B12 and folate deficiency

Posted , 5 users are following.

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

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  • 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
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  • Posted

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

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    • 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

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    • 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. 

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  • 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.
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  • 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.
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