Severe mood issues

Hi everyone

I've read people can have mood issues quite severely too with pernicious anemia. Over the past year or so I've developed severe mood swings, irritability, becoming more impatient, and even thoughts of losing it or going crazy. I'm not sure if its 100 percent from pernicious anemia but if it is how long after starting injections would these symptoms clear up? I've only very recently started my first injection since diagnosis even though I was diagnosed 2+ years ago. My doctor had me taking b12 supplements and I've always thought it wasn't enough as my usual deficiency symptoms were still present and my neurological symptoms were and still are terrible. As a reference my last labs showed b12 level in the 400s and folate was high. Not sure if that can indicate anything or not pertaining to my mood issues. I'm also not sure what type of Doctor I would see for my mood issues except a psychiatrist but if my issues are from pernicious anemia I'm not sure a psychiatrist is needed. Anyone have any advice on this? Thanks!

16 Replies

  • Not sure how relevant it is but both my friend and i have severe grrrr moments before injections and for both of us it eases considerably after. Im essentially a happy person and knew something was wrong prior to my initial injections as i had turned into a moody, nasty complainer, now im much like i used to be.

  • I got better enough at one point (when having injections twice a week) that people were commenting on it: hair, skin, nails etc. Can't say that these are the symptoms I'm bothered about, being a woodwork tutor (woodworkers never have any good nails outside of their toolbags). The mercurial mood-swings, memory and cognitive problems are the barriers currently preventing me from being able to do my job safely or effectively- teaching legislation concerning, and safe use of, industrial machinery a good example of where I could be a risk. Dizziness also not welcome in woodmill !

    These symptoms also seem more difficult to get rid of. Still, better now (one injection a month) than I was when on 1 injection every 3 months, when I really felt that I wasn't in control at all. Other people will have had a different experience.

    Once you have had injections or other supplements, serum levels aren't entirely "yours" anymore, so become irrelevant markers. All of us are different- in symptoms, in recovery, in needs- so there is no fixed point (timeline or levels) at which a certain symptom will manifest itself. If you need B12, you need it and hopefully you will lose the impatience, irritability and other moods (which may include crying too- in case depression is mentioned).

    Worth trying a vitamin before trying a psychiatrist, I think! Best of luck.

  • Experts correct me if I have got this wrong.

    Supplementing B12 does not work if you have PA. You must have injections.

    About mood - when I have my injections I am my usual cheerful self. If it is delayed or missed I either cry into my laptop and/of mutter "stupid idiot" or worse under my breath.

  • I am not an expert... But my understanding is that normal strength supplements, say 50mcg which is what a GP is likely to prescribe are not strong enough. Once you get to 500 mcg or more, even with PA you start to absorb enough to treat PA. I would say 1mg per day is the minimum to start, but frequent injections are much better.

  • I've been quite badly affected by my B12 deficiency in terms of psychological issues (as well as all the physical stuff, tiredness etc). I now self inject daily - I started off doing it every other day, but improvements weren't happening that fast. I felt much better initially, but after about three months or so of si every other day, I could feel myself sinking again. The tiredness came back, despite still sleeping around ten hours a night and with a daytime nap, but worst of all was the depression and mood swings. These hit me with a vengeance - no patience, irritability and exasperation at everyone's stupidity. Even though my own brain was like treacle! That's when I started injecting daily.

    What's been really frightening though are the very powerful sensations of paranoia and delusion. I've never had mental health issues and am a very pragmatic person normally. But I started getting frightened when dark clouds came, feeling very odd and as if there was an alternative reality going on that I kept getting glimpses of. Even though my physical symptoms were improving well, these neuropsychological symptoms became worse, and pretty dramatic too, for about six weeks or so.

    Luckily these now seem to be receding and I'm starting to feel myself again. That 'there's someone in my head but it's not me' sensation has almost gone, although darkness in the daytime (strangely, not at night-time!) does still make me feel uncomfortable. I was reading somewhere about the repair that happens to the nerves sending signals from your eyes and ears to your brain, where they're interpreted. I thought perhaps the signals being sent from my eyes to my brain were not being made sense of correctly, whilst these nerves healed. I don't know - luckily it all seems to be getting better.

    So I guess, Ashley8, that we do all respond differently to treatment, and as so many people have said here so many times, sometimes you seem to get worse before you get better. Hope your recovery is smooth!

  • Hi Kirsten 555, Glad your daily injections are improving your condition. I wonder if you could tell me how long you were every other day and now daily self injecting. I was diagnosed last June b12 deficiency 164. Before diagnoses I had lots of neurological symptoms including feeling in a dark place that I never knew existed. These symptoms along with agitation and mood swings were the first to go although I still get a bit twitchy with my twice a week injections. Since September last year I had every other day injections and for last 4 months or so I had cut back to 2 a week. The sensations in my feet, I think, may be getting worse ,numbness, burning, cotton wool and banding sensations driving me crazy and quite debilitating. I suppose I am needing to know if other people have to si at least every other day for over a year plus.. Kind regards.

  • Hi potter5 - sorry to hear your symptoms are returning. Maybe you should si more frequently? I know exactly what you mean about being agitated and twitchy, and feeling in a dark place! I never actually see anything specific, but feel this horrible sense of dread and almost horror, as if there's something unspeakable lurking just out of sight. It's really unsettling, and despite telling myself it's not real and just a symptom of this awful illness, the feelings of fear and dread persist.

    I'm afraid my reply won't be of much use to you as my treatment has been for less time than yours. I realise now I've been gradually depleting my B12 stores for about three years or so, until January of this year when I hit rock bottom. I could barely move, was terribly dizzy, had tinnitus and mouth ulcers and was sleeping for a good 16 or more hours a day. I didn't get a diagnosis until the end of February (and it wasn't a proper diagnosis even - the doctor said he'd give me the loading doses to keep me happy, after I'd shown him all the PAS info - but any recovery would be due to the placebo effect). I received the loading doses at the end of Feb, and was then put onto the 12 regime. But I ordered supplies from Germany and started self-injecting once a week.

    I continued that throughout March, but was disappointed by lack of improvement. I upped it to twice a week, then three times, then decided to do alternate days. This was in May. I continued on alternate days from May until the end of July, but once again, all progress seemed to have halted. I was still tired and the psychological symptoms seemed worse, although other things such as tinnitus, mouth ulcers, strange bruises and breaking nails had improved or gone. So I began to si every day, starting at the beginning of August.

    So it's only really been a month of this new regime, and I am starting to feel better at last. The weird psychosis thing is receding, only happening a little now instead of constantly, and I have a lot more energy. Given that it's not that expensive and can't do you any harm, I think I'll continue on daily injections for the foreseeable future - maybe cutting back to alternate days in October perhaps, depending on how I feel.

    I hope this is of help to you. Good luck and hope you feel better soon! xxx

  • Hi Kirsten555, thank you for reply. I will go back to alternate days and see how that goes. And although my folate is around 10 and I eat lots of leafy green vegetables I will take 400mcg folate for a while to see if this also makes a difference. I think if you see some improvement it gives hope. Glad your new regime is starting to work. Best wishes. x

  • Good idea! I take 400mcg folate daily, plus magnesium, and I'm careful to ensure potassium intake too, but naturally with banana and coconut water. Really hope you feel better soon! xxx

  • I have also just recently started taking magnesium for bone breaking leg spasms and cramp and it seems to be helping, and eat lots of potassium rich foods also. Let's hope we are on the road to recovery. Thanks again and best wishes. x

  • I had problems with anxiety and depression for 40+ years so thought it was nothing to do with B12 - it got worse when I started on the normal B12 regime as did balance and a whole raft of other symptoms. The balance etc sorted itself out within a couple of weeks ofstarting to treat myself with the amounts of B12 I needed - it was a bit of a revelation to realise about 3 months later that the anxiety and depression had gone - my crankiness will start to come back quite quickly after a B12 shot - within 24 hours so it's something that I use to monitor my B12 levels.

  • not taking a shot for one day should not affect you that way. B12 is stored in the liver, once you get your levels up it would be depleted very slowly over time even if you can't absorb via stomach/digestive system. I do not believe your overnight depression is caused by missing a shot.

  • unfortunately the way B12 is released from the liver is by releasing it in bile to be reabsorbed in the ileum so if you have an absorption problem in the ileum it is like having a very leaky tap on the storage tank.

    Whilst I am unusual in needing to top up B12 within 24 hours I am unfortunately not unique and I suspect that the problem I am now struggling with and why I need so much B12 is to do with problems getting B12 from blood to cell rather than getting B12 into my blood.

  • Hi,

    Blog post on Martyn Hooper's blog about psychiatric symptoms.

  • Pernicious Anemia when bad enough (subacute combined degeneration) causes death of the nervous system. I had no detectable B12 by the time I was diagnosed. I was close to dying I am sure. I will tell you, when every nerve in your body is dying the symptoms are more than you can count and many seeming unrelated. In my case, I was crying all the time, but then I was terrified of what was happening to me and the doctors kept telling me is was everything from a virus in my nervous system, depression, anxiety, stress, ....... Some of which I'm sure I had due to no one trying to find out what the underlying cause of all my physical symptoms were. 3 of the doctors did blood work, but did not do the specific B12 it takes to diagnose it. I am going to list "some" of the symptoms I had.

    tingling, numbness, craving Ice,wanting to breathe cold air from freezer, bladder infections due to weak muscles and bladder not emptying properly, I also have weakness in all my muscles, I got terrible headaches from I believe worrying all the time. I had vertigo, forgetfulness, confusion, "not remembering names of relatives and close friends" twitching, ticks, bad heart rhythms, skipping beats, strange cravings, sensitive tongue or what they call burning tongue. I could not stand to drink soda pop or eat anything even slightly spicy. I stuttered, short term memory was terrible. I felt like I was laying in ice or snow (pain) and yet I could not scratch or pinch myself hard enough to inflict pain, lost sense of temperature due to the cold feeling. vision changes, Loss of sexual sensation too and that started early on. Now mind you again, by the time I was diagnosed, I had no detectable B12. I need to dig up my blood work and post it.

    I only listed all of these things to give you an idea so you can not only compare but see that symptoms can be vast. PS, this is not a complete list.

  • Thank you everyone for your replies and sharing your experiences. My doctor has me on monthly injections of 1000 mcg of cyanocobalamin but I fear that may not be enough. A few weeks ago I felt delirious and not myself so I went to the ER (couldn't really describe to them at the time what the problem was..but thinking back delirious is a good term) and they did an MRI to make sure it wasn't something serious like a brain tumor but I've been cleared of that and started thinking shortly after that it may have had something to do with the pernicious anemia.

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