Well now I'm confused...

[Hercules1969]

I have just had my last loading dose. Still getting thoroughgoing vibrations/tremors. I saw my gastro guy today who airily said "oh 192 is borderline I wouldn't even bother with the injections for that. You need to see your GP about your nerves". This is not a development I needed...

[clivealive Forum Support]

Hi Hercules1969 It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having injected starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you can get to see a doctor please also ask him/her to check your Folate level.

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.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

[Hercules1969 in reply to clivealive]

Cheers dude. My folates are 3.8 whatever that means. They tell me it's fine. I am more bothered about the dismissive gastro guy.

[KimberinUS in reply to Hercules1969]

As much as the gastro guy being dismissive is irritating and ridiculous, your folate being 3.8 isnt great, especially if that was the reading prior to injectiins.

B12 injections will start methylation (healing/functioning) and that process uses folate.

So by now you might be deficient instead of borderline. My tests show a range above 5.4 as sufficient and my last test showed >24 so there is a large amout above sufficient.

With a b12 deficiency i have learned to be the informed one concerning my health and will dispute nonesense like your gastro spouted off, while still making sure i get all the cofactors needed.

Best of health

[Hercules1969 in reply to KimberinUS]

Cheers. The nurse who administers my injections tells me 2.0 is their base for folates. They tell me they will now test me in 8 weeks with another jab 4 weeks later.

[clivealive Forum Support in reply to Hercules1969]

The plasma folate level varies by age, as follows : Adults: 2-20 ng/mL, or 4.5-45.3 nmol/L. so your reading at 3.8 "whatever that means" is either at the bottom end or deficient - depending on which scale was used ng/ml or nmo/L.

[Hercules1969 in reply to clivealive]

It sounds like they aren't going to budge easily but we shall see about that next week.

[Gambit62 Administrator]

if I was you I'd just shrug off the gastro's comments as evidence that they aren't a specialist in B12.

Whilst PA is an absorption problem which affects the gut, the effects of B12 deficiency operate on a cellular level and are very varied because of the number of processes which use B12 to help them run efficiently. As a result its effects cut across a large number of specialisms and it tends to suffer as a result - general awareness (often with a number of misconceptions) rather than a good all-round overview.

[Hercules1969 in reply to Gambit62]

Thank you person. I will just be glad to see the back of the tremors. It is becoming exhausting.

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The vibrations are so very strange. I had them for several years, both before and after beginning B12 injections. At first I thought it was something to do with the coal mining works under our home as there are several now defunct pits around us, then it felt like a heavy train rumbling along so could have been the steel works at the bottom of the hill and finally I was sure I was acting like a sensitive earthquake warning device when some significant events happened around the world a day or so after me having vibrations. (My grandson, who is studying geography at university thinks I am truly crackers.) It always seemed to happen when I stretched out on our very comfortable sofa and was a sort of quivering all over, very gentle though and with a distinct fluttering just under my collar bones. During the past 6 months they have stopped (there have been several earthquakes around the world as well so that theory is out of the window) and I am hoping it is because the repairs to whatever has been damaged by the B12 deficiency have solved it.

With the help of this forum and internet researches I am convinced most GP's are about the equivalent of snake oil salesmen when it comes to B12 deficiency; they trot out the injection every 12 weeks mantra and know they are as safe as houses if anything goes wrong as they are within the drug license rules. If the injections work then I will keep on doing them and so far that has worked very well for me.