Have you been told to shut up about B12 deficiency?

Something happens to people who discover they are B12 deficient, it seems that an internal switch has been flicked and it leaves you with an uncontrollable urge to tell everyone you know and even people you don’t know about B12 deficiency.

Sometimes this has a positive outcome, sometimes what you say falls on deaf ears and sometimes expletives are involved. You may even experience stonewalling from you doctor.

Your B12 spotting radar becomes highly attuned and when you see a child with a few grey hairs or someone mentions they have fibromyalgia you feel compelled to explain about B12 to random strangers.

People outside our shared experience don’t understand the seemingly obsessive and bizarre behaviour they are confronted with.

They think that your focus in every living moment is infused with B12 deficiency. They hear B12 deficiency blah blah B12 blah blah blah B12 blah blah……

Over the years I have driven my family and many of my friends (who I felt could be B12 deficient) completely bonkers to the point where they ridiculed rather than listened.

They switched off internally and in panic, this made me ramp it up even more.  To see the symptoms, know the family history and not say anything, feels like walking by a person dying in the street and not helping at all.

This situation is hard to take, especially when it’s someone you love who is ignoring your concern and you are simply asking them at the very least, to have B12 deficiency ruled out.

The thing is that not everyone is confident about asking for anything from their GP, most people wouldn’t dream of questioning a doctor or suggesting something to them, they might feel rude and disrespectful – and after all, shouldn’t the doctor know best?

Even though we might think we’re discerning and can spot a mile off where we think B12 deficiency is occurring, our friends and family think we think it’s everywhere and everyone has it, even the next door neighbours budgie.

We know that B12 deficiency is very common and due to a lack of education and commonly misdiagnosed, so it’s natural that you will sound like you think everyone has it.

I want to make the point that I don’t think everyone has B12 deficiency at all and that I’m fully aware of its shared symptoms with other common conditions, but I can’t help but say when I see a situation where I feel it should be confirmed or ruled out.

We were sat in traffic the other day and I saw a super market lorry go by it’s sides featuring an ad with a smiling model. I could see her swollen tongue, it’s sides were indented just like mine gets when I need my injection . So naturally, I want to find her and tell her to get checked .

A friend of mine who is type 1 diabetic and a solicitor, was struggling at work through total exhaustion, she also had numbness and tingling in her hands and feet which the GP had of course told her this was due to diabetic neuropathy. (Why wouldn’t he? He’s never been fully trained in B12 deficiency). I nagged her to get tested. I knew she wanted a family and I couldn’t bear the potential that her fertility might be affected.

I was so happy that once her results were in, the Practice rang and asked her to go urgently for her B12 injections.

My grandma had a diagnosis of PA but my mum, who to me had a multitude of symptoms, was attributing those she recognised she  had, to pre-existing conditions. This is of course completely natural but very frustrating for those who recognise themselves in the one they are trying to help.

Breathing difficulties can be put down to asthma, COPD etc,

Back pain to wear and tear,

Incontinence to pregnancy,

Depression to work or family situations,

Tinnitus to loud music or noisy work environments

IBS to stress  – I could go on and on, and of course these can all be factors – but, what if they all improved with the right frequency of B12 injections?

Very often it’s quite clear that undiagnosed B12 deficient patients don’t recognise their own symptoms, it’s those around them who see that they are irritable, apathetic, depressed, and it’s when we are so poorly that we don’t want to be told we might have a ‘condition’. Certainly not one that requires injections.

The person you are trying to help might feel picked on or pressured to do something that they simply can’t tackle and they may feel totally out of their depth in discussing this alien subject confidently with a doctor.

They may get angry when you mention B12, they want you to stop badgering them and they may well decide that the doctor must know best.

I suggest you keep your B12 radar on but perhaps only say “I think you should have your B12 checked” just twice and then leave it.

If you can.

It will be very hard.

You will feel like you want to explode.

You will want to shout from the top of your lungs.

I’m finally learning that sometimes less is more, although I do feel as though I’m fit to burst each time I’m confronted with somebody who has a tremor, mania, stroke etc and has not had B12 deficiency either confirmed or ruled out or who is only receiving three monthly injections it still gets me – really gets me, and I ramp it up again. I’m sorry, I can’t help it.

What is astounding to the newly diagnosed and correctly treated, is the incredible flowering of their personalities, the clearness of their minds, the lifting of depression and an all round improvement in their well being. Their renewed ability to move more easily and have stamina where they thought it had gone for good and it’s only then, when we sigh with relief that the nagging – (even though it’s taken umpteen years), can stop because finally your loved one is safe B12 wise.

I have never managed to mention B12 just twice yet – but I am working on it.

The message is never give up, keep your B12 radar on but use your judgement on how far you can push it with your friends and family. At some point (and it may be years in the future) they will be grateful for your persistence.

So really this post is an apology to anyone out there who has wanted to gag me, but it’s also a message to everyone like me who does this – that we want everyone we’ve driven to distraction, to know that all the nagging comes from a place of love and care.

It’s also a thank you to Damian, who has never once told me to shut about B12 deficiency and helps this cause immensely.

And for all those who can get their loved ones to read this post – they may want your help in getting to the place where you are.

Wishing you all the very best.

Tracey x

 

Sally Pacholok mentions this phenomena in Could it be B12? An Epidemic of Misdiagnosis

Pat Kornic’s open letter may help to share with your families too.

A huge thank you to Dr Marjorie Ghisoni, who gets what I do and why I do it! Read here.

If you think you may be B12 deficient PLEASE DO NOT supplement before testing. Please see this page and use it as your crash course!

 

 

 

 

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17 thoughts on “Have you been told to shut up about B12 deficiency?

  1. I too was a ‘doubter’ mainly because I had suffered with chest problem since the age of 4 have bronchiectasis and COPD and also my b12 readings were within the nhs peramiters however my folate was low and also had genetic problems and eventually agreed to try b12. My doctor agreed and although I was given loading doses I was then put on 3 monthly injections.
    As my 3 daughters are all b12 deficient and so was my mother, I will take what the NHS allow but also supplement with injections myself.
    Being a retired nurse who would fight tooth and nail for my patients I find it difficult to argue with my doctor and so decided to take this easier route. Luckily, I can afford to do it this way but what about those who can’t?
    I find that my breathing has considerably improved, I can climb stairs, carry shopping and my continence problems have improved too. My energy levels have increased too. I am so glad I was nagged at, just sorry I left it so long before I listened.
    Thank you so much Tracey go get em girl!

  2. I had to fire a new primary care doctor who told me she could get fired for giving me a b 12 shot, it’s the first time I yelled at a doctor, and slammed the door by what she said. I told her I have been having shots once a month for 9 years. Never saw her again, this was an HMO insurance policy I was on at the time. No longer have a HMO policy. I found another doctor who writes out the script for me now. You have to insist on what blood tests you need, and stand your ground, if your doctor won’t stand with you, time to change doctors.

  3. My nagging got my girls to test . Both deficient, both pregnant.
    One had loading , one currently on them
    Both been told they require three monthly maintenance injections!!!
    No no no
    They are at the beginning of their fight and I will continue to nag them
    X

  4. Recent tests show I have a MTHFR Gene defect. Your comments about B12 are applicable to many other health conditions .
    I have to admit I get sick of hearing some people who go on about their gluten intolerance or other chronic health problems.
    Now I am at a loss about what say especially to relatives who might want to know if they are carriers.
    Doctors’s eyes just glass over if you tell them you wonder if your chronic symptoms might be due to a specific syndrome or disorder.
    I’d like to know how to speak in a way that will effectively get my message to be heard.

  5. With being B12 deficient because of Pernicious Anaemia, it would probably shock you to hear that when we moved to our current address in 2008, my new doc tested my blood for everything including B12. Obviously because I was getting regular 3 monthly injections – my serum level was high. So what did he do? He took them off me. (actually, it is probably no surprise, when reading other peoples’ reports on the PA group wall)

    After 9 years of arguing with him and then actually trusting him with my care…. we finally realised that it was time to find a new doctor after I had a seizure and was then paralysed down the one side for 6 hours. (yes, I refused to go to hospital)

    It was then, that my Fiance started looking properly into my symptoms and B12/PA kept popping up. We joined the PA Society and their CEO tried to get me re-instated on injections – to no avail – he was accused of trying to bully them. My doctor told me off for sending people to have a go at him.

    He then gave us various different “storified” reasons why he was STILL not going to give me an injection. Which ranged from Babies on Life support, Loaves of bread (yes – you read that right) and AIDS patients.

    We decided to move doctors, after the initial nurse exam and subsequent doctors appointment, within 72 hours of registering with them, they had me on loading dose injections and had referred me to haematology.

    My haematologist confirmed that all the damage was irreversible. We were quite gutted, but then relieved to hear that on maintenance doses, I would not get even worse.

    So yes, if my interfering useless doc had not stopped my medication. I would not be so severely disabled now. (brain, spinal column and nerve damage)

    Due to all this, I often lecture friends who are diagnosed with Fibro/ME and implore them to get a test done. Also a folate test.

    I have had people shoot me down quite a few times when I talk about it. As long as at least 1 person in my life is medicated properly because of me being a PITA (pain in the a**) then I will continue to put up with the slating remarks.

    • Without being too militant, and no, I am not a compensation chaser. Isn’t it about time the people like you, with these horrific stories which result in permanent damage – should have redress for this obvious case of malpractice, if only to stop him doing it to others. I can’t quote it fully, but doesn’t the Hippocratic Oath contain words to the effect that ” if I cannot heal, let me do no harm” that’s what a lot of these GP’s are doing! Its long overdue. I would contribute to Crowdfunding for it! I’m surprised the Americans haven’t done it yet – or has anyone tried?

      My sister has had MS for 40 years. Was never screened for B12 def/PA although she had the 2 tests which define MS diagnosis. She is 81 now and fully dependant and has been for years. Who is to say it wasn’t B12 in the first place? My niece is struggling to get recognised has her “levels are borderline” she has depression and many other symptoms. They only knew bout B12 as I was luckily diagnosed by my Diabetic Nurse who enabled me to be diagnosed with PA and 3 monthly injections. From her I found out that Metformin (yes, you’ve guessed it!) inhibits the action of B12 – my sister has been taking it for years! I was lucky as another Practice Nurse said my levels were fine (she conferred with a GP who agreed. I got back to my “proper Nurse” who carried on with it. Thank God. I am so much better now – I do supplement with patches but don’t want to rock the boat. Of course, another thing is that it can be hereditary can’t it?
      I send my heartfelt love to all sufferers and Tracey for her perseverance.

  6. Great article! This is so me too. And its so hard not to keep mentioning it when you are convinced it is a deficiency! But some people just don’t want to hear it. Or take the wrong treatment… Got to bite your tongue sometimes but often I can’t!

  7. Oh Tracey, what a star you are! I just read ME in your letter. I am at present trying to help my adored niece who is desperately trying to get diagnosed. Also a dear friend who is coming around to my way of thinking. So Go girl! Thank God we have people like you XXXXXX Eve Davies.

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