Dosage & Level Question-live in USA - Pernicious Anaemi...

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Dosage & Level Question-live in USA

Jnelson123
Jnelson123

Hi all, looking again for some advice... I calculated what my b12 level is in UK terms (at least I think I did using a conversion rate) and it was 112 at diagnosis. 152 in US which is well below “normal” range. I only get one dose/injection per month and have had 2 injections. My symptoms are slightly improved but still here and the NAUSEA is crazy! Again, starting to doubt the nausea is from this and making appt to see a gastro. Could I still have nausea if other symptoms have improved... also, the nausea started a couple weeks after diagnosis and after my first injection. Just had head ct and clear and waiting for brain mri results for headaches... headaches seem to have improved but this nausea!!!! I am wondering if you had a level of 112 in the UK what the treatment frequency would be?? I am desperate for answers... also feel like constant phlegm in my throat and wondering if that may be causing nausea... sorry for my long post... thank you in advance for any replies!

3 Replies
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clivealive
clivealiveForum Support

Hi again Jnelson123 did you get your Folate level checked as I suggested a couple of days ago?

Here in the U.K. the start of treatment of B12 deficiency is "loading dose" injections of hydroxocobamalin 1mg every other day for two weeks - - or - - until there is no further improvement in neurological symptoms and then maintenance injections every 8 or 12 weeks.

I don't know the protocol in the U.S. but I'm guessing that you have been given two cyanocobamalin 1mg injections four weeks apart which is what it used to be here in the U.K. 46 years ago when I first got treatment for Pernicious Anaemia - which is a form of B12 deficiency. To me these are not the "loading doses" necessary but rather just the "maintenance doses".

Is it possible for you to ask your doctor to increase the frequency of your injections?

Please remember I am not a medically trained person.

Tauri02
Tauri02
in reply to clivealive

I am in the US and was diagnosed with PA in 2000. When my levels are low, my general practitioner and hematologist have me do b12 injections for seven days then weekly. They then check my levels after three months to make sure my levels have improved.

clivealive
clivealiveForum Support
in reply to Tauri02

Do you have "weekly" or "monthly" injections all the time or do they stop for three months for you to be re-tested?

I started having cyanocobamalin injections every four weeks 46 years ago but in recent years have found I need them more frequently so now have them every three weeks.

It is important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

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