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Help, scared...just been told I have severely low B12!

Posted , 4 users are following.

louisegemmins13
louisegemmins13

Hi can anyone help please? I had some blood tests done last week because I was having dizzy episodes, severe tinnitus and moderate weakness/numbness in my arms, hands and pins and needles in my feet.

I phoned my surgery on Friday for the results and they said I needed to book and see the doctor because my B12 levels were "severely low". I asked what the figure was and they said 78.

How severe is this number?  must be honest I'd never heard of B12 deficiency. Now I have to wait 10 days for the doctors appointment and my mind is racing. The numbness and weakness on my arms and hands is quite bad. I want it sorted now not 10 days. Is this damage permanent?

I'd love to hear from anyone who has experienced these symptoms and can provide reassurance! 

0 likes, 5 replies

5 Replies

  • jeanp
    jeanp louisegemmins13

    Posted

    Hi Louise,

    I can understand your panic, but symptoms  due to low B12 arereversible, and if you can get the B12 injections you will very soon start feeling better. However, if you are getting neurological symptoms (and pins and needles can be one of these) you should get injections as soon as possible, so I would ring your doctor and ask if you can be seen sooner than ten days.

    The Pernicious Anaemia Society website has a lot of informatio about low B12 (it isn't necessarily PA in your case, but your level is quite low.) Also Phoenix Rising which is mostly about chronic fatigue syndrome, but they have good info about B12.

    Are you in the UK? The NHS has guidelines about treatment for low B12; if you have tingling and pins and needles, you should be able to have B12 injections until you show no more improvement. The old forum on the Pernicious Anaemia Society website has a lot of info and links (you don't need to sign up to the society to look at this.)

    I hope you get treatment soon and start feeling better; I had low B12 earlier this year as well as low iron and it really wiped me out. But am feeling MUCH better since some supplement, so take heart. The injections sting a tiny bit but are soon over and make you feel so much better!

    Jean

  • anita14297
    anita14297 louisegemmins13

    Posted

    Hi Louise ,sorry to hear you have not been feeling too good.The symptoms you are experiencing are classic signs of B12/ Pernicious anaemia defiency.About 3 years ago i was diagnosed with this defiency and had become very ill over some time and was experiencing same symtoms as you plus more.Your count of 78 is very low as was mine at the time iof diagnosis and mine was 149.so i guess you have been feeling not right for some time.The good news is that it can be treated with B12 injections but as yours is so low you will need loading doses to begin with and then regular injections usually foe life depending on whether or nor your defiency is diet related or not.The guidelines are usually after loading injections then 3 monthly injections but this is not usually enough for most people to ease symptims but you will know how you feel after treatment starts.I have mine every 8 weeks.Unfortuneately a lot of doctors dont seem to knowledgeable on this defiency.There is a very good support group if you look up on web called B12,defiency, New beginnings this will explain all you need to know.If you would like to know more feel free to contact me.Best wishes, Anita
  • bluemaran
    bluemaran louisegemmins13

    Posted

    Don't be too alarmed, this is usually straightforward to treat. You don't say how old you are. Have you been diagnosed as iron anaemic in the past?

    I believe I am right in saying that if your level is below 190 you should received injections immediately (usually 6 over a period of 2 weeks). If between 190 and 500, tablets may be prescribed instead.

    But to some extent, this will depend upon the cause. There is little point in prescribing tablets if you are not able to absorb B12 because - for example - you have true Pernicious Anaemia. In that case, you will receive regular jabs for the rest of your life.

    But there are several other possible causes (you are not a vegetarian or taking other prescription drugs, by any chance?). The important thing is to get on the jabs, while your GP arranges a variety of tests to ascertain what has caused the deficiency. As this can run into many months of testing, the jabs should be given immediately.

    I agree with jeanp, see if you can get your appointment moved forward, and ask for the first jab during that appointment. I had similar low levels, and found I started to improve within 3 weeks of the first jab. I'm 58.

  • louisegemmins13
    louisegemmins13

    Posted

    Thank you everyone for your comments, very reassuring. When I saw the normal level was 200 and mine was 78 I couldn't believe they were making me wait 10 days. I will definitely phone on Monday (tomorrow) and ask for an emergency appointment. 

    I am only 26 years old. Yes been having some symptoms for about 6 months but the numbness and weakness started a couple of months ago. It came and went but now it's pretty constant. No I have never been diagnosed as iron deficient in the past. In fact I've never had any health problems at all before this.

    I read somewhere that neurological symptoms were often irreversible so that worried me but hopefully treatment will help! All your comments have helped, thank you! 

    • anita14297
      anita14297 louisegemmins13

      Posted

      Hi Louise, in reply to your last message different areas have different reference ranges as to the level that is considered normal for b12 levels but yours is very low as you will see if you ask your GP the range for your area.You also need to know your folate and ferritin levels as these need to be a good level to make better use of your b12 all need to work together.Also need to find out why you have this defiency.I have Pernicious anaemia so am unable to absorb b12 from diet which is to do with the intrinsic factor so hence injections for life.GP will have to check whether this is so in your case.This all may sound very confusing to you right now but do look at the support groups and you will learn so much.Also 10 days for you to wait is ridiculous so i would ring back asap and get your first injection started and then loading doses .As i said earlier GPs do not seem too knowledgeable on this defiency so really would advice to do your own research so you can present to GP.Meant to say to ask GP what your MCV level is which is the size of your red blood cells if MCV is high shows enlarged blood cells indicating Pernicious anaemia.Good luck
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