This is an abstract: the abstract is in English, while the article is written in French. The abstract is unusually thorough. It's not uncommon for posts on this forum to inquire whether psychiatric symptoms can result from B12 deficiency. This article is almost startling in depicting psychiatric symptoms secondary to B12 deficiency.
This article abstract describes a case that's interesting due to both severity of symptoms and resolution of symptoms after simple B12 replacement therapy.
I had severe paranoia. I thought my loving partner of over 40 years was conspiring against me. I was lucky to find out what was wrong with me. I could have been 'locked away' like my mother was.
Don't be silly. I had to diagnose myself. I had a major seizure and was unable to walk or talk afterwards. It was during Covid. A&E were totally useless. They discharged me without any diagnosis. I was really worried and carried out extensive research into my condition and narrowed it down to celiac disease. So I cut out gluten which helped with my stomach problems. But I still couldn't walk or talk properly. And then I read that it is recommended that people with celiac disease take B12 as well. And within three days I was able to walk and talk again.
I had to pester my doctor to get tests to prove I had PA.
Silly me, thinking you had been diagnosed by a medical professional!! I personally lucked out. I asked my doctor (whom I had never met before because I had recently moved from another U.S. state) if it was possible that migraines were causing my symptoms. He said if I wanted that question answered he would have to refer me to a neurologist. I agreed, and the neurologist, who is probably close to 80, recognized the symptoms I described as B12 deficiency symptoms and, after some quick screening, refered me for appropriate tests. When the diagnosis came back, my doctor, to his credit, said he didn't know much about treatment, so I knew I had to get busy finding out about B12 deficiency.
Do many people have a collapse like we did? Mine was so frightening. It was as if I had a battery that suddenly discharged. Prior to my collapse I had many symptoms of B12d. But when I regained conciousness I was in a terrible state. I wish A&E had tested my B12 levels then. My GP didn't test them until I had been taking a very high dose oral B12 for 4 months and my reading was 250. Which is why he didn't think I had a B12D. 6 months later my reading was 1770 and he told me the level was dangerous and to stop taking B12. 3 weeks later I had another collapse. At least it meant the doctor finally believed me and gave me a PA test.
I feel for you charks . What a nightmare for you . I’m convinced that my mother died from Pernicious Anaemia, now that I know so much about it . She died completely demented And this still happens due to medical ignorance . It enrages me . Thank goodness for this forum . But there are thousands of sufferers out there who cannot access this forum . That grieves me terribly . It’s truly OUTRAGEOUS.,
Yes , there no doubt that there’s often a genetic connection . But if you ask relatives , they often say that it’s never been in the family . But of course in the past P.A.,was unheard of, well before the war , so people died , and the cause was not known . I’m convinced that my mother died with it . Her way of walking was a big give-away, ( when she could walk) Also her pallor and the type of dementia , and many other symptoms . But all this is with hind-sight . I knew absolutely nothing about B12 deficiency till now .
It takes such a long time to die from P.A.
She had to be in a care-home . Her death certificate stated “Parkinson’s “ .
Well keep on fighting Nackapan . You are doing a grand job on the forum .
We must all keep fighting to spread the word about the dreadful treatment of P.A. patients . I’m so lucky because I found this forum . Otherwise , I would be in a home by now , or even gone ( I’m 85)
Am always so impressed with your clarity of thought, word and deed .... and at 85 you are an inspiration to us all. Thank you for sharing... such a gift 🎁
Wow. 85. Congratulations Wedgewood on living with this for so long and figuring it out. It must have been so difficult. I'm so happy you found your families deadly medical secret and that you are being treated and that you are not suffering the same terrible outcome that your mother did. My family will not listen to me at all about pernicious anemia. It runs in my family my grandmother had B12 injections and died of stomach cancer. My cousin has stomach cancer I've tried to tell her that her symptoms are of B12 deficiency. I sent her all the information and I haven't heard back from them. I can't get any of them to listen to me. I just tried to tell my sister yesterday about it. She's an alcoholic has diabetes, takes metformin, takes Omeprazole, drinks probably 2 5ths of whiskey a day. Has psoriatic arthritis and all kinds of other issues. And I'm trying to tell her that if she had B12 deficiency, it might help her with her alcohol abuse and her depression. There's nothing we can do to talk to people and explain to people that don't want to listen to us. It's a really sad situation. Thankfully, this forum has helped us all so much. We can help ourselves and only hope to help others, if they will hear us.
Yes , it’s hard work trying to inform others , including family , about B12 deficiency and it’s consequences. So many people worship at the shrine of the medical profession.
We know, to our cost , how mistaken that is . It’s been a long , horrible journey to discover the facts about P. A. it’s quite a dauntingly high wall that we have to climb still . But we know that we will get there in time . Truth will out !
Hi EllaNore - I hope this message reaches you well. When I read your reply above it set alarm bells ringing within me. I have suffered for a few years with neurological symptoms - tinnitus, numbness, tingling, vision disturbance, twitching, spasms and I recently stumbled across B12 injections almost by accident but after my second injection my symptoms are subsiding and already I feel much better. The reason for the alarm bells - my grandad (who i never met as he died when my dad was a boy of 15yrs old) died of stomach cancer and i too have recently had my own stomach issues and was diagnosed with gastritis and put on Omeprazole for 1 month. Please can you tell if there is a link between B12 deficiency and stomach cancer and what I can do to help myself and potentially my young children (10 & 3). You mentioned that your grandmother sadly passed away from stomach cancer despite taking B12 injections - how else can we protect ourselves? I am 38, M, from the UK. Best regards, W.
Good morning rise3shine, thank you for the well wishes. I hope your are well too. I'm sorry if I frightened you with what I posted. For me I'd rather be scared to know the truth then to be left in the dark and find out when it's too late about things. Which is almost what happened to me. I'm very lucky that things are not worse for me than they are considering how long I went undiagnosed. My grandmother passed away in 1971. I don't think back then they knew as much as they do now about what caused her stomach cancer. I don't know if she got injections after she found out she had cancer or before, as I just only found out a couple weeks ago that she even got injections. I think it may have been too late by that time for her. I am not that well versed in this, I don't know all that much about it as this is only my 6-month into this. Even though I suffered from it for three decades, I only recently found out. But what I know is, the lack of protective lining in your stomach leaves it susceptible to ulcers and cancer and things like that. Nobody in my family realized that this runs in my family until I was diagnosed with it and they still won't listen to me. It can be hereditary or can be caused by medications, etc. Somebody else here who knows way more about it could probably answer this better than me, but I believe it starts with the lining of your stomach called the mucosa, it gets eaten away by things such as medications and that leaves it open to disease. Medications like Omeprazole metformin, taken for diabetes, and PPIs, they can cause issues with the lining of your stomach. I was told instead of omeprazole to take pepcid AC famotidine, also I found that drinking carbonated soda water also helps with stomach issues. Omeprazole is a double edged sword they give it to you to help you but actually long-term use of it is destructive. I also have gastritis and a hiatal hernia and the lining of my mucosa is in bad shape and my intrinsic factor test has come back positive for antibodies. So my stomach's pretty messed up. But I do not have cancer and I believe that if I keep on top of everything like this that I can keep from getting it or at least catch it at early stages. Other things like alcohol abuse, other kinds of prescription drugs, maybe even hard street drugs could cause damage to your stomach. Today I'm going for a SIBO test. In fact I have to leave in 15 minutes and that's going to be about a 3-hour test where I breathe into a machine and it detects whether or not I have gases caused by bacteria. Knowing all these things about my stomach and my intestines would be really helpful to keep me ahead of the game. As far as it goes for you, I would just make sure I read all about the things that could hurt your stomach. I believe even Motrin and ibuprofen is not good for your stomach in large amounts. I take acetaminophen and unfortunately I have to take it regularly but I was told it was the safer thing to take. Ibuprofen caused kidney failure on me in 2006 but I have very strange reactions to medications which I didn't know why at first, but I believe now that it's because of my pernicious anemia. If you haven't already, I would get an endoscopy, I would have your intrinsic factor tested. Have you been diagnosed with pernicious anemia? With your symptoms and your grandfather's history, I would get all of the tests you need for pernicious anemia.B12 serum, MMA, Homosistene, and an IFAB test. To start. Those are the tests that will determine whether or not you have pernicious anemia. If other people in your family suffer from all of the same symptoms it would be likely that it could run in your family If you have several people that have similar symptoms. I'm talking cousins uncles aunts nieces nephews anybody in the family. It's important that you do get some tests and get diagnosed for sure because you do want to tell your children you do want to make sure that anybody else in your family is okay too. You're doing the right thing by taking the B12. However if you're going to go get these tests done you should stop taking any B12 about a month before you get any tests to make sure that it doesn't skew any of your results. You want to make sure that when you get your B12 serum test you have no B12 in your system and that it is very low as low as it can get so that your test results are accurate. Right now the only thing I can suggest is that I would try to find something besides Omeprazole to take. My doctor told me it was okay to take for a week or two to get me out of a spastic situation, but it's the long-term use that's harmful. I have a friend who's taking it since she was 17 years old and is now 60 and has pernicious anemia. I don't know how long it takes to cause trouble, but possibly just take pepcid AC. And maybe you could try to eliminate some foods that could be causing issues with your gut. I'm sorry that's all I can offer as to how to help. I'm hoping that if I have anything incorrect in here somebody will correct me. And maybe somebody else will be able to offer more information there are people in here way more knowledgeable than I am with this. I wish you and your family the very best. If you could find out if you have it it would surely help anybody in the future if it is a hereditary issue with your family. Good luck to you. I hope this helps a little bit. Make sure you ask all the questions you need to ask. Even start a thread so that anybody can answer you directly. Sometimes posts on other people's threads get lost. So if I was you I would start a thread and ask these questions so that people can come on and help you better than me. Okay I have to run again I wish you the very best. Good luck 🦋
Hey EllaNore. Wow! For someone who is not well versed you are really very knowledgeable, kind and helpful. I really appreciate you taking the time to give me your thoughts and advice and for sharing your story. What is increasingly clear to me is that the medical professionals in our respective countries have an awful lot to learn themselves regarding B12 deficiency, PA and how it affects us. I have lost count of the doctor, hospital, consultant, neurologist etc appointments that I have had and the various X-Rays, MRI / CT scans and blood tests which have led me down so many rabbit holes but ultimately failed to give me a diagnosis. I have booked a doctor appointment now that I am armed with the helpful advice from yourself and others within this forum and in the meantime I will continue to research and monitor my symptoms. One thing is for absolutely certain, the B12 injections have had a hugely positive effect on my mental health and my neurological/physical symptoms too so I will continue to get these (at the moment in the UK I can get max. one per month at £27 per time with VitaJab) so not too bad at all really. With a PA diagnosis, assuming that is what is wrong with me, then I may have access to more frequent treatment. I really hope that your test had a positive outcome today and that it has given you the answers which you need. I wish you all the very best too and every bit of luck in your pursuit of health and happiness. I am sure we will all get there in the end ☀️
You mentioned taking information to your doctor appointment. One source of information particularly useful to doctors is an article from a peer-reviewed medical journal. One article in particular that might be helpful to a doctor is "The Many Faces of Cobalamin (B12) Deficiency"
I suggest clicking on "PDF" in the upper left corner, then printing out the article in the format in which it was published.
Parts of the article that might be particularly helpful:
In the first column, the authors describe two populations of patients with B12 deficiency: patients with blood symptoms; and patients with neural symptoms; and there is very little overlap between these groups. This will be news to many doctors.
Early in the article, there is a box in which the authors have summarized the most common misunderstandings doctors have regarding B12 deficiency diagnosis and treatment. Giving doctors this information heads off the most common problems right off the bat.
Several pages into the article you will find a heading that says something close to this: "How should B12 deficiency be treated?" In the first paragraph under this heading is the very important information that B12 deficiency patients with blood symptoms should receive one treatment regimen, and B12 patients with neural symptoms should receive a different treatment (injections every other day, or one or two injections per week, for up to 2 years). A bit further in this section, the authors explain to doctors why treatment should be injections rather than pills. (If you are in Great Britain, you should find Sleepybunny's references to guidelines for GB doctors in prescribing treatment, and use that to supplement this section.)
Thank you WiscGuy . The link you shared was most interesting and is compounding for the seemingly scattergun approach taken in treating people suffering with the same or similar symptoms. I managed to get a same day appointment at the doctor this morning and I have blood tests for B12 and PA booked in for 25/11/22. The doctor also took stools to test for H Pylori and has put me on the (year long) waiting list for a gastroscopy. Following my blood results and the subsequent advice (and hopefully diagnosis) which the doctor gives me I shall consider writing a letter and presenting the information supplied in the links and info given to me by yourself, EllaNore and Sleepybunny . Thank you all. Your help is deeply appreciated. Have a good day all.
Hello rise3shine , sorry it took so long for me to respond. Lots of Doc appointments this week. Sadly they were not good. for the very reason you say here.
"I have lost count of the doctor, hospital, consultant, neurologist etc appointments that I have had and the various X-Rays, MRI / CT scans and blood tests which have led me down so many rabbit holes but ultimately failed to give me a diagnosis."
This is the story of all of our lives I am pretty sure. Literally hundreds of tests. And probably a hundred doctors over 38 years. I just want to reiterate, that if you can do without B12 for a few weeks before your IFA, MMA, MCV, and other tests, it would be best to not take any. Several doctors have said my IFAB test is a false positive due to that I had already had a b12 injection and it muddied the waters. So now, I either have to stop taking B12 for a month or more until my B12 levels go down and take another one. Or just live with my doctors not believing I have PA. They believe I have B12D but not PA. So do yourself a favor if you can stand it, try not to take B12 for several weeks before tests. You want the best results you can get or your battle will be never ending. At least that is my experience. After 38 years, I thought I finally had my answers but 4 hematologists and 2 doctors don't believe my IFAB results. So I am back to square one.
Anyway, I think that article that WiscGuy posted will be very helpful. I can't wait to read it all myself. Anything I know, I learned from these wonderful people here. They are all so smart. If I can be of any help, I am happy to do so.
I don't know about others, but an MCV test could be helpful. That is the test to show how large your RBC are. If they are enlarged, it is a sign of megaloblastic anemia. My doctors refuse to look at that. Mine are enlarged but even though I showed them today my results, they still don't think they are enlarged enough to be PA.
So, even with conclusive blood work, you can still run into a brick wall with doctors.
Good luck to you Rise3shine. I am anxious to hear your test results. I wish you all the best in your tests. Please do let us know. 🦋Take care
Also it wouldn't be a bad thing to find out if your children have a B12 deficiency. But you might want to get all your tests first before putting them through anything. But making sure that you find out while they're young would be ideal. Good luck
wow that is saying something in the GPS face there that it runs in the family . I feel so sorry for and to having to keep fighting for these injections
I'm so sorry your mother suffered so. Poor thing. That is very sad. It is very infuriating to know thousands of people are suffering like that even today. Why haven't they figured this out yet? It is my biggest fear to have a stroke or something and be hospitalized with no access to my daily B12. I'm terrified of that. Your mom passed away not understanding what was truly wrong with her. It wasn't her fault. I'm so sorry.
For about 6 months prior to B12 shots I had severe anxiety. I really didn't know how I could continue to exist feeling like that. I self diagnosed my B12 deficiency because of neuropathy in my toes. When I got my first B12 shot, quite unexpectedly, I felt a wave of calm wash over me. I hadn't felt like that in so long, it felt so good. It took a while for the anxiety to mostly go away, but It will come back if I wait more than a month for a shot.
Another unexpected result of receiving treatment was complete eradication of my social anxiety. I had social anxiety for most of my life and was seeing a therapist to work on it. After a couple of months of treatment I noticed that I wasn't feeling nervous in social situations. When I was at a party or other social gathering I would think in my head "Why am I not nervous?" My therapist was amazed at my transformation. I told her I thought my new social assurance came from my B12 treatment. She said she was going to recommend all of her patients with anxiety have their blood tested.
You know how society depicts socially awkward individuals in movies and TV as nervous, pale, shaky, etc. I wonder if they are just B12 deficient?
Hi, I hope you are now on the mend and the anxiety is better.
I have Hypothyroidism for 12 years now and never felt well, always telling my GP how ill I was. I take Levothyroxine 75 mcg split into 2 doses, 50mcg in the morning and 25mcg inthe evening. For the past 2 months I have had awful paresthesia in head,arms, legs, hands, face and severe joint pains. Went to GP sent for MRI CT scan all normal. She has prescribed Vitamin D , Folic Acid 400mcg daily, Vitamin B12 50mcg daily they are called Cyanocobalamin. I am having terrible anxiety which is unbearable. I have no appetite and only managing to eat a yoghurt if that some days, I feel nauseous with awful pains in my stomach. No energy and practically bed ridden. My B12 result 329.0 [ range is 211 -911.0] T4 11 .4 [10.5 - 0.35 - 21 .0] TSH 0. 97 [ 0.35 -5.5 I am unable to concentrate and balance and walking is very wobbly. GP is saying my B12 is on the low side and is phoning me tomorrow after speaking with her colleague about B12 injections, which I think I need. I also have a very sore and inflamed tongue and mouth ulcers, my vision too is very blurred.
Any advice greatly appreciated and thank for all the help we get on this forum. Take care,kind regards Bubba🌺🌺🌺
I am noticing the same thing about being socially uncomfortable. I'm a very reclusive person. Mostly because I'm always ill so I just stay to myself. But also, anxiety in social settings. Major anxiety. That has definitely changed considerably!! Thanks for telling a bit of your story. I saw myself in it. So glad you found relief. I've suffered all my life from major anxiety. That is so much better with B12. I'm am so much more at peace internally. Thanks to B12 and this forum and my therapy. Finally.
I had very few symptoms leading up to the deficiency apart from depression and anxiety. So much so that my partner pushed me to see a counsellor for therapy.
The only other symptoms I had were tingling and pins and needles. But when the deficiency came into full effect, my whole perception distorted. I slipped into a realm of psychosis and by the time I managed to get through to a GP during the final lockdown in early 2021, I got very confused with what was said to me. The GP's reply made me think I needed to wait for him to get back in touch with me for a blood test.
After 7 days of waiting, and being unable to phone the surgery, I panicked and started taking a high dose sublingual. I wrote an e-consult and got a text message at 6.30pm two days later saying 'I left your blood form at the surgery on the day we spoke'. He didn't tell me that on the phone, I just heard something very nebulous and started panicking because I felt that my body and mind was falling apart and I needed urgent attention.
It seems very few people get psychiatric symptoms. Either that or they don't admit to them. For me, it continued to be very severe for months and to the point where only every day injections resolved the insanity. My partner almost left me. And I needed CBT to stop me from suicidal ideation.
I had a taste of dementia and psychosis that I wouldn't wish on anyone. It was a terrible, inescapable place to be. I hope others can try to remain clear headed if their deficiency strikes during these testing times. I would've gone to the GP earlier but I'd been in and out of the surgery and hospitals for about 2 years with many other things: parotid gland tumour, thyroid nodule and surgery on both, colon cancer screening and colonoscopy. I had been 1 year prior with strange feelings that I'm sure was the deficiency emerging and the GP then signed me off work for stress and tested me for diabetes. So I had to get to the point of total deterioration to get a speculative diagnosis and then blew it because I couldn't think straight.
Even then, I got the feeling the GP didn't really believe me and wrote 'Neuropathy?!' on my blood form to which the nurse asked me if I had diabetes. When I said no she looked very confused.
I thought neuropathy was pretty much a number one sign?
B12 is severely underestimated by everyone, not just medics.
Wow that's a very interesting article. I think they should do B12 evaluations on anybody suffering from any mental illness. I know that this has caused me some very depressing moments. I'm so lucky that I didn't suffer from any kind of delusional thoughts. What a scary and terrifying thing to go through for anyone. What are relief to find that B12 can turn that around for people. Thanks for posting.
On the subject of mental health conditions with PA, I've had episodes of depression throughout my life after a severe viral infection when I was 20.I now think it possible that my B12 problem began then in an intermittent way. Now, at 72, the B12 issue has become PA after taking Ranitidine and then Omeprazole for twenty years to improve my menopause symptoms and reflux. Which Ranitidine did. But with every prescribed drug comes side effects, as we know. And the PPI made my B12 problem continuous and permanent. And I think the PPI situation made it possible for my GP to think in terms of a B12 test. I now need injections monthly, half NHS and half privately. Mentally, since the injections I feel as if I've been freed from a living shroud. Physically it will take longer as aging impinges. But now it is all possible.
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