I have major depression right now but I also have this stubborn b12 deficiency battle that’s been going on since pre covid. At this point I can’t tell if it is caused by the deficiency or something else. I was taking a med that could have been contributed to the b12 deficiency but I stopped, I’m in need of a blood test to see if my numbers have bounced back up. I’ll just say it is the worst I’ve felt in my life. I don’t have a lot of physical pain right now surprisingly but the mental pain is unreal. It’s a constant heavy emotional pain, severe brain fog that will not lift. It steadily got worse over the past few months. I still have to wait a week until I can get another b12 injection. Please is there anyone else who’s had severe depression along with PA and how could you tell that the PA caused it or if it has some other origin? I hope dearly that once I’m back on regular injections that I’ll start feeling a whole lot better. I’m hanging on a thread right now. No suicidal thoughts but just feeling like I am dying 24/7 and feeling the intense need to lie down in bed in the fetal position and not get up or do anything.
Major depression & B12 deficiency - Pernicious Anaemi...
Major depression & B12 deficiency
I've not personally experienced this.
However it happens with b12 deficiency/ PA .
There is no harm in trying a more frequent b12 as a trial to see if it is the cause or a major contributing factor.
You don't say what NHS regime you are on.
Consider self injecting to add to your NHS prescription.
Meanwhile request a more frequent trial.
Gos work with 'trial and error ' with many drugs ......why not b12?
Other deficiencies can cause depression and definitely hormonal changes .
Sleep problems ect.
Hope you get solutions very soon.
Glad you are 'on the ball' and trying to work through it.
Anti- depressants certainly have there place
See what your bloods show.
Make sure they are explained.
B12 numbers mean nothing g when on injections
Should be kept high.
Wishing you improvements soon. .
Perhaps read about serotonin ect
Take care
Thanks. I was on injections but I stopped in Jan so it’s been a while off of them. I’m not from the UK so I’m not on the NHS regime, my neurologist is managing it but he isn’t an expert at it and mostly just goes with whatever I ask now adays which is cool but also I wish he knew more about PA and b12 because I’m not an expert either. But at least if I ask for weekly injections he usually gives it. I had to stop the injections because my school had difficulties getting the prescription filled and we thought maybe I should wait and see if stopping the med might stop the deficiency otherwise I’ll go back on. And then here we are. At least I’ll be back home soon where I can get an injection asap. But I’ll be living in the uk for the month of may into june so other than getting 1 injection at home I’ll have to wait about 6 weeks until I get any more. I hope it won’t be an issue. Idk if there is a way I could get it in the UK if I am not a resident.
Take it with you as neurologist prescribes.Do sc
Sounds lije a mistake stopping I'd it ties in with mental health decline
Yes definitely!! And low folate as well. Depending on where you are, likely there are places you could order online from. If you share where you are, we might be able to help. Once in the UK, you can easily order from germany yourself. I don't know about residency requirements for prescription b12 since i'm not in the uk.
In my case thyroid problems and low Vit D also contributed to depression. Worth getting those checked too at some point, if you can.
Hard to tell what's causing it, just need to treat deficiencies one by one. Getting on more frequent b12 might help.
Take care
Thank you. I’m from california, but for university I live in a different state. When I’m in california I have no difficulties getting the injections but it is trickier in the state I live in for school (tennessee). I’m planning to go back to once a week injections this summer in california and maybe that will help and then see about getting them for the fall at school.
If you can get your neurologist to prescribe them, you can get either cyano or hydroxy at any Walmart pharmacy in any state, I believe also Walgreens and perhaps others. You would have to self injection (SI), but many of us do and it's quite easy. My relative in the US was taught how to SI by her pharmacist, and she gets her hydroxy from Walmart with a prescription.
Actually I don't see why a Walmart in TN wouldn't be able to get them, even if your school has difficulties. Then you could still get the school nurse to inject it if you wish.
If you want to order them yourself, see for example these two posts:
Cyano via Canada to US healthunlocked.com/pasoc/po...
Hydroxy and cyano via Germany to US healthunlocked.com/pasoc/po...
Hope that helps. Good luck!
Thank you so much for your help <3
Do your own injections then it won't matter where you. In addition yes my mood plummeted b4 I got diagnosed with pa. Also get your thyroid checked , low mood is a very common side effect of hypothyroidism, which in turn is a common comorbidity to b12 deficiency
I can relate as my mental anguish has been unbearable at times, what worked for me is taking Lmethylfolate as it is common to not convert regular folate ,Lmethylfolate is used to treat depression, google and research to see if this could apply to you, it’s cheap and easily available .. anything is worth a try
I was diagnosed with depression and took all kinds of antidepressant for 30 years - none helped at all neither did psychotherapy. Eventually I was diagnosed with bipolar disorder type 2 and given mood stabilises and they didn't work either. Just before that I collapsed one day and rushed to hospital by a paramedic - they quickly found I was extremely anaemic and gave me transfusions - over 3 days they confirmed I had PA and gave me a handful of loading doses and I then top ups every three months. I managed to get these increased to every two months but my requests for more frequent treatment were rejected.
I found out so much from the PAS that when I started to fall over and stagger all the time I decided to self inject every other day using B12 I bought from Germany. Within a month the depression was gone and other things became apparent, such as eye glands, saliva glands started to work again. Short term memory returned and more and more of my long term memory is returning. Its been 2 years now and I will start to reduce injection frequency till I discover the best treatment for me. Its likely to be once a month as thats what the original research found. I hope you find the best treatment for yourself soon. Best Wishes.
My symptoms have never been as severe as yours, but your comment regarding saliva caught my eye. A couple decades ago I developed swelling on both sides of my neck, right under the jaw. I asked several medical professionals about but all were puzzled. Last year I began injecting B12, and the swelling started to subside. One day, to my surprise, I noticed I had a lot more saliva, and an off taste was gone.
There's no doubt that B12 deficiency can cause psychiatric responses that mimic any of several psychiatric disorders. I have read in several places that psychiatric symptoms can be the first symptoms that appear as a result of B12 deficiency. These symptoms can include irritability, or can mimic depression, bipolar disorder, and psychotic disorders.
I am starting to think that there might be two separate disorders associated with B12 deficiency, with two separate sets of patients, and two separate sets of symptoms (with very little overlap), and two separate regimens of treatment. I wonder whether this is part of the reason doctors are so confused by B12 deficiency. My understanding is that in medical training, one thing drummed into medical students is that a disorder should have one set of symptoms and one regimen of treatment. That's why, my hypothesis goes, doctors are so insistent on treating B12 patients who have neural symptoms with the regimen of treatment that works with hematologic symptoms.
Well said!
I am starting to think that there might be two separate disorders associated with B12 deficiency
This is touched upon in at least one paper I've read. I think it may be 'The Many Faces of Cobalamin Deficiency' but I may be misremembering.
That paper ("Many Faces" etc) speaks of two populations of people with B12 deficiency, I believe in the introduction, and, in the treatment portion, notes the separate treatment protocol for each population. But I don't believe it states or implies that there are two separate disorders, and I haven't seen the notion mentioned anywhere else. I think the notion of two separate disorders is most interesting as an explanation of physician behavior.
I see what you mean. I've never seen it referred to as 2 distinct disorders. Interesting idea. Definitely needs more research into why some are predominantly neurological and others hemotological! Though one eventually will end up with the other if untreated. And don't forget all the (rare) genetic ones (eg cblA-X, TCN2, etc), which are in their own right already separate disorders with completely different treatment regimes (usually weekly or more frequent). I was reading on another post that GPs were even ignoring specialist recommendations for treatment in those cases! So it's not for lack of knowledge or guidelines. Even the UK guidelines for neuro involvement state alternate days injections until no further improvement, and that's clearly ignored from what you read here. A sorry state of affairs all around.
Sorry for hijacking your post Purplegirl2. If people could access treatment when they needed, we wouldn't need to have these long conversations. Unfortunately you're far from alone in this. Though that in itself is sometimes comforting lol , at least we can commiserate together and learn from each other.
No need to apologize! I love when these discussions happen. Now I’m curious to read about this myself. What exactly do you mean by neurologic vs hematologic? If someone has megaloblastic anemia with their b12 deficiency does that count as hematological?
I love a good discussion as well 
Note I've read a lot about all this but I'm not medically trained, so do verify everything I say using proper sources. So from my understanding:
Megaloblastic anemia = hematological. Usually seen as high MCV = enlarged RBCs = megaloblastic = macrocytosis. But other things can be seen like increased RDW (distribution of red blood cell width meaning a wide range of RBC sizes are seen, from small to large). Low iron can cause small RBCs, so MCV may not always be reliable, since it's just an average volume. RDW can be more informative, but still inconclusive in some cases. I think it is called an "anemia" because the RBCs are in fact immature and mis-shapen, so they cannot do their job properly. rarediseases.org/rare-disea...
The issue is the following:
"An estimated 20% of patients with neurological signs do not manifest anaemia [13]. Clinical features of anaemia may be minimal and the blood indices may not reflect important anaemia." [see Hunt 2014 reference below].
And that seems to be quite common, as you can read here. In these cases, the neurological symptoms seem to hit long before the blood shows any changes in MCV, MCHC, RDW, etc. I'm in that category myself. And because doctors are looking for changes in the blood, they discount B12D because your blood doesn't look "anemic".
The other great paper I referred to earlier is "The Many Faces of Cobalamin (Vitamin B12) Deficiency" [Wolffenbuttel 2019 ref below].
Already in the abstract they have a paragraph on exactly this conundrum. And that neurological symptoms aren't merely neuropathy and parasthesia, but can be psychiatric. Why this is so overlooked by so many doctors just boggles the mind.
"Lindenbaum et al4 reported a large series of 40 patients who had neurologic symptoms or psychiatric disorders caused by vitamin B12 deficiency but who had no anemia or macrocytosis. Psychiatric symptoms may vary from depression to mania, psychosis, and occasionally suicidal thoughts (Supplemental Table 1, available online at mcpiqojournal.org).5 The reason why some patients mainly present with megaloblastic anemia and others with neurologic symptoms remains unknown."
I *highly* recommend reading this paper. It is not too difficult (well, unless the brain fog is bad).
So basically there appear to be two categories of people, at least with PA. Some that present with hematological issues, without the neuro involvement. They might possibly do fine on less frequent injections [my conjecture here, I have not read any source claiming this. By frequent, I mean for example daily, EOD, weekly.]. Then there are the people with neuro involvement (and may or may not have hematological issues), and they need frequent injections, at least "until no further improvement" [Which is also very subjective. Some of us are still improving years later, albeit more slowly.] .
But the fact that it's predominantly hema doesn't mean neuro symptoms won't develop, and vice versa. That is, someone with the hema disorder that goes un- or under-treated will eventually develop neuro issues. And vice versa. So that's why I don't really see them as two distinct disorders. But for sure there is something different going on in people who initially present with neuro symptoms without hema issues.
BTW small personal rant here. The terminology in the US is terrible. If you search for pernicious anemia, you won't find tons. It's usually called megaloblastic anemia and it refers to any type of B12D that mainly affects RBCs, whether it's PA or not. So some sites can sound quite confusing because of this. And it's mainly covered by hematologists, rather than neurologists or gastroenterologists... as far as I understand, having researched it for my relatives in the US. The UK is actually much better at all this PA stuff. They have good guidelines (even if the doctors don't follow them). The US has no national guidelines, and it all seems a bit ad-hoc. I don't know if it's because the prevalance of PA is lower in the US, or some other reason.
Folic acid is also important in all of this, as it works together with B12. You can have all the B12 in the world, but if your folate is low, B12 won't be able to do its job properly.
Hopefully this was clear. I tend to ramble and go off on tangents LOL!
A. Hunt, Vitamin B12 deficiency, BMJ 2014. bmj.com/content/349/bmj.g5226 (Full text not available but if you want a copy, PM me with your email address. This is a good paper.). Reference 13 is Quadros E. Advances in the understanding of cobalamin assimilation and metabolism. Br J Haematol 2010;148:195-204 ncbi.nlm.nih.gov/pmc/articl... (full text available online). This also looks like a good paper but I haven't read it.
Bruce H.R. Wolffenbuttel, The Many Faces of Cobalamin (Vitamin B12) Deficiency, Mayo Clin Proc Innov Qual Outcomes. 2019 Jun; 3(2): 200–214. ncbi.nlm.nih.gov/pmc/articl... (full text available online).
Wow. This is so helpful!! Thank you! I will definitely be reading these articles & sharing them with my doctors! I was diagnosed with macrocytic anemia two years ago.
I’ve had a combination of different hematologic and neurologic symptoms over time.
Good point about the genetic causes of B12 deficiency. I still like the idea of two separate disorders, blood and nerves. Perhaps it should all be referred to as "the cluster of disorders associated with B12 deficiency". I do think it would help with the problem of physicians being confused about appropriate treatment.
Hi Purplegirl2. I just read through some of your previous posts. My heart breaks for you. One thing that came to mind is getting an injection at a health spa. Funny enough that's how my mother got her first shot - I went with her to get the first shot, in case of reaction, then we switched to SI at home. If you'd like to post (or PM) the city in TN you're in, we can help you find a local spa. The one where we went in Georgia would let you come in once a week for a shot, no questions asked. The price varies by spa, but might be around $20 or so for one shot. It can be a bit pricey if you do it regularly, but it might help you get through til you get home. Avoid the IV kind as some places do that too, but they should also offer just a plain b12 shot (IM).
I'm not a doctor nor medically trained, but it for sure sounds like you could use frequent injections, at least once a week, if not sooner.
Do you know if you normally get the cyano form or the hydroxy form? If you're prescribed hydroxy, that might be the reason your school had difficulty. At some point last year, there were stock issues, but I think those have been solved. Like I said, any Walmart pharmacy can get either kind.
Then, if your doctors are not cooperating, I really suggest you look into self-injecting. Keep the regular appointment with the school or home doctor, to keep it on your record, but supplement additionally. I lived in a dorm in Indiana long ago once 
and I don't remember any restrictions regarding medications and injections - I wasn't injecting at the time but I did take meds and no one ever asked anything. We can help you order online if needed.
Last thought. You could very well have PA despite the negative antibodies. I've had 2 negative tests in the last 6 years and will go for try #3 soon. And if you do have PA, I'd even venture to guess your family has it too. That could explain some issues. But, get yourself stabilized first!
Don't forget the folic acid!
Thank you so much ❤️❤️❤️ The support I’ve felt on here is unlike anything else. I’m so grateful for this little corner of the internet. It’s all very complicated navigating B12 deficiency and it’s such a relief to read from people who’ve been through it before and have advice for me.
I'm very glad you found your way here and are finding it helpful! ❤️❤️ So many of us have been in your position and through sheer perseverence managed to get what we needed, and got better. You can do it too!
Jade, I am rereading this thread (2023-08-07) and am impressed at the quality of information provided. Rewarding, and fun, to read.
Ah, the good old days of a year ago, when I was less active and therefore had more time to write/engage with long posts 😂
Yes this was quite a nice thread and we had a great conversation! And I had forgotten about a few of these papers, will have to add them to the pinned post
Hi, I'm here in the US too. Can you ask your primary care doctor in California to give you a prescription for B12 shots. With a prescription you can take it to any Patient First or pharmacy that does injections and get your B12 shots there. That's what my sister does. I either drive to my doctor's office or I self inject. My doctor gave me a prescription for B12 vials and needles which I have filled at my local pharmacy.
Oh, I forgot to add that I had incredible, off the chart, anxiety before I started getting B12 shots. Another interesting thing was I was in therapy for social anxiety issues and after a few months of B12 shots I, and my therapist, noticed my social anxiety was going away. Now people laugh at me when I tell them I am an introvert.
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