low b12 not yet diagnosed

Posted , 4 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

On March 2nd I had b12 checked and results came back 166 with normal range 191-663. They were rechecked on 12th March and were down to 142. My symptoms seem worse but not sure if this is psychosomatic. My concern is I can't get to see doctor until 30th March to discuss results, get a diagnosis then start treatment. If my levels continue to drop at this rate I am concerned whether i will be able to continue to work. I know it isn't a long time to wait but wonder should i try to get an emergency appt in order to get diagnosis and possibly start treatment sooner. Thanks in advance for advice

1 like, 11 replies

Report

11 Replies

  • Posted

    Are you receiving treatment for anything else that would explain the sudden fall and repeat testing?  Could other medication be part of the problem?
    Report
    • Posted

      The only medication i take is hrt. I went to doctors at start of month due to fatigue and requested testing for under active thyroid due to strong family history. Dr decided to include b12 test ,thankfully as thyroxine levels fine. I assume he rechecked as matter of course? ?
      Report
  • Posted

    Could be.  Like all blood tests, you can get false positives and false negatives, as well as general variations.  He's probably just making sure that the first test was accurate, or looking for other indicators.

    Anecdotally, I felt exhausted and, due to my age and periods stuttering, assumed it was the menopause, so didn't complain for ages.  When I finally went, my then good GP took blood tests, and found B12 and ferritin deficiences.  She retired the following week.  I struggled to get B12 jabs from her successor, who wanted to focus on sending me for Gastro/Endoscopies (basically looking for stomach cancer), even though I had absolutely no other symptoms of this.  When I finally persuaded her to let me have B12 jabs and iron tabs while I waited the 3 months to see a specialist (she thought, quite wrongly, that these should be witheld!) I started to feel better.  Even my periods returned!  

    I was, therefore, very annoyed when she actually suggested I take HRT: 1)  I was not yet menopausal and 2) all my symptoms could be attributed to the B12/ferritin deficiencies and 3) HRT taken unnecessarily is a waste of NHS money and possibly hazardous.  

    I too have a family history of thyroid problems, but that also tested OK.

    Do lots of online research before your appointment, plan your questions, write down your GP's answers, and ask for the readings from your blood tests.  Based on those, do more online research so you understand what's happening.  B12 deficiency and the accompanying anaemia usually have quite innocent causes, and are very easily treated.  But left untreated, they can do a lot of permanent harm.  If you understand the subject by doing research, you GP will recognise you as an intelligent patient, and will step up to the mark themselves!  Good luck.

    Report
    • Posted

      Blue mar an thank you for your comprehensive reply. My symptoms only became noticeable in November fatigue diarrhoea (sorry) and red painful tongue. Breathlessness just past 2 months. I think I'm just being impatient as I have a fair idea it's PA and know from research how easily treatable it is. I've been on hrt since a hysterectomy at 26.i will definitely arm myself with loads of information. TThanks again
      Report
    • Posted

      Marion is right - a veggie diet could be a cause.  Your doctor's early tests will not include those necessary for PA - just B12 and other general readings.   The PA tests (for intrinsic factor, etc.) will take longer to come back from the lab and, depending on the ones chosen, tend to be a bit unreliable.  Best of luck.
      Report
  • Posted

    Hi sioban03755, if you go to the Pernicious Anaemia Society website, they have a symptom list you can print out. It's then possible to tick all that apply to you, and take it with you to the Doctor. The only other thing I would mention is if you are vegetarian this can lead to low B12. Good luck with getting it sorted. Marion
    Report
  • Posted

    hi siobhan. so sorry to hear you're in this dilemma. from your history, i'd have no hesitation in requesting an emergency GP appointment. normal pathways through the GP system takes for ever i.e. more blood testing with repeated return journeys to your GP etc.

    for example some GP's tend to be test dependent in respect of b12 diagnosis. they may wait untill the results of the Intrinsic Factor (IF) or/and the Parietal Cell Antibody (PCA) testa are back before initiating treatment. i had to wait a couple of weeks for the results of the IF test & then a couple of weeks to see the GP again for treatment. they may have to do more specific tests too. with b12 deificiency the longer treatment is delayed the more organs/systems become involved. delay can cause detrimental damage to the nervous system. the faster you get in the 'fast track system' the better. this needs immediate attention.

    as already mentioned the PA society outline treatment intervention guidelines necessary for different stages of PA symptomatology. also if you google NICE guidelines they reinforce these guidelines. it's on page 6 of their info. document in the Management page. have a look. i'm sure the GP will act promptly, but if s/he seem to drag their feet, use the NICE or PA guidelines to hurry things along. hopefully they'll act on your dropping b12 levels and worsening symptoms. however, you may have to be assertive with them. don't mention the 'psychomatic' word. it's their favorite word when they want to procrastinate & piddle around. ensure also, that you have a Folate test. b12 and Folate are intricately related - mutually dependent on treatment & recovery.

    best wishes

    Caitlin.

    Report
  • Posted

    Thanks bluemaran Marion and caitlin for your responses. I'm not vegan or veggie. Bless my son he thinks he can cure me by force feeding me marmite! Lol I will definitely take all your advice and be well armed for my doctor appt. Although to be fair I think he is on the ball. I will keep you posted how I get on. Thanks again guys Sioban x

    Report
  • Posted

    Bit of an update doctor unable to give me a definitive diagnosis without further tests. They need to rule out that it isn't dietary therefore I've been given oral supplements. If after 3 weeks my b12 levels have not increased I will need a gastric biopsy to check for pernicious anaemia. Folate and haemoglobin levels normal. No increase in size of red blood cells. They don't check intrinsic factor as they believe gastric biopsy more reliable. I suppose it is just a waiting game now.
    Report
  • Posted

    Hi again sioban, thanks for updating us on your appointment. The only thing I would say is if you feel your symptoms are still worsening despite the oral meds, go back to the GP sooner rather than later! If your levels are dropping severely you will need urgent treatment. Do hope you do feel better soon. Best wishes Marion 
    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up