Hi all,
I’ve recently increased my hydroxocobalamin injections to EOD following neurological symptoms and I’ve noticed a huge wave of nervousness and anxiety that I’ve never experienced before - it’s a scary feeling.
Does anyone know if this is a common side effect?
It's usually a symptom of low b12.
I had this amongst other things.
What frequency were you on before?
And how long for?
B12 injections did stir up my nervous system .
I did fund it very difficult on loading doses .
Worse before improvements.
A feeling of being overwhelmed. .
Re- booting.
I wouldn’t imagine my B12 is low at present, I’ve had 14 injections in last month - prior to that I was once a week.
I’m completely overwhelmed by everything at the moment....
My nervousness is through the roof, I’ve had the burning and tingling sensations in legs & feet since I had the loading doses (didn’t have these symptoms before) and I’ve no idea if I should see it as a good sign or not because it’s impossible to find any credible information as to sensations you’d get with nerve healing symptoms....
Meanwhile, as a nation we are all living in fear of the virus and I certainly struggled with the COVID jabs and awful headaches....
I’m genuinely done with all of this 😩
Sorry for the rant....
BTW I had loading injections in October 2020
Perhaps step back to 2 a week if you are struggling??Or worse then when on weekly.
It's so difficult.
We all seen to react differently.
I did find symptoms got exaggerated and felt worse at first.
Were you like this on your initial loading doses?
It is actually early days if neurological symptoms were present.
Have you been able to see a neurologist ?
Or doctor?
I know very difficult at present.
Good you've managed to have your covid vaccinations.
Yes I agree difficult tines without being ill as well.
I hope things improve
Thanks Nackapan... it’s been a journey!
I went to the GP originally because of random muscle twitching, sore tongue, blurry vision and tinnitus - B12 result came back at 99 ng/l - started loading doses (8 months ago).
Loading doses made me very anxious (never experienced before), tingling in calves and burning soles of feet (never experienced before) and intermittent hand cramps (never experienced before).
Following loading doses I started taking 400mcg of Folic Acid and a B Complex.
I’ve experimented with frequency of injections and I’ve probably had a total of 35 injections (9 IM from GP and 26 subcutaneous SI) since November.
I will reduce the frequency again but keep on the B Complex and Folic Acid but I’m really uneasy about the chronic tingling and burning soles of feet in the worry it’s further damage, rather than repair symptoms - I’m hoping it’s just a long repair job....
Been to Neurologist who conducted a thorough physical and said it’s nothing sinister (7 months ago), a haematologist confirmed PA from numerous blood tests (6 months ago) and a Gastroenterologist gave all clear for stomach cancer and coeliac following a gastroscopy with biopsy (3 months ago)... so I have covered all those bases BUT I’ve no idea whether I should just ease off everything and hope I improve, reduce frequency or persist....
I’ve been so patient with the past 8 months but it’s starting to take its toll now 🤯
Yes it does take its toll.It's the toughest thing I've ever gone through as relentless
My initial level was 106 ng/l so similar. Also the rest of bloods all in range
You've had more investigations from different specialists.
Which is good.
My neurologist used the same words
"Nothing sinister"
After 2 brain mri scans and 1 brain cy scan
I try and treat 'new symptoms as healing.
While there's change there's Hope
It's certainly a rollercoaster
At the beginning I had almost a continuous headache of different degrees .
Also migraines of different sorts.
Neurologists couldn't agree on which sort.
Vedtibular
Continuous chronic tension
There's over 26 sorts I wad told.
All you can do is keep your b12 levels up.
I'm 21/2 ysrs in now.
Progress has been very slow but gas been happening.
A recent set back from severe reaction to my first covid vaccination made me realise this.
I dud every other day until I dudnt seem to be getting anywhere further.
2 a week then weekly.
Then 2 weekly.
Trued 3 weekly thinking or rather being told I shoukd by my doctor.
Then back to 2 weekly for a year .
Now every 6th day which has been for over a yesr .
Fatigue and weakness a big problem.
The main thing is yiu have been tested and ruling other things out.
Do get bloods done.
Although my HB has stayed in range abd my folate for sone reason my ferritin levels dropped and cholesterol went very high,??
So as you see I've had the same dilemmas with frequency
I set it then logged symptoms.
Still no patterns .
I at times feel I'd benefit from a lower continuous dose.
Rather than the see saw effect .
I haven't got answers for you but it seems you are doing all the 'right things for recovery.
I was told it woukd take time!!
I asked a neurologist if I was stuck like this.
He replied no but
No quick fix.!!
So set your regime to hopefully reduce that vile anxiety .
I'm sure that's no good for healing feeling that 'wired
I still get waves of it .
Hopefully things will calm or resolve very soon.
Some are fortunate to heal quicker than others.
Some do get their 'old self ' back.
Some take years to get the best they can to get on.
T C
Thanks Nackapan - I’ll keep soldiering on. Hope you feel better each day 👍🏻
And you
Have you had a blood test for folate? Too much folic acid can increase your requirement for B12.
pubmed.ncbi.nlm.nih.gov/268...
Your B complex probably contains about 200 - 400mcg of folic acid, so you might not need the additional 400 mcg.
Your folic acid supplement should be based on your folate blood test result. I found that my folate level was well above the lower limit of normal without any supplement.
Muscle twitches and cramps...you may need to supplement with magnesium or calcium.
Hi, it maybe reversing out syndrome where you get to revisit all your symptoms- it’s v intense as on the way to deficiency it’s v subtle. I would also take a look at the B6 dose in your B complex - too much can cause nerve damage according to internet .
Thanks ClareP5 - my B complex contains 2mg of B6 (143% RDA) Not sure if that’s problematic but I think it’s not too excessive
Folic acid is a conundrum to me. Between the B complex and folic acid supplement I’m taking 600mcg but my folate has always been normal (even before diagnosis). What is confusing to me is the comments to make sure you take folic acid with injections but I’m not sure if I need to do that if Folate is normal without supplements?!
I took folate initially as it was sub optimal and occasionally use a patch of B12 with folate.
Hi, I have just been through almost the exact same thing, approx 1 week after my 2nd Astrazenica vax I started with daily headaches which extended to my neck and shoulders, plus many of my original PA symptoms returned.
Sooo I surmised that the Vax somehow had rinsed all my B12 . I started to inject daily sometimes twice to try and alleviate the symptoms BUT that is when the crippling anxiety started, I mean, truly awful. I was a mess, anxious all day with a smattering of panic attacks in between. I KNEW this wasn't a mental health problem, it came on out of the blue and was like nothing I had ever experienced before.
None of this cured the headache neck and shoulder pain, it was agony.
I think the issue for me that made it a whole lot worse is that I became very anxious about being anxious for no reason.
I then thought it was possibly that my folate levels had dropped due to the increased hydroxo, sooo I upped the intake of that too, from 400mcg a day to 1000/2000 mcg a day, but that made it worse.
Then I thought it was possibly to do with my thyroid levels and that I had somehow gone from hypo to hyper. so basically stopped my thyroxine in an effort to correct my levels.
That didn't work either. By this time i had been suffering this wierd pronounced anxiety for approx 6 weeks., it exhausted me. and terrified me, I thought I was going mad.
The upshot was I stopped everything, no b12, no folate, no thyroxine. I then had my bloods done and they all came back normal. ( except b12 which is always high) .
After 2 weeks of taking nothing other than my Omega 3 capsules, ( anxiety still no better) , I started to re-introduce my b12 injections but only 500mcg at a time, more or less overnight my anxiety symptoms disappeared. So did the headaches and neck / shoulder pain.
So this was about a week ago, I have been taking daily 500mcg of b12 daily, the anxiety has not returned . I have also slowly re-introduced my thyroxine but only 25mcg a day as opposed to 100mcg a day, and I am taking 400mcg of methylfolate once every two days.
I feel like it almost like a reset ??
During that period I did download a guided anxiety recovery app called DARE, it was soo helpful during my worst moments, the guy is Irish and has such a soothing voice, during the worst of it I relied on his voice to bring me down from the hellish symptoms of the anxiety.
I hope that helps, and I wish you well. xxx
Thanks Miravet - I do feel that there’s been a reaction to the AZ vaccines. Bizarrely, I’ve not had B12 injection for 2 days and the burning/tingling is not as pronounced. My plan is to try and hold out with only cofactors for a week and see how I get on (fingers crossed).....
BTWYiu shouldnt nt need extra folic acid.
I took 400mcg abd went above range .
I only have tge 200mcg in bconpmex or multi vit days.
Om back ' in range '
Gp dudnt seem concerned either way ??
( it was 9 at the start.( never low )
Supermarket supplements have 100% rda . I uses thises now .
Thanks Nackapan. So, you’ve stopped all folic acid (apart from B Complex)?
I've read alot have struggled with thyroxine in particular after their covud vaccination .I think yju describing g it as re setting is spot on.
I'm only just getting g back to ore vaccine after 13 weeks!!
Mot on thyroid drugs but revisited symptoms from 2 yrsrs ago .
And had vile scary symptoms fro actual vaccine ore vaccine us not well but a dam sight better tgsn theadt period.
So gkad yiu have had both abd finally back on track.
Were you okay after first covid vsv.c.?
I'm happy to hear you are taking the methyl folate form of folate and not folic acid, and have improved. I understand methyl folate is the far superior way to supplement and that folic acid actually causes problems.
Hi miravet - I’m hoping the anxiety has stayed away for you, I just wanted to message to see how you are getting on?
Hi, thank you for asking, well after a ton of trying this and trying that, I finally narrowed it down to my thyroid. For some strange reason I can no longer handle my usual dose of 100mcg of thyroxine , I don't know if it is because of the vaccine or just a coincidence that it all kicked off at the same time. When I re-introduced my thyroxine slowly from 25mcg up to 100mcg , the anxiety reared it's ugly head again when I reached 100mcg a day.. it was terrifying . Soo now I am only taking 50mcg thyroxine a day and splitting the dose. Gawd knows to be honest, but since I have done that I have had a sustained period of calm.
Hi Miravet, how are you getting on with your smaller every day doses and the anxiety? I am only 1 month in to self treating after GP said my 300+ B12 was ok despite awful neurological symptoms. It's a real balancing act trying to work out what is causing the reaction so you can adjust things.
Hi MePo, thank you so much for your concern, I have just replied to another user with an update, not sure if this is the correct thing to do but I'll put a copy of it on this message '
'Hi, thank you for asking, well after a ton of trying this and trying that, I finally narrowed it down to my thyroid. For some strange reason I can no longer handle my usual dose of 100mcg of thyroxine , I don't know if it is because of the vaccine or just a coincidence that it all kicked off at the same time. When I re-introduced my thyroxine slowly from 25mcg up to 100mcg , the anxiety reared it's ugly head again when I reached 100mcg a day.. it was terrifying . Soo now I am only taking 50mcg thyroxine a day and splitting the dose. Gawd knows to be honest, but since I have done that I have had a sustained period of calm. '
I’ve had this, I self inject, for me it’s a problem with folate as it’s not uncommon to not be able to convert it yourself so methyl folate has to be used which you can buy cheaply , google to find out more info, hope this helps.
I find I get the burning sensation in one foot, my left, and that is the indicator for an injection. This can be at between 5 and 14 day intervals and at night. The sensation has gone by morning however reduced enough after about thirty minutes to allow sleep.
The neurologist suggested trying amitriptyline as pain relief but I reacted to it with a pink blush up arms.
I have found a hot bath helps, even just foot bath. But my analgesic of choice is a couple of 30mg codeine.
It still feels as if I have always got socks on but no burning or tingling in feet.
There is no way I can walk without shoes or slippers on as it feels like I am walking on a pebble beach.
I tend to worry about anything, usually something I cannot sort out. Eventually I will face whatever it is head on and find it was nothing to be bothered about in the first place.
One thing about these troubles though is you know you are alive. You can really appreciate the good, or even just a little better days.
It might not be a bed of roses but it is better than nothing.
Are you keeping your oral potassium levels up? Magnesium glycinate can help with anxiety issues.
I have never injected as frequently as you, but for me the restlessness, nervousness comes on when my B12 levels are not high enough. Hydroxo actually eliminates these symptoms for me. I did have some slight breakthrough symptoms recently that I think are due to using hydroxo vials a little longer than 28 days because drug was on back order and not obtainable for a time. I injected two days in a row and then weekly with a fresh vial and I’m doing better but not perfect. I also had uncontrolled migraines with Moderna vaccine and my neuro said it was common with migraine patients who had the moderna. My migraines are now under control with my Botox treatment. I hope you feel better soon. PA is such a frustrating journey!
Thanks mcg-woo - I think that this article is accurate for me: b12d.org/blog/view?id=42
I just don’t know if I can keep going with these “reversing out” symptoms because it’s been 8 months of backward steps...
I’m getting more symptoms now than the basic ones that took me to the GP (each of which have bizarrely improved)...
I did have symptoms when I received initial B12 injections after being low, but it was more like headaches and feeling sick enough that I had to go to bed after receiving them. I also remember having intense body aches, much like the flu. For me, tingling in the hands and heart palpitations went away with treatment pretty fast. I will say that recovery is slow. Don’t give up hope. I continued to improve over a 2-year period but I wonder had I received loading doses, would that have been different? Likely so, I think. Are you sure it’s the hydroxo? Could something else be going on? I would take the advice of others and reduce frequency of injections and see if that helps. From my experience, I have never gone backwards with increased frequency of injections—only the opposite—reduced frequency caused reoccurrence of symptoms. The most frequent I have injected on a regular basis is weekly, so that could also explain different experience? Best of luck to you. I hope you get what you need to get you on the path to recovery.
Not unusual for old symptoms to worsen or new symptoms to show up when beginning regular injections.
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