Seeking help for latest GP appt - anyone else had 'normal' b12 levels?

Hi all

I'm feeling increasingly awful, dizzy spells, chest pain and legs so weak I'm struggling to climb one flight of stairs. Tingling, numbness and exhaustion.

This is despite SI a week ago with no improvement. Also started taken folic acid just in case though do eat a healthy diet.

OH has had enough and taking me to GP on Wed. But what can I go with?

On 12 week injections

Last blood test before last injection 8 weeks ago was 'normal' at 475. IF negative. So GP refusing to do anything.

Anyone else had 'normal' b12 levels but severe symptoms? What happened?

I've 2 young kids and a full-time job and struggling beyond belief to cope.

Thank you fellow suffers

4 Replies

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  • Should add levels fell from 1100 to 475 in 8 weeks after loading doses.

    GP also said this is 'normal'

  • Hi Sharon75. It took years of treatment, with my injections rate having had to be stepped up twice, and a good deal of nerve death in my feet besides, for me to feel better and start getting appreciably better.

    Those "normal" reference ranges for serum B12 are for "normal" people, for one thing -- not of much if any value for persons in B12 treatment unless deficiency is clearly indicated. The best indication as to the sufficiency of your treatment is how you are feeling. Feeling better is good. Since any improvement might come only very slowly, not feeling any worse can be good. Either might indicate adequacy of treatment.

    I am so sorry you are suffering so and that this terrible illness is further complicating your life. Many of us members here have and/or have had the same frustrations -- suffering from the disease and its effects, and also having to suffer even more, and needlessly besides, from Doctors' ignorance, insensitivity, and closed-mindedness.

    Please, you and your OH read through this recent thread linked here, the responses thereto, and the pertinent material linked there__

    healthunlocked.com/pasoc/po...

    I believe you need a different Doctor. If you are comfortable doing so, if you would indicate your general locale, that might help others who might be able to recommend to you a better Doctor in your area. In the alternative, you might wish to (join and) contact the Pernicious Anaemia Society about your difficulties in getting your condition effectively treated. The wonderful folks there might be able to recommend to you a more knowledgeable Doctor.

    (((Hugs)))

  • Also see and print out the guidance in the materials to which Administrator Gambit62 has linked in this thread linked here__

    healthunlocked.com/pasoc/po...

  • not sure that there is a normal with B12 - just averages that may or may not be applicable to an individual.

    IFA test is prone to false negatives about 50% of the time - so definitely doesn't rule out PA.

    There are different regimes for treating a deficiency caused by an absorption problem if you have neurological symptoms.

    Hope that you manage to get the GP to listen - and may be look into an MMA test as a guide to what is going on with B12 and whether your cells have enough - unfortunately the serum B12 levels really don't mean much after you have had loading shots unless they are low and to me they look low for someone who has had loading shots 8 weeks ago.

    The shots put a lot of B12 into your blood and most of it gets removed quite quickly by your kidneys and passes out in urine but then the rate of removal starts to tail off (rate of loss depends on how much you have in your blood) - people vary a lot in how quickly their kidneys remove B12

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