B12 defficiency and bad behaviour - Pernicious Anaemi...

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B12 defficiency and bad behaviour

B12_curious profile image
27 Replies

I met my girlfriend 6 months ago. We have lots in common and are very compatible, in short we get on great together.

She was prescribed to take B12 injections EOD around 18months ago. She has all the symptoms of B12 deficiency. She hasn't been diagnosed with PA but she is definitely B12 defficient and can't absorb it orally. When she takes her injection EOD her health is good. If she misses an injection she deteriorates rapidly with tingling limbs, sensitive skin, sore tongue, scabs on her lips etc. She recently pointed out a couple of pale patches of skin she thinks must be birth marks but I think it could be vertiligo. She doesn't like taking her injections and will often avoid doing it when she feels OK. I've been doing a great deal for her to encourage her to take them. I administer them myself when I can which helps and I try to ensure she doesn't miss one. Unfortunately I can't be there all the time and when I leave her alone she starts to skip her injections. Once she misses an injection she becomes less inclined to take it - her skin becomes sensitive and the injections hurt her much more, she also seems to lose the ability to recognise that she needs the injection. All this makes her even less inclined to inject.

As we grew closer we started to have arguments. We'd be talking calmly and suddenly she'd be triggered by something and would become aggressive and angry at me. She will shout and scream and call me all sorts of terrible names. I've always responded calmly and in a non threatening manner and and even that would trigger her more. Once she does this there is absolutely nothing I can do and I generally have to remove myself from the situation.

At first I couldn't understand what was going on - what I'd done wong. Over time I've realised there's a strong correlation with missing injections and her crazy episodes.

Once these episodes start they can last days until she eventually decides to have her injection. I can't communicate with her - she just calls me names and screams at me (and her son). I have pleaded with her to have her injection and she just says I'm nagging her and "pissing her off" she says I'm blaming her B12 instead of acknowledging my bad behaviour.

I work away. The last month while I've been home and she's taken her injections regularly and has been great to be around. She wasn't aggressive at all, quite the opposite. 2 weeks ago I had to go away again. The moment I left she stopped her injections and immediately descended into one of her episodes which lasted around 5 days. She eventually came out of it. Once she was back on an even keel she told me that she now recognises her behaviour is linked to missing her B12 injections, she was very self aware and we were able to discuss it easily and openly. She had a few good days, then she started to miss her injections again and she flipped out again.

These episodes last 4-5 days on average. In that time I have no contact with her because she won't respond to my messages. I know eventually she'll feel so poorly that she'll take a jab and her mood will improve again.

Since I met her I've read enormous amounts on B12 and I feel I've made a real difference to her life. More recently I I've started to read about B12 induced "mania" and "hypo-psychosis". I think when she's in an episode she can't think clearly and just blames her issues on people around her rather than the B12.

I don't think anyone can make her take B12. She doesn't seem willing or able to care of herself. I'm worried she's eventually going to suffer permanent damage.

Does anyone here recognise this sort of behaviour? Am I on the right track?

Thanks and sorry for the long post.

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B12_curious
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27 Replies
Jillymo profile image
Jillymo

You sound a very caring partner but the situation you are being put in cant be easy to cope with. Apparently low B12 levels can and do affect mood and cause aggression as you are witnessing............

Can low B12 cause behavior problems?

Episodic, abrupt-onset, and brief, agitated violent behavior has been described in isolated cases of B12 deficiency, 2 as in this case.

I am not medically trained but would say you are definitely on the right track. Certain times of the month can cause similar, my husband would lie low at those times as I could be foul.

Sorry I had someone at my door and briefly has to stopped messaging...... It sounds as if you are coping with a 'very dificult situation' and unless she has her injections it is going to continue. You sound very well informed on low B12 and the complications that go with it.........

Can vitamin deficiencies affect hormones?

Without it, you can experience hormonal imbalances such as: Estrogen imbalance. A deficiency in vitamin D can lead to lower estrogen levels, which can cause depression, hot flashes, mood swings, and much more. Parathyroid hormone imbalance.

Wheat profile image
Wheat

hello, from your post you have recognised and are handling her B12 Deficiency as well as possible. B12D can and does cause behavioural changes in some people.

Does she inject into the muscle (IM) this uses a lot longer needle. If she does, Subcutaneous injections are less 'intimidating' as a smaller needle is used with more sites available . Using a much smaller needle may help. atm I use 6mm 30g needle. Also, ive read that a diabetic pen can be used with 4mm needle for B12 injections.

I hope this is helpful. X

B12_curious profile image
B12_curious in reply to Wheat

Hi Jillymo, Thanks for your reply. She takes multivitamin supplements daily but I will look into Oestrogen imbalance and explore to possibility of Vit D deficiency. I do find it hard when she blows up at me. She expects me to apologise but I will not because that will reinforce the idea in her head that I did something wrong. She's been angry at me for doing one thing then during later episodes accused me of doing the exact opposite. Its a case of damned if I do and damned if I don't! I don't mind a bit of conflict, especially if it is constructive. We can and have dealt with issues. But when she has an episode she turns into a completely different person. She's great fun, sweet and very level headed normally, if she would just keep up with her injections I feel we could be very happy together. From what she's told me of her past relationships I can see that they've probably all ended the same way i.e they end up unable to handle her episodes anymore and leave her, then she blames them for being bad men. I don't want to desert her and leave her to deal with this alone but I know I can't change her. If she cannot or will not look after herself I can't force her. I can't save her. I'm afraid there will come a point where I have to put my own well being first by ending the relationship. I'm considering gently telling her this the next time she is "back to normal".

Wheat, Yes she does Intra-Muscular (IM) injections with the longer needle. They hurt her. She get nervous and tenses up which makes it worse. Your suggestion of injecting subcutaneous is interesting. I thought it only works IM but if your experience is different then its definitely worth trying. I'd be interested to hear if anyone else has had success doing it this way? I spoke to a Medic friend and he said to stab the needle in but she won't let me try that - and frankly I'm a little nervous doing it that way too. I have joked that what I really need is one of those dart guns vets use on wild animals - that way I could just shoot her with it when she least expects it 🤣

Wheat profile image
Wheat in reply to B12_curious

Yes she can subcutaneously inject B12 many of us do it here. If you want their views it would be better to raise a separate post, more likely to be seen.

Subcutaneous is as viable as I M but injected into fat rather than muscle and only slightly more slowly absorbed. It is injected with smaller 30g yellow needles: 12.9mm, 5/8" or half " or even smaller. I use 6mm length. A diabetic pen that can be filled with 1 ml would work too, almost automatic.

I do not employ a stabbing action 🙂. An injection shouldn't hurt, provided you test for these exceptions. I gently touch the skin with the needle tip and if a sharp twinge is experienced avoid as likely over a nerve or blood vessel.

One thought, is she using cyancobalamin. It contains a minute amount of cyanide, which reportedly a small percentage do not tolerate or gives side effects. We use mainly hydroxocobalamin, also Methylcobalamin.

X

B12_curious profile image
B12_curious in reply to Wheat

Wheat, I'm very sure she's not on cyano - think its Methylcobalamin.

"injected into fat rather than muscle and only slightly more slowly absorbed" Where on your body do you inject? She's doesn't have much fat on her. You say it is absorbed more slowly which is might actually be a good thing. Is it absorbed as well as IM? Would she need to inject more often to make up for reduced absorption?

"gently touch the skin with the needle tip and if a sharp twinge is experienced avoid as likely over a nerve or blood vessel." sounds like good advice.

I'm quite interested in the idea of using a diabetic pen. I'm concerned about hygiene and refilling it though. How do people do it? She gets her B12 in little 1ml glass vials.

Wheat profile image
Wheat in reply to B12_curious

This photo enclosed will give basic sites where subcutaneous injections can be given.

Ive lost a lot of weight and suddenly found injections increasingly painful, I was given advice to stretch the skin and all was ok again.

Advise to stretch and pinch skin when injecting , and at 90 degree angle.

Pinching up skin is not necessary for 6mm needles, though with little fat I prefer a little raised skin and fat to inject into. Also, to rotate injection sites to avoid damage to skin ie ' rhino skin' and hardening of fat layer underneath which impairs absorbtion.

Sorry I have not looked into Diabetic Pens. It must be ok because of a relatively recent post saying that is what they used for their B12 injections . You can try a search here but it's usually quicker to search online.

Best wishes to you both. x

Subcutaneous injections
Wheat profile image
Wheat in reply to B12_curious

unionmedico.com/disposible/ found this link on the HU site doing searches. under Auto Injectors.

Myoldcat profile image
Myoldcat

I was diagnosed with B12 deficiency/PA last December, and for some time before that had begun to recognise I was having sudden flare ups of intense, irrational anger, thankfully short lived but very unsettling for myself and long suffering husband. I was just reflecting this week that after 9 months of injecting every 2/3 days I no longer experience this. I'm 66, but can imagine if this was combined with the premenstrual or menopausal hormonal swings I used to have, I would have been a MONSTER! So I really feel for you and your girlfriend, and it seems clear the psychological changes are linked to her B12 levels.

You have done so well in helping her with her treatment, but when in that altered deficiency state it's impossible for her to think logically. The key must be regular consistent treatment, and anything that helps her to do this when you're not around... finer needles, subcutaneous injections if she's not already doing that, maybe numbing cream or ice on the site pre-injection, a reward post injection, and ongoing awareness of how easy it is to backslide. I'm sure she doesn't want to be a monster, but maybe finds it hard to accept this condition and treatment is for life..? Wishing you both the very best of luck.

GracePV profile image
GracePV

I have the same angry episodes when I am late for my injections. It feels terrible to go from loving to hateful in 30 seconds without any self control. When it happens I am desperate to get my injections so I can't understand why she tolerates becoming a monster.

Myoldcat profile image
Myoldcat in reply to GracePV

Maybe the switch is so sudden and severe that she loses her self awareness very quickly? But yes, in that situation one eventually - in one's 'normal' moments - needs to accept there's a medical need for B12, understand the consequences of repeatedly delaying treatment, and take responsibility for the outcomes...

HeartyGilly profile image
HeartyGilly

You sound very caring. But I think it is time for a serious talk with your girlfriend. She is an adult and has the responsibility of a child . She needs to take her health seriously and look after herself in order that she can look afte her child. Why is she behaving irresponsibly? What would happen if you were not there to encourage her? Time for a serious talk. And a discussion about calling in professional help.

tomdickharry profile image
tomdickharry

Maybe she could take very large doses of liquid B12, orally? Not a perfect solution but before I found SI I was taking 25000µg methylcobalamin every day. That restored my sanity enough to avoid entry to a nursing home and helped me find injections.

B12_curious profile image
B12_curious

All, Thank you for your feedback. It is very reasuring to hear that there are others out there that recognise her episodes. I think I can rule out mental illness and attribute it to a lack of B12.

GracePV, "loving to hateful in 30 seconds" is exactly what I'm experiencing. I think Myoldcat is right that the switch is so severe she's unable to recognise what happening. She attributes her "bad feelings" to something I've said or done and can't introspect anymore. After our last interaction she hung up on me and messaged saying "don't blame your shi**y behaviour on my B12". That was 3 days ago and I've not heard from her since.

Myoldcat, I think I'll try the subcutaneous. She responds very strongly to rewards even if it's just verbal praise. I've actually just started sending her small rewards in the post when she reaches milestones with number of injections. Its laughable really and very childish, which she readily admits when she's "normal". You're right she does need to take responsibility for her own health and the consequences of her actions. The last time she was "normal" she did say that she is starting to recognise how B12 affects her behaviour there was a hint of remorse.

HeartyGilly, Yep. There's a serious talk coming for sure. I need to tread carefully though. I'd rather help her than destroy the relationship. I've never met anyone like her before, I feel she's rather special. I've taken the time to figure her out and I'm not sure anyone else would bother. Even her parents seem to have given up on her. They've pretty much said that they don't expect the relationship to last.

B12_curious profile image
B12_curious

Hey everyone. I'm overwhelmed with the wonderful responses I'm getting. THANK YOU ALL!

tomdickharry, WOW that is a massive dose! I've had her on a sublingual dose of 3000ug of 50/50 Adenosylcobalmin and Methylcobalamin. She takes it EOD when she's not injecting. She is very good at that which I guess shows she will look after herself. I've also got her wearing B12 skin patches. Neither seem to have any effect - or at least it is very minimal. Increasing the sublingual dose seems like an easy thing to try so I'll see if she's willing to do that. You said you're doing SI rather than IM. Can I ask why? I guess you're saying it does the job?

I think its clear the reason she doesn't inject is because it hurts. I'd hoped the Subligual or patches would allow her to elliminate the IM but it hasn't worked. So it seems the way forward is:

a) try Subcutaneous Injections to see if they're less painful while remaining effective.

b) increase Sublingual dose massively

c) have "the talk" that she's gotta take steps to stop these episodes before she damages herself or our relationship permanently

d) perhaps a lot more B12 patches? perhaps nasal spray?

wedgewood profile image
wedgewood in reply to B12_curious

The skin patches are USELESS . ( I tried them in desperation once !) A scientist told us that the B12 molecule is too large to penetrate the skin . Your girl friend could try using a very fine needle for self injection I M ( say 26G x 1 inch obtainable at medisave.co.uk ) Also a numbing cream on Amazon might be helpful .

Cherylclaire profile image
CherylclaireForum Support

Yes, I recognise a lot of this.

I was at first very confused and desperate, finding it hard to understand advice, aware that I had no patience with others, even strangers - and was arguing with people; doctors, nurses, consultants, shopworkers, librarians, I didn't really care who. The more sensory assault I was suffering (fast unexpected peripheral movements, bright lighting, noisy atmospheres, too many people around me), the worse I was. It was all too much. Then I found I was not able to function on autopilot - walking was something I was having to think about, for example.

I was also exhausted, sleeping about 14 hours a day to recover from all this extra effort.

But mainly, I was scared. What was happening to me ? Professionals did not seem to think that any of my symptoms, aside from the tiredness, were related to B12 deficiency. Luckily others here helped a lot. There are many, many symptoms not accepted by the medical professionals (even some visible ones that could be massively useful indicators for primary care) that are common knowledge here.

I felt as if I was in a nightmare that I could not easily explain to people, and lost touch with old friends because I knew I wasn't the same person. Meanwhile, I wasn't able to get back to myself or continue with my job - and was offered antidepressants about 3 or 4 times by my GP. I refused because I knew that all of what I was experiencing was directly related to my B12 deficiency. Eventually, she agreed with me and was very supportive, treating my condition adequately, giving me a diagnosis, regularly monitoring folate, ferritin, vitamin D and thyroid and referring me on to consultants to ensure she had missed nothing. She hadn't.

You sound like you are trying to understand your girlfriend, and are hoping to be able to have a better relationship with her. Maybe she needs help, too:

Doesn't she get any of her injections at her GP surgery ? If she has been prescribed EOD injections, why are they not administering them ? If this is not possible, can a nurse not help her over her fear more by demonstrating and teaching her how to do this painlessly. Anxiety is a common symptom of B12 deficiency, but to be honest, self injection is a brave step to take, and anxiety not helpful when trying to relax muscles. I used to find any excuse to delay my injection once I started self injecting - never done so much housework !

It does get easier - but only once symptoms are more under control. At the moment, she seems to be deteriorating before injecting, so symptoms are working against her.

Also, this forum was of real help to me - just being able to talk about symptoms and concerns with people who understood exactly what it feels like to have cognitive and memory issues is a huge relief, for example. Perhaps being able to identify her worst fears here would help her overcome them. There are people here who can give advice, sympathy, links to research, explain blood test results (as ex-professionals) - and most of all, there is kindness.

(And occasional mood-swings).

All of this could take some of the pressure off you both.

Gobbozoid profile image
Gobbozoid

Dude I feel for you. Unrelated to b12 my partner had serious mental health issues a few years ago that lasted 5 years and it was hell to deal with. Like with you sometimes it was like she was angry and it’s always easiest to lash out at those closest to us.

I’d suggest therapy and it couple therapy. A good one may be able to make her recognise her behavioural patterns and possible links to b12. Plus it sounds from what you say about her previous relationships she does this a lot, pushing people away. A therapist may be able to help her see this pattern and ask why? Fear of being abandoned or hurt so better to push people away? Feeling unworthy of love for some reason? There’s often a reason unbeknownst to the individual why they self sabotage but it’s often a defence mechanism kind of going into overdrive.

B12 does affect mental health. In my case I never become aggressive or angry. But I do get very low and depressed if b12 is low. Often feeling sorry for myself and unworthy of the love of my lady. But that’s the low b12 talking (really I am awesome lol).

Is she taking co factors properly? Folate, ferritin vitamin D? Without these she will suffer. I also read somewhere and you may want to do your own research but IM injections stay in your system longer that SI injections so food for thought as I read some suggesting that. Also does she drink alcohol? Take painkillers any other meds etc? I ask as I hear these all wipe out b12 so drink in moderation.

I think that’s all I can add but feel free to pm me. Also look after yourself. I feel the stress I went through with my partners mental health for all those years may have contributed to my now poor health. If she’s unwilling to help herself or self sabotaging constantly you can’t let her drag you down with her. Good luck.

B12_curious profile image
B12_curious

Cherylclaire, its very interesting to hear someone else's first hand experiences. I'm not sure she suffers the "sensory assault" you describe but I'll bare it in mind. Its made me realise this deficiency has the potential to completely alter the perception of reality as well as personality and reasoning. As a man it could put me in the firing line for all sorts of terrible allegations if she really loses the plot - and that worries me.

I believe she's lost friends over this. I'm quite sure its caused past relationships to break down too. I feel I can make it work where others have failed through compassion and understanding BUT know I must not tolerate her behaving badly toward me.

She doesn't get any injections from Doctor / Nurse. I think she was just given instructions how to do it and sent on her way. My Medic friend has given me a bunch of advice on how to do it correctly. She HATES injecting herself, she says it feels so unnatural. And yes she procrastinates over it just like you do :)

I'm certainly benefiting from this forum so I'm sure she would too. She needs more support than just me.

Gobbozoid, I'm pretty well up to speed on attachment theory. I'm not sure she has issues there. I'm not ruling it out but as far as I can tell this is solely linked to B12.

Cofactors - She takes a multivitamin daily. I'm wary of giving her anything else for fear of causing complications. I'm comfortable giving her more B12 since there is strong consensus that its impossible to OD on it. Folate, ferritin etc is something I think I should encourage her to see her GP about since too much can be harmful I believe. I'm prepared to pay for tests but not sure which tests to get? I'm led to believe some are pointless while taking such large doses.

I appreciate the offer of support. Its not easy for sure. I found her personal attacks on me extremely painful at first. Now I've realised its the B12 I don't take it so personal. Besides trying to keep her healthy the only defence I have right now is to lower my expectations, to know that there will always be another episode and that she'll come back down to earth eventually. I will do my best and if that isn't good enough I might have to put my own well being first.

Its weird to think she has no idea I'm doing so much on her behalf while she rages and ignores me.

Nackapan profile image
Nackapan in reply to B12_curious

If thd B12 is prescribed even if she was shown how to self inject shd should get help if struggling to carry out the prescription .

I have s prescription tk self inject at home I do them subcutaneously as in my last reply.

I do however have z nurse at the surgery to do IM every 6 weeks

Used to be every 4 .

I ve kept up this regime for over 5 years now.

Before treatment.

I was paranoid

Argumentative

Scared

Up snd down like a yo yo

Fatigue I'd never expetiencec before

Lose mh train of thought

Angry if interrupted

The list goes on .

I think also if depends on your personality before ill too.

Hopefully shd will take charge and get some help at the surgery

Encourage her to keep a diary .

Also to avoid caffeine ,high sugars and alcohol whilst getting sorted will help.

Sea-blue profile image
Sea-blue in reply to B12_curious

This is what I’ve been advised . Folate is a cofactor to B12 . That is B12 needs folate in order to metabolise in the body properly. I was advised to take folate alongside B12 . Folate is also water soluble . Might be a good idea to persuade your girlfriend to take a folate blood test . Look up threads on here about the relationship between B12 and folate . I am not medically trained just offering up advice I was given

WIZARD6787 profile image
WIZARD6787

There is the risk of a mental health misdiagnosis and being incorrectly prescribed harmful medications. That happens often with B12 Deficiency.

That is not to say a therapist may not be helpful only there is a risk.

I experience my emotional pathways being opened in a different way as I improve the efficacy of my self treatment. This is hard to deal with but worth it to me. It is not the result of better treatment, the issues existed prior to self treatment.

As the emotional pathways are opened in a different way it is hard to deal with and I have to intellectually know I am improving and have tendency to under treat and not eat as a way to avoid the hard work of dealing with the opening of the emotional pathways.

I write out my supplementation schedule and check off when it is done and do not beat myself up as best I can when I cannot maintain my schedule.

This is MY way and not THE way or even A way as it is evolving as I heal.

Nackapan profile image
Nackapan

Would she find subcutaneous b12 injections easier?

I've had both .

Sc works just as well.

I use 30G needles 1/2 " long 27-30G suitable any smaller its hard to deliver 1ml b12.

(Insulin is a much smaller amount )

I use z 2ml syringe.

A different larger needle is x good idea to wighdraw the B12 .

A single use b12 ampoule also needed.

I use hydroxcobalamin.

Cyanocobalamin reported to be just as good. May not last as long .

Methylcobalabin csn cause mood swings irritability in some .

B12_curious profile image
B12_curious in reply to Nackapan

I think so. "Wheat" mentioned it earlier. I'm looking into it. I was also looking at the 90 Autoinjector suggested too. But it only inserts the needle, I thought it pushed the plunger too. I'm currently considering how I could design and 3D print an autoinjector that does it all automatically. I think if the needle goes in really fast she may not feel it so much.

a-wonderful-seed profile image
a-wonderful-seed in reply to B12_curious

If you design and patent a better autoinjector than ones currently on the market do let us know! There’s a gap in the market for a really good one, and many people who’d want it, so you could make money. In my first year of SI, I burned through three flimsy clunky plastic ones from Union Medico, that weren’t worth a third of what I had to pay for them. Cleaning and repairing the devices was also a nightmare, more hassle than just injecting without. In the end I got so exasperated that I just learned to freehand IM injections instead, my thriftiness and laziness won out over fear🐣

B12_curious profile image
B12_curious in reply to a-wonderful-seed

I was originally thinking the injection had to be IM but from the advice I've received here it would seem Subcutaneous is less painful and might actually be absorbed more slowly so it stays in her system longer.

I've found the AutoInject 2 from Owen Mumford. It does Subcutaneous with a standard 1mL syringe so I think I'll buy one of those. Has anyone got experience of them?

a-wonderful-seed profile image
a-wonderful-seed

Sorry to hear you’ve been having these domestic/relationship troubles. It’s encouraging though that you’re informed and seeking more answers, and that you are empathetic to the cause of these outbursts and not responding in kind or with violence.

Fwiw, my friends & family joke that before I was getting EOD, I was twice as autistic (I am diagnosed level 1/functional) and twice as unreasonable and miserable to live with. Relatively I’m a joy to be around when on my regular IM schedule🥰🥰🥰so if it’s any cold comfort, what your gf experiences happens to others of us, too.

I do wonder and worry though whether there might be other things going on in her head or in the dynamic between you that can’t or shouldn’t be pinned on B12? To return to myself again as anecdata (only reference I have), I know that while many of my ‘autistic’ and depressive symptoms resolved when on enough B12, still I carried—do carry—a lot of baggage and emotional issues from the life before I started healing, and those would have been painful cuts & scars on my psyche whether I had PA or not. It’s just that lack of B12 made it harder to see or deal with these issues, because I had no energy or clarity and I was distracted by constant physical pain. Likewise, perhaps seeking outside psych/emotional support for her or you both could be an option?

All the best to you both, whatever you decide🫶🏻

Hectorsmum2 profile image
Hectorsmum2

amazon de in germany sell a brand of B12 called pascoes that I prefer to use as less painful than most brands of B12 this might help with her complience with treatment. B12 injections can be very sore. Pascoes less so most of the time.

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