Your partner is getting injections every 6 weeks which is more frequent than the usual 4 times a year in UK.
BNF says maintenance injections
every 2 months for those with neuro symptoms
every 2-3 months for those without neuro symptoms
Did your partner get loading injections? This is a set of B12 injections close together at the start of treatment. How many loading injections did she get?
Some UK forum members find they cannot manage on typical NHS treatment levels and resort to treating themselves. There are forum members who need to inject monthly, weekly even daily to keep symptoms at bay.
Symptoms Diary
Your partner might find it helpful to keep a symptoms diary, maybe track up to ten symptoms, score the severity each day and note date/amount of any treatment. This could be useful evidence of improvement or deterioration in symptoms to show GP/specialists.
If symptoms get worse, start returning or new symptoms appear before next B12 injection then B12 injections might be needed more frequently.
Folate, Iron, Vitamin D
Has she got recent results for folate, ferritin (and other iron tests) and Vitamin D?
Forum members often report deficiencies in these as well as B12.
Thyroid
It's quite common for forum members to also have thyroid problems. I suggest she puts any thyroid results on Thyroid UK forum on Health Unlocked along with an outline of her story. Thyroid issues can impact mental health and it's possible to have thyroid problems even if TSH is within normal range.
In UK, GPs often only test TSH which won't give a full picture of thyroid function.
There are other thyroid tests a GP or a specialist can order.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
She might just need more regular injections , which I know your GP will not consent to . If your partner would be prepared to self-inject , which most of us on this forum do, then she can get the information here . I have to inject weekly to keep well . Also Pernicious Anaemia patients have low /no stomach acid ( hypochlorhydria/ Achlorhydria) This can lead to poor absorption of some vitamins and minerals , so she should get this’d checked , and perhaps take a modest Multi -vitamin and mineral tablet .
Self-injecting may sound daunting but it is easy and cheap . So give it some thought . Best wishes .
Im just worried that there are other things going on but it feels like im blaming her for everything..... i really want to help and understand. Softly Softly approach needed.
I think it is very sweet of you and very loving to care so much. Enough to write and ask what you can do for her. One should be so lucky to have someone like that. Today, I feel very agitated and sore for some reason (possibly due to covid booster shot). If I was in a relationship, I think I might be irritable with anyone around me. I feel like isolating a lot when I am feeling this way. it can make me seem selfish, and maybe it is, but really I am doing others a favor by isolating from them. LOL
Perhaps she needs more B12. I am currently injecting per mood and symptoms. some days I feel great and can skip a day and some times like today, I feel quite lethargic and irritable, so I injected to see if that will help. The nice thing is, it can't hurt.
I have to say, I agree with Charks comment about it changing your personality. It really does. Before I knew what was wrong with me, I was very very emotion and moody. and easily irritated and impatient. I am so much better. I see a total change in my temperament too and my desire to even live. Things were so bad, I could not see a reason to go on except my animals needed me. So here I am thank goodness. Because now I know it wasn't my true feelings. Something was very wrong with me and it was PA.
Without enough B12, she may feel like isolating herself, or be very irritable, especially if someone keeps asking her if she is alright etc. I know I get very irritable if the lights are too bright. or if there is a lot of background noise. I get overwhelmed. I can't listen to the sports on the news anymore it is too noisy. Commercials drive me crazy. useless sound. Maybe things in her environment are causing unforeseen irritation. If she is not getting enough sleep that is a HUGE issue. One of my biggest irritation buttons. But pain causes me to isolate and be very impatient.
I wonder if you can do subtle things like use warm light bulbs to tone down any fluorescents you might have in the home. I know I can not stand fluorescent lights. My irritation can go way up and then I realize it is the lights. Just knowing what causes others to get irritated may help you to understand her better and even she probably doesn't even know what is triggering her. But something apparently is.
You sound very patient and very caring. In one way I wish I had that, and in another way, I am glad I don't have anyone, so I can feel free to feel like $#!^ in peace and not feel guilty that I don't feel well. Pretending to feel ok when you don't, can be draining. I also don't want to unintentionally hurt anyone's feelings. I have some friends that could not understand this. I needed my time for me. The mental tiredness is overwhelming. I could not keep up with them and their lifestyle and I was feeling very pressured. We are much better now because I finally had to get firm about it. And I self inject now. That has made all the difference. But boundaries are an important thing to people that don't feel well. It sucks to be us for sure. But it sucks to be you too. If she loves you like you love her, that will prevail. It is a lot of sacrifice for the one who lives with a person with any life-long condition. I wish you both the best. Try not to hover too much, but just notice if she is so tired she can't even get up to get a glass of water. That is when I wish I had someone. Selfish I know. Ask yourself how you would feel if it was you. As I was writing this LONG response, the news was on in the background and I was feeling quite irritated. I had to mute it. Instantly felt better. My brain was getting very tight. I hope this helps to understand a day in the life of someone with PA.
There is a movie about Sally Pachelok that showed a woman that was very mentally exhausted, b12 changed her entire personality. To the point of trying suicide. It can mentally really challenge you
I assume that your partner wasn't always like this. Before B12 I was a nightmare to live with. Short tempered and aggressive. I had steadily been getting worse for years. B12D is so insidious. It creeps up on you and turns you into a different person. When my partner tried to discuss it with me I would get very defensive. Then I found out that I had PA and with treatment my temperament went back to normal. The fact that your partners hasn't must be because she needs more B12.
But how you convince her is a different matter. Until you've actually been there and recovered from it it's hard to realise how much the lack of B12 messes with you. I would be willing to message her to discuss what happened to me if it will help. My partner was so happy with my transformation he cried.
I really can't help you with the correct dosage. Everyone with PA is different. What works for one person is often wrong for someone else. I think you have will have to experiment a bit to find the correct level your partner needs.
Oral B12 works for me. I have PA but I'm can still absorb B12 via passive absorption. But I have to take a very large amount. A lot of people on this site use oral B12 to 'top up' between injections. You may find that this 'topping up' is enough to help. I buy extra strong B12 liquid and dilute it in water to give my body longer to absorb it (passive absorption is very slow). Maybe try that first as it is very easy to buy.
This was me a few years ago. Add paranoia to the list as well. Not sure how my partner managed to get through it to be honest....
Wedgewood will be able to send you the links to self-source B12.
What also helped me was adding in folic acid. Best would be to get a blood test for "serum folate". If low, that could be part of the answer. B12 requires good folate levels to do its job. In my case, I need to take 5mg folic acid, but I also inject daily. Without the folic acid, my mental issues come raging back within 1 to 2 weeks.
Sometimes it's difficult to tell whether the problem is folic acid or B12, but if there are also nerve-related symptoms including neuro-pychological, I would personally start with every-other-day (EOD) injections and add in some folic acid.
Fo figure out frequency and dose: keep a daily symptoms log/diary where you mark the severity of your symptoms. Once you've established a baseline, you can then start to increase/decrease doses and frequency and see how you respond. Might be best to start this now, so you have an objective baseline before any changes are made. I used an excel sheet and made multiple columns for all the symptoms I had, using the lists below, then added a row for each day, and gave each symptoms a score between 1-10.
I think the other elephant in the room is, how do you convince your partner to consider more frequent injections? I'm not sure I have an answer to that, but it might be helpful to share some of the more obvious articles, such as the last one I put above, from the Dutch B12D group on neuropsychiatric symptoms of B12D.
You could also watch the 2 Sally Pacholok movies on youtube together: one is a documentary and the other is a dramatization of her life : youtube.com/user/elpllc
I guess also important to realize that the longer one goes undertreated, the more one is at risk of getting worsening neurological symptoms. It's much easier to treat in the early stages. Once you wait too long, it'll take even longer for the nerves to heal, and eventually some issues like numbness can become permanent.
Do you or her notice changes in her mood in relation to the injections - like are things better after injections? If that is the case, definitely see whether more frequent injections help.
Sometimes when the injection frequency isn't right, things can feel worse immediately after injections, then improve and then get worse again before the next injection is due, I'd say that would also indicate that more frequent injections are needed.
Even if you are noticing no change in her mood in relation to the injections that may simply mean she is not getting enough for them to work for her, so is still worth trying more frequent injections to see whether it helps, but it may be that there are other issues.
Perhaps instead of talking about mental health, have a conversion about B12 and how she feels it improves her life. If she is defensive against your accusations that she is not well, maybe see if a friend can discuss it with her?
Have you kept a diary of her mood and does that clearly show that the outburst are related to the timing of her B12 shots - ie she is okay just after and then gets worse as she gets further from the injections.
It may be easier to tackle mood as an issue just after an injection when she is calmer and more rational.
You could also try very high dose oral B12 - it isn't effective for everyone but it does work for some - minimum dose would be 1000mcg a day and again, its best to start trial just after a B12 shot.
We haven't kept a diary but i would say its fall mid 6 week cycle... and not related to periods.
She docent take contraception so that can be eliminated.
Its so difficult to discuss as I have tried to accommodate for the last 2 years (where its noticeably got worse) and she is convinced Im the problem and that I dont support her enough. We have adjusted our lives to ensure she get rest, eats regularly and we increased the dosage to the 6 weeks. Maybe we need to increase but like i said, i "mention" it and im met with , "you're putting this on me and its all you" i am in between a rock and a hard place.
As others have said, pre- diagnosis my mood swings and overall mental health were horrendous at times. In hindsight, for me it was a combination of hormonal contraceptives (I had my third implant removed after 6 months because I felt suicidal) and low b12. Since stopping usung hormonal contraceptives and getting to a sensible b12 injection cycle I'm much more aware of what my hormonal swings feel like compared to my b12 swings, and can at least explain to my partner which it is. I haven't seen any research on this, so can't point to anything other than my own experience.
I thought wedgewood was sending PMs with ordering info so she hasn't posted it in a while so you have to go way back, i will try to find it for you in a little while.
I've posted some links below. You can research it all now, but I might wait to order until and unless you partner agrees. I agree with everything Cherylclaire said. It needs to be her decision, this isn't something you can or should force on someone. If she would join, she would find many people like her here. I'm quite sure there's some part of her that realizes something is wrong, but she probably can't quite put her finger on it, and doesn't know what to do about it. She might be scared, angry, or in denial. Some people trust their GPs to the ends of the earth, and don't want to go against them. The best approach is one that lets her find her way to the same conclusion as you, in a gentle and kind way. Which I'm sure you're doing, but it's difficult to trust even your loved ones when your brain is starving for B12.
And it's quite possible other things are going on, but it's good to eliminate B12 as it's very easy and rather cheap. Other possibilities include thyroid problems - hyper or hypo - both can cause mental issues and overlap with some B12 symptoms. You can get a full thyroid panel privately if the GP doesn't agree. thyroiduk.org/help-and-supp... Test TSH, FT4, FT3, and thyroid antibodies. GPs don't always run FT3 and sometimes their labs even refuse it, so going privately can be easier. Autoimmune issues tend to go together, so if you have one, like PA, you're more likely to have others, like autoimmune thyroid.
Scroll down to wedgewood's replies on these posts:
Many of us use the Panpharma brand, which contains 1000 mcg of hydroxo B12 in 1 mL of fluid. There is also Hevert, which has the same 1000mcg but it's 2 mL of fluid, so can be difficult for subcuteneous injections. many people also use the Pascoe brand, it has 1 mL fluid but a slightly higher dose of 1500 mcg B12. Sometimes Versandapo runs outs of Panpharma so you can sign up to receive notices when it's back in stock (you have to create an account first). The first post above lists other pharmacies that deliver to the UK.
You will also need to decide if you want to do intramuscular (IM) or subcutaneous (SC or subcut) and then buy the appropriate needles and syringes medisave.co.uk/ . A 2mL syringe is easiest, for either method. It gives you room to draw up the ampoule contents. For needles: For IM you can use anywhere from 21 to 25 G (gauge) x 1". 25G is the finest. For SC you can use anywhere from 27G to 31G x 0.5". I use 27G because the 30G and 31G are hard to draw up, they are so thin. There are many videos online where you can learn to self-inject (SI).
If I'm honest, my lack of understanding has probably made things worse. I have read lots on here and also the web. I definitely feel i could have understood more and be more patient.
Little steps, hopefully this is the path to her feeling great.
Honestly, I think it's extremely difficult for someone who hasn't gone through this to understand. Sometimes I wonder if *I* truly understand how bad I really was. I don't think I could have tolerated myself, lol. Not so much the physical symptoms, but the mental distress. Actually that's a word you don't often seen thrown about, but I do think it's like being in distress. EllaNore described the irritations well. I too was hyper sensitive to my environment, and it made me quite mentally distressed. It's like being overstimulated by everything, and not being able to deal with it. And when my partner would talk to me, especially when he used the word "YOU", in any context at all, I would feel attacked. Everything was distressing. I don't know if that helps. But it's not you, it's this stupid deficiency or whatever other vitamin, hormonal, other issues might be going on. I think you're doing the best thing you can do right now - educating yourself, even if it's difficult to imagine what it's like living in a B12 deficiency body/mind. Best wishes!
Over stimulated!! Indeed and sometimes I don't want to even talk to anyone. It's hard enough to keep my thoughts focused, let alone have to hold a conversation.
By the way, how do you tag someone in a comment? I've tried and can't fiure it out.
Yes I still sometimes avoid people! I find talking to people very tiring. Even emails & forums can be too tiring.
To tag someone type @ and then start typing their name (no space in between), and wait for a little dropdown box to appear, keep typing until the name shows up, then click on the username to activate it.
It is hard for partners - you can be supportive but decisions must be her's regarding B12 treatment. Otherwise you could appear controlling. Especially when she could be struggling with mood-swings or inability to trust, which can be B12 symptoms.
If she is unable right now to work out what is her illness and what isn't, perhaps ask her if she would like to talk to us here ? We've been her, after all. There is a way back but it is her journey and all you can do is follow, catch her if she falls. Hard to take a back step but that might be just where she needs you.
Sleepybunny has given you good informative links, and I like jade_s 's suggestion of watching Sally Pacholok's film together, learning as a team.
You must feel as if you are treading on eggshells right now; this will get better. Allow her to recognise herself in this new info/ film, if she can- don't try to convince her yourself.
Sleepybunny is absolutely right about folate, ferritin and vitamin D. These all need testing and monitoring too.
After B12 deficiency was found to be my problem, my folate and ferritin were found to be low, although still in range. They were both treated anyway, since my gums were bleeding and hair falling out by then.
Later, osteoporosis of the spine and osteopenia of the neck were also discovered - so yes, now on prescribed vitamin D.
These are important additional problems that can take a while to resolve and stabilise at more healthy levels, in my case years.
I wish both of you good luck. None of this is easy and it can feel lonely.
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