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.

Justin McClanahan, Moderator | @JustinMcClanahan | Apr 25 7:29am

In reply to @mdarby "How do you work with pernicious anemia" + (show)

Hi @mdarby, your discussion was combined with an existing discussion titled, "Pernicious anemia" - https://connect.mayoclinic.org/discussion/pernicious-anemia-1/ so that you could check in on Connect members discussing their own journey's with pernicious anemia. @annelise, @june22 and @chris47 shared their pernicious anemia experiences.

@mdarby, how are you currently doing? Have you found a way to work with your diagnosis?

kindly | @kindly | Apr 25 11:27am

Hi I have Pernicious Anemia too.
I need my B12 shots I give to myself every other day or I get symptoms.
I live in Florida but get mine from Germany where you can buy them over the counter. The package slip says you cannot overdose b12 and there are no known side effects except maybe acne.
My acne is gone now after 2 years. I learned a lot at the first international b12 conference in Rotterdam last year. All the patients I met there were taking B12 shots every other day too.
There is some known testing issues with b12 tests for PA patients, I am not quite sure exactly how it works but what I understand is that some b12 binds to something that shows up in blood tests as high b12 (over 2000) for weeks after a shot but this bound b12 cannot be used well by the body. So even if the blood test shows high b12 after an injection most people still need their shots every other day. I found an article explaining this in medical terms: "False elevations of vitamin B12 levels due to assay errors in a patient with pernicious anemia" but would love to learn more about why b12 testing is not useful for PA.

Justin McClanahan, Moderator | @JustinMcClanahan | Apr 25 4:37pm

In reply to @kindly "Hi I have Pernicious Anemia too. I need my B12 shots I give to myself every..." + (show)

Hello @kindly, I see that you tried sharing a link. New members are not allowed to share links when they join, but let me share for you, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6614102/ .

kindly | @kindly | Apr 26 5:59am

Thank you.

mdarby | @mdarby | Apr 27 10:15am

In reply to @JustinMcClanahan "Hello @kindly, I see that you tried sharing a link. New members are not allowed to..." + (show)

I take my b12 shots every 30 days my test only shows in the lower 400 I usually only have a nurse give me results but I stay tired and can only do so much at times my doctor will have me take shots once a day for seven days and then go back to once a month

dloos | @dloos | Apr 27 12:17pm

I take the sublingual B12 daily. I was in horrible shape with aching joints and always tired. A daily oral supplement added to you regular injections might give the boost you need? As someone says you are not in danger of overdosing, so it’s worth a try.
It did take a few weeks for me to feel better.
Make sure you buy methylcobalamin as it is most readily available to your body. I take 1000 mcg lozenge with folic acid every day.

alcazabaencaba | @alcazabaencaba | Apr 27 2:32pm

In reply to @dloos "I take the sublingual B12 daily. I was in horrible shape with aching joints and always..." + (show)

Ojo que si bien siempre se dice que el grupo b de vitaminas no puede intoxicar ya que es hidrosoluble. La vitamina b12 se acumula en el hígado y puede terminar intoxicando. Por años me dijeron que no tenía riesgo de sobredosis pero ahora me dicen los médicos que si!! Consúltalo con un especialista. Estoy de acuerdo con que lo que se debe elegir es metilcobalamina o hidroxi çobalamina pero NO la cianocobalamina. En Argentina en farmacias no se consigue otra que no sea cianocobalamina salvo la inyectable de bagó.

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dloos | @dloos | Apr 28 11:40pm

In reply to @alcazabaencaba "Ojo que si bien siempre se dice que el grupo b de vitaminas no puede intoxicar..." + (show)

I imagine there are always exceptions. Most of what I read says it is quite safe to supplement B12. If you are concerned, of course consult with your doctor.

alcazabaencaba | @alcazabaencaba | Apr 29 7:56am

In reply to @dloos "I imagine there are always exceptions. Most of what I read says it is quite safe..." + (show)

Es que mí médico me lo ha dicho!! Pero uno Hay tres que se quedan con que no se acumula Todos medicos buenos pero alguno se está equivocando obviamente Y sobre vitaminas quien me lo dijo es el que más sabe. Sólo lo comento para que cada uno averigüe y consulte Yo considero que la última dra que me lo dijo es la que está en lo cierto Que se acumula en el hígado es lo que creo cierto. Tristemente los médicos muchas veces no se actualizan . O no averiguan. Hoy en día el mismo profesional médico que por años me insistió en que tomara estatinas (siempre me he negado por suerte!) , está en tratamientos médicos por graves problemas de salud y dejando las estatinas!!! Dejando las estatinas por oden de su propio médico! Y por más de 20 años me decía * tenés que tomar estatinas" Gracias a Dios que no lo acepté jamás! Los problemas que me he ahorrado! Cada día se supone que los niveles de colesterol deben ser más bajos! Y se suben las dosis de estatinas Pero no deja de ser la primer causa de mortalidad los infartos!! Algo no cierra no? Cada vez más estatinas pero no bajan los infartos!! U encima umenta los acv y el Alzheimer!! En qué ayuda la estatinas? O en qué está enfermando? En qué estadística esto ayuda a algo? Realmente lo pregunto

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alcazabaencaba | @alcazabaencaba | Apr 29 8:13am

In reply to @dloos "I imagine there are always exceptions. Most of what I read says it is quite safe..." + (show)

Justamente lo he hecho! No digo esto por mí iluminación Me lo indicó mí médico Que sabe y mí Ho de vitaminas!! Que la b12 si bien es hidrosoluble puede intoxicar ya que se acumula en el hígado como todos ya sabemos Pero ese cúmulo si se sigue invirtiendo b12 son límite es tóxico. No invento nada Lea en la web y verá que actualmente ya son mí vos los informes que hablan del tema. No improviso Leo y consulto Muchos médicos no se actualizan ni leen no consultan

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