Patient Comments: Pernicious Anemia - Symptoms

The symptoms of pernicious anemia can vary greatly from patient to patient. What were your symptoms at the onset of your disease?

Comment from: Gwen, 65-74 Female (Patient) Published: October 27

I have had B12 deficiency for some years. I also had a thyroidectomy 46 years ago and now need thyroxine. My symptoms with regard to B12 included extreme fatigue, low concentration, and feeling cold. An outward sign of pernicious anemia was dry patches of skin on various parts of my body particularly in the underarms and on my torso. As soon as I began B12 injections I felt better.

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Comment from: Houston Texan Fan, 45-54 Female (Patient) Published: September 04

Early 2013 I was having problems with my heart racing. I went to the doctor, he sent me for pictures and stress test and everything was normal. I then started feeling exhausted all the time, and so I went to a different doctor because my blood pressure medicine needed to be renewed, and he sent me for the typical blood and urine tests. I thought everything would be fine; wrong! I was called back in his office urgently, he told me my B12 level (221) and iron were low and he started B12 shots once a week for eight weeks. He sent me to a gastroenterologist and found out that I had a small bleeding ulcer in my esophagus and bigger bleeder in my stomach and baby ulcers throughout my intestinal track. I am on 40 mg Protonix and I am supposed to be once a month on my B12 shots, but I don't even last that long. My B12 and iron are in normal range. I give my self B12 shots every three weeks but it doesn't last long because I have exhaustion, tingling in toes and fingers and heart racing at times. I feel like I need to be back on once a week but scared to talk to my doctor about it because of me being in normal range.

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Comment from: badsinger, 45-54 Male (Patient) Published: May 05

All my life I was one of those who rise at 4:30 am and I ended my day usually drifting to sleep at 10:30 pm. I also worked 7 days a week and maintained a large house on 2 acres. Then one day I started to feel really sluggish and dismissed it as though I was getting older; less energy. I thought I was burning out. Then I noticed that if I did not eat anything all day my energy would burst up full throttle, though my mood would swing rapidly, yet if I had a meal, healthy or not, my energy level dropped. I became more tired, fatigue set in and what could be a simple chore like taking trash to the curb would exhaust me for hours. I had to push myself to do the easiest of things and more often than not, just felt like I had died inside. I still do. B12 injections worked for a short time for my pernicious anemia and today I fight the demon inside me who took away my energy and the feeling we all get to enjoy a full day of activities without having to wrap a blanket around me and sleep all day wondering where my energy and the day has gone.

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Comment from: Girlie16, 45-54 Female (Patient) Published: April 14

When I was in my early forties I had vertigo, ataxia, cognitive decline, IBS (irritable bowel syndrome) with diarrhea, tingling sensations all over, a creepy crawly sensation on my scalp (like lice), joint stiffness, vision disturbances, ocular migraines, muscle twitching, peripheral neuropathy, fingers and toes cramping into twisted formations, and extreme fatigue, but no diagnosis. After years of tests, years of it's 'most likely stress', it's 'stressful being a single mom', and the one that sent me into a rage acting like a kooky person and demanding a new neurologist, 'it's all in your head', I finally got an answer; pernicious anemia. My B 12 level was so low that it was immeasurable! It was all in my head; affecting my central nervous system! My new neurologist had never treated a patient with an immeasurable level, so he had to research a high but safe level of injections that would saturate all my tissues but without a risky reaction. I received daily injections for two months and then weekly injections for three months. During that initial treatment, I developed a non-itchy rash and horrible acne which lasted about a year. But I didn't care, because I felt great! Now my injections are on a monthly basis which will continue for the rest of my life. Interestingly enough, about 5 days before my injection is due, some of those symptoms reappear in full force; usually brain fog, fatigue, and muscle contractions. I was told it would take 5 years to reverse the neurological damage that could be reversed. Now, at age 51, I am past that point. So the damage has been done, but I still feel better than I did all those undiagnosed years! It's infuriating to think such a simple test isn't included in an annual exam.

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