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My B12 is 167ng but I have been refused treatment - what should I do?

Posted , 10 users are following.

samantha32055
samantha32055

Hi,

I am wondering if someone could please help. I have been back and forth the doctors for years with tiredness, headaches etc and have been fobbed off. However recently its become worse and I’ve been having heart palpitations, numbness and pins and needles in feet & hands as well as other symptoms and I requested to have blood tests done. My results follow:

b12  - 167ng

ferritin  - 21ug

folate - 10.3ug

Vit D - 35

I have done a lot of research on both iron and b12 deficiency and from my understanding anything below 200ng b12 is extremely low? My doctor has advised my b12 is normal and that the symptoms I have would not be related to b12 deficiency.

My doctors have put me of 200mg of ferrous sulfate tablets and vit D tablets which I have been taking for the past month but I haven’t noticed any benefits from taking them. I am also a vegetarian and have been my whole life.

I am unsure what to do as I have read b12 is hard to diagnose - any comments would be appreciated.

Many thanks,

Sam

 

2 likes, 24 replies

24 Replies

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  • marion29181
    marion29181 samantha32055

    Posted

    Hi Samantha, I am so sad to hear that your Doctor is still refusing to give you treatment. Have you tried contacting the Pernicious Anaemia Society to see if they can provide you with some evidence to support you? They may even be able to give you the name of another Doctor in your area who is sympathetic to the needs of low B12 patients. The real danger with it remaining untreated is permanent nerve damage. I wish you well and really hope you will get some help soon. The trouble is doctors are general practitioners, and so many know next to nothing about low B12! Best wishes Marion
  • caroline02087
    caroline02087 samantha32055

    Posted

    12 result of 138

    Hi i have been showing all the classic systoms of PA. Things got that bad I went to A&E on Saturday and the nurse practitioner diognosed PA and was shocked at the level of my B12 at 138. I have been back to the Drs today to follow up and my GP refuses to beleive I have PA and that my symtoms are down to the side efforts of some anti-depressants i'm on. I am very confused...can anyone help?

    • marion29181
      marion29181 caroline02087

      Posted

      Hi Caroline, So very sorry to hear your GP is refusing to believe what had been diagnosed at A&E. There are definite guidelines for treatment that GP's should be following. 138 is a low level, and if you have many of the other symptoms you should definitely get treatment. Have you been to the Pernicious Anaemia Society website, you can find more information there, plus a symptoms list that can be printed out to take and show your doctor.  Unfortunately many GP's appear to be completely unaware of Low B12 and the very real risks of remaining untreated. It is essential for every cell in the body, from enabling blood cells to be formed correctly, protecting the myelin sheath on our nerves. etc.... There is a very good book called Pernicious Anaemia, The Forgotten Disease by Martyn Hooper (founder of the Pernicious Amaemia Society). Are you vegetarian, as this increases the likelyhood of being low, or stomach problems Coeliac and Crohn's disease cause absorbtion problems? If all else fails you may need to find another doctor, who will take it seriously.

      There are also sublingual or nasal sprays and patches we can buy to help boost our levels ourselves. Lot's of us use these to top up between the injections we get from our doctors. Initially you should have loading doses of six injections over two week. This is followed by another blood test after about six weeks, to see how well your body is retaining the B12. Then the basic treatment will be an injection every three months. I do hope you can find a doctor to treat you. With best wishes Marion 

  • caroline02087
    caroline02087 samantha32055

    Posted

    Hi Marion

    Thank you so much for your reply. I am going to go and see another Dr tomorrow and hope that I can make some headway. It is reassuring to know that there are peoplewho this has also happened too.

    Many Thanks

  • margaret22038
    margaret22038 samantha32055

    Posted

    Hi Samantha, your result of 167 ng is that your total B12 like serum B12 or is that the Active B12 in your blood.

    If that's your total B12 then you have got problems.

    I had to have an Active B12 test taken which was 226 pmol/L, my total was 442 pmol/L.  If your total is only 167 I'd be interested to know what you Active B12 is.  But I don't feel healthy at this level I have had nearly all the symptoms.  My GP will not give me the Therapeutic Trial to see if I feel better.  Probably want to run me right down.

  • david62884
    david62884 samantha32055

    Posted

    Hi Sam, 

    I know far too well how dangerous B12 deficiency is!!!!

    You should be taking oral suppliments to booste it back up and if that doesn't work maybe even get it adminstered straight to the blood!

    I suffered and still to suffer with neurological symptoms like yours but worse due to Copper Deficiency... I was told I was depressed by Dr's and some thought I was making up, it took me three years of persistence to find what was wrong but whilst I was doing my own research B12 deficiency is an MS mimic and should be dealt with seriously!

    I really hope you manage to get it back up and change your useless DR.

    Regards,

    David

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