Return of symptoms : Hi All I've just... - Pernicious Anaemi...

Pernicious Anaemia Society

32,441 members23,719 posts

Return of symptoms

Alfabeta profile image
5 Replies

Hi All

I've just had my third booster jab and I have noticed that soon after I tend to get my symptoms back. Is this usual and if so does anyone know why?

Chris

Written by
Alfabeta profile image
Alfabeta
To view profiles and participate in discussions please or .
5 Replies
Gambit62 profile image
Gambit62Administrator

Hi Chris,

how quickly to the symptoms return ... and have you tried discussing this with your GP?

It certainly isn't unique for symptoms to return well before maintenance shots are due. There doesn't actually appear to be any scientific evidence supporting 3 monthly maintenance and when hydroxocobalamin was first introduced maintenance was monthly.

most B12 is removed quite quickly from the blood via the kidneys and passes out of the body in urine in the first 24-48 hours. The rate at which this happens varies from person to person (and slows as the levels of B12 in your blood get less). So may be that your kidneys are just really efficient at removing B12.

Getting B12 into your blood is only one step in metabolising B12 - it needs to get from your blood to your cells and then when it is in the cells it needs to be used used - that's 3 major steps and things can go wrong at all 3 - you definitely have a problem with step 1 which is why you have shots. High serum B12 can kick of another problem as some people react to high serum by stopping the transport to cells - the most effective way of treating this seems to be keeping levels so high that there is still enough B12 to get through (like building a dam but still needing water upstream - you need enough for the water to trickle over the top of the dam). So, may be that this is what is going wrong for you.

Things going wrong at the cell level are more to do with levels of other vitamins and minerals - folate being particularly important.

Alfabeta profile image
Alfabeta in reply to Gambit62

Thank you for your response. Speaking to the GP is pointless - he is antagonistic when I've spoken to him. I am a vegetarian with a very good diet hence I think I should have high folate levels. I had my injection on Thursday and had a mild attack on Friday. The last injection I had three attacks in one day several days after.

I can usually go about six weeks without any further attacks and then they tend to accelerate.

I do take a daily supplement b12 and I also use a sub lingual spray so I am putting quite a lot of b12 in.

My attacks are a sense of my body coming over in a sort of pins and needles a semi consciousness occurring and a hearing of confused sounds and a sense of hallucination at an auditory level. The latter has reduced in frequency.

Thank you for your response it's reassuring to know that one is not alone which is how my GP makes me feel.

Chris

Gambit62 profile image
Gambit62Administrator in reply to Alfabeta

its a long shot but I am assuming that you use methyl to supplement - have you tried swtiching to hydroxo or cyano- high dose tablets are available but not so easy to come across - but a range comes from detoxpeople and probably from others.

There is one genetic variation I've come across - COMT - where methyl can upset the balance on the processes that recycle neurotransmitters - both those working on the signals from nerves to brain and also the signals inside the brain sending it into overdrive - which sort of sounds as if it could be the sort of thing that you describe.

It may just be that you need a bit more time to adjust to things if the problem is getting better with time. Lots of people experience headaches when starting to use methyl so it could just be your person version of that - know that I used to get headaches from supplementing methyl but that this rarely happens now.

Alfabeta profile image
Alfabeta in reply to Gambit62

Thank you for your help. I do have 1000ml tablets bought from holland and Barrett they are cyanide based but I was avoiding their use because of the cyanide. How often should I take them?

Bless you and the other administrators for the help and reassurance you give to so many

Gambit62 profile image
Gambit62Administrator in reply to Alfabeta

the 'cyano' in cyano-cobalamin is very tightly bound to the cobalamin and it is actually very difficult to separate the two - the main reason why hydroxocobalamin is recommended as a treatment for cyanide poisoning as it is really attracted to the cyanide becoming cyano-cobalamin.

You shouldn't use cyano-cobalamin if you have leber's syndrome though - but that is quite a rare condition - as it can lead to blindness - smoking would also be a no-no because of the trace amounts of cyanide in that.

Use it as if it as you feel fit - few times a day isn't going to be a problem.

Not what you're looking for?

You may also like...

Return of symptoms

Hi all. I've been having injections for six weeks now, and have been very pleased with how my nerve...

Return of lost symptoms..and new ones!

I've just had my ninth injection (I've also been on 5000mcg methylcobalamin sublinguals for 4...

b12 injections reaction? return of old symptoms? another deficiency?

Hi So a couple of years ago i was unwell with depression anxiety rage mental confusion,...

How long after stopping injections do symptoms return?

Sorry I've been such a pest lately, but I'm sort of at a precipice here. Per my other recent posts,...

Symptoms of b12 deficiency

Hi! I was put on metformin because of my pre diabetes. Two months later I developed severe leg...