Pernicious anemia

Posted by pdsi43one @pdsi43one, Jan 17, 2018

I have familial pernicious anemia coupled with Hashimoto’s disease as did my mother, grandfather, and great uncle. They are both autoimmune diseases. The thyroid goiter was removed when I was 27. I have taken thyroxine since then. About 8 years ago tingling in feet and hands was diagnosed as B12 deficiency. However, the intrinsic factor associated with pernicious anemia was not known about by physician. Decline in Tingling, fatigue, awkwardness in walking, etc became slowly worse. I finally went on line at Mayo website and discovered my diagnosis. I printed out and took to my Dr.
Test were done. Confirmation ! After beginning B12 monthly injections, symptoms abated some, but there has been no significant improvement. Taking balance classes gave been the only help to keep from falling.

Is anyone out there doing something else besides B 12 injections for PA?

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Hi @pdsi43one,

I’m tagging @bookworm, who has written about pernicious anemia, (“I have neuropathy, primarily numbness, in my feet from a 10 year delayed diagnosis of pernicious anemia.”), and I hope she will return with some more insight for you.

You may also wish to view this discussion, “Diagnosed with pernicious anemia; my stomach distends after eating” https://connect.mayoclinic.org/discussion/when-i-was-diagnosed-with-pernicious-anemia-i-noticed-that-my-stomach/ where @cdicicco @shosh37 @ntp01 have talked about this condition.

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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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@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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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.

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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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@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?

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@becsbuddy

@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?

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Thank you for your reply. I know from my mother's long journey trying to find a specialist that not all doctors are created equal when it comes to Pernicious Anemia. She went to some of the finest hospitals in London and was prescribed iron pills or folic acid. That did no good and was absolutely the wrong diagnosis. As a child she had to consume raw liver several times a day, but it kept her alive, at least. It was a relatively recently graduated Doctor who finally diagnosed her. in her fifties. When she came to live with me in Texas the doctors used the usual old story that it was no big deal, and prescribed the cheapest and least effective medication. Her health declined. My cousins also have this rare form of PA too. So, I am on a mission to find a doctor who can help me. I am hoping to find a portal where I can at least question doctors and not have to explore every rabbit hole in my search for a specialist. Thank you again for your kind reply.

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@ellasgirl13

Thank you for your reply. I know from my mother's long journey trying to find a specialist that not all doctors are created equal when it comes to Pernicious Anemia. She went to some of the finest hospitals in London and was prescribed iron pills or folic acid. That did no good and was absolutely the wrong diagnosis. As a child she had to consume raw liver several times a day, but it kept her alive, at least. It was a relatively recently graduated Doctor who finally diagnosed her. in her fifties. When she came to live with me in Texas the doctors used the usual old story that it was no big deal, and prescribed the cheapest and least effective medication. Her health declined. My cousins also have this rare form of PA too. So, I am on a mission to find a doctor who can help me. I am hoping to find a portal where I can at least question doctors and not have to explore every rabbit hole in my search for a specialist. Thank you again for your kind reply.

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@ellasgirl13 I am so sorry that your Mom isn’t doing well and seem to be getting the run around. Have you been to a major medical center or university teaching hospital? You can also try the Mayo Clinic Care. Network: https://mayoclinic.org/about-mayo-clinic/care-network/members.
Rheumatologists specialize in autoimmune diseases so look for them at major clinics and teaching hospitals.
Let me know what happens!

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

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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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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.

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@june22

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.

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Thank you for that response. I have every sympathy for your daughter. I know that the doctor has continually ignored my own PA. It runs in my family and we have all suffered with the total ignorance of doctors, including my present one.
I am suspicious that your daughter has something other than PA , she does need to find (difficult) a specialist who can listen (YES,LISTEN !)to her various needs some of which do not seem to be related to lack of intrinsic factor. which produces PA. Try to find one of the more major hospitals that might have better specialists who can help her. I will eventually track down someone who knows what they are talking about..in the end I can ask my family doctor in Englaand who treated my mother. Love and blessing for you all, from ME

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@ellasgirl13

Thank you for that response. I have every sympathy for your daughter. I know that the doctor has continually ignored my own PA. It runs in my family and we have all suffered with the total ignorance of doctors, including my present one.
I am suspicious that your daughter has something other than PA , she does need to find (difficult) a specialist who can listen (YES,LISTEN !)to her various needs some of which do not seem to be related to lack of intrinsic factor. which produces PA. Try to find one of the more major hospitals that might have better specialists who can help her. I will eventually track down someone who knows what they are talking about..in the end I can ask my family doctor in Englaand who treated my mother. Love and blessing for you all, from ME

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Yes she has PA. Has gone to experts. She lacked B12 since she was young and we didn’t know what as wrong for 40 years. Her two children have the same thing and only B12 shots help. Also gone to Drs who agree. Many of them and all have different degrees. Sorry.

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@june22

Yes she has PA. Has gone to experts. She lacked B12 since she was young and we didn’t know what as wrong for 40 years. Her two children have the same thing and only B12 shots help. Also gone to Drs who agree. Many of them and all have different degrees. Sorry.

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@ellasgirl13 and @june22 . Have you thought about going to Mayo Clinic? This link will connect you to the application:
https://mayocli.in/1mtmR63.
Appointments are not gauranteed, but it is sure worth the effort.
The following link might also be of help:
https://health.usnews.com/best-hospitals/rankings/rheumatology
I wish you all the best. Please, can you let me know what happens?

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@becsbuddy

@ellasgirl13 and @june22 . Have you thought about going to Mayo Clinic? This link will connect you to the application:
https://mayocli.in/1mtmR63.
Appointments are not gauranteed, but it is sure worth the effort.
The following link might also be of help:
https://health.usnews.com/best-hospitals/rankings/rheumatology
I wish you all the best. Please, can you let me know what happens?

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Thank you very much for this information. I will certainly check out the Mayo Clinic and the hospitals on the other list.

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