Patient Comments: Pernicious Anemia - Share Your Experience

What was the cause of your megaloblastic (pernicious) anemia? Please share your experience.

Comment from: Less than 47, 45-54 Female (Patient) Published: October 27

My pernicious anemia was caused by an autoimmune disorder where my stomach destroyed the intrinsic factor. At the time of diagnosis my B12 level was less than 47 and I had paralysis in my legs and a very weak pulse. My doctor thinks I've had it 5 to 10 years because of the severity of my symptoms.

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Comment from: sbuxt44, 55-64 Female (Patient) Published: October 14

This disease was passed down to me from my mother, her mother, and further back, all Irish. I only gave birth to 3 sons and am hoping it will end there for future progeny. It was held at bay by eating raw calf liver or blood (and no, we are not vampires) but they all had earlier than average mortality, usually around 50 to 60 years if age. One condition of note is that my red blood cells are much larger than normal, when doctor did extensive research. I wonder if it really is pernicious anemia or the large red blood cells which is the cause.

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Comment from: MayoPatient, 55-64 Female (Patient) Published: April 11

I was diagnosed with pernicious anemia (PA) about a year ago. B12 was <70. After a loading dose of B12 shots 5 days in a row, once a week for 4 weeks I then started getting shots once a month. After a few months, I could tell I was going downhill. My B12 level was again below normal. Now I get a shot every two weeks and feel so much better. If you feel that your shot doesn"t get you through the month, have your B12 level checked before you get your next shot. You have to be your own advocate. Get shots often enough to get your B12 level up to around 400. Also consider taking iron supplements because iron is hard to absorb.

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Comment from: ken, 35-44 Male (Patient) Published: August 12

I was born with pernicious anemia. When I was 2 I was so sick doctors couldn't figure out why. I almost died because of it. I take monthly B12 injections and haven't had a problem since.

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Comment from: cal, 65-74 Female (Patient) Published: May 12

I have had pernicious anemia since age 28. I am now 73. I have some permanent damage due to lack of diagnosis until age 30. But since having pernicious anemia I married and had two children. I now take a new B 12 which seems better for my health. It is methyl B 12. My father had pernicious anemia also and we are Scandinavian. So be sure to get plenty B 12 and take care of yourself.

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Comment from: Emily, 45-54 Female (Patient) Published: February 10

I am a rare case. No doctor can figure me out. I have severe anemia, B12 deficiency, I have a high D-dimer count (high blood clotting factor) at all times yet I have thin blood and bleed profusely even with small cuts. This has been going on for 20 years! I am sick and tired of being sick and tired. I had a stroke due to the B12 deficiency. I had 6 iron infusions in 3 months and it has only been a few months since I had them and they are starting another series of infusions because my counts are so low again. I am supposed to have a hysterectomy to see if that will help the anemia, yet because of my bleeding problem I can't have a hysterectomy done! It's a vicious circle!

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Comment from: tink, 35-44 Female (Patient) Published: October 08

I am 43 years old and for the last 3.5 years I have been misdiagnosed with everything from carpal tunnel, to thrush, arthritis, anxiety, nerve damage, menopause, restless leg syndrome, and irritable bowel syndrome. Finally 3 months ago a blood test showed my B12 levels at below 70. My grandmother has had megaloblastic (pernicious) anemia (PA) for over 40 years. I also have an underactive thyroid (19 years). There is a direct connection with family history and long-term thyroid condition to PA. My doctor did not do a loading dose and only offered 1 shot. I ended up in the emergency room and was told they don't deal with PA and they gave me intravenous fluids and sent me home telling me to call a hematologist. The moral: be your own advocate. You know your own body. Don't give up. I haven't.

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Patient Comments

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Pernicious Anemia - Symptoms Question: The symptoms of pernicious anemia can vary greatly from patient to patient. What were your symptoms at the onset of your disease?
Pernicious Anemia - Treatments Question: What was the effective treatment for you pernicious anemia?
Pernicious Anemia - Causes Question: Was there an underlying condition that caused your pernicious anemia?

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