Pernicious or Not?

[PacoBfree]

By my doctor's suggestion, I took a genetic test to see if I was metabolizing Folate... results were positive for the mutation consistent with Folate deficiency. I began taking L-Methyl Folate and had immediate improvement. A few weeks later, we tried a B-12 shot... again ~ significant improvement.

I was self administering once a week, but could feel the B-12 wear off... so now I take a shot 2X per week. I asked my doctor if there were any concerns for "OD", but he says no. I asked if I should test to see what my levels are compared to what they "should be", and he says... most important thing is to do what feels best as there are no concerns for "too much".

I've never sought a diagnosis for Pernicious Anemia...I'm just working with the understanding that I cannot metabolize B-9 and B-12.

Thoughts?

One more thing: I shoot Cyanocobalamin... and it causes me to "chew"... I'm wondering if that might be the Cyanide?...

Thoughts?

Thanks All!

[Nackapan]

Sounds like a well informed doctor

[Raven_Cat]

Hi, I was doing some research yesterday and came across some information that may be useful to you. Look at the link I posted to this message and sleepybunny looks to have some useful resources for you as well. Good luck.

healthunlocked.com/pasoc/po...

[Gambit62 Administrator]

the cyanide element in cyano-cobalamin is very tightly bound to the B12 molecule. Also, there is very little cyanide actually in B12 because the molecule is so big. Hydroxocobalamin is used to treat cyanide poisoning because it converts cyanocobalamin which makes the cyanide unavailable to processes that cause harm.

[Lurcher-lady]

I’d just like to say I wish I had your doctor………common sense and not putting the patient down 😊

[tomdickharry]

Cyanocobalamin... and it causes me to "chew".

For one who does not understand what you mean, please describe it.

[Hockey_player]

Once you start supplementing B12, the guidelines say not to test the B12. You should base whether you get enough or not on your symptoms. You want enough to keep all symptoms at bay. If doctors do not know that and they test they sometimes freak out when our levels are very high- but it is nothing sinister, just because of B12 injections. Very best wishes! You need to supplement for life. It is awesome you have a great doctor now. If you get someone else some day, you may have to advocate for yourself.

[mountmuir27]

What do you mean by "chew" and does this only happen after you self inject? I also have MTHFR 677tt which means I need extra folate - methylfolate - or my B12 apparently remains inactive aka high serum levels with low B12 symptoms.

[Mrl1234]

I wonder if your mutation makes it harder for you to process the cyanocobaliman. You coukd ask your doctor about methylcobaliman since it's already methylated. I actually surprised your doc didn't recommend this since they seem to be pretty informed on the topic compared to most.