Hello all.

I'm concerned about my daughter whos b12 blood test came back as 148. The GP approved loading doses over two weeks, the GP said after the loading doses she will be okay for another two years,! She was also put on iron tablets and is also taking the appropriate cofactors, and is still feeling poorly. We have since discovered from this wonderful forum that really she should still be having injections until she feels better, but we know the GP will not allow this. We have thought about going down the the SI route but have concerns that when she has her bloods tested in 2 months they will be to high, and the GP will have an excuse not to carry on treating her , if he decides to treat her at all, after the comment he made about being okay for 2 years! My question is seeing her so poorly should we just SI , or take a chance and wait for her next blood test? I hate seeing her so poorly, when I feel great after loading.

5 Replies

  • You need to tell the doctor that your daughter needs to be treated according to the guidelines in the British National Formulary - - Your doctor will have a copy.

    At a minimum this means she should be getting injections every three months. If she has neurological symptoms (the most common is numbness/tingling in fingers/toes) then she should have loading doses until there is no further improvement (Not until completely better as some symptoms may be permanent) followed by jabs every 2 months.

    Continuous monitoring after injections have started is pointless -

  • Thank you, we have an appointment on the 10th August, I will take the recommended ateacher links with me.. she doesn't seem to have the neurological symptoms as stated. But bad palpitations, foggy, and exhaustion.

  • SI is an option if you can't get the GP to listen - hope that the materials fbirder has supplied help.

    The chances are that resting in 2 months would result in a high reading even without any further supplementation through SI so SI may be less of an issue than you fear. To be honest - and it's in the papers - test is not significant after loading shots unless it shows a low result.

  • hello I am in a similar position. My son has gastric problems and fatigue, a Blood test revealed b12 at 129 ferritine at 10. As I have PA they did an endoscopy which revealed two ulcers but no PA and no antibodies. Doctor is confused. As I breastfed my son I understand he can have low le els of b12 since he was born as I didn't know I had P A. This explains his poor sleep patterns and also his hyperactivity (yes This seems contradictory but it can be a cause of ADHD). He was given one oral dose of 1mg of B12 for 6 weeks plus iron. His readings after treatment were 156 b12 and 21 iron. Hardly budged. So I took the plunge and gave him 1000 mcg of sublingual b12 for two weeks. He has has a Blood test This morning so I'll know today if it has worked. I have an appt in Sept with the specialist and I may have some explaining to do. BTW my son is 13. I Just can't accept That he should suffer until the ne t appt comes up. Do You have PA? If You also breastfed your Child this may explain the low levels. Best of luck.

  • If you already know your GP will not allow more frequent injections lolabear, in spite of the BNF recommendations, I personally would SI as few GPs understand the symptoms of PA/ B12 and are only looking for anaemia and large red blood cells, which is the last stage, may never appear, or be masked by high folate.

    Here are more links in case you haven't already seen them and want to write or show your GP:

    Cmim/BMJ document. " Summary:

    * Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

    * There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

    * There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

    * If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    *It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

    The above BMJ research document is supported by many research papers and is peer reviewed. It also states (bottom of page 4 under 'How is Response to treatment assessed' )that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters:

    ****"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required."

    " Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover. Therefore it is essential that patients are no longer exposed to the real danger of irreversible symptoms because of the imaginary fear of overdosing."

    "After a year: The need for quick and correct treatment is emphasised further by the fact that after a year of treatment only 4 % of patients are fully recovered. Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately."

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