable B12, though only one (cyanocobalamin) is readily available to me in California. [Important note on the 3 types of injectable B12: Sally Pacholok’s “Could It Be B12?” book states: “Studies have demonstrated that hydroxocobalamin is superior to cyanocobalamin” and “Recent research has found that patients with neurological involvement may benefit even more from high-dose methylcobalamin.” (both quotations from page 226). I’m very grateful to have cyanocobalamin prescribed to me, and I hope one day the other two types will be available here so that I could see for myself if I noticed further improvement.] Through my own very difficult experiences (and hearing those of my B12 buddies in our support group), I have learned that figuring out the dosage your body requires to recover is a very personal journey and oftentimes a fight with your GP.
About five months ago, I won the battle to begin daily injections and for the first time saw an improvement in my condition. Unfortunately, that wasn’t until I got significantly worse. That was when I was scared I wasn’t going to make it to my 34th birthday. That’s when I was too tired to chew and I was so weak I could barely crawl to the bathroom. I needed a walker or wheelchair to go anywhere and I didn’t have the strength or coordination in my hands to button/zip/tie any clothing or shoes. I couldn’t stand any light, loud noises, strong smells or even bright colors. The list of misery-inducing symptoms went on and on.
But things started to get better after I found the B12 Deficiency/Pernicious Anemia Support Group on Facebook. That’s when I learned about how to properly advocate for myself. It wasn’t that I didn’t know how (as I’ve got five years experience advocating for my dear Mama) — I simply didn’t know enough about my disease to know what I’d needed! This is so much more important that you can possibly imagine. My GP actually told me I was the first person she’s ever diagnosed with Pernicious Anemia! So I’ve had to learn as much as I possibly could for myself. Here are my top resources on B12 Deficiency! As I learned more about it, I discovered that I’ve actually been showing symptoms of B12 deficiency since I was a toddler! It explained so much in my life.
Today’s #OneGoodThing is sharing my B12 story with you in honor of Vitamin B12 Awareness Week, which is September 19-25. Reading about fellow Pernicious Anemia sufferer Meg Hartley’s experiences made me feel less alone; and I sincerely hope sharing my story can do the same for another. Still to come this week… my top 10 coping strategies and how I learned to give myself injections despite a lifelong needle phobia.
Day 267 of 366.
What was your #OneGoodThing today? Please share in the comments!
Curious about B12 deficiency and love a good movie about a feisty nurse who could save your life by taking on the medical establishment? Well, you’re lucky because this weekend only you can watch the movie “Sally Pacholok” for FREE!!! Use the code JEFF and click here: https://vimeo.com/ondemand/sallypacholokmovie
Note to my Nosy Parker readers: Vitamin B12 deficiency can cause a wide variety of symptoms. A Vitamin B12 deficiency can kill you and before it does, it can truly wreak havoc on your entire body. It is a serious, chronic illness. If you’ve got any of the symptoms in this graphic, please visit the websites listed for more information. (Special thanks to a B12 buddy in the support group for making this graphic!) Ask your doctor to test your B12 level BEFORE taking any supplements on your own or you’ll skew the results! Also, I am not a doctor, nurse or scientist. I am simply sharing my personal experiences and what I’ve learned.