Can you have too much?

I was diagnosed with PA, last summer, ive also more recently been diagnosed with Hasimotos, but the endocrinologist has now stopped my 3 monthly injections saying my b12 levels are now fine. To be clear I also showed intrinsic antibodies and megoblastic anaemia so no doubting PA, and very b12 at 70 initially. I already feel 3 months is a wait between injections, I'm now on six months...can I object? I'm just tired...

7 Replies

  • PA is for life and so should the treatment be!

    Have a look at our Pinned Posts on the homepage of the forum.

    In here you'll find two articles on testing B12 during treatment and that there is no such thing as 'too much'

    Also have a look in this topic:

    lots of links and info there as well.

    Print some scientific info for your GP, add the Guidelines, and insist on immediate restart of treatment, preferably again starting with a loading dose. If you are a member of the society you can also call the office for help.

    Insist, insist and insist. Or find a GP that has more knowledge.

    In short:

    - Treatment for PA is for life, injections should NEVER be stopped

    - the B12 level during treatment gives no information

    - there is no 'too much'

  • You can never have too much B12, anything that your body doesn't use is excreted in your pee, with the injections that is. You can't store it anymore, that's why you have PA.

  • PAS-Admin has already covered the relevant stuff. This is just to make it easier to get to the relevant bit.

    Download my summary - - and the BMJ paper linked to therin. Highlight the key paragraph -

    In irreversible cases, for example, pernicious anaemia, the treatment should be continued

    for life. For temporary causes, such as pregnancy, the treatment can be reviewed when the patient is fully replete and the causative agent removed

    - and give it to your GP.

    It also says -

    Cobalamin and Holotranscobalamin levels are not helpful because they increase with vitamin B12

    influx regardless of the effectiveness of treatment, and retesting is not usually required.

  • Personally i think 3 months is too long to wait. I inject at least twice a week. I supplement with sublinguals everyday. I know I'm low by muscle weakness and fatigue, my moods, apathay and feelings of discnnection...i also get "the sighs". I must tell you that i spend at least 2 houts at the gym everyday between cardio and weights. For me, Activity makes a difference in how much B12 i need to keep feeling 'normal' energy levels.

  • Yet another Endocrinologist that does not understand the links with auto-immune illnesses. What a scandal - he should not be allowed to get away with such unprofessional behaviour.

    When you are up to speed with your B12 injections I would be inclined to send a polite letter pointing out all the helpful information above in case he does damage to another patient. Does he not know the meaning of the word Pernicious ?

  • Thanks people, I rang my gp and although I did point out the facts above she did defend the endocrinologist saying if my b12 levels were high they have the 'option' to suspend injections. She did however agree I could have one now after 6 months although she initially requested a blood test first. When I cried and said I was symptomatic she backed down though and I've now had an injection. It has made my scared of having 3 monthly blood tests though in case this happens again. Only positive is that I don't have to see the endocrinologist again as after diagnosing me he discharged me back to my gp saying he didn't need to see me again

  • Learn to self's easy. I have a Rx for syringes and B12 (1 ml cyanocobalamin) the nurse at my GP taught me how. I also have the most amazing GP that listens and respects.

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