Patient Comments: Pernicious Anemia - Share Your Experience

Question:

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

Comment from: Pjay, 35-44 Male (Patient) Published: July 21

I grew up not eating eggs, but meat and fish. I wanted to be vegan, that's when I got so thin, from 83 to 56 kg, within 6 months and I had no answers. Every test was done, including bone marrow, and that's when I was diagnosed with megaloblastic anemia from B12 deficiency. I am having B12 complex injection regularly and have recovered. Although I'm 65 kg, I don't think I can reach 82 again, but have accepted I have to live with the injection. I feel numbness under my feet and dizzy if I sleep facing up, but everything else is 100 percent.

Comment from: Morgonious, 75 or over Female (Patient) Published: July 02

I was diagnosed with acute lymphoblastic leukemia, Philadelphia positive, in January of 2019. My diagnosis followed a 4 day period wherein I thought I had the flu, or a bad cold. I went from running 10 hours a week to not being able to make it from our bed room to our kitchen. I was sleeping 14 to 16 hours per day. An emergency room doctor was curious enough to put me as inpatient to understand why my platelets were only 23,000.

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.

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.

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.

Comment from: Roadrunner, 65-74 Male (Patient) Published: April 12

The most noticeable symptom was when my tongue got a groove right down the middle. It kept getting deeper. When the groove was about half way through my tongue I went to the doctor. He told me it was a symptom of pernicious anemia, gave me a blood test, and I started on monthly B 12 shots. That was about 15 years ago. The shots keep it under control.

Comment from: JOY ROBERTS, 65-74 Female (Patient) Published: November 21

I was born with no intrinsic factor for megaloblastic anemia, it wasn't found out I had pernicious anemia till I was 45, and then only by accident do to other health issues, the smart doctor made a connection with, that the iron pills I was taking were not doing anything for me. After a test to confirm her suspicions, she started me on B-12 injections. She said she couldn't undo the damage the anemia caused me, but she could prevent further damage, as long as I received my shots each month. I had to look up the meaning for the word pernicious, to realize it meant deadly, before I understood how serious this condition was.

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.

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.

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!

SLIDESHOW

Anemia: Common Causes, Symptoms, Types, and Treatment See Slideshow
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.

Comment from: coosaw, 45-54 Female (Caregiver) Published: August 23

This is the result of stomach reduction surgery. She can't walk, even falls with walker. Can't even turn over, in intense pain. Is there any hope? She is getting B-12 by nose spray and on pain meds that don't stop the leg and back pain.

Comment from: Debs, 35-44 Female (Patient) Published: June 25

About six years ago a was having problems getting pregnant. my doctor done some blood test and after a week he told me a had pernicious anemia. A had injection every week then every mouth then three months. then became pregnant and now a have two wee boys A have had these injection now for five years and a always no when a need them .a get tired and my finger get numb and sometimes tingly the pain around my hips and down my legs can get really bad after five years thinking that a was doing ok and just found out a have Graves' disease. Have been told it been brought on by stress as my mum is very ill.

Comment from: Living with PA, 35-44 Female (Patient) Published: May 06

I was told I had pernicious anemia 10 years ago after a miscarriage. I needed B12 injections. After a couple of injections I had severe acne, so I stopped the injections. I was never told I had to have them for life or that I had PA. After five years I had severe fatigue, aching hips and muscles, memory loss and difficulty finding words to tell a story, lightheadedness, and felt off balance. A new doctor diagnosed me with PA after I gave blood and did not recover. I have had regular injections for more than a year now. I still get a few pimples now and then (I never had pimples as a teenager). I know when I am due for a shot because my fatigue returns and I often need a nap.

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Pernicious Anemia See a picture of pernicious anemia and other conditions See Images