3 Months on: After my last B1... - Pernicious Anaemi...

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3 Months on

Advice1 profile image
6 Replies

After my last B12 injection i have just noticed pins and needles returned at night for 2 weeks now to both arms and numbness in hands 9 weeks into the 3 month B12 injection treatment.

I am low normal 174 ng/L before any loading or B12 injections from past results although don't believe have PA like my mother.

The magnesium i take has brought down Migraine Auras by 50% to 3 auras a month .But the magnesium appears to have stopped working and i am getting 5 this month already so my

suspicion is lack of B12 causing the Migraines and it should be given every 2 months with other symptoms of tinnitus and awaking in early hours.I have a GP appointment soon and

will be pushing for my trial of every 2 months B12 which would make sense to see if there is a difference i will be putting this to the GP who replied and said after a recent letter i sent that she is not authorised to give closer B12 injections (Bored of being told this nonsense ) than every 3 months but i disagree that it is me that

will be given more problems by her lack of treatment with earlier B12 injections i will keep bugging the GP's until they

are bored of me :)as the only one this inaction is hurting in my opinion is me!

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hellybaybee profile image
hellybaybee

I think you're low as opposed to low/normal... don't forget you can be symptomatic below 500 ng/l... you say that you don't think that you have PA... why do you think this? have you been checked? Do you have other related illnesses like hypothyroidism? I had the symptoms you describe and my blood results showed b12 of 254... my GP just looked at my blood results and asked no questions about symptoms just said "your body's quite happy"(don't u love modern medicine?) I thought "yeah that's why I walk down the stairs like a slow moving crab" any way, I went through a charity to get b12 injections... I was told to take them every other day for two weeks and then once a month or earlier if I feel symptomatic so I think once every two months may be too little, personally speaking. I've had three rounds of shots and have found that my pins and needles, eye floaters and joint pain have all reduced... these were things that I had initially put down to my hypothyroidism but I have been without thyroid medication for a week now and feel slightly better than I did when I had it, can't believe it really. Also, I've never heard this rule that your gp has thrown out there "I can't give injections more than every 3 months"? Weird, think it might be nonsense.

Advice1 profile image
Advice1 in reply tohellybaybee

Hi Hellybaybee thanks forall your suggestions much appreciated i forgot how i was tested forPA i think it was ferritin and folate that were ok levels

presumably but the GP does aknowledge low B12 if nothing else but throws in we are all different and low to somebody may be normal to others ,but i find that a weak explanation altogether .

thanks for your time and support.

fbirder profile image
fbirder

Your pins and needles are of neurological origins. Tell your doctor to get out his copy of the BNF and to read past the first paragraph. The first one says 'every three months' - for those without neurological symptoms! The second paragraph says 'every two months' - for those with neurological symptoms! For some strange reason many doctors find that second paragraph invisible until.

He might say that it only applies to those with PA and that you don't have PA. How does he know? Even if you've been tested for anti-IF antibodies - that test gives false negatives half the time.

Advice1 profile image
Advice1 in reply tofbirder

Hi fbirder

thank you for the advice and support

I will get the GP to look at the BNF paragraph although the last GP i saw i did write to them explaining this paragraph which must of been invisible as it was ignored by them .Could i ask you where i can see PA levels on a FBC would it be? Or is it the ferritin folate level in a separate test?

fbirder profile image
fbirder in reply toAdvice1

PA is tested by looking for the antibodies I mentioned above. But that test is terribly inaccurate. It cannot be used to rule out PA if it returns a negative result. It has to be specifically ordered, it's not part of a FBC.

Advice1 profile image
Advice1 in reply tofbirder

Thanks for your reply would i be right in saying

i had the Intrinsic Factor test that the GP explained no PA from result so you think this could be unrealiable test .Given my symptoms.

I would appreciate your helpful advice

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