Questions about pernicious anemia

[Littlemomma]

Does anyone know if PA symptoms will ever go away with treatment? I self inject cycancobalamin every two weeks and while I do have more energy I still have the following symptoms: diarrhea, stomach pains, tinitis, tingling and burning in face hands and legs and feet, eye twitching, dizziness, cloudy thinking, fatigue, paleness, etc. I'm sure you all know the symptoms but will they ever go away? I have been self injecting for two years now and it has been suggested that I get tested for mthfr gene mutation because my labs still show I am anemic. So if I get the proper supplements can I hope these side effects will subside? Can anyone say their symptoms have gone away with treatment?

[Lilnicki]

Every two weeks isn't frequently enough if you have neuro symptoms........ I'm not sure about cyano, but certainly with hydroxy and methyl , every day or every other day is preferable until no further improvement in symptoms. You will also need your folate to be at a good level for the B12 to be used optimally in the body.

[Gambit62 Administrator]

MTHFR would be a good test as that will show if you have the right form of B12 - you would need methyl if you do have the gene - same for folate/B9.

Another possibility is functional deficiency - another immune response - where the body responds to high levels of B12 in your blood by producing antibodies that stop the mechanism that transfers B12 to the cells that need it - the only way of overcoming this seems to be to flood the system with so much B12 that the body can't produce enough antibodies - suspect this is why I seem to need so much B12.

Unfortunately some symptoms don't ever go away - tinnitus is one that frequently doesn't though it might improve if you are getting enough B12.

[19191919]

Mine improved but didnt go. Perhaps when anaemia improves you will feel better. wish you a good recovery x

[Lindax]

PA is for life l,m afraid. Some people need injections weekly or even daily. Once you've been diagnosed with PA the go shouldn't test again legally and they should treat symptoms anyway. Good luck x

[patmackfin]

In the "B12 survival handbook" by doctors Aqsa Ghazanfar and Regev Elya it says.......

"Cyanocobalamin is the most stubborn form(of b12)-thats because in this type the b12 is bound to a cyanide group that won't let the b12 get free that easily.Yes ,it does protect b12 from extreme conditions(such as high temperature etc)but it doesn't let the body free up the b12 thats bound to it.That's not all,There's another reason why we shouldn't like this for of b12-that's the fact that cyanocobalalamin is excreted by the kidneys,as if it's some toxin bound to b12(which is one of b12s function ,remember?)So of course none of us like getting our b12 flushed out whenever we eat it with the intent to replenish our stores.

since the body uses Methylcobalamin and adenosylcobalamin ,these forms are the best when it comes to what form of b12 you should take.

the form Hydroxycobalamin can also be used by your body after it's converted to methylcobalamin ,however it's slightly more expensive to manufacture.

so that makes it pretty clear that you should take any form of B12 apart from cyanocobalamin .Again Hydroxy is expensive,so you can take any of the other two."

...not my words,theirs,and they are doctors.

The best of luck.