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Pernicious anemia

Autoimmune Diseases | Last Active: Apr 29 9:19am | Replies (31)

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@ellasgirl13

I have Pernicious Anemia (a lot of it in my family) and I have used drops and patches, but now B12 levels are gradually falling even with them. My doctor has no experience of this disease and wants to put me on blood thinners because of a sometimes rapid and/or erratic heart beat. I need now to find a specialist as there is some long standing damage to my feet and now my hands are beginning to tingle. Should I take the blood thinners or are they simply irrelevant or possibly damaging to PA?

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Replies to "I have Pernicious Anemia (a lot of it in my family) and I have used drops..."

Hi @ellasgirl13 , I have PA, too, and take Eliquis, but that's for AFib to prevent a clot that could cause a stroke. I have "buzzing" soles of my feet, tingling hands, some nerve pain, and after a lot of tests I now hear "no neuropathy!"
I'm not pursuing it, but please do avoid a stroke and keep B12 levels up - PA can cause dementia, I once read.

@ellasgirl13 I’m glad that you found Mayo Connect and members who can help you.. You might ask your doctor for a referral to a cardiologist who can evaluate your heart condition and prescribe blood thinners, if necessary. Are you currently seeing your PCP or a rheumatologist for the pernicious anemia? Rheumatologists specialize in autoimmune diseases. I’ve included a link for a National Institutes of Health website that has information on finding the right doctors.
https://rarediseases.info.nih.gov/contact
Will you stay in touch with me and let me know what you learn?

My partner has this also he gets transfusions of blood every couple of months

My daughter has PA because of given a proton to heal an ulcer, which affects your B12. She has b12 shots usually every 3-4 months or when she can tell. It was passed on to her two children so is heredity. She now wears a very heavy mask only when she goes out, usually alone. Crowds affect her because of smells, no perfumes or smells of any can cause a seizure. You have nerve damage. Heart palpitations but doesn’t go to a Dr. About it. Just live with it. There is no cure. Certainly blood thinners or blood transfusions wouldn’t help. You need B 12 shots. My daughter has to take B12 that’s pure. Her kids can take genetic B12. It’s a daily struggle and gets worse as you age. She seizures a lot when people use heavy perfumed clothes conditioners like Gain and she accidentally goes on her balcony and smells it and forgot to put on her mask. She wears a badge telling people her problem because they stare etc. But not bad when everyone wore masks which I still do ! She has a pill she can take so she doesn’t seizure when going to the dentist for example. But very addictive and she used too many and was very sick weaning off it. I don’t remember the name. Some are worse off. They can’t even leave their house. Hope this helps.

Have you considered your pa could be absorption? You should be getting injections. I had very bad arrhythmias before starting injections. Have you had your IF factor checked?