Patient Comments: Pernicious Anemia - Share Your Experience

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

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: 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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Comment from: Val, 75 or over Female (Patient) Published: September 06

I believe I had symptoms of B12 anemia since I was in my mid twenties; frequent bowel movements, anemia whenever I was pregnant, and spider vein when pregnant or during periods later on. In my forties I became progressively weaker but when I had a blood test all areas were perfect. The doctor told me they had lost my hemoglobin count. I think he didn't want to believe it was so low. A couple of years later, the Gynecologist said my blood count was 7 and prescribed iron pills. Friends at the YMCA gym classes told me about ALLBC=800 which I began taking. It helped but did not cure my problems, but I think it may have saved my life. It at least kept me alive until I switched doctors and when I went in to see him, so ill that I carried a bucket in the car for vomiting, when my neighbor drove me, I told him about the blood count of seven and he immediately initiated all the right blood tests and called me at home and sadly told me that I had B12 anemia. I was glad to know what I had because at least I could do something about it. I had also figured out that I have severe lactose intolerance and I had been hospitalized for Crohn's disease 4 times since my youngest child was born. It turns out I do not have Crohn's, but Meckel's Diverticula with a stone in it. All three conditions have the same symptoms so I was in really bad shape but nevertheless kept forcing myself to keep going. I now take B12 shots every other day. I believe that most people with B12 anemia do not take enough injections. It has improved my blood count to around 12 and minimized other symptoms such as weakness, numbness and muscle cramps in legs. Diarrhea, which used to be a terrible problem, is far less frequent now.

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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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