B12 re-test after shots

[andy109]

How many days after taking b12 shots should I re-test for B12?

[fbirder]

Never.

Once you start injections blood tests are pointless. Your levels will be high.

As the British Committee on Standards in Haematology puts it -

Maintenance treatment for patients presenting without neurological deficit is with hydroxocobalamin 1000 lg i.m. every 3 months. Those with initial neurological deficit should receive hydroxocobalamin 1000 lg i.m. every 2 months. No further testing for cobalamin levels is required.

onlinelibrary.wiley.com/doi...

[andy109 in reply to fbirder]

So how do I know if I still require shots or the symptoms that I am experiencing are indeed related to b12 deficiency?

[fbirder in reply to andy109]

Do the B12 injections alleviate some symptoms? If they don't then it's unlikely they're caused by a B12 deficiency.

[Badboybob in reply to fbirder]

Can I just clarify then that if after loading doses symptoms have not improved shouldn’t more doses be given as per BNF guidelines? If you are saying that if B12 shots have not improved symptoms then it’s not down to B12 deficiency I’m confused. I’m in this position so interested.

[andy109 in reply to Badboybob]

I have been taking b12 shots once a week and do experience improvements after the shot. The improvements wear out in about a week. However I wanted to retest my b12 levels to ensure I really have B12 deficiency. My concern here is that do I have to wait for months after taking last shot before I can retest?

[fbirder in reply to Badboybob]

The BNF guidelines do not say that injections should be continued if symptoms have not improved, but that they should be continued until they no longer improve. If there had been no improvement at all, then there is no longer any improvement.

If the injections do nothing, then it’s quite likely they will continue to do nothing.

[Badboybob in reply to fbirder]

Thank you. Would you expect to see improvement after loading doses then? Mine have been minimal and have severe neurological symptoms but have to wait 3 months now.

[fbirder in reply to Badboybob]

I'm not sure how quickly neurological symptoms respond to treatment. My neuropathy isn't caused by B12 deficiency, so it didn't respond at all (in fact it got worse).

[Hambledonia in reply to fbirder]

Hi fbirder, I always follow your posts with interest and hope it isn't too cheeky to ask what your neuropathy is caused by if it isn't Vitb12 deficiency? I have pins and needles to the side of my shins and they seem to be alleviated somewhat by my injections (currently every other day) but they keep coming back so I wondered if maybe they are due to something else. I wondered therefore about your recent post.

Thank you.

[fbirder in reply to Hambledonia]

I have a couple of books on Peripheral Neuropathy and I’ve had long chats with two neurologists. My neuropathy is ‘idiopathic axonal neuropathy’.

My top neurologist said that, whatever causes it, it is fairly common in tall people in their late 50s. The last time I said it was caused by being too tall (I’m 195 cm) I got sneering responses. So here’s a link to a paper about it... academic.oup.com/aje/articl...

Oh, and it’s an autoimmune disease, like PA.

It started a few months after I had my PA diagnosis with slight numbness in my big toes. Over the next few months it got quite rapidly worse. I got started on gabapentin for the pain and referred to a neurologist.

My first neurologist was stumped, which is why I got referred to a specialist in London.

By the time I saw him I had no feeling at all for light touch in my feet. I still felt pain though, so stepping on something like a frozen pea was very painful - most people feel it first, and reflexively lift up. I don’t feel it until I’ve put my full weight on it and the pain receptors kick in.

I also have no reflexes in my feet and ankles, which makes me very unstable when trying to stand still. Plus I would get electric-shock type pains in the evening/night. Sometimes I needed codeine to sleep. But those pains have almost disappeared since I started on alpha lipoic acid.

I’d read one of my books before I went to London and I was terrified as to what it might be. Guillian-Barré syndrome seemed to fit some of my symptoms and sounds quite unpleasant.

So I was relieved when I was told that my neuropathy wasn’t going to carry on getting bad at the same pace. It will slowly deteriorate, but over decades, not months.

Since then his prediction has come true. The numbness in my legs has stopped mid-calf and that in my fingers seems to have stopped at the second joint of the fingers. So much better than what I’d feared.

So, that’s my story.

[Hambledonia in reply to fbirder]

How fascinating and thank you very much for telling me your story. I wish you well with your continued recovery/ health.

My pins and needles in my legs don't hurt but they come and go still inspire of the injections every other day. I think I will just have to be patient as I am really only a month into the treatment and at least I no longer seem to have the load vibrations that seemed to accompany the feelings of numbness and pins and needles.

All the best.