Imagine feeling that taking your own life is preferable to fighting your doctor for your right to this essential vitamin
Imagine being tested for B12 deficiency and even though the serum test shows you are deficient, your doctor denies treatment because she doesn’t believe that your mind can be affected
Imagine a newly qualified doctor telling you to eat more broccoli to build your supplies of B12
Imagine pleading for injections for your severely B12 deficient child only to be ignored, all this whilst the doctor calls social services to accuse you of starving your child
Imagine a helicopter police hunt for a desperately deficient OAP whose doctor thinks that three 50mcg oral cyanocobalamin B12 tablets per day will correct their severe deficiency
Imagine your child being given a diagnosis of autism only to find later that B12 deficiency was the correct diagnosis
Imagine being bed bound and unable to look after your children or yourself because your doctor thinks B12 is a placebo and will not allow B12 injections more frequently than every three months
Imagine studying hard for a career only to find your undiagnosed B12 deficiency makes it impossible to work or contribute to society in any way
Imagine being treated for cervical cancer when B12 deficiency caused your abnormal pap smears
Imagine becoming anorexic and being admitted to a mental health ward where the doctors involved in your care don’t understand that anorexia is a symptom of B12 deficiency
Imagine being diagnosed with post natal depression after enduring a long labour with B12 depleting ‘gas and air’ and only being treated with drugs instead of the vitamin your body has been starved of
Imagine being labelled as a lazy hypochondriac when you haven’t the energy to raise your head from your pillow because your doctor says a three monthly injection is adequate treatment
Imagine being one point above a B12 serum test’s lowest range, with screaming neurological symptoms and being denied treatment because a doctor says your level is ‘normal’
Imagine being unable to remember the names of your loved ones, how to cook, how to read music, how to drive your car
Imagine being tested and probed for other ‘more serious’ illnesses in your quest for a vitamin you know you need but medical professionals simply don’t
Imagine being fed a cocktail of antipsychotics, antidepressants, antiepileptics, lithium, and pain killers, when all you really need is a B12 injection every other day until your myriad of symptoms stop improving
Imagine a night out partaking of some supposedly, harmless ‘hippy crack’ (nitrous oxide), and later finding that you can’t walk and that your doctor never puts 2 and 2 together
Imagine being misdiagnosed with MS due to your doctors ignorance of B12 deficiency
Imagine knowing that other countries allow their citizens to buy this essential injectable vitamin over the counter but in the UK it is restricted and rationed
Imagine being diagnosed with Alzheimer’s, or dementia in your 20’s or 30’s when it’s simply vitamin B12 deficiency causing your appalling memory problems
Imagine having repeated miscarriages and rounds of unsuccessful IVF only to find that £10’s worth of vitamin B12 injections could have you on the road to natural conception
Imagine your healthy baby becoming floppy, unresponsive and failing to thrive but never finding that elusive doctor with a comprehensive knowledge of B12
Imagine your child being arrested when their anger and aggression is due to desperate under treatment for B12 deficiency
Imagine finally giving up after you have fought for help from your doctor, only to be continually ignored and told that your symptoms are all in your mind
Imagine knowing far more about B12 deficiency than your GP or any of the specialists your doctor has referred you to
Imagine being accused of alcoholism when you’re tee-total but your gait and speech are affected by B12 deficiency and you’re denied B12 injections
Imagine an ignorant consultant calling Social Services to accuse you, a loving parent, of causing your child’s malnutrition when you have a family history of B12 deficiency
Imagine being mistakenly prescribed acid suppressants when your stomach acid is already too low to absorb B12 and then finding that eventually your legs fail you
Imagine being diagnosed with B12 deficiency and knowing you will need treatment for life but having an ignorant doctor stop your injections when the serum B12 level is ‘within range’
Imagine having repeated cardiac arrests, prolonged stays in mental health units and when you finally work out that you are B12 deficient, being denied treatment
Imagine a life with this condition, when your family and friends don’t understand your many symptoms and who tell you ‘the doctor must know best’
Imagine finding a below range B12 result in your notes from years ago and realising that your confinement to a wheelchair and permanent neurological damage could have been avoided if only you’d been given B12 injections
Imagine just how devastated healthcare professionals feel when they realise the harm that may have been caused to patients because their training lacked vital information on B12 deficiency
Imagine the savings to the NHS and to health care systems worldwide if ignorance of B12 deficiency is addressed……………….
All the above will continue to happen until something changes.
If you think you may be B12 deficient please start on the What to do next page.
If my site and blog have helped you please consider adding your testimonial.
Best wishes, Tracey
If you find yourself or a loved one in any of the above situations and require personalised help, please 
Well said, Tracey. Most people are unaware this can actually happen.
Thank you Pat x
I am in Canada and was diagnosed and put on b-12 shots about 17 years ago. Every doctor I have had has been good about the shots and have all said that the numbers do not matter….if you are having symptoms then it is a problem. I have been unable to take antidepressants to control my depression…….unable to take meds to treat other issues and the b-12 shots helped a lot. I Moved almost 4 years ago and the new doctor has stopped my shots. Canadian “safe” numbers are much lower than the PA org says and my number is in the low 200″s and they say that is good and put me on the pills. I have objected but no one is listening. I don’t feel well but they say the pills are working. Well I did an experiment (I didn’t tell them because I don’t think they will listen anyway) I did take them for a year and they did my test…low 200’s. I stopped taking them and the next test was almost the same as the one taken when I was taking the pills.
I am so frustrated with the lack of information that some doctors have and that they do not listen to their patients. There has to be a way to get these doctors informed.
Kathy
Kathy you need to get checked for Vitamin B12 Genetic mutation MTHFR as you are probably getting wrong type of B12 .My hubby & I have had one hell of a journey to get well.we are not vegetarians but our B12 levels weren’t responding so my diligent holistic Gp tested us for MT HFR which was positive.We are now on weekly injections of methyl B12 & sublingual nuggets from I herb to get our levels over 1000 so nerve damage can start to repair.google Sally’s book Could it be B12 ? Down load Vitamin B12 deficiency treatment protocol page 8 & take to Gp filled in.The range blood levels for B12 are flawed anyone with levels below 500 should be treated stat.God bless I hope I have gave you some answers by the way you have a great pernicious anaemia or Vit b12 support group online in Canada run by Pat Kormic.
Well said Tracey.
Imagine being in hospital for a fracture, but having acute porphyria and pernicious anaemia, then being deprived of treatments for both diseases. As with b12 déficience, a doctor argued about tge lab results. Never mind that b12 deficiency was causing neuropathy (also seen in porphyria). When glucose was requested, the dr said the patient could have glucose packs of 15 g glucose and a 10 g carbohydrate biscuit developed for diabetes, when the daily requirement for glucose/CHO can be up to 600g, with a weekly bolus added.
Brilliantly written.
Wished I had seen this when it was first posted. I look forward to checking out your blog.
Why oh Why are Doctors not educated of this?
Isn’t it shocking Meg? The worst is when we sufferers try to educate those who are meant to care and they continue to ignore us.
Some even get angry with you for trying to give them info.
I am at the point where I don’t want to live anymore, I know my body is dying, so disgusted at my doctors response, the waiting list to see Neurologist over in Ireland is 2 years…. I will be dead by then
Dear Helen, please consider joining this fantastic support group if you haven’t already – https://www.facebook.com/groups/PAB12DSupportGroup/?fref=nf
there are many Irish members and hopefully someone is near to you.
Hi Helen, saw your post. I live in Ireland and have been fighting with doctors the last 3 years about my b12 def, and now fighting to get regular injections. I am here going over my notes and the book could it be B12? as I have an appointment with my GI doc Wednesday, enough is enough!!! Did you get any where with your appointment?? Did you even get an appointment?? Would love to hear from you. I am on a mission to get B12 heard in Ireland and get proper treatment. Where to start?!!
Tracey it’s very profound and lyrical and so moving a big thank you from all of us for giving expression to what we all know so well.
When in Gods name will the medical schools start educating the next lot of new Doctors in the basics of medicine.when will our GPs start listening to us the patients,we are the specialists of our own bodies.
I agree being a nurse for 45 yrs I am appalled at the way I was treated & 15drs including 7 specialists later no one recognised symptons finally after 10 mths of methyl b12 my nite episodes of tremor,headache ,nausea,pins & needles have diminished still tinnitus.I am seriously thinking of starting support group in my city as I diagnosed my hubby as well.So great to have a online support group.
I was sent to the local mental hospital after my thyroid meds and a very strong antibiotic med clashed……..I couldn’t sleep at all for days on end, I was overactive with Graves Disease at the time, I ended up having vivid scary dreams and shouting and screaming at everyone, it was really frightening, the shrink dipainosed me as bi-polar … Indeed, if only I had known… Mistreated totally, I end up going home after a week with a compacted bowel!!!!!! I had had the strength I would have sued their a……..s off …..grrrrrr
I had a total thyroidectomy this June and I am just about getting my life back after fighting and screaming to get on correct thyroid meds but I’m doing great now, and I Am NOT bi-polar !!!!! Xxxxx
Thank you for your comment Tish, if only your experience was a rarity!
thank god for the pa society and the information they gave me to self inject! been through hell and back!
I am so glad you are able to be in charge of your own healing Jemma.
Shamelessly stolen, translated and put up on the web site of the new Norwegian thyroid organization, Thyroidea Norge. Well, or I will, when I have given myself a B12 injection, just wait….later, you may find it here: http://www.thyroidea.no, although in Norwegian :-). Will link to your site, though
Thank you Anne Marie
Reblogged this on Jacqueline Mckenzie's Blog and commented:
Does anyone really know enough about this.
There is a thing in the back of tv magazine ‘TV choice’.do you want to be on TV..this one is about health issues and if you want to speak to a specialist or if there an illness that isn’t being treated right. I sent in an email about P.A. , maybe we all should.
the email is [email protected] just write what it does and add a picture and contact details. I put a few points acrosss then I just said, its under treated miss diagnosed and it could one day be YOU. worth a shot.
As a mother of a daughter with Pernicious Anaemia, and with my mother having it, I totally understand, I do not get why Doctors seem so against giving out something so natural as Vitamin B12 …. makes me mad that they don’t take it seriously enough to even understand the problem … This is a wonderfully well written article thank you 🙂
Thank you for taking the time to comment Maz, please would you consider signing and sharing the petition too?
Thanks for sharing it
Imagine spending your whole life feeling so tired that everything is an effort so you miss out on all the things you could enjoy just so you can do the things you must. Imagine being diagnosed by the consultant with Pernicious Anemia and treated for a year then told you are fine by your GP. Subsequent visits to the consultant do not throw up any other diagnosis because consultant presumes GP is treating you with regular B12 injections when they are not. Imagine this going on for 6 years. Imagine not being able to enjoy your children’s childhoods because you are too tired. Imagine working full time and caring for your mother and ‘running on empty’ until you have to give up work and retire early. Imagine having to live on a reduced pension because Atos have no idea what they are doing – apart from charging the government money to ruin people’s lives. Imagine being put on anti-depressants instead of B12 injections.
I have been in psychiatric hospital twice, lost jobs, relationships and friends. It took almost 20 years before a young doctor recognized B12 as the culprit. I still have to battle to get my injection when I say I need one, not when they say .
Wow, thanks everyone for sharing – such important info to have. I’m in Australia & unsure of current guideline range re test result readings & what is considered to be B12 deficient. I’m a 51 year old female & unfortunately am currently a voluntary patient in a psychiatric hospital & my amazing treating psychiatrist (who’s been caring for me for 12 years) ordered a number of blood tests, including B12, Intrinsic Factor, Zinc, LFT, ANA & others! Having done the merry-go-round of antideps, antipsychotics , lithium, anticonvulsants, ECT, treatment for Fibro & Lupus, the use of ACE Inhibitors (hypertension) & Nexium (antacid) following gastric bypass surgery, for over 30 years my 73 year old Doc is exploring ‘other possibilities’ re cause & treatment of the many symptoms I have. (There are several lists elsewhere on this website). Waiting for more results to come in however bloods have so far confirmed quite low zinc which would explain why despite popping B12 pills daily no absorption. Now have to wait for rest of results to determine correct treatment. Feeling angry for all the wasted years, feeling hopeful that there may be a way forward & feeling encouraged that there are genuine decent Docs out there who are prepared to go against the norm for the sake of their patients best interests.
Sorry to burble for so long – I feel strongly about this – if I can help spread the word in Australia please let me know.
Thanks to everyone & best wishes from Down Under.
Dear Cath, thank you for taking the time to write, please share the site with anyone you feel it will help, best wishes Tracey
Hi Cath .I was finally diagnosed in 2013 with B12 deficiency with MTHFR after seeing 12 drs including 7 specialists here in Aussie. Sallys book was my lifesaving resource which led me to get a diagnosis. Since then I diagnosed my hubby & elderly mother. I have permanent nerve damage, peripheral neuropathy, hearing & memory loss. Being a nurse for 45 yrs. I am determined to make an awareness to DRS ,fellow nurses & the community here in northern N.S.W.
Yesterday I spent all day in Emergency department with my husband who has b12def with MTHFR A1298 C he woke 4am with pain on breathing,breathless before bed so we both thought asthma so used puffers & placed sleep apnoea machine on.On admission to ED heart rate 150bpm.He has had atrial fibrillation several episodes in past 10yrs but it always reverts to normal & controlled well with Magnesuim citrate daily..He had a scan at 10 am which showed blood clot in left lung.Now on anticoagulant & heart rate still irregular.He has been having methyl B12 injections & methyl folate since Oct It’s obvious to me that even though you have the right treatment there is still a high risk of clotting with MTHFR.When he told the experienced renal specialist that he was MTHFR positive he quoted he didn’t know anything about it.
Brilliantly said . Thank you xx
This is appauling in this day and age that us B12 deficiency sufferers go through prior to be given regular B12 injections for a debilitating chronic illness.
I was one of the lucky ones, being diagnosed by a younger GP who took into account my age and lifestyle when prescribing my (thankfully) monthly injections, which I am still on now.
I know how frustrating it is to receive proper care.both my hubby & I have had assistance 5hrs away .my local Gp was useless kept telling me it was anxiety attacks tingling,vibrations,tremors.l arm spasming,numb feet,falls,loss of memory& hearing,Thank God we have a new Gp that actually treats b12 patients & quoted “you can’t overdose on B12.”We are both MTHFR A1298c positive so we are having weekly methyl B12 $ methyl folate.daily ,mine you I saw a total of 15 drs including 7 specialists & not one even suspected it.I read Sally Pacholok’s book could it be B12 ? This book is our lifesaver. with 45yrs of nursing I diagnosed my hubby & my elderly mum.i am determined to make an awareness in my workplace & community.
This is brilliant, thank you.
Not sure I understand the one about the ‘hippy crack’ though? I don’t think that helps the case, and it might stop a medical professional taking this otherwise excellent list of outcomes seriously.
Thank you for your comment LJ,
‘Hippy Crack’ is simply the term used for recreational nitrous Oxide use, It is known as ‘Whippets’ in the US. I use the term for readers who may not understand that NO is the content of the canisters.
Having had treatments for different medical issues and also being a vegetarian when I fell asleep with a hot coffee in my hand at the day centre and burnt my tummy was sent to the dr who ordered a B12 blood test check I was quickly diagnosed and placed on three monthly injections I have long argued that three monthly is not enough and need them more regularly but unfortunately not being listened to Part of the time being ok the other just as you say in your article here Tracy not having the energy to lift head up is not quite good enough for me I will look up Sally’s book and give it a read maybe if I’m better informed I can let them know
Dear Jude
You are right, if you have neurological symptoms (and who doesn’t) then you should have been on every other day injections until those symptoms stop improving. You are being desperately under treated – have a look at this page http://www.www.b12deficiency.info/what-to-do-next/
Sally’s book is excellent and will arm you. I am running another conference in June of this year and I hope that this will help to bridge a gap!
Best wishes
Tracey
Here in the US, b12 is prescription only as well. It makes no sense. It’s not like it’s a narcotic.
Thank you for this Tracey, we have six female family members being treated for this, plus my grandson is diagnosed with autism. I had a hysterectomy at 41 years old and think I probably didn’t need to. One of my daughters has B12 deficiency and another has Graves’ disease, the other has been diagnosed with a personality disorder. I believe it’s all attributed to B 12 deficiency and so wish that they could try having jabs ever other day to see if it helps. I self inject and it really helps me
Thank you so much Tracey. I am pushing back against a mental health service and they really don’t like it. Not long off the phone to the duty psychiatric nurse as they received a letter about a change of emergency contact. It appears they panic !! Well, the person I have allocated has been a long standing friend. They helped me dress, sit, stand, pushed my wheelchair, got my prescriptions, met a private GP, met one of my psychiatrists. I couldn’t coordinate my body for 6 months and I was at risk of fall. . I had to be urgently admitted to a neurology ward as I even had eye tremors. How’s my mood, well I did burst out crying yesterday when invited to a Xmas meal. I tearfully explained I can’t eat in public, I might soil myself in public as my bowels don’t work properly.
Your story is heartbreaking Charlotte and could so easily have been avoided. x
I was at breaking point when my GP said they were going to discontinue my B12 injection because my levels were back to normal. No one asked how I was feeling and what my symptoms were, they were following guidelines.
I had a phone session with Tracey and without her support and guidance I would never have had the courage to fight my corner. I did fight back for the reintroduction of my jab two monthly and I won. I know how hard it is to do this but please do not give up you have to have your voice heard,
Dear Jayne
Thank you for taking the time to comment. Very best wishes Tracey
Hey ,Tracy I want to talk to you regarding b12 deficiency.
Dear Ayaz, please email me at: [email protected] and we can make an appointment.
Hey Tracy I just checked my b12 test .it’s 152pg level .it’s law .and I have b12 deficiency. And I have been diagnosed with schizo obsessive disorder .my psychiatric medicines are continue since August 2020.i talked to doctor regarding b12 but he ignored me and said it’s normal b12 value .what should I do now pls reply .I am from india
Dear Ayaz
As you may know the serum B12 test is flawed and so many doctors don’t really understand this. Please see: https://www.b12info.com/your-serum-b12-is-normal-no-action-required/
Your doctor needs to actively listen to you, let him have a list of all your symptoms: https://www.b12info.com/signs-and-symptoms/ and give him a link to the mental health page:https://www.b12info.com/mental-health/. I understand that you can access B12 injections over the counter in India – would it be possible for you to do this with the help of someone you trust – if the doctor won’t help you? Please follow this page if you choose to do this:https://www.b12info.com/what-to-do-next/
Very best wishes
Tracey