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B12

Jackz profile image
8 Replies

Iv just been diagnosed with B12 deficiency with my level at 167, my GP has said she wants me to have 5 loading injections over 2 weeks I have my 3rd on Thursday but was advised by someone else with B12 definciency to insist on 6 loaders.. Do you think I should insist on the 6??

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Jackz profile image
Jackz
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8 Replies

The norm is 6, but who knows, you may feel fine with 5 or not good with 6, see how you go/ feel, athough it can take some time to feel any benefit, some feel an improvement straight away. You could ask your GP why you are not getting 6?

Gambit62 profile image
Gambit62Administrator

Difficult one - think that one of the most scary things about B12 deficiency is how powerless and at the mercy of medics (who often don't have a clue) it makes you feel.

cks.nice.org.uk/anaemia-b12...

This is the extract from the NICE guidelines

Treatment of B12 deficiency in people with no neurologic involvement includes:

Initial treatment with hydroxocobalamin 1 mg intramuscularly on alternate days for 2 weeks.

Maintenance treatment with hydroxocobalamin 1 mg intramuscularly every 3 months for life — where B12 deficiency is not thought to be diet related, or

Maintenance treatment with oral cyanocobalamin tablets or a twice-yearly hydroxocobalamin 1 mg injection — where vitamin B12 deficiency is thought to be diet related.

Now, strictly interpreted this would mean 7 loading shots but don't think that ever happens because of GPs not working at weekends. You could query how 5 shots rather than 6 fits in with the guidelines above.

Could write a long scree on how stupid the guidelines are but will resist - far too rigid anyway. I think a much more interesting question would be are you certain that you aren't actually suffering any neurological involvement as loading shot regime is quite different then.

Gambit62 profile image
Gambit62Administrator in reply to Gambit62

This is extract from 1st para on page 8 of BCSH guildelines

bcshguidelines.com/document...

Standard initial therapy for patients without neurological involvement is 1000mg intramuscularly (i.m.) three times a week for two weeks.

engels profile image
engels

I think that the ongoing treatment matters more than whether you have 5 initial injections or 6. Has your GP said what will happen next?

Jackz profile image
Jackz

I had mentioned the 6 earlier today to the nurse who gave me my 3rd jab about 6 shes going to email my GP. after treatment will be one every 3 months, im definitely feeling an improvement not so fuzzy headed and more energetic to what I was like I had become a shadow of my former self.. Still in shock to think that B12 deficiency can cause so much ill health physically and mentally but glad I now have an answer to why and treatment has started to be able to live a normal life as possiable. I don't like the injections mind!!! but ay who does! again something im willing to put up with to to be normal.

Charlotte282 profile image
Charlotte282

Not sure if this helps or if you are interested but I recently heard about a new oral prescription alternative to the injections called Eligen B12. I recently read that it works even if you don't have intrinsic factor (so even if you don't have normal gut absorption). Apparently it came out a month or two ago

in reply to Charlotte282

Its not new:

reuters.com/article/2009/10...

Charlotte282 profile image
Charlotte282 in reply to

As mentioned to your other reply; I called the company to find out what you were referring to; you are right in a sense, the name Eligen B12 was out there before, but there was an Eligen B12 100 mcg, not 1000 that was put on the market with a company called Life Extension. The company then decided because it was going to go prescription medical food that it would only develop the Eligen B12 1000 mcg and it withdrew the 100 mcg from the market so there would be no confusion. The 1000 mcg is for clinically deficient patients instead of an injection. This one was just recently launched in March, which is why I was just hearing about it...

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