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Okay, how many of you guys just googled “Pernicious Anemia” !? Sounds pretty random, I know, but for today’s (#TBH) To Be Honest post I figured it would be worth sharing something many people don’t know about me & what it’s like living with Pernicious Anemia.

Diagnosis Story

When I was in high school, I suffered from the worst burning stomach aches I wouldn’t wish on my worst enemy. I was so sick my Sophomore and Junior years, sometimes out of school for weeks at a time. I had every test done under the sun to see what was causing this extreme, paralyzing pain along with severe tiredness that 9 hours of sleep couldn’t solve. After exhausting our (my parents and myself) efforts, we made the decision to see one last doctor at NY Presbyterian who was highly referred to us & had a reputation for finding cause for reason. I’ve had many rounds of routine blood work done with all my prior visits, but this doctor was the first to request testing for my Vitamin B-12 levels.

Once the results came in, it was apparent I had EXTREMELY LOW levels of Vitamin B-12. This result led to next steps of determining what area of my digestive track to target focus on. Ultimately it turned out I had small ulcers in my small intestine, right in the area before it meets the large intestine. Little did I know that precise location of these ulcers would determine my ability to naturally absorb Vitamin B-12 for the rest of my life.

In a nutshell, Pernicious Anemia is an autoimmune condition caused by the body’s inability to receive adequate Vitamin B-12 to produce normal red blood cells.

What does this mean?

Contrary to Vitamin B-12 deficiency, my body cannot naturally absorb Vitamin B-12 found in foods that are regularly in my diet:

• meat
• poultry
• shellfish
• eggs
• dairy products

This also means I can’t take a Vitamin B-12 pill/supplement, as those pass along the digestive system to be absorbed into the bloodstream by the small intestine – which for me is blocked by ulcers. Instead, I get an injection once a month in the arm that shoots B-12 into my bloodstream directly. I’ll have to receive these injections for the rest of my life.

What happens if you don’t have enough Vitamin B-12?

Whenever my B-12 levels get low (aka it’s time for my monthly injection) I struggle with two intense side effects, personally speaking:

1. Extreme Numbness: My fingers and hands, sometimes feet, get very tingly and numb and remain feeling like this for most of the day. One time the numbness went for the nerves in my legs all at once in a frantic fashion, which made both my legs from the pelvis down feel like they were on fire and caused me to literally fall down from a simple standing position. Thankfully that’s limited to a one time experience to date, but I’ve felt my legs and arms get a burning sensation for a few minutes before going back to normal.
2. Extreme Exhaustion: You might hear of people getting B-12 shots for an extra boost of energy, which is valid in the sense of what this vitamin provides for the body. However when you have low levels, your body becomes a walking coma of endless exhaustion. It doesn’t matter if I get 5 hours or 10 hours a night, there would be days I couldn’t physically get myself up and feel 100% awake. This is probably the most debilitating side effect I struggle with.

If not treated, it’s possible to develop serious complications from the effects of pernicious anemia.

The most dangerous complication is gastric cancer.

Other potential complications of pernicious anemia include:

• nerve damage
• digestive tract problems
• memory problems, confusion, or other neurological symptoms
• heart damage

Prognosis Outlook

Many people with pernicious anemia require lifelong treatment and monitoring. This can help prevent long-term damage.

The symptoms of long-term damage include:

• an upset stomach
• difficulty swallowing
• weight loss
• iron deficiency

I’m very fortunate to have been diagnosed early and have since been receiving proper care before any serious damage occurred. Unfortunately, this is something I will have for the rest of my life and need to receive injections for to maintain normal RBC stability within my autoimmune system. Despite the episodes of numbness and exhaustion, those are moments I can handle and will always be prepared for. There are MANY other side effects much more severe that take an enormous toll on the body, and I’m very lucky to be otherwise healthy (knock on wood!)

If you or someone you know have similar symptoms of numbness and exhaustion, consult with your doctor to check your B-12 levels. It’s not always a stomach ache that leads to the development & discovery of Pernicious Anemia.