My B12 is 167ng but I have been refused treatment - what should I do?

Posted , 10 users are following.

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

Hi,

I am wondering if someone could please help. I have been back and forth the doctors for years with tiredness, headaches etc and have been fobbed off. However recently its become worse and I’ve been having heart palpitations, numbness and pins and needles in feet & hands as well as other symptoms and I requested to have blood tests done. My results follow:

b12  - 167ng

ferritin  - 21ug

folate - 10.3ug

Vit D - 35

I have done a lot of research on both iron and b12 deficiency and from my understanding anything below 200ng b12 is extremely low? My doctor has advised my b12 is normal and that the symptoms I have would not be related to b12 deficiency.

My doctors have put me of 200mg of ferrous sulfate tablets and vit D tablets which I have been taking for the past month but I haven’t noticed any benefits from taking them. I am also a vegetarian and have been my whole life.

I am unsure what to do as I have read b12 is hard to diagnose - any comments would be appreciated.

Many thanks,

Sam

 

2 likes, 24 replies

Report

24 Replies

Next
  • Posted

    You are being fobbed off by a GP who knows nothing about B12 deficiency and is doing you serious harm. Your readings are well into the danger zone, and your symptoms are typical of someone with long term neurological damage.  More recent research indicates that you sould be seeking readings of AT LEAST 500 to function, and ideally over 1,000!  GP ignorance in the UK is widespread and probably responsible for much of what Madge on this forum called "the tsunami of senile dementia" we are now seeing.  I had the same problem with GPs myself.  Insist on injected B12 therapy immediately, or change your GP.  This really cannot wait.  Obtain a copy of "Could It Be B12?" by Pacholok, study it, then demand proper testing and treatment.  I'm horrified at your story, but it's all too common.
    Report
    • Posted

      Hi Bluemaran,

      Thank you very much for your prompt reply - Sorry to hear about your experiences too.

      I will continue to push for the injections for the b12 as I know nothing will improve without them. The GP did try and give me anti depressants before I had my blood tests done which frustrated me even more as I am very happy with my life! I agree it is down to pure ignorance.

      Many thanks,

      Sam

      Report
  • Posted

    I completely agree with everything bluemaran said, it's appalling the way doctors are ignoring this problem. I was lucky that my GP treated anything under 200.

    as you are vegetarian and have been for a long time this will have maybe caused the deficiency, but certainly made it worse.

    There are supplements available that can be absorbed under the tongue, and lots of us use these to top up our levels because we often only get three monthly injections. 

    Please see if you can get a second opinion from another Doctor, your levels are too low, and will be doing you harm. Good luck Marion

    Report
    • Posted

      Thanks for backing me up helping this lady.  Reading that excellent book "Could it be B12?", I not only learned a great deal about my own health, but I had a huge revellation.  My partner's eldest daughter, now in her late 30's, has been in worsening health (mental and physical) for perhaps 25 years.  A very bright girl, she flunked university due to depression.  This worsened dramatically with the birth of 4 children in very quick succession, some by ceasarian section.  Manic depression, paranoia, "voices" and motor problems followed, resulting in sectioning and repeated hospitalisation.  No one seemed to know why she was so ill.   Reading the section on depletion of B12 by anaesthetics, childbirth and breast feeding, I had a "lightbulb" moment.  Then I read about how folic acid, given when B12 is already low, can cause fulminant neurological effects and it all fell into place.  She will have taken folic acid in all four pregnancies.  Her own mother suffered from severe depression and died very young of a "brain problem". Her brother was born with deletion syndrome (a fault on chromosome 22, where some B12 malabsorption problems also arise).  It causes apalling physical and learning disability, including autism, which is now ALSO being connected to B12 deficiency.  All her symptoms, which have been severe, long term and disabling, could easily have been caused by B12 deficiency, perhaps due to an inborn malabsorption problem inherited from her mother.  Her doctors have been pouring anti-depressants and other mind-altering drugs into her for years, to little effect.  I'm urging fresh testing for B12 and other markers, and the monitoring of her children as they grow, in case they have inherited a genetic tendency and can be spared illness in later life themselves.  I could be completely wrong, of course, and I'll be accused of an obsession with B12 deficiency if I am, but B12 is such a unique and overriding vitamin and so fundamental to good health that it should never be discounted.  Thank you so much for all your advice to all of us.
      Report
    • Posted

      Hi again bluemaran, what an awful story. That poor young woman, to go through so much in her life already. Awful to think it might have been avoided if it is all down to B12. 

      There was a lady, I'm not sure if it was on this site, or on Health Unlocked, who was a mental health nurse. Because of her own experiences with B12 deficiency, and what she has discovered about the neurological effects, she is now pushing to get new patients tested. They had discovered several with severe deficiencies! I feel I'm becoming a bit obsessive about it too, but I get so angry to think how easy it is to test for, and inexpensive to treat. People are being sent for costly other treatments, diagnosies, etc...and filled with other drugs that are probably doing much more harm. Also, we musn't forget that if B12 is low, there is a strong likelyhood that other vitamins are too! 

      I hadn't read the book you recommended, but have read "Pernicious Anaemia, The Forgotten Disease" by Martyn Hooper. This contains case histories, including his own. I felt like crying when I read some of them.

      Keep up the fight to get this recognised by the general public and the medical profession. Best wishes Marion

      Report
    • Posted

      I hope everyone who sees this post will get hold of a copy of "Could it Be B12?".  Get the second edition.  I got mine second hand through Amazon for about £7.  It's written by people with personal experience of B12 deficiency, whose medical background led them to undertake research, and observe patients with B12 in mind.  What they have uncovered is nothing short of scandalous, and their determination to bring B12 deficiency to the attention of all concerned will have already saved countless lives.  I sat with that girl in hospital, baffled that someone so obviously intelligent and determined could keep lapsing into such crushing depression that she had to be sectioned for her own safety - and nobody seemed to have any idea why.  Four really lovely children and a devoted husband, all willing her to get well.  There was some muttering amongst her doctors about a "chemical imbalance in her brain" - well that's exactly what low B12 is!  If I had been taken physically ill myself sooner, I might have been able to suggest the cause, and perhaps saved her years of suffering.  I only hope her doctors take me seriously now.  I find their dismissive attitude to anyone not from "the profession" terrifying.  Reading about my own condition, I spotted my partner, who had been on Metformin for 15 years, might be another victim and - guess what - he was running on a reading of 78!  Nobody had ever checked.  Now he's on jabs, but the doctors didn't like me for pointing it out to them.  It's not rocket science - why didn't he get a routine check?  Spread the word!
      Report
    • Posted

      Shockingly B12 isn't routinely tested for! Until it gets included in a full blood count test for everyone it will continue to remain undetected. Unless Doctors who do find it in a test result understand what they are dealing with, then we'll still have cases like Samantha. I do hope you get the help you need Samantha. There are lots of us wishing you well. Marion x
      Report
    • Posted

      Hi Marion,

      Thank you very much for your prompt response. I will continue to push to have these injections or if not will have to get a second opinion/change GPs.

      I had my bloods done 5 years ago and my result for b12 was 200ng and they said I was normal then so by not treating it, its only making things worse. My GP said it was impossible to get symptoms at 167ng and said you only start having symptoms around 90ng which I know isnt true from reading forums of peoples experiences.

      Thanks again for your help and kind words.

      sam

       

      Report
    • Posted

      I do wish you well with everything, and hope you'll get the help you need. It would be good to hear how it goes for you. There are published health guidelines on the treatment of B12 deficiency, which should be followed by GP's. I would recommend reading either the book bluemaran suggested or the one I mentioned, they contain a lot of useful information. Some of that could come in handy when you are talking to your doctor. Best wishes Marion x
      Report
    • Posted

      Have you considered giving her injections? Even if they agree to treat her, I suspect it won't be enough. She might need much more. Give the Pernicious anaemia society a ring and they will advise you.
      Report
    • Posted

      I just want the family to consider my suggestion and test her.  But I've not even got that far yet. 
      Report
  • Posted

    Yes samantha I agree with what everyone has said ive been diagnosed with vitamin b12 efficiency I had my first injection last night. I will now have another 5 they are also checking me for pernicious anemia because I'm around the 175 mark which is low. I went to the doctors because me and my partner have been trying for a baby for about 3 years now with no joy and my old doctors kept fobbing me off so I changed and as soon as I had my first appointment they sent me for blood test and that's the results ive had. My new doctor told me that it is a good job I didn't get pregnant because of how low my results are it could have caused all sorts of problems with the baby's development. I have felt very lousy for along time and it's nice to get some answers finally. See the problems my old doctors have caused me or could have. Do not get fobbed off ur untitled to get treatment older age it can lead to dementia aswel. Hope you get it sorted because I know how it's made me feel smile

    Report
    • Posted

      Hi Vicky, Thank you for your response. Its so nice to speak with people who understand how it feels. I feel so angry that my GP have turnerd a blind eye to this, I spoke with them this morning and they have refused treatment as they say i am within normal range despite the fact I have all the symptoms.  They are fobbing me off and I have no choice but to take this further and make an official complaint. I am also worried that it will also affect my fertility if left untreated as I will be wanting children in the next few years! I am glad to you hear you are being treated and feeling better in yourself! All the best and take care  smile

      Report
  • Posted

    Hi all,  I have recently been diagnosed with vitamin b12 deficiency with a reading of 59.  I had given up all hope and just put it down to depression and a stressful job, how i deal with stress etc. which i'd say had a big part to play in it.  I started to go see a therapist a fw months ago to deal with the depression but it is something I should have done years ago.  I have had a lot of health issues over the years with regards to the stomach but in saying that my lifestyle was not great, still though i maintained it by going regularily for acupuncture, massages, doctors appointments, sports, yoga, pilates etc.  Looking back on my life (I am 36) i was always low on energy, v dry skin and had aches and pains but put this down to the intensity i played sort.  However over the last few years i made an effort to change things but the more i tried the more i was burying myself deeper into the ground.  for years i have been going for blood tests as i was low on energy, stomach problems, sleep problems depression etc. but everything came back ok.  my gums have receded badly in the last few years, had numbness in my right leg and arm.  only a few months ago at a trip to the dentist I was v frustrated as i was doing everyhting they said but could just see as things were getting worse and my grinding got worse.  So they sent me to a specialist orthopediac in cranial and she says my jaw on right side is v damaged.  She also sent me to her doctor.  So I went and the doctor knew something was not right.  Blood test came back and I was 59.9 which she aid is the lowest she had ever seen.  I didn't really know too much about the deficiency and was advised to take time off work.  only when i read up on it i realised how serious it was and how it fit with what i have been experincing for many years.  The reason they found out was leaky gut which i had complained to previous doctors about along with v bad heartburn but was just prescribed esomaporazole which after reading up also blocks the absorption of vitamin b12.  currently i am off work and also off alcohol and certain foods.  The recovery is v slow, i am on weekly injections, daily drops of b12, magnesium, b complex and l glutamine.  I can't stop beating myself up over how i caused this to happen and the irreversible damage i have done, i know i will recover but the psychological part for me is the most difficult.  Again I had a big part to play in this and over the years the more i tried to turm my life around the more I hurt myself.  on a postive note, my muscles, mood and brain fogness are getting better.  For sure if I had known about this earlier I wouldn't have done so much damage.  I work in the pharma industry and work with doctors and after being diagnosed and i asked one why so many doctors don't check thos she said something along the lines of 'it is the last thing they think to check'.  P.S. Sory for typos, shoulder and jaw a bit sore from typing!
    Report
    • Posted

      Hi Ian, so sorry to hear about your health problems. Don't beat yourself up about it too much, it's a very slow and insidious type of illness. It isn't till things get really bad that it's picked up. Thankfully yours has been detected and you are now on the injections. It is never included in a full blood count, and really should be. Anyone with any kind of digestive issue can be at risk of not absorbing B12 ( and other vitamins ) from their food. I do hope that things will improve for you from now on. Best wishes Marion
      Report
    • Posted

      Thanks Marion, good that there are such forums and people like yourself to share and discuss.  Even your words 'Anyone with any kind of digestive issue can be at risk of not absorbing B12 ( and other vitamins ) from their food' eases the pressure i put on myself as you are 100% right and thankfully I am with a good doctor now.  I have ordered the books you also mentioned. Ian
      Report
    • Posted

      Hi again Ian, hope you find the books useful. I believe we need to be our own experts with this illness. I read everything I can to help understand how I can help myself. Good luck and my best wishes for your speedy recovery. 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