Taken off B12

[Lorraine-ann]

Hi please help. I was told I no longer needed the injection as my levels were very high and should have had my jab end of April. Since then felt really rubbish and the last week couldn’t concentrate at work and felt like I could fall asleep on the keyboard. Since Tuesday this week all I have done is slept day and night will intermittent small boost of energy. My legs feel so heavy and have sudden headaches. The tiredness comes in like a tidal wave where all of a sudden I just feel like I can’t keep my eyes open. Do you think this is because I haven’t had the injection?? This is now affecting me going to work this week!

[SC88]

Hi Lorraine-ann, having a similar issue myself. I would recommend asking for a blood test to check your levels now, and ask for a FBC - you might have other deficiencies. Book a review with your doctor for when the results will be back - as often they will only call if something flags as abnormal - you may be on the low side of the normal range and dropping.

Hope you feel better soon!

[clivealive Forum Support]

Hi Lorraine-ann do you have a diagnosis of P.A? If so B12 injections are for life irrespective of blood test results.

A lot will depend on how long after your last injection the test was done as it's possible to have B12 swirling around in your bloodstream but not getting into the cells where it is needed.

If you were being treated for a B12 deficiency due to other causes you could ask for an MMA test. Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

It is also important that your Folate level is monitored as this is essential to process 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

Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Hb. Both iron and folate may be needed.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Lorraine-ann in reply to clivealive]

Thank you for the reply. I have just slept for another 4 hours and definitely have muscle weakness but thought I was just being a wimp. I have the numbness in my arms but my legs just feel like lead weights. I have an appointment tomorrow so thank you for all the information

Best wishes to you too

[Lorraine-ann]

Thank you I do hope so x

[taka Administrator]

Hi Lorraine-ann

*Grrrrrrr* This sort of thing makes me so angry. Your levels are irrelevant after starting injections unless they come back low and the guidelines state not to retest! They need to go by your symptoms. Unless your B12 deficiency was due to a dietary lack of B12 (or a small number of treatable conditions / medications) then B12 injections are for life. My guess is your GP know very little about B12 deficiency / PA.

Those sound like deficiency symptoms to me. I sleep for Scotland, struggle to concentrate and take things in and generally feel dire when my injection is due. I've got my NHS injection tomorrow and I've struggled at work today to do some fairly basic things / do basic calculations and struggled to construct this post - I've had to correct 1001 typos which isn't normal for me. I hope it makes sense!!

Options to get help are:

- Write a letter to your GP quoting the treatment guidelines ( pernicious-anaemia-society.... ) asking for your injections to be reinstated and enclose a copy with the relevant bits highlighted. They state once B12 injections have commenced, further testing of B12 is not needed. Print out a copy of the symptoms of PA / B12 deficiency and highlight those that have returned. There is also a bunch of info in the pinned posts (to your right on a PC, somewhere at the bottom on phone) than may be helpful.

- Are you a member of the Pernicious anaemia society? They may be able to give more help (or even contact your GP on your behalf if your doctor still won't budge). pernicious-anaemia-society.... If you are a member already there is a "Treatment is for life" leaflet you can print out and give/send to your GP which may help. Membership is from £20.

- Try either the same GP, or (possibly better!) another GP in the practice. If you can take along a friend / family member who is willing to read up about B12 deficiency / PA before hand and can back you up that may help. Sadly often having a witness means the GP may be less likely to fob you off.

Good luck and let us know how you get on!

[Lorraine-ann]

Thank you makes me feel better knowing others are experiencing this as my husband struggles to understand as he is always like tigger. Going in the morning so your reply has made me better informed.

Lorraine x

[Gaudygoat]

taka has pretty much said it all but when I read this I was so annoyed I decided to comment. Basically whether you have been diagnosed with PA or not you are low either because you are not getting enough B12 in your diet which if you have anything like a normal diet, will not be the case, you are doing something to stop the absorption, such as excessive drinking or you have an absorption problem. Assuming it is not one of the first two then for some reason your body is failing to absorb ingested B12. So unless your GP has somehow magically fixed it, you should be on B12 injections for life.

Do you know what your reading was? And how long was it after your last injection?

Your B12 blood readings will be high even a good while after your last injection but for some reason that doesn't equate to the body getting the B12 it needs. It would be good if someone understood and could explain why you can have an adequate or even high B12 blood level and yet you feel terrible until you get your next dose but the fact is I have both experienced it and read it time and time again.

Good luck at the docs! And if you get no joy there is always the self injection route. It's the only reason I am still able to work and help pay to keep the NHS going.

[Lorraine-ann in reply to Gaudygoat]

Ok so bloods straight away results tomorrow but age kept saying it might just be a virus