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B12 Defiency

shriti83 profile image
12 Replies

hi guys, i just need some advice. For the past couple of months i have had dizziness, memory loss, pins and needles, unblance, headaches, feeling full bloated,nausea constant tiredness where i sleep 11 hours a day. I also wake up tired. i had a blood test done and my b12 is 189. The doc said its almost normal and i will need 4 injections followed by injections every 3 months. when i expressed concern she said this is not symptoms for b12 defiency you have anxiety and are stressed.

i walked out in tears as she made me believe it is in my head.

my b12 is 189

serum folate is 6.2

serum ferratin is 27

please can someone advice and help is this all normal. the doctors made me believe its in my head. all my bones feel achy too.

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12 Replies
clivealive profile image
clivealiveForum Support

Hi shriti83

All three are at the low end of the scale and you should ask your doctor to possibly prescribe both folic acid and iron as these work together with the B12 you are going to have injected to make red blood cells.

You mention that your "bones feel achy too" - this could indicate that you are also low on Vitamin D so maybe you should ask for this to be tested.

I'm not a medically trained person but there are others on here who will be able to give you good advice.

I wish you well

shriti83 profile image
shriti83 in reply toclivealive

Thank you, i was upset as the docs made me believe that the symptoms are in my head. i appreciate your response

Gambit62 profile image
Gambit62Administrator

Unfortunately many GPs are totally unaware that the symptoms of B12 deficiency include anxiety and depression - many of us have had similar responses so you aren't alone. Folate deficiency is similar although you don't appear to be deficient at the moment.

shriti83 profile image
shriti83

Thank u it is a horrible feeling. i am 33 but struggling with daily activities.

shriti83 profile image
shriti83

the doctors believes its in my jead

JGBH profile image
JGBH

Hi shriti83,

Here we go again! GPs always telling patients "everything is in their heads"! The arrogance and utter lack of care. We patients should perhaps tell them they have concrete in their heads.... What are all those GPs so highly paid for? It is certainly not to look after patients' health with care....

Look at the PAS (pernicious anaemia society) website for symptoms of B12 deficiency, then tick those you have and write to GP enclosing list and guidelines from PAS, NICE regarding treatment for B12 deficiency in patients with neurological symptoms, stating you are concerned about your wellbeing. Also make it very clear in your letter that the stress is due to the fact you are feeling so ill and that your symptoms have been dismissed and that you would like to be treated according to the guidelines.

Contact Martyn Hooper - chairman of PAS, in Wales for advice. Are you a member of PAS? Might be a good idea to join if not done already.

Take care.

shriti83 profile image
shriti83

hello, thank you so much for your advice. i am not a member of PAS. when i did tell docs of PAS they said the heamoglobin and red blood test was normal again all in my head. initially when i entered tbe docs i could not balance and walk straight and the docs said yes u did not balance but this is due to stress.

Polaris profile image
Polaris in reply toshriti83

It's a misconception that you have to have anaemia, as this is normally the last stage of PA and may never occur - neurological symptoms precede this, which you have. These should be treated urgently and adequately to avoid permanent damage.

Here is the latest BMJ research document with a useful summary, (if GP won't read the whole document) that confirms this and (page 4) that the BNF treatment for neurological symptoms (also in BCSH! NICE guidelines etc) is alternate days until no further improvement.

cmim.org/pdf2014/funcion.ph...

"How is vitamin B12 deficiency treated? Timing of treatment

It is usually acceptable to start treatment within a few days of a confirmed diagnosis (box 3 summarises treatment and management). If there are neurological disturbances then treatment should be expedited and started without delay. Specialist input should be sought in the event of neurological features, including impaired cognitive state (box 4). Neurological presentation may occur in the absence of haematological changes, with early treatment essential to avoid permanent damage"

shriti83 profile image
shriti83

Hi polaris, yesterday the pins and needles got worse, the face and legs are twitching along with speech. As i was stressed 3 months ago and off work they dismissed all the symptoms of PA and said all in your head. i am extremely worried.

kirsten555 profile image
kirsten555

So sorry you've been treated like this, shriti83 - it's just not fair, is it? And the trouble is that because you're feeling so ill, dizzy etc, you don't feel able to stand up to the GP. Can you take someone in with you for your next appointment to help? I took my husband in with me to my appointment when I realised what was really wrong with me (having been fobbed off for a couple of years with everything: menopause, a virus - several times - in my head, labyrinthitis, etc etc). I don't know if it was my husband's presence there, looking concerned and ready to fight my corner, but the doctor agreed then to give me the loading dose despite thinking 'it'll just be a placebo effect' if it does work. Obviously it wasn't! Good luck - hope you can find someone to come along and support you so you don't get fobbed off again.

Cherylclaire profile image
CherylclaireForum Support

Hi, shriti83 , it seems unbelievable, doesn't it, that GPs could treat you with so little care.

I had a B12 blood test, and it was 196ng/L, the 'normal' range started at 197ng/L (different everywhere)- so I was deficient. Not 'nearly normal'..... because what WAS my 'normal'? No-one can ever be sure, because it was never tested before.

My 'normal' now appears to be stratospheric (over 2000, which is their testing limit), and still the symptoms are all there. My MMA proved to be high, and so I was diagnosed with "Functional B12 deficiency". Now also have osteoporosis, which can be linked. Now seeing haematologist and tomorrow, neurologist. It's serious and is being treated as such. Double click on my name above and you will see how I got to this stage....(with a lot of help from my friends here).

If it IS all in your head, it's all in my head too. Your GP isn't helping you or even helping you access someone more helpful.

There are a lot of symptoms charts if you google B12 deficiency symptoms: download a few of the longer ones and tick off what applies to you personally. You will recognise yourself, sometimes reluctantly- so be honest. kirsten555 is right: learn what you can cope with, without being overwhelmed, and then go back to the GP with someone you trust - especially useful if you are feeling tearful/ angry/ just exhausted. Don't spend years trying to educate your GP because teaching only works with a willing pupil !

PS: My bones feel achey too; I'm in the library feeling like I'm sitting directly on my bones. Trust what you feel. I do now.

shriti83 profile image
shriti83 in reply toCherylclaire

hi CLaire thank you for the reply. my bones still ache. i am only 33 and still in pain. still wake up tired. i rang the doctor and told them my neurological symptoms that i cannot balance and still fall asleep and wake up tired. he said yoive had one dose of b12 its all in ur head.

i have an underactive thyroid which i am on meds for, my cholesterol is high and my liver test is abnormal nilirubin is 24 but docs say its nothing to worey about. Does it ever get better?

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