Diagnosed with b12 deficiency not per... - Pernicious Anaemi...

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Diagnosed with b12 deficiency not pernicious anemia so far.

Janeames profile image
26 Replies

Wondering if anyone suspects covid vaccine and b12 deficiency. I have tinnitus b12. speech impairment headaches last about 2 minutes also transulent zig zags over my eyes again lasts 2 minutes. Taking b12 injections monthly. Is this enough given my symptoms. Would like to hear if others have my symptoms.

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Janeames
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Pickle500 profile image
Pickle500

Did you get loading doses?

There is a link between covid and B12 but not based on receiving the vaccine. My symptoms flared to the extreme just before I had the first booster jab.

Symptoms can take quite a while to abate.

Janeames profile image
Janeames in reply to Pickle500

I assume by loading doses u mean more regular, like daily in the beginning of the series of b12 injections. That would be a no. I jabe 1,000 MG every months. I am seeing doctor in a couple of weeks time. I am goo N g to suggest biweekly injections. I may be wrong here but it seems to me that those who have daily or weekly doses have also lower doses than I have. Can u conform this. I seem to get really tired before a week before my shot. How long do u think my symptoms will stop given the monthly shots. They r very worrying to me. Regards.

Pickle500 profile image
Pickle500 in reply to Janeames

Yes at the beginning a Doctor will usually prescribe loading injections either daily or every other day or weekly to get levels high and then maintain them over time (months).

So no, I don't think you're getting enough to treat your symptoms and really need to get a consistent amount in your system. Most people in the UK self inject every other day to get rid of symptoms because Doctors under prescribe the loading doses at just 6 over two weeks. That's the best starting point but is rarely enough for people with severe symptoms to recover properly.

Janeames profile image
Janeames in reply to Pickle500

What amount are the loading doses the doctor prescribes and what are the amount of doses one gets delivered at home. I get 1,000 mg monthly.

I do suspect I wont be able to get the delivery at home option - but I can try.

Pickle500 profile image
Pickle500 in reply to Janeames

It depends on where you are. In the UK it's most often 6 injections over 2 weeks with Hydroxocobalamin DEPOT B12.

In the US they often use Cyanocobalamin daily I believe.

Whether you're US or UK, I think Germany is the only place you can get injections delivered from.

Janeames profile image
Janeames in reply to Pickle500

Thaanks for the info. What are the dosage size of the shots given by UK health system and what are the dosage of one bought from Germany?

Pickle500 profile image
Pickle500 in reply to Janeames

Dosages are mostly the same. 1mg in 1ml liquid. Just a difference in type since Hydroxocobalamin in a DEPOT injection which means it will stay in your system for longer so its given every other day.

Whereas Cyancobalamin isn't retained as long, but still just as effective, but as a consquence is daily injections.

CappucinoRoadie profile image
CappucinoRoadie

Hello. Tinnutus has been long observed, never even heard of PA untill recently. Also, fractal 'migraine' although its less frequent, sounds little like your zigzag concerns, verbal ataxia, and muscle/dexterity difficulties are progresssively pronounced. (dropping things, ankle gives out - frustration finding words) this seems very neurological in its origin. Are b12 injections helping improve symptoms for you James? Anyone else?

Janeames profile image
Janeames in reply to CappucinoRoadie

I have only been suffering these symptoms from the time of my lasy booster I'm October last year. I have the symptoms once a month ironically before my monthly shot. My red blood cell count is ok. The tinnitus came on after my third shot but went away. Came back after my fourth shot and stayed. I don't have pins and needles dropping things. I have the speech confusion and the migraine type zigzag that last about 2 minutes. I have had two monthly shots and my last episode of symptoms three days before. I guess this is early days. I am also now Taking a b12 by mouth methycobalim to help me through to the next shot without symptoms.

ACritical profile image
ACritical in reply to CappucinoRoadie

My tinnitus I have had since my early thirties. B12 deficiency wasn’t mentioned in those days. However all through my life doctors have given me so called ‘ vitamin’ injections every so often . Then when I was very ill in my fifties and ended up in hospital my neurologist told me I had B12 deficiency, most likely had it all my life and because of under treatment some of my B12 symptoms might not get better. Tinnitus was one of them. After month of every other day injections I levelled out to 1 a month . That worked for quite awhile then al of the sudden many symptoms came back again. I am now on every 5-7 days, but might go back to loading doses again , every other day for awhile see if that improves things. I have had all my vaccinations and boosters and sometimes I feel they have affected my overall health. I am 72 and have resigned to the fact that my age is probably the main factor here. I keep a healthy diet, with the odd chocolate, my weight and BMI is as it should be. I do take supplements for vitamin D,K, and vitamin B9 all in oil drops / form as pills make me ill, magnesium I take via foot baths. One odd thing….one of my triggers for migraines ( which I now hardly have as they were all my life) is lemon / ascorbic acid in any of these forms it is added to so many food products as well as medication. People should be aware of this, it’s crippling. The odd times I have eaten something that later on I found out had this added, it affects my whole day. Very tired, nauseous, off balance/ dizzy. All migraine symptoms however the actual headache is very much reduced in pain and duration. My hubby and I have become very good in detecting my trigger , it’s part of life and avoid them like the plague. We like to enjoy old age together for as long as possible. My husband has started to take the odd B12 injections every so often. He feels the difference. We both had corona right at the beginning early 2020, it was not diagnosed as such then, an MRI showed me to have a pneumonia. With antibiotics we managed to travel to the Canary Islands and there we recuperated on sun lounges in the sunshine also upped regular Hydroxocobalamin injections. Then on the Spanish news we heard about Corona, we made it back home just before all plane journeys were halted. 4 weeks of sunshine had done the trick for us. I remember, writing early 2020, an email to Prof. Tim Spector( corona app/Zoe) about our experiences , how vitamins especially vitamin D and B’s, should perhaps be considered to be very helpful in the treatment of this new virus.

Janeames profile image
Janeames in reply to ACritical

Wow, sorry you have had a lifetimes of this but thanks for sharing. Will keep an in mind what you say regarding lemon/absorbic acid. I suspect my B12 deficiency started with covid vaccine and therefore effected the symptoms I am having including tinnitus. If this is a red herring, I do believe the connection between covid vaccine and tinnitus. I am not an anti-vaxer at all, I do believe in vaccinations. Are you in the UK? do they prescribe you loading injections, or do you pay for these yourself? How do you know you are getting clean vaccination product and not something with impurities - kinda worried about using non healthcare products that you inject.

etreas profile image
etreas

Hi Janeames,

Neuroscientist here, who researches both dementia (Alzheimer’s disease) and more recently, neurological effects of Covid-19. I'm not aware of any link between Covid vaccines and B12 deficiency but am curious about why you suspect a connection? Did your symptoms appear after vaccination? What is your most recent B12 level (pre-injections) and did your B12 levels change after vaccination?

B12 deficiency - or a host of other issues - could certainly underlie the neurological symptoms you report, including verbal fluency impairments and migraine-type headaches along with the "zig zag" visual auras that often precede migraines. While there’s mounting research linking Covid-19 infection to numerous neurological symptoms, I'm not aware of evidence connecting vaccines to either B12 deficiency or its associated neurological effects. I'd absolutely follow up with your doctor if you have persistent neurological symptoms, especially if they are unresponsive to B12 injections, as there could be something else going on.

Wishing you healing.

Janeames profile image
Janeames in reply to etreas

Hi etreas,

I did not know my B12 levels any time before vaccinations but as far as I know had no B12 deficiency. I live in California almost on greenbeld and our covid level infections have been consistantly extremely low, so I don't think I have neurological problems because of the virus as you are studying. My tinnitus was non existent and I have prized myself on having good hearing. However after my booster of Pfizer I started with tinnitus after about a coupleof days then it dissappated completely disappeared after a few weeks. But then I had my first episode of pressure on the left side of my head above my ear (I don't get headaches and this wasn't like a headache) my speech and my understanding of written language was impaired speech not being able to put a sentence together and written language was jumbled. This episode lasted 2 minutes. I didn't go to the doctors at the time as I put it down to a one-off simple migraine and all other factors of stroke weren't there. However I did have another similar episode about 4 weeks later and decided to go to the doctors that day. Again blood pressure ok, and no obvious signs of stroke but I did have a sleugh of blood tests and cat scan and then an MRI. All clear rbc ok, folate ok, mri ok only slightly low B12 and slightly high homocystiene levels. Then I was prescribed B12 monthly shots 1000 mg. I have had about 3 months of shots but two days before the end of the last one, I experienced another episode with the clear zigzaging in my eyesight, pressure to the head, not being able to put a sentence together.

The tinnitus did come back after another booster and so far after 2-3 months continues. I went backto the doctor specifically for this to check for an ear infection - all clear there. I am suspecting that the vaccines are the cause of my B12 deficiency although I may be off the wall here. But I do think that the vaccine caused the tinnitus - I have also heard others since my suspicions have arisen.

I am going to see my doctors here in the US in a couple of weeks. Clearly the monthly B12 supplementation is not enough. I am in a system where one has to advocate for one's own benefit and would be grateful if you could answer some questions for me.

I believe a lot of people getting loading shots, ie at the beginning of treatment have daily, weekly shots, are these 1,000 mg like my monthly shots? Or are they typical less mgs.

If the typical loading shots are less mg of B12, (but more frequent) does it matter that I am getting 1,000 mg monthly - doesn't B12 stay in your body a while.

I am thinking of using a sublinqual supplment. I see there is different types of B12, I have methylcobalamin is this a good source of B12.

If my doctor insists on only monthly B12 shots, is it worth taking sublinqual B12 supplements - does this really get absorbed and as effective as the shots.

If you need any other information regarding the connection of the tinnitus and covid injections please let me know. This tinnitus is in one ear the same one as where I get the pressure, I am having an EEG. Do you want to know the result of that?

Technoid profile image
Technoid in reply to Janeames

Hi Janeames,

You would be getting 1,000 mcg (micrograms) per shot, not 1,000mg (milligrams) which would be a much larger dose (1,000mg is 1,000 times more than a normal B12 injection which is 1000mcg (1mg)).

The type of B12 only matters if one improves symptoms better for you and has less (or no) side effects. Many have side effects with methylcobalamin but not all. Some prefer hydroxocobalamin to cyanocobalamin, and vice versa. They are all functionally equivalent so use what works best for you.

In theory sublingual in very high doses should be absorbed by PA patients but many find it does not work or doesnt work adequately for them. But there's no harm in trialing them to see. You cannot overdose on B12.

Nackapan profile image
Nackapan in reply to etreas

Strangely when I had my first covid vaccination i had a terrible time.It caused 'old' b12 deficiency symptoms.

Head stuck to thr pillow and unable to move or speak.

Headaches/ migraine.

Severe balance issues.

It took me 5 weeks to get back on track.

Very scary.

I had a blood test to check platelets rct .

When I got covid ssme thing .

Head stuck to the pillow but less severe and transient.

Difficult tk explain but definitely a neurological event.

The menopause definitely triggered b12 deficiency.

However the covid vac and actual virus did cause similar symptoms to how ill I wax initially with B12 deficiency

Janeames profile image
Janeames in reply to Nackapan

Interesting to see your experience with B12 deficiency with covid vaccine and virus, I wonder why both, etreas - would this be immune response to the virus and vaccine. What other responses could both vaccine and virus deplete stores of B12 in the body?

Nackapan profile image
Nackapan in reply to Janeames

No idea.My experience was gave same symptoms

I don't think my b12 depleted as have regular injections .

Just My bodies response wax the same to virus ,vac and very low b12!

Janeames profile image
Janeames in reply to etreas

Etres, Also can B12 deficiency cause tinnitus?

Nackapan profile image
Nackapan in reply to Janeames

Yes

Sleepybunny profile image
Sleepybunny

Hi Janeames,

A few links that might be of interest.

Sometimes it's helpful to know which country someone is in as patterns of treatment for B12 deficiency vary between countries and type of b12 used in treatment can also vary.

I'm in UK.

Two B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

There are PAS support groups in UK and also one in Chicago area.

Testing for PA

pernicious-anaemia-society....

B12 Info.com website (formerly B12 Deficiency Info

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute Netherlands

Has useful lists of causes and symptoms.

b12-institute.nl/en/home-2/

I'm not medically trained.

Hi, I cannot share too much due to the nature of my work, however I have seen a lot of Neurological issues arise from the covid vaccine (Pfizer). I provide Expert Witness reports for medical negligence. I thought I'd seen the last of vaccine harms when working on the Pandemrix reports (swine flu vaccine)... 'the pandemic that never was' in the words of my Epidemiologist! looks like history is repeating itself! I wish you well

Just looking through some reporting since the Pfizer Vaccine... Here are some 'side effects' which appear to be the most common amongst those following the booster...

headaches/migraines/balance problems (mostly neurological)

Tinnitus/ peripheral neuropathy

Hypertension

brain fog

Auto immune conditions including POTS

Vision problems

Shingles

My heart is breaking... but I have a job to do.

Janeames profile image
Janeames in reply to

I did suspect this. I understand u can say little but does the vaccine deplete b12 and cause these neurological problems? And more importantly can we hope to reverse the symptoms by b12 supplementation.

in reply to Janeames

I am not medically qualified to comment upon the vaccine depleting B12, I think there is a lot of research to be done. (I would be interested too) As time goes on our Expert consultants who provide reports will share their findings in their court reports . I am only party to the outcomes and side effects and court reports once written.

Janeames profile image
Janeames in reply to

Thanks for the information.

I do have this study, but it is American, so would not be cited in our UK Court reports as yet

paper from American Journal of Gastroenterology:

"Acute exacerbation of crohn's disease after COVID-19 pfizer vaccine"

pesquisa.bvsalud.org/global...

Quote:

"A lab. work up was significant for elevated ESR, iron deficient anemia, B12 deficiency, hypophosphatemia & hypomagnesemia."

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