Neuropsychiatric

[PlatypusProfit8077]

Quick question - for those of you who suffered neuropsychiatric symptoms, did you find they returned quickly if you went too long between injections? Or were physical symptoms more quick/common to return?

So far I’ve had neuro and physical (gut, muscular mainly) symptoms return when I’ve crashed, plus the panic of feeling those things again when you don’t expect it.

But I’m in the middle of trialling injections every 3-4 days instead of EOD.

I’ve noticed that if I get to the 4th day, I’ve started feeling very blah mentally. Not so much the awful anxiety yet but the irritability and the apathy, unexplained sadness.

There are physical symptoms as well, slight numbing of my fingertips and tingling in feet (plus pins and needles happen really quickly if I sit funny), fatigue and a bit of brain fog.

I’m thinking I’ll go back to the EOD injections.

[traveltime]

I'm just recovering from a _big_ crash, but I'd had 4 weeks EOD then had to be away for a while and was consequently without injections for 4 weeks. I suppose it was also sort of an experiment, in that I'm new to B12 therapy, but I didn't expect the severity. Week 1, ok, was getting used to the new me. Week2, starting to feel a bit tired in the afternoon, and sad. Week3, more tired, less focus, needed to be careful going down stairs, night waking, tingly legs/body were back. Week 4: grim, panic, neurological and other symptoms back with a vengeance. I've now had 2 EOD and feel I've turned a corner. My doctor and I both know that I won't make 4 weeks for a good while yet.

In October, at least one of the nurses was quite adamant that I'd soon be on 3-monthly injections. Now I know 3-monthly is nowhere near my current horizon. In a few weeks time I'd be willing to try say twice a week, but not yet. I'm already feeling a bit blah and my last jab was Friday, next one tomorrow.

[PlatypusProfit8077 in reply to traveltime]

Thanks traveltime. I’ve been on EOD since June 2024 and I’ve had a few crashes from various things (procedure in hospital, exercise etc) and I’m familiar with those symptoms, unfortunately.

It’s been different since seeing if I can space out the injections. I guess I didn’t expect the neuropsychiatric stuff to reappear so quickly 🫠

It’s such a silly reason for trying to space them out too - I wanted to prove to my GP that I was willing to listen to her (she’s been back flipping between being helpful/supportive and stating all those stupid comments about toxicity and flooding my system with too much B12) and work with her, while also proving that I do need those frequent injections. Dumb right?

[traveltime in reply to PlatypusProfit8077]

Yeah, my doctor is currently 'compliant' but I've half an eye to the tomorrow when he might shift. I'm just imagining things that may never happen, but I'm keeping an eye out for a backup plan. Last year I think sublingual B12 made a difference, then I stopped that for 6 months to try and get unbiased tests, and I was definitely more ill after that 6 months. This time round though the interim sublingual B12 seemed to make no difference at all, so I've learned that my body now needs those shots.

[DiSews]

Yes - I find the anxiety is only too ready to reappear if I get a bit low, as well as the clumsiness, irritability and brain fog. I am surprised that I get the occasional unexplained 'sad' moment as well, as I hadn't linked that before. I think you have proved your point! Well done.

[PlatypusProfit8077 in reply to DiSews]

Thanks DiSews (do you actually sew? I’m in the middle of sewing my youngest’s outfit for a year 6 grad dinner).

ah my clumsiness has been off the charts the last few weeks and I hadn’t put it together. Even my kids mentioned it, “mum you’re really clumsy this week”. I expect the anxiety but the other stuff I wasn’t prepared for!

I think my main question really had to do with the timing - my doctors won’t believe that, after “flooding” my system with B12, I could possibly have symptoms reappearing within 4 days. It’s so frustrating not to be believed.

[DiSews in reply to PlatypusProfit8077]

Yes, I do sew - a LOT! Not so much dressmaking now, mainly quilting. Hand sewing has kept me from losing my mind over the last few years while I was undiagnosed, and then dealing with the recovery process. My profile pic is part of the huge quilt I sewed all by hand to stay engaged and achieve something/ anything in '21 and '22. How long I can sew for is now a measure of how well I am. I still SI every day, I tried 30 hour intervals last week.... big mistake! After 2 days I had a cracked lip, was moody and irritable, tired ++ and sore. Back to daily. I think there is still a lot of repairing going on.... but as I said to my long-suffering hubby, if this is what I have to do for life then I will, because without it just isn't living. Everyone seems to have a different ability to utilise what is injected - maybe this is what I'm stuck with, for now anyway.

My symptoms journal is never far away... it helps me keep it all in perspective, and stops me doubting myself when noone wants to believe me. I'm looking for a really pretty one for the new year 🤭

Good luck with the graduation outfit!

[PlatypusProfit8077 in reply to DiSews]

Sewing is such a wonderful hobby. I’m not a quilter at all but I have set aside some linen and Liberty to hopefully do one this summer. Maybe.

I much prefer clothing and have done swimmers for my girls since they were little.

We are all such individuals anyway, I’m not sure why I (or the doctors) get surprised by different bodies needing different doses!

[MoKayD in reply to DiSews]

Your quilt is beautiful.

[DiSews in reply to MoKayD]

Thankyou!

[PlatypusProfit8077 in reply to DiSews]

I just zoomed in on that quilt! Are they all hand sewn hexagons??? Far out! It’s beautiful!

[DiSews in reply to PlatypusProfit8077]

Yep! Thousands of 1" hexagons, all leftovers from more than 35 years of quilting. Now I need to get my brain firing up and my arms strong enough to hand quilt it! "Learn something new", they say! LOL 🤪

( I've always machine quilted other projects)

[Oneash in reply to DiSews]

Lovely. Now do one based on haptocorrin rings with cobalt blue dots in the middle! 😁

[DiSews in reply to Oneash]

Good idea! I’ll start work on drafting a pattern 😉

[Sleepybunny]

Hi,

All my symptoms return quite quickly after an injection.

I need far more B12 than NHS will give me.

I think the mental health symptoms I have experienced are linked to low levels of neurotransmitters such as dopamine...I have physical symptoms that suggest low dopamine levels.

B12 and folate are co factors in the production of neurotransmitters such as dopamine and seretonin.

Search online for "B12 deficiency neurotransmitters" if interested.

[PlatypusProfit8077 in reply to Sleepybunny]

Thanks sleepybunny, you are a treasure of wisdom!

[besotted2]

I definitely notice this! It took me awhile to clue in and notice the pattern. I get a shot once a month but a few days before my injection (i see a naturopath here in Canada…$25 each time…well worth it! I don’t even bother with my family physician - he freaks out whenever i get bloodwork done and sees my high b12 levels 🥴) my anxiety and ocd really kicks in, and my agitated brain goes back to things that worry me, my tinnitus gets crazier, tingly hands, etc. But i do feel some comfort knowing this anxiety is related to my deficiency, and that it will lessen once i get my shot. Nervous system still a mess though in general, and find it impossible to sleep.

[PlatypusProfit8077 in reply to besotted2]

it’s crazy isn’t it? Sorry to hear you’ve had to go the private/alternative route too. I self-manage my injections and I’m sure my GP is despairing of ever approving it lol

[besotted2 in reply to PlatypusProfit8077]

Yes it really is…has been quite a journey. I realize now looking back that this b12 deficiency has likely been plaguing me for years and the reason i’ve been getting progressively more anxious as time has gone on. I was at a point of having shortness of breath- thought i was drinking too much coffee so cut that out, etc etc. But I pushed myself an extra week last month, so 5 weeks between shots…and boy did i pay for that - i was just a nervous wreck. And then it seems to take a few days for my body to soak up the b12 and calm down. I haven’t been diagnosed with pernicious anemia, but made the mistake of getting a shot before doing bloodwork, so of course had a nervous call from dr saying itcwas too high and to STOP! So hence the private route. Over covid i ordered online and self injected sometimes, but could only get cyanocobalamin which doesn’t seem to agree with me as much as hydroxocobalamin. Anyway- also going to look into Sjogrens since we think my mother has that and i do have diverticulitis, so another reason i may not be absorbing well. Anyway sorry for rambling! But many times over the last 10 years i had the craziest symptoms and thought ivwas losing it. At least now have part of the answer!😁

[JesusMercy60]

Hello good morning,

yes for sure I do. I will have to stay on everyday I really don't plan on changing anytime soon, I've have I believe to be crashes before and I did not know I could have them in the beginning. I'm just ending 6 months of injections and my mental and physical symptoms will take over. so I'm still healing I feel the healing during the day and still have nerves waking up in my back so I get a lot of rest still during the day as well.

[GracePV]

If I wait too long for my injection, I sometimes get bad mood and pins and needles and sciatica pain.

[PrinceofDenmark]

Are you taking methyl foliate (vit B9) potassium, iron and B2 daily. My specialist recommended this along with weekly B12 and I feel good. We are all different but from a biochemistry perspective you need all these other things for B 12 to be used by your body.

[MorningMist in reply to PrinceofDenmark]

Is this approved by your gp or is your specialist private?

[PrinceofDenmark in reply to MorningMist]

By a specialist, all available without prescription. All consistent with the famous pernicious anaemia book. The methyl foliate is particularly important as it helps convert the B12 you inject into a form your body can use. E.g methyl B12

[MorningMist in reply to PrinceofDenmark]

And is your specialist private or nhs?

[PrinceofDenmark in reply to MorningMist]

Private I can DM if you like

[MorningMist in reply to PrinceofDenmark]

Yes please. Thanks.

[oilbeetle in reply to MorningMist]

apohealth.co.uk/collections... use chrome as it has a translate function for the website

[MorningMist in reply to oilbeetle]

Thanks