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B12 and folate deficiency

Posted , 5 users are following.

weeclaire21
weeclaire21

Hi looking for some advice

I have recently been feeling generally unwell , extremely tired , dizzy spells, my heart rate has been fluctuating between to rapid to too slow and being very short of breath at times. My b12 and folate levels where low and I was given a months supply of medication , had levels tested again and they where normal so medication was stopped .

However this last week I have been feeling awful , and yet again levels are low and have been given another months supply. I take a high dose of acid suppressants which I believe may be causing this but does anyone else find gp quite dismissive of symptoms and not keen to treat ??

How did anyone go about deciding wether they needed regular treatment etc?

I am usually quite fit and very active so finding this so fustrating that I can't get through a full day without needing to sleep on and off

Thanks

1 like, 23 replies

23 Replies

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  • jazzyanne
    jazzyanne weeclaire21

    Posted

    hi if you have low b12 without being a vegerian the treatment should be injections for life, plus the tablets dont reach the cells where b12 is needed, plus folate should be at at good level for b12 to work
    • weeclaire21
      weeclaire21 jazzyanne

      Posted

      Thank you , everyone else I have spoke to has spoke about injections too .. Back to speak with gp this week then thanks
  • clivealive
    clivealive weeclaire21

    Posted

    I posted a quite comprehensive reply to you on another thread. If you cannot find it let me know.
  • manasa_55242
    manasa_55242 weeclaire21

    Posted

    Hi

    I have the same symptoms too constant dizziness extremely tired general feelingbof being not well.

    My b12 levels were 76.

    After few shots it went up to 2000

    But doc has advised me to take b12shots alternative days for one month then 2times a week for next month then once a week for another month then 15days once then month once.

    What are ur b12levels and do u have constant dizziness?

    I also feel like my body shakes from inside. Like I have swallowed a phone on vibrate.

    • weeclaire21
      weeclaire21 manasa_55242

      Posted

      I don't know my levels I will ask next time. Yeah have a lot of dizzy and lightheaded spells , my heart rate has been a bit erratic as well and do get that rattling feeling . Planning to make an appointment today and see how I get on .

      Thanks hope your symptoms resolve soon too

    • clivealive
      clivealive manasa_55242

      Posted

      All I have "edited out is a quotation from a book which recommends a raising of the lower threashold "from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml"

      It sounds like you have a good doctor who is up to speed on B12 Deficiency but did he/she test your Folate level?

      Testing for Serum B12 once injections have started is pretty much next to useless - unless it comes out LOW.  High levels are OK - you cannot overdose on B12 as any excess is excreted in your urine.

      Now that you have started having the B12 injections it is essential that you have a good Folate level as without it the B12 will not be processed efficiently. This is why I asked whether your doctor had tested you for it.

      As to your symptoms, it is quite common for neurological symptoms to appear to get worse before they get better but this actually can be taken as a good sign as the B12 begins to repair the damage that has been done to your nervous system.  All of a sudden the brain is being "reconnected" to parts of your body it had forgotten about.

      I am not a medically qualified person but someone who has had Pernicious Anaemia for 45 years and I'm still "clivealive" at 75.

      I'm keeping my fingers crossed that this will go through but it does make typing difficult. 

  • manasa_55242
    manasa_55242 weeclaire21

    Posted

    I am so off balance that I have stopped going alone outside. I am dizzy all the time and internal tremors have made me crazy.
    • clivealive
      clivealive manasa_55242

      Posted

      Sadly my reply to you is "waiting to be moderated".  Hopefully you will be able to read it in a short while.

  • debbyog1
    debbyog1 weeclaire21

    Posted

    What is your B12 level? Most countries treat when levels fall below 450, in UK it is much lower.  Maybe point this out to your GP.  Also have you had your heart checked?  I had similar symptoms, including tiredness having to nap all the time, I had very low iron and B12 plus I had Heart Block and had to have a pacemaker.  I am fine now and have B12 injections every 12 weeks.
    • clivealive
      clivealive debbyog1

      Posted

      Were you B12 Deficient or P.A.?

      It's good that you are able to cope with 12 weeks frequency.  There are many who can't and struggle to get additional injections because of a return of symptoms in the run up to the next one - me included.

      However, after 45 years, I'm still "clivealive" at the age of 75. biggrin

    • weeclaire21
      weeclaire21 debbyog1

      Posted

      I'm not sure what my levels are exactly I wasn't told. I had a 24hr heart tracing done a few months ago which showed odd skipped beats but other than that fine and have had a couple of ecg which have all came back normal. Have had blood samples sent away again so will wait and see what it shows this time and will ask for my exact levels ,

      Thanks for your response

    • manasa_55242
      manasa_55242

      Posted

      U might feel better after 10shots every other day.
    • weeclaire21
      weeclaire21 clivealive

      Posted

      This is low to I have been given folic acid tablets to take. Had bloods taken again and will wait and see wait these come back
    • clivealive
      clivealive weeclaire21

      Posted

      That's good as B12 and Folate go together "like peaches and cream". the B12 relying on the Folate to be processed properly.

      I've been having B12 injections for 45 years and have taken 1 – Folic Acid 400µg tablet every day for as long as I can remember in addition to the Folate found naturally in green veg and fortified breakfast cereals and my level is still in the middle of the range.

    • manasa_55242
      manasa_55242

      Posted

      Sry has the dizziness gone after the b12injections
    • jj09308
      jj09308 clivealive

      Posted

      Do you agree witth the article that B12 deficiency must be adressed first then followed by folate if both defiency co-exist based on your experiences and knowledge?  Thank u!
    • clivealive
      clivealive jj09308

      Posted

      Short answer is that Folate is "used up" processing the B12 so supplementing with folic acid is recoomended once the B12 injections start but not before - unless it is rock bottom low.

      Goodnight

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