B12 loading doses stopped

[Ajane]

Hi Everyone,

Having had 10 loading doses & my bloods only rising to 395, my neurologist suggested I had another 6 loading doses pending other tests he ordered, as my symptoms had not improved. However, the blood test he took showed my level had risen to 2000 & he said that having further loading shots would therefore make no difference & told my GP to give me monthly injections, rather than every other day. Would you all agree with this?

I'm trying to get all my facts together before my follow up app with the neurologist as I'd really like to get my life back from this horrible condition.

Thank so much - it's reassuring to be able to get sensible advice here 😊

[clivealive Forum Support]

Was your Folate level ever checked Ajane and are you still having neurological symptoms?

[Ajane in reply to clivealive]

Hi Clivealive,

Yes, my folate level was ok & I am having neuro symptoms, which is why I was referred to the neurologist, who 'seemed' to know what he was talking about. Waiting for results of MRI, nerve conduction tests & MMA & homocysteine levels.

[Ajane in reply to Ajane]

Sorry, just read the "still" in your post.

I had the first 3 loading doses he requested before they pulled the plug on them. While I was having the loading doses, the pins & needles & numbness pretty much disappeared, but they have returned after a few days without injections.

I think I may have just answered my own question !!!

[Polaris]

You could print out and show neurologist the following extracts from the BCSH guidelines and latest research, as once B12 injections have begun, measuring serum B12 is irrelevant:

page 4 of the latest BMJ research document below:

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required".

cmim.org/pdf2014/funcion.ph...

Also:

BCHS guidelines:

‘Standard initial therapy for patients without neurological involvement is 1000µg intramuscularly three times a week for 2 weeks. The BNF advises that patients presenting with neurological symptoms should receive 1000µg i.m. on alternate days until there is no further improvement’.

Patients with Pernicious Anaemia need treatment for life regardless of serum cobalamin levels.

Good luck Ajane

[Ajane in reply to Polaris]

Thank you - I will.

[potter5]

Hi Ajane, the reading of 2000 is meaningless after loading injections. It only shows the b12 in your blood and not what is getting to the cells. It is your symptoms that need to be treated. I was diagnosed last June and after seeing a Neurologist in September have been having 2 or three injections weekly. One of these from GP others self injecting. Also take sublingual if I feel I need to. After three days my neurological symptoms which have never completely gone away get worse. As suggested take a copy of the guidelines to your appointment, and I think making your neurologist aware of your returning symptoms would be prudent. Best wishes.

[Ajane in reply to potter5]

Thank you. It's useful to know your experience & I will take all the written evidence with me.

I have made the neurologist aware, but he is unwilling to reinstate the injections until my MMA & homosysteine results are back. Shouldn't be too long to wait now.

[potter5]

I hope all goes well for you Ajane.

[Mandlou]

Ive read people needing ut for 13 weeks once a week before improvement ...

[Ajane in reply to Mandlou]

Yes, I've a feeling i may be one of them. Am biding my time until I have the follow up neurology appointment & all the test results & then hopefully have some regular injections. I've had 13, but they've been sporadically spaced. Once I've got through the medical investigations, I also intend to get proactive with trying nasal spray/patches & sorting other supplements etc.

Thanks for your response. It's an encouragement 😊