What is the first symptom you notice when your B12 is low......?

[BeachArt]

Hi, I don't mean the first symptom you noticed. What I am asking is, for those who SI regularly, what is the first symptom you notice when you have maybe pushed yourself to do too much, or are unwell with an infection, or drink too much alcohol, or are stressed, etc? Mine is a return of neuropathy, which is no longer there as a general rule. But it returns when I push myself too much. And it is very specific neuropathy. It always starts in my right leg, usually with a numb knee (very random I know, lol), or a numb foot. Bodies are weird

[shaws]

I had no symptoms but I had B12 injections as my blood test was done earlier and confirmed pernicious anaemia and the fact that my Mother also had pernicous anaemia.

My Mother developed stomach cancer when her B12 injections were stopped due to her GP stating her 'bloods were now fine' and she didn't need any more B12 injections.

[Nackapan in reply to shaws]

No symptoms ??That was good to get a diagnosis then

[shaws in reply to Nackapan]

Probably I was checked as my mother had Pernicious Anaemia. It was very unfortunate that, her GP, told her that she no longer needed any further B12 injections. The decision by the GP, I am convinced, caused mother to develop stomach cancer which caused her demise.

[Happysmile]

i find my recall is bad, my speech slurs and I get the same pain in my right leg as I did when I started injections.

[HeartyGilly]

I get an itch under my right shoulder blade.

[BeachArt in reply to HeartyGilly]

That is as random as my numb knee lol

[HeartyGilly in reply to BeachArt]

it is! It is completely weird, but a very accurate sign that I need B12.

[LauraJane2 in reply to HeartyGilly]

I had this symptom before I was diagnosed as B12 deficient (and it still comes back occasionally).

I had a mole in the place it was itchy so the dr removed it as suspect. There was nothing wrong with the mole and the itching continued until I got treated with B12!

[HeartyGilly in reply to LauraJane2]

That is fascinating! I am glad that I am not alone with the one itchy area. I am wondering if there is a nerve ending there?

[LauraJane2 in reply to HeartyGilly]

I have no idea but it is reassuring when you find someone with the same symptom!

[MrsTuft]

oh my goodness we have the same first symptom! Mine is right knee numbness, and if I ignore it the leg becomes hard to use.

[BeachArt in reply to MrsTuft]

Really??!! How weird is that? But also it is nice to know that I'm not the only one. It is so random, isn't it?

[BeachArt in reply to BeachArt]

If I ignore it, or have to carry on, my whole leg starts to feel odd: pins and needles, etc. Does it then take you a couple of weeks to fully recover from that?

[Orchard33]

I think mine is feeling as if I can't cope with even the smallest thing. So, in effect, feeling overwhelmed and fatigued. It's an awful feeling.

[markgrewar in reply to Orchard33]

I just begin to get exhausted and overwhelmed yes

[Orchard33 in reply to markgrewar]

Feeling overwhelmed is when I know I've overdone it and I have to stop. If I get it wrong it takes at least two days of rest and no commitments to recover.

[BeachArt in reply to Orchard33]

And how long to recover if you are unable to rest? Mine is about 2 weeks, and some extra jabs.

[Orchard33 in reply to BeachArt]

Two weeks not resting makes sense. I now have aging in the mix (70s) so have to stop. No resilience or reserves and my adrenals are very depleted from powering through when younger.

[BeachArt in reply to Orchard33]

I am in my 50s, and still working, hence the not resting. Don't get me wrong, I never allow myself to get anywhere near the level I was at in the beginning. I rarely push myself to the point of a return of symptoms, but the nature of this illness is that you can suffer setbacks at times. When it does happen for me it frustrates the hell out of me, and I kick myself if it was my own stupid fault lol.

[Orchard33 in reply to BeachArt]

I do so sympathise with you working with this illness. And it's so hard to get it right, the calibration has to be so fine sometimes. Please don't give yourself a hard time when you get it a bit wrong. Every time we do we learn something. What a roller-coaster learning curve!

[Carri3 in reply to Orchard33]

Dito! Orchard I have been trying to keep up with everyone for years and under medicated (Thyroxine) B12 etc. so am now paying the price (also 70s)

[Wwwdot in reply to Orchard33]

snap! This is my symptom and so I get irritable as engaging in discussion becomes very difficult.

[andepande]

feeling over whelmed , difficulty finding words , poor concentration and a very short fuse 🫣

[BeachArt in reply to andepande]

I know the difficulty of trying to find the right words. I had that prior to injections. As for the short fuse, I am a very chilled out person but, again, prior to injections, I found myself getting irritable (which is very unusual for me).

[Wwwdot in reply to BeachArt]

BeachArt

Spot on. I have always been an extremely patient person … until now. I was rarely irritable but now it’s commonplace and I don’t like it. It’s just not who I am!

[LauraJane2 in reply to andepande]

Yup, same here. It’s horrible isn’t it.

[jointpain]

My tell, that I've forgotten my b12 injection is my jaw fires off and I take a lump out of the inside of my cheek! I also have cervical spinal stenosis and notice my back gets more painful too.

[BeachArt in reply to jointpain]

That doesn't sound pleasant. Once your jaw fires up how long does it take to stop totally? If I have a flare up of symptoms it usually takes me about 2 weeks, and extra jabs, to be symptom free again. Less time if I can fully rest, but that is rarely possible.

[jointpain in reply to BeachArt]

If I inject as soon as I can the jaw soon gets its manners back, but the chunk or two, will take a week or so to repair 😱 after the ulcers though.

[Wwwdot in reply to jointpain]

Hi jointpain I can sympathise with the cheek bites as I often get these when tired and a tight jaw ache as I tend to clench my teeth more when tired too.

I recover fairly quickly after an injection the following morning but I don’t inject at night now as it disrupts my sleep too much.

Thanks for the insight.

[Wwwdot in reply to BeachArt]

BeachArt

A couple of weeks to recover sounds very tough going. I hope you are able to shorten this recovery time as it’s horrible not being on top form for so long.

Thanks for sharing.

[jointpain in reply to Wwwdot]

The recovery time I referred to was for the "self inflicted" injuries to the inside of my cheeks. A couple of hours after injection I'm fine.

[Wwwdot in reply to jointpain]

thanks for clarifying. Good to know!

[BeachArt in reply to Wwwdot]

Wwwdot.....thank you. It's been 6½ years now (and 6 years of SI'ing). I don't have crashes like I did in the beginning, and I have come a very long way. When I say up to 2 weeks to fully recover from a flare up, that is to be symptom free again. On the whole I am symptom free. I SI every 3 days. I work in a physical job and go to the gym 2 or 3 times a week. So I am one of the lucky ones. But, like everyone, I do still push my luck on occasions and then I get the familiar right numb knee, and block of ice toes on right foot. The reality is is that its not very often that happens nowadays, as I have learnt over the years. But when it does I am annoyed with myself for doing whatever I have done lol.

[Wwwdot in reply to BeachArt]

BeachArt that is so encouraging as I am only 6 months in and frequently overdo it as not yet learnt to identify my limits which are changing too. Your reply gives me hope! Thank you.

[Hidden]

I'll be terribly indelicate and say when my incontinence starts up again

[Wwwdot in reply to Hidden]

that’s being honest not indelicate Saoirse because unless we are brave enough to share we suffer in silence.

I don’t suffer incontinence but I have so many trips to the loo it’s ridiculous sometimes every 20 mins. I hadn’t associated it with the B12 deficiency until you posted as so much is happening to my mind and body at the moment But I wasn’t like that before all this kicked off.

Thank you for sharing 🤗

Thank you for your candour.

[Hidden in reply to Wwwdot]

Thank you wwwdot! I didn't realise it was connected to B12 until I saw a post on here, I bought a box of incontinence pants, and noticed that once I'd started self-injecting I didn't need to wear one every day.

(I still wear one when I go out anywhere just in case!)

[Wwwdot in reply to Hidden]

it’s amazing what we don’t realise is associated with PA. thank you again. 🤗

[Strauss in reply to Hidden]

Exactly that. I become incontinent by about 5 weeks before I have my injection, confused and awful memory problems. It takes about four days before there is a perceptible improvement.

[MoKayD]

I will start having trouble breathing deeply and the tip of my nose will feel cold.

[Wwwdot in reply to MoKayD]

MoKayD - cold tip of the nose is one of my signs that I am in exhaustion mode. Sometimes I bury my head in a hot water bottle as it’s so painfully cold! Then I have a red nose like Rudolf!! 😂

[MoKayD in reply to Wwwdot]

I used to cup my hand over my nose to try to warm it. I was seriously thinking about knitting a nose cozy.

[Wwwdot in reply to MoKayD]

ha ha! Make it red Rudolf!

[Motheroflittle]

I get louder ear ringing , vertigo & drop things. I can tell when I start breaking tea cups its time for a shot.

[Wwwdot in reply to Motheroflittle]

Motheroflittle. Yes louder ringing in the ears when I am on the downward slope and it seems louder when I am with people perhaps because I am struggling mentally to keep up.

I don’t have vertigo thankfully but knocking things over and dropping things is familiar as is walking into things - bruises galore sometimes!

Thank you for sharing.

[WIZARD6787]

Chunks out of cheek. Theeth acke. What I call my scurvy. My legs itch but no rash. Goes away with moisturizer.

[metamorphica]

I start dropping things easily, like my grip become weak and i become clumsy

[Dilly_blue in reply to metamorphica]

Hi Metamorphica, can I ask if the hand grip weakness is worse in the morning, and wears off during the day? My first sign that I need B12 is also hand grip weakness - it is much worse when I wake up (I can’t close my fist properly), but eases off over an hour or so. It happens around 5-6 days after a B12 injection, and if I don’t inject, the weakness in my hands will just continue getting worse, and will last longer into the day, and will start occurring later in the day (after my hands haven’t been active).

I’d be really interested to hear if anyone else has this?

I also get tingling in my feet and lower calves - this tends to start up again after around 5-6 days after an injection, is worse at night, and gradually gets worse if I don’t inject.

[metamorphica in reply to Dilly_blue]

it's all day for me,when i know i'm low, but when i wake up is always bad for hand weakness, no matter what. My hand is shaky and grip power can be suddenly gone, so i always have to be careful taking a drink as soon as i wake up.

[lambuth_eagle]

Neuropathy for me too, but mine is typically bilateral and is a tingling sensation that starts in my feet.

[WIZARD6787]

I found it very interesting that people had specific 'tells' that they needed more B12. The way I look at it is not that I need more B12 rather I did not have enough to begin with. Kinda like the if you are thirsty you are already dehydrated thing.

I found it interesting that there were many different signs that lead to people feeling they needed more B12 and that some 'signs' were shared with some people.

I thought about it and wonder if a person's 'tells' might be that it is unhealed neurological injury not yet healed caused by the chemical biological effect of B12 deficiency. That there are common threads of tells but each persons injuries are different.

Current:

.50 mg Sc Hydroxocabalamin three times a day

5 mg SL liquid methylcobalamin/adenasolcobalamin 66%/33% three times a day at the same time as injections and extra as needed.

Pyridoxal-5-Phosphate .25 mg liquid in water twice a day.

“Simple Solution” 1 scoop in juice a day in lieu of B-complex.

[BeachArt in reply to WIZARD6787]

People do need more B12, because they didn't have enough in the first place. Many things can cause a person's B12 to dip, even with a very good protocol in place. Such as myself. I am, on the whole, symptom free, but on occasion I can have a dip. Whether that be because I did too much, have had a virus, etc.As for it being unhealed neurological damage....as B12 injections are for life, I don't see myself as healed. The neuropathy is there, it is just kept at bay by the injections. I know that it will never heal in the traditional sense of the word.

You are right, it is very interesting that people have different 'tells'.

[WIZARD6787 in reply to BeachArt]

Thank you for that. It clears somethings up for me. I do not expect my body to be able to process B12 or B6 from food. I have indications that the damage to my neurological system can heal with enough B12 and B6 frequently enough.

I look at overdoing it the same way I looked at overdoing it when training for running road races. An injury was an error from doing to much to soon. Over training which resulted in virus/flu like symptoms was an error of doing too much over time. Recovery from injury I never experienced as an adult. Over training I did experience and that was a simple matter of time to recover.

The exception was running an actual race. Recovery from that experience took three days. I do not run anymore, although as I heal who knows I might. I swim, kayak and hike. I understand that process well enough so I have no dips/recovery.

My measure will be when I get back to NH and can swim in the lake, hike trails and kayak in the same place I did three years ago. My goal is to administer enough B12 and B6 to avoid 'dips' I am open do doing more with the same energy than I could three years ago.

Thank you again.

[BeachArt in reply to WIZARD6787]

I can only speak for myself, although 6½ years in I have come across many others with the same experience as myself. Like I said previously, on the whole I am symptom free. I can go months without any symptoms. I have followed the protocol of EOD injections, and now every 3 days. But, such is the nature of the illness, a lot of us cannot avoid the occasional dip. I have worked hard to get to where I am today: physical job, gym 2 or 3 times a week, a lot of walking etc. But I am aware that I still have limitations. I discovered, the hard way, that full on cardio (running, spinning, etc) depletes my B12 too much. But weight training is fine. Alcohol is another factor. For a long time I could not tolerate any alcohol. It just brought symptoms back. Now though I can tolerate some on high days and holidays, but I have to inject a bit more then. Also, one cannot avoid getting a bug or a virus, and that can impact too.

So whilst I can go months without symptoms I know that the nerve damage is not healed, and I doubt it ever will be. Like I said, I'm 6½ years in and I can still have a dip, so it is not healed in the traditional sense. Yes, I am mostly symptom free now, but I also still have to inject every 3 days to make sure it stays that way. And on the odd occasion where my body may be pushed too far (for whatever reason) the symptoms do return but they are not even in the same league as they were initially. They are a lot milder, but that is probably because I'm injecting so frequently.

Good luck to you. It's a learning curve, a journey, and a real rollercoaster of a ride.

[Clare184]

Mine are mouth ulcers and dropping things all the time!

[Leils]

Really interesting thread.

One of the main things is that I will not be able to find something, or drop a glass, like others said. Also sometimes get back ache or a feeling of complete overwhelm. Then I remember I need my jab.