what are your signs and symptoms of being ready for your next b12 jab??
due b12 : what are your signs and... - Pernicious Anaemi...
due b12
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Darcey14
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General fatigue. Slight symptoms of Fibro.
I'm now trying to get the next b12 Injection in before symptoms return.
Signs have been when need it :
Stuck sitting /zoned out.
Vision down
Balance off
Can't stand on the spot. Like a drop fatigue
Ache all over
Short term memory shot
Dopey
Irritable
Headaches/ head pain
Tinnitus worse
Scalp nerves worse.
A joy to be with!!
Some of which resolved partly by food on time keeping blood sugars stable.
I've always been foid reliant not functioning well if go too long without food.
Do that might be just me????
It took me very long time to get clear signs as have never been symptom free .
Balance off a sure sign.
Waiting and hopeful
I start to fade without food too Nackapan. But with my injections, I notice that's getting better. I was told that is hypoglycemic symptoms. Also, I just need to nibble when that happens even if I feel like I need to gobble something down. I get shaky without food. Colonoscopy prep is very hard for me. I get very weak. Irritable and confused going that long without food. Sometimes just a couple crackers helps me now.
Yes . Also long chain carbohydrates help.No idea why but I have porridge with fruit and ground nuts since poorly every day.
Still need food 3- hours later!
This isn't new to me bugt worse since b12 deficient.
Even a fasting blood test not easy.!
I've never been able to eat late.
As most eat out quite late.
So I ended up eating a meal at 5pm before going .
I've not been overweight so perhaps I used to have a quick metabolic rate.
Not so sure now though.
Mh husband I'd diabetic so eating at regular times suits us both.
Preparing for s colonoscopy must've Bern very hard for you.
I ended up going without food for 36 hours because the colonoscopy kept getting delayed while I was prepped and ready to go at the hospital. But they had some kind of an emergency colonoscopy and I just kept getting pushed back. I ended up getting pretty sick that day. That was before I even knew I had PA.
Yes it seems that I need to have carbohydrates too. And I too eat steel cut oats for breakfast but without some kind of protein I get hungry within a few hours. I'm still trying to figure all this out so I don't know what's causing what still. That does seem to be getting better for me though with the B12.
I have a very slow digestive tract. I've always dealt with stomach bloat and pain since 4 abdominal surgeries. Airways felt hunger pains. Burning stomach. I thought it was just going to be that way. I thought it was because I had adhesions and I just chalked it up to that. I still think it's because of that too but I do think the B12 and not absorbing nutrition had a lot to do with it because things really do seem to be changing with b12. But after 37 years of illness and only 4 months of change, I'm not really sure what's happening right now. I'm just taking everybody's word for it that B12 is going to make me feel better soon. I do think it's starting but it has been a long road. And I still am not clear on everything. But my appetite has diminished and I've lost 18 lbs.
I lost a stone with initial illness and intense b12 therapy. I still eax eating bug wax nauseous alot of the time.
Nearky 4 years on put the weight back on and more!
I was too skinny though when lost a stone at that stage.
It can take yearss to make improvements but they can happen.
Well I could stand to lose a few pounds. I just want to start feeling better. I'm glad your getting some of your weight back. This thing sure seems to take a very long time. I tried to go without any kind of pain reliever like acetaminophen I'm and made the mistake of cleaning out my car. It really needed it it's been 3 months and now I know why I haven't done it. But at least it's clean. I'm completely exhausted and sore all over. Oh well at least I was able to clean my car so I'm making Headway
Pernicious anemia can turn to atrophic gastritis. I have autoimmune atrophic gastritis. They will be able to tell from an endoscopy. Rhône with OA should get one. The dr will tell you if you have it. That makes b12 worse and appetite less and can cause SIBO also.
Thank you Lisarags1. Yes, i hadcan endoscopy. I find out the results on the 28th. But I asked my cancer doctor yesterday abd she said, So far I chemical gastritis whatever that is. And a hiatal hernia. I was told no atrophic gastritis. That's great I guess.
Wish it answered why my tummy hurts so much and bloats when I do too much bending. But it is calming down. And I'm taking good pro and pre biotics with enzymes. To eat any bad bacteria - I hope.
Oh good. If you have regular gastritis can happen also. Also look in to digestive enzymes that helps also 😊 peppermint tea is good and I swear by ibgard and fdgard. My gastro told me to use those depending if I had e upper or lower stomach issues.
If you want to heal properly you need to SI daily. If you wait a month between you are just giving a starving man a meal every month.
We are all different. We aren't all men, for example !Self injection daily may well have worked for you - but on what evidence would you be able to state that this is the only successful route for everyone here ?
This is why I don’t post much I here. People don’t like dealing with reality, as covid has shown us.
You are lucky that you tolerate daily injections. I get side effects from B12, so I try not to over-do it. If you are on this forum often, you know how different we all are.
You cannot overdose on b12 at all as you will urinate it out. And my daily injections for the first 18 months caused so much healing. It was frankly horrendous. My family saw what I was going through and told me that they believed I should stop dailies due to what I was experiencing. But I was firm in my belief it gave me best chance to heal. My belief it’s healing not side effects. Dailies is the sas approach and I get why most don’t do it or struggle. It was the hardest thing I have experienced both mentally and physically.
I am trying not to be flippant, maybe we just have different beliefs.
You believe you cannot tolerate dailies, I believe healing after decades of b12d wakes up the body in such a way it is that it is an experience very few can deal with.
I have to inject daily. I tried weekly by my doctor and that just wasn't working fast enough and then I tried every other day and the day that I didn't inject I felt like I was going backwards. I am injecting every day right now. And I'm thinking that once I get to the point where my symptoms are back to normal, whatever that is, that maybe I can go to Every Other Day. But right now I inject every day. And I feel that the B12 is pushing all the toxins out of my body and that it's darkest before the dawn and that I will be turning the corner soon and all the disease will be out of my body. And then maybe I can do maintenance so that it doesn't creep back in. Right now I'm experiencing skin lesions. I don't really want to call them acne, but I feel they are toxic blemishes from all the toxins trying to get out of my body. The toxins come out of your body through urination excrement and through your skin. Your skin will show a lot of signs of disease. It's been 4 months for me and I am just turning a corner and just starting to feel like this is helping me.
I have to say the first three months were really really hard and scary. I was in excruciating pain and things were very dim. It's almost like everything got Amplified and now it's starting to calm down and find it's even momentum. I hope anyway. I went undiagnosed for at least 25 years and probably more like 37.
Actually, Phil, I believe you and what you say makes sense. That said, I have to be able to tolerate the side effects. I didn't sleep for 48 hours after my last injection. Literally. I need time to recover in between injections. I think I am a pretty tough cookie, too. I endure a lot; it has taken a lot of courage and determination to get to where I am now. Maybe over time I will "react" less, but the "healing" can be brutally tough to ride out and I am in bad shape to begin with.
Were you taking folate and other co-factors or just B12? I am really very open to your thoughts/opinions...
We like to hear experiences and what has worked for you personally.
When very ill and at the start we need to be clear that the guidelines initially are correct .
Including every other day until no more improvements.
We all struggle as even these are often not done.
Then working out a personal frequency different again going by symptoms.
I personally found every other day very difficult to tolerate .
Had terrible headaches and migraines as well as other horrific symptoms.
It was like I was being in a torture chamber or being poisoned.
I started at a very low point.
I think thst wax the reason as well as vertigo.
But nothing else was found to treat .
So I continued and symptoms gradually started to lesson.
Covid another matter.
Dictating regimes is different from sharing what your thoughts are and what works for you.
Our time frame is similar.
I hope you are doing okay.
A dry pull in my mouth.
Sometimes nerve pain. Or more precisely the symptoms that it is about to raise its ugly little head, as it has rarely come back in any full manner.
Fatigue, mouth ulcers, splits at the corners of the mouth, balance way off and proprioception of where I am and where my feet are completely off kilter - hence banging my hip or shoulder or anything else! What fun!!
Fatigue, anxiety, sensations in my feet that trigger fight or flight response, feeling of being trapped, avoidance of situations that stress me out and slight paranoia that escalates to full phobia without frequent enough dosing.
I inject weekly so I getting a pretty consistent dose so a return of symptoms for me are mild but the thing I can’t seem to understand is why some weeks I don’t feel like I need more than a weekly injection and others I do. It’s almost like I need a booster dose every so often but haven’t been able to recognize when? Another thought is that I’m using a multi dose vial and the potency of injections are probably not equal. I open a new vial every 28 days. Good luck!
I wonder if you need to inject more when you and your brain/body are under more physical or mental stress? I suspect that is true for me.
Indeed so. Weekly injections here normally, but when on a cruise, twice weekly.
Weekly determined by feeling like the Energiser bunny running flat on monthly, running down on fortnightly, but running fine on weekly (except on cruises, as above, where there is a lot more activity),
I would expect that most people would get that ‘running down’ feeling to tell them when the next jab is due, but where that falls between daily and three-monthly(!) depends on the individual.
I get the feeling I need a booster b12 occasionally. I usually use my IM one at the surgery as this one as timings not Easy with getting appointments !
Thanks for the reply, Nackapan. What is the frequency of your booster dose? I feel like once I feel like I need a booster, I’m already behind the 8 ball and it takes me a while to catch up—so really I am taking a couple of additional doses to get back on track. Would be nice to not have to do that. I am injecting weekly now. Appreciate any suggestions you may have? Thanks!
I inject 5-7 days . Usually counting injection day as day one.
I usually have an IM b12 injection at the surgery every 4-6 weeks.
I do sc at home .
I have s prescription for 2 weekly.
Lije it on my medical notes.
If you've only recently upped your frequency it takes time.
I had loading thrn an unwanted break of 5 weeks.
Then arguing at the surgery.
Then back on every other day for ? 3 months
Then weekly then s trial of b12 tablets inbetween .
Once on 2 weekly fought to stay on that .
Had just ovef s year of 2 weekly IM .
Then bought my own as covid hit.
Surgeries opting out of b12 injections.
Have been on 5-7 days 11/2 years now.
Still not functioning as well as I hoped.
However am improving.
Slowly slowly.
Heat has polaxed me .
More irritated and frustrated .
Mind is bright .
Body unwilling.
Despite what medics say.
Hope your nes regime pays off.
I start talking absolute wibblish! Forgetting words and saying the wrong words. My family usually notice before I do.
Oh yes the doofus, thingyamebob and nobody as yet, has understood my noise and hand movement for a hand- held blender - jjjjjzzzzz!!
Yes!!!! Talking Jibberish. Can take me forever to write an email or comment on here. Forgetting words!! Using wrong words.
The tip of my nose starts to feel cold. Feeling fatigued when I shouldn't. I start having a problem taking a full breath.
Wow. I'm astounded at the replies. Thanks. Even though I'm more than a year into this now, with 1ml 10 weekly I'm still getting to grips with when I'm due. I think this time has been worse due to having covid the week after my last jab, which I think depletes b12 faster when you're poorly. I can relate to almost every reply.
Covid seemed to really knock me off track and I needed more regular injections, it took a few months to get back to my “normal”.
I recently tried lengthening the interval between my injections too quickly and I felt like I have the flu. Tired, angry, hopeless, sense of impending doom, hot muscles, sour stomach.
I'm So sorry colbalt1312. I get that too. Anger, depression. Hopelessness. I just spend most of my time alone. It is easier for me.
EllaNore, I'm really sorry you go through that! It's a tough row to hoe, so to speak. I can relate to the need to be alone. When you feel that bad and you're tired, life is overwhelming. If I'm feeling run down and my family tries to cheer me up it can actually send me into a spin. Sending hugs!! Hang in there
Sending hugs right back to you!! It is nice that your family tries though. 🦋
It took a year of injecting every 3-4 weeks for me to connect waking up with severe shortness of breath to needing an injection. I suspected it many months ago, but the pattern was inconsistent. This last time I injected as soon as I felt the extreme shortness of breath and broke the cycle. It used to go on for many nights in a row. Now I am hoping to time my injections before the "suffocation" feeling hits. (about every 3 weeks) I have been trying to find the reason for this tortuous and unrelenting symptom since 2017. I had all the heart, lung tests and standard blood work. After being shuffled from one specialist to another, I was diagnosed as suffering from "stress and anxiety." I did not give up. The suffocation while lying down was torture. A doctor on a different forum read of my symptoms and told me to get my B12, MMA and homocycsteine checked. He was right. It took 4 years for my diagnosis and I got it by pursuing the issue on-line. I am about to send a letter to all the doctors who dismissed my symptoms as anxiety and tell them to start testing B12 levels. Geez!
Yrs I've written many letters too.Trying to get it on blood forms.
On staff agendas ect.
It shouldn't take a kind online doctor... passingt hrough to help you.
I too was dismissed and not listened to.
Age menopause
Stress
Anxiety
They give us
STRESS
It's a wonder we are not all 'off the rails.
I started to believe I 2ax having a nervous breakdown
But knew I wasn't if that makes sense
I thought the fewer b12 I needed the better ???
Indoctrination
I did a whole yesr of prescribed 2 weekly beforee changing to weekly !!
Geez ....exactly how I feel.
Interestingly, three out of the four doctors who neglected to test for B12 have quit since COVID began. Among all my docs/specialists, 5 of them quit/retired during COVID. Four of them were women. So it feels like kind of a waste of time to try and educate them now and I don't know where to find them...I get really angry sometimes when I think about how long I suffered, and how marginalized I was, but then I realize the anger is only affected me. I do try and educate those in my life about B12. I am nearly 68 and many of my friends/family would probably do better with B12 supplementation....they just don't know it.
I am with you 100%. Why can't they simply run a B12 test like they do a diabetes test or any other kind of blood test? what is the big deal about running this test? Why is something so simple so difficult to get? It almost feels like a conspiracy. This is considered an old person's illness. Everything I read says the symptoms come around the age of 60. Is that why they they don't put a lot of effort into us? Are we too old? My symptoms started when I was in my twenties. They could have saved me a lifetime of suffering with a simple B12 test.
If you wait until you feel like you need another injection, you have waited too long and taken a step backwards impeding your healing. Like other medications, you need to find a schedule that keeps you feeling as well as possible and stick to it, even when you feel like you don't need it. Think of it like pain pills your doctor gives you after surgery and they are scheduled for every 6 hours. If you take them according to schedule, you most likely will not experience significant pain, but if you wait until your pain returns and then take them, the pills have to overcome the pain that has returned in addition to keeping you out of pain for the next 6 hours. If you wait until your B12 symptoms to return before you take your next injection, you have hindered your healing process. The point is to try to avoid your symptoms returning if possible. I have a very aggressive injection schedule and I stick to it. I'll even add an extra or two if I am having a bad spell, which is becoming less and less frequent as the years go by.
Thats good to hear you are managing to get the injection in before symptoms return.
Are you on daily too?
I only ask as I'm loathed to up them further personally as there nowhere to go then in the future.
Nackapan - I know you are a long time and active, helpful member here. My only thought is why are you concerned that there would be nowhere to go in the future regarding increasing injections? Are you concerned that you may get worse in the future? The future is now, and if you treat aggressively now, you have less of a chance of getting worse in the future. I just don't understand why someone would want to cut back injections as soon as they feel a bit better, only to feel poorly and start again.
Not that I suggest this for everyone, I have been on 2x daily for about eight months. I have not had any of my worst symptoms in several months. The peaks and valleys have disappeared. I have several other chronic conditions to deal with that also contribute to not feeling my best, but as long as I can keep my GI bleeds under control and keep my iron levels topped off, I manage pretty well.
extreme tiredness, tinnitus,pins and needles,cramp, concentration loss. I have my jabs 7 weekly
I have to do them weekly for life. Otherwise I constantly drop low. But when I need to do daily loading doses I know by my vision blurriness tingling in both sides of feet and extreme lethargy.
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