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 Support Group.

@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.

Jump to this post

@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?

REPLY
@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?

Jump to this post

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

REPLY

I have many of the symptoms listed in your and other PA chats. I have been dealing with PA for 40 years since its first onset.

In my case, the accurate ID of PA connected to a growing B12 deficiency took a classically trained GP who specialized in allergy and had a career long pension for finding the cause!

What I find particularly interesting is the fact that most of the symptoms and family histories that I read on this chat site are diagnostic of Celiac Disease!!! In my family’s case the CD goes back at least 3 generations.

For instance, one of the first symptoms of CD is a loss of the ability to absorb B12 and its associated PA. My GP’s prescription was monthly B12 injections. They were quite successful at helping the associated anemia and fatigue, but CD damage is so pernicious in many ways, that B12’s use is limited.

To add to the confusion of multiple symptoms and a general feeling of over all decline is a CD patients medical welfare is the fact that as many as 200 symptoms have been associated to CD.

Finally, unfortunately modern medical training has tended to only focus on symptoms and not the causes according to my recently retired GP and good friend Len. And as a result, most MDs are not particularly good at connecting the dots of seemingly unrelated symptoms.

Suggest anyone with multiple symptoms go to any of the increasing Celiac Disease websites that list the classic CD symptoms and count how many of the symptoms on the list that they have!

The first time I did that, In had about 80% of the list. If you have more than 2 or 3 on the list, you might want to contact the MAYO’s Celiac Center.

REPLY
@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?

Jump to this post

Why would I do that as she is under the health and care of two Doctors who monitor her.

She has done thorough study and research herself to get as far as she has. At least she found out what her problem is and is able to live with it. I’m not interested in advice as it’s not me that has PA.
I’m just saying it is not an easy thing to live with and maybe help someone else. If someone has a new thing about what is effective for PA, that would be nice. But you can’t say she doesn’t have PA as it’s been proven. Thanks for all your interest and input. I appreciate your help.

REPLY
@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.

Jump to this post

Thank you for the hug. Much appreciated. 🤗 hug back to you. 💕

Sent from my iPad

REPLY
@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?

Jump to this post

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?

REPLY

Once a month is nowhere near enough. The recommendation for PA w neurology symptoms is every other day if using hydrox or everyday w cynacoblamin. You also need to be taking cofactors and monitoring them. I’m at 8 weeks of injecting every other day and my neurology symptoms are much improved.

REPLY

Does anyone know of a doctor or facility in metro NY area that will do the correct tests for pernicious anemia? I can't seem to get past this hurdle with my providers. My grandfather and uncle had it and I have had some type anemia that may have caused or worsened polyneuropathy.

REPLY

How do you work with pernicious anemia

REPLY
Please sign in or register to post a reply.