I'm not sure if this question belongs here but......
There is much emphasis these days on mental health - and rightly so - but not once in any context have I heard of PA or B12 deficiency being included. We all know that these disorders can end in a form of dementia if left untreated. I myself came very close to ending up in a care home after my treatment was stopped in 2020. It was only thanks to the good people on this site that I found my way back.
So why is not more made of this? I wrote to several organizations and govermnent officials but have not even had a reply. Television ads for everything from diabetes to sick animals, but PA? Not a mention. Does the public even know about us or our disorder?
Written by
tomdickharry
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I had always been quite sound mentaly but when the low B12 and folate hit me I were very suicidal ! I became anxious and depressed which simply wasn't me.
Like most I were given the loading dose and 3monthly injections ( the one size fits all approach ) but still I felt wretched. It was only when I took matters into my own hands by doing SI the depression lifted.
We are a pushed under the carpet society - nobody gives a 💩. Had I have pushed the depression I am sure the would have been more than happy to have prescribed antidepressants but more frequent injects - not a hope in hell of getting them. It makes my blood boil to hear of so many of us needlessly suffering. 😡
I was treated for depression for 30 years and no medication worked. B12+ folate has sorted it. So much of my life was damaged by that faulty diagnosis. I am 80 today so at least I have that which if PA had not been discovered I would have died years ago.
I was offered (and refused) antidepressants three times before me and GP could move on to work out what was really wrong. Seven years on, I have just been offered the very same antidepressant for nerve damage relief from burning tongue "syndrome" (still hate that word). Guess what my answer was ?
Going back even further. When I was a toddler (75 years ago) I had two aunts. They had to get injections once a month of raw liver, Very painful, massive open sores on their arms, and their behaviour was regarded as odd, and I was told 'it's their nerves'.
PA hasn't changed, only the treatment has changed.
A great pity that doctors' education has gone backwards.
I to have depression and it's severe just given Antidepressants and antipsychotics at one stage as I was extremely stressed and had a psychotic episode but I think you're right B12 and folate must help how did you get it x
Lucky you are there and able to fight for your mum. You shouldn't have to. It should, surely by now, be obvious, at least to nurses, what it is that not getting B12 will do to a deficient patient.
Yes, all of the above. More, if left longer still.
This isn't post-pandemic lethargy. It is misinformation, misunderstanding, ignorance.
You are right - if NICE don't enter it in their list of symptoms, it doesn't give us anything to point to and we will remain in this position. Fighting against deterioration.
Going on the symptom-by-symptom round of consultants is expensive for the NHS, but totally disheartening for us, since they never say "this is another symptom of your ongoing B12 deficiency issues". What follows ? Extensive testing, looking for something "more serious" than a vitamin shortage that should have already resolved itself by now - because that is what our blood tells them is the truth.
I have had psycosis many years ago and maybe heading for another just given Antidepressants and antipsychotics surely B12 would help am desperate for help
Depression is the main symptom that tells me I am overdue for an injection. Have tried so many times to broach the subject with my gp but only I’ve only ever been offered antidepressants.
Because b12 relates to so many different overlapping and competing areas of medicine to acknowledge it would open a huge Pandora’s box and turn many current beliefs on their head. I don’t think anyone (currently at least) is going to allow that to happen. The issue is just too vast.
I am so sorry to read how vitamin B12 deficiency has affected you.
If you have a read of my biography then you will have a glimpse of how severe vitamin B12/Pernicious Anaemia has affected me.
So, I have recently advised on NICE guidelines. I put both my matron and civil servant hat on. I severely criticising the divide between physical health and mental health. Plus, made recommendations.
For my own care, my work history and experience were ignored. Whilst studying to be a midwife, I lived in hospital residents and it is not uncommon for foreign doctors to work in this country. Their families are thousands of miles away. They miss their spouses and children. I was particularly friendly with one psychiatrist. We would sit outside and have a little picnic and obviously, discuss our work and cases because work takes an emotional toll. Plus, moving forward, how to manage the complex cases.
The psychiatrist would always bring these amazing tasty dishes as although, I cannot quite remember but I believe that he was from around Lebanon.
You see, medicine is about bringing people together. It does not matter if you are rich, poor, your ethnicity, colour of your skin, how intelligent you are, gender, sexual orientation, age or whatever else.
I get judged on the way I dress but because I have complications of coeliac disease, I feel and look as though I am 5 months pregnant, so wear baggy tracksuit bottoms. I also get judged upon the way I speak but I am a complete wind-up merchant.
Papa sent us for elocution lessons, so one can speak as a royal. However, I will joke in an Irish, Welsh, Scottish, Australian, French, South African or whatever else. My favourite though is a Scouse accent.
Having taught psychology for 18 years at college and university I reflect back on my knowledge post PA and realise that it is clear that vitamins, minerals and nutrition are all involved with all psychological disorders.
I was diagnosed May 2020 with PA and ME/CFS ( august 2020 - told them this doesn’t exist it’s just a b12d).
Since may 2020 I have been down the medical and nutrition learning experience. I did the following:
1. daily methyl and daily hydro
2. Went organic 100%
3. Researched supplements and brought all the ones I thought I needed.
4. Gave my body time to heal
5. Avoided all big pharma medicine since may 2020
6. Filtered as best I could tap water.
7. Researched best organic farms that don’t vaccinate or give drugs to cattle.
Result - in may 2021 I could not walk around more than three holes playing golf but may 2023 I can work 8.30 to 4 pm, play a full 18 holes carrying a full set of clubs and then at 7.30pm drive 5 hours straight to Cornwall. No ME/CFS
Mental health improved so much, many physical symptoms gone. Shoulder, back and knee issue that never got better despite 2 years of physio gone 6 months after injections.
I still have some brain fog, and can have the odd day a little groggy (although this depends on sleep)
I can scarcely believe how much I have improved.
I am 50 but feel like 18 again! My muscles don’t ache, I never get tired and full of energy. I am decorating people’s houses for free this summer as I have too much energy.
I’m OK thank you . Cancer overcome last year . May be not such a good outcome if I was not receiving sufficient B12 I think .
Being B12 deficient can make one less able to deal with other illnesses . So it’s really important to get sufficient. It’s such great news that you are feeling so well . 3 hearty cheers !
Agree with you 100%. This is exactly the approach I have taken in trying to heal myself. It’s not easy though is it? Seeing as modern day life is slowly poisoning us from every direction. It takes determination to swim against the tide, well done to you!
Spot on. I have to be careful what I say. But I am moving to Cornwall buying a house with land to grow my own food. I only eat about ten things which I totally trust.
Aug 2020 started hydro daily, 2 months later went to hydro in morning and methyl at night. Been doing this since then. But I also have done so many other things. However, confident b12 was major factor along eating super healthy, supplementing and avoid all big pharma.
I have to admit the first two years was absolutely brutal. It was hell on earth going through reversing out syndrome. Without my little sister, mum, and dads support and the constant love from my dog I would have faltered.
What makes it worse is my father passed last year from the vaccine and my little sister also took her own life. She was going to move down to Cornwall with me and my mum.
My life will never be the same. She was married 19 years ago and had the most horrendous marriage. She was beaten and worse. She married a Canadian man so we didn’t know until the end. She never recovered.
I relate to much of what you say and we share a similar story of a brutalised sister. Could you share your reversing out symptoms? My life is a living hell right now and I'm still unsure about what's happening with my body and need a glimmer of hope.
It has become my life's mission to spread the word about the perils of B12 deficiency every chance I get. I know I'm sometimes annoying but if I can help just one person it is worth it. That's what all of us here need to do. In addition to talking about B12 deficiency I have bought several copies of the book 'Could It Be B12' and left them in the Little Libraries near me. What we really need is to have a celebrity come forward and talk about it. I wonder if any celebrities have perneicious anemia?
If celebrities have P.A . they will be well-off enough to afford private health treatment. It was only through consulting a private GP that I got my diagnosis ( positive IFAB test) after being” sent on my way “ by my NHS GP , having had a below range B12 blood serum result . Even then , my GP sanctioned 5 loading doses ( guide lines state 6) and just 1 injection every 3 months , although symptoms returned after a few days . More regular injections not allowed because more would be toxic !
Great post and absolutely right to post it and 💯no need for any apology.
Depression, low mood, being overwhelmed by life and anxiety were emotions which I encountered only fleetingly until I became B12 deficient.
These new horrible feelings completely knocked me for six as I had not needed to learn any coping mechanisms so had none.
I became terrified of going in a lift or a tall building (I work in construction!!), I even became terrified of flying. I started having panic attacks in the night worrying about everything and everyone. I started having dark thoughts - it was scary, like the real me had left.
The problem is that you often feel alone, misunderstood, battling with low energy and at a low ebb and not in a good place to start learning coping mechanisms. It is a difficult choice - antidepressants or grin and bear it.
It was only after about three-four months of every other day injections that the feelings began to subside. Now while they are not yet fleeting and can still hang around for days, I can handle them better.
The real me is taking up residence again so I am more able to cope but it’s still very unpleasant to feel so low.
It’s important as you all say to recognise the psychological side of B12 deficiency. This is the symptom for me which is taking longer to heal after the tiredness and fatigue.
Happy Sunday guys - sun is shining here and the hens and ducks are sun bathing in the grass.
I was involved in a woman’s research and she called her thesis Illegitimate Illnesses and over the course of 4 days I read it. I cried my eyes out. The isolation and so exhausted after making a hot drink, having to go back to bed then 3 hours later attempting to shower then back to bed feeling like I have the flu. And you live like it for however long, months, years,
I am not surprised it made you cry, anyone with half a heart would cry.
It is a very isolating illness which causes poor mental health and exacerbates poor mental health by the lonely nature of the illness.
Now if I had broken legs and arms I would like to think I would have received get well cards, flowers, chocolates, home cooked meals and even offers of help. People can’t respond to what they can’t see.
At least on this forum, our eyes and hearts are open ♥️♥️♥️♥️♥️
Don't be too harsh on yourself as we all do this - unconsciously even when we ourselves have an invisible illness we still revert to upbringing and that is to only respond to the visible.
We can change that! I hope your friend appreciates their Get Well Soon card which no doubt will be on its the way to them.
I have a Get Well Soon card on my desk, the only one I received when I shared my PA diagnosis and the challenges. It's from a very dear friend who has a heart condition. I sent him a little teddy keyring with a heart on it which he found quite funny but I could tell he appreciated it.
It's very hard to give when you need to receive yourself, and even harder to give the care and support you actually need yourself. Let's hope we do reap what we sow!
I see you have quite a few replies already... well, here's my 2 cents:
10 years ago, my then 17 year old son was sent by court order to a psych ward for psychosis, catatonia and dementia,
I tried to convince the head shrink that he was B12 deficient and was being treated with massive amounts of injections .
At that time I had just received my first batch of hydroxocobalamin from Germany (the cyano available in Israel barely made a dent in his condition). I even presented her with stacks of studies I had downloaded from PubMed to bolster my argument. Throughout my presentation she listened politely . When I was done she finally lost it and spat at me,
" Anyone who thinks they can cure psychosis with vitamins is a charlatan! "
Long story short, in order to get my kid out of there, I had to lodge a formal complaint with the Minister of Health claiming that my son was wrongfully taken out of my custody. Thank God, my hell-raising worked My son came home in short order, and the hydroxo saved his life.
Psychiatry is not medicine. It's a pseudo scientific cult based on fictitious "diseases" which are made up and expanded yearly by the REAL charlatans - psychiatrists themselves.
There has never been a single specific blood or tissue test to confirm a psychiatric "diagnoses". But nobody questions that minor detail nor will a "real" doctor or specialist ever challenge a psychiatrist's opinion. Why? Because to everyone else, psychiatry is a type of hooglah booglah which only the shrinks understand. They have no clue how spot on they are are about that!
You can forget about enlisting the help of a psychiatrist in treating the neurological effects of PA. Brace yourself to go the DIY route. I did it - and so have many others. You are not alone!
tomdickharry , thank you for the kind words. This forum and the Facebook PA Support Group are what got me through those terrible, lonely years.
Not only was I stuck at home with a demented, anorexic , incontinent teenager, but my husband was also sinking fast from multiple endocrine and digestive tract failure. When he wasn't convulsing in horrific pain from pancreatitis, liver failure and constipation or freaking out from PTSD , he was in a drugged fugue state.
All of the above was caused by PA or undiagnosed B12 deficiency.
May God bless you all and send everyone a full and speedy recovery!
Top: Hubby and Moi celebrating my 40th birthday (again). LOL Bottom: Our son age 28.
Mental health symptoms are mentioned in these books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
Might be worth writing to Kier Starmer. Labour have pledged to reduce numbers of people dying from suicide. I often wonder if he knows that B12 deficiency can have severe effects on mental health.
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