Symptoms and reactions after B12 inje... - Pernicious Anaemi...

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Symptoms and reactions after B12 injections

6 Replies

Hi all, Im new to this group and its been quite encouraging to read all the info and support on here. Im a fairly healthy 35 yr old male in Canada. Very active growing up.

I have been feeling off for quite some time, balance has been bad lately, recently been getting tingling in the feet, a lot in my left foot and then both feet and sometimes just in my right foot. Seems to be worse at night, the odd night a little bit of burning.

I get blood work done regularly and the things that have stood out is low DHEA for my age, low normal testosterone, my B12 from 2018 to now has gone from 620 pg/ml to 311 pg/ml. Declining in a straight line fashion each year and test.

I was also flagged for high whole blood histamine at 1793 range is from 180-1800. and previously was higher than 1800.

My MD said my levels were fine and to get some physio for the tingling. My naturopath said they were low and gave me 3 shots in 3 weeks. First 2 were at 5000 mcg and last week was 1000 mcg and said I dont need another for a month.

My symptoms have gotten worse, the tingling was insane the next couple nights after the shots, didnt sleep more than 3 hours after the 3rd shot. Wondering if anyone can relate to any of this and if anyone has any recommendations for any further testing. I wish I had done the MMA test before the shots as they are probably skewed due to the shots.

Thanks!

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6 Replies
Nackapan profile image
Nackapan

I can only comment if you include plenty of b12 in your diet it must be an absorbtion issue with levels plummeting .

I got worse before better on b12 injections .

Starved nerves wake up. A good sign

Try and monitor symptons and keep a log

its common to have low ferritin/ iron low folate and vit D alongside an absorbtion problems.

Were you tested for caeliac disease?

Sibo

Thyroid

On any drugs like anti acids

IFAB test picks up 50% of those with PA

Its a process of elimination.

Ive had 2 brain mris ,(vertigo balance migraines)

Seen 3 neurologists ect.

Nothing else found for me .

I need regular b12 injections.

To date cause not found like many many on here .

Assumed pA or absorbtion problem.

After alot of suggrstions of anxiety. Head trauma ( had falls)

A mix of both.?

Depression

The list goes on.

The medics have little understanding on b12 .

Most important is to go by symptoms and get all the testing possible .

Loads of links and posts to read on here.

Alot of DIY

My condition not clouded or masked by any drugs or other conditions.

I hope you find this forum helpful to get as well as possible

.

Sleepybunny profile image
Sleepybunny

Hi,

From personal experience , I can say it's possible to have severe B12 deficiency symptoms with a normal range serum (total) B12 result.

The fact that your B12 levels have been dropping could be significant.

If your diet is B12 rich eg meat. fish, eggs, dairy, foods fortified with B12 then possible that there is an absorption problem in gut affecting B12 levels eg PA (Pernicious Anaemia), coeliac disease, Crohn's disease, fish tapeworm, H Pylori infection etc.

Some links may have details that could be upsetting.

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 and an online contact form.

Testing for PA

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute - Netherlands

(has useful lists of symptoms and causes)

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

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Two useful B12 books

"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.

Films and videos about B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

I am not medically trained.

Sleepybunny profile image
Sleepybunny in reply to Sleepybunny

I found some Canadian B12 documents when I searched for "Canada B12 deficiency guidelines".

There are other forum members from Canada so may be worth searching forum posts to see if you can find them.

Narwhal10 profile image
Narwhal10

hi jboyz1234,

Welcome, I’m sorry to read. From personal experience, I was very deficient (symptoms wise) and from blood test. I definitely got worse before I got better and some of the metaphors I have are utterly bizarre.

After my 5th injection, I was rudely awoken at 5 a.m. feeling like I had ‘bees stinging the roof of my mouth’. (The nerves were healing).

After my 11th injection (I had had right sided facial pain and cluster headaches for 6 months) and I can only liken it to someone had smashed a television over my head as I had very painful ‘static’.

Thank goodness I’d read about the ‘reversing out process’ where nerves heal.

I’m aware that histamine levels can be raised in both coeliac disease and small intestine bacterial overgrowth but I’m afraid my knowledge ends there. Sorry.

SouthSounder profile image
SouthSounder

I've had mild restless leg syndrome/RLS on and off for years. Never been bad enough to keep me awake, but it gets WAY worse after a cyanocobalamin injection or use of a sublingual cyanocobalamin tablet. Very hard to sleep for days after exposure. Anyone else have this? I've been wondering if it may be worse with cyanocobalamin than with methylcobalamin, which I've never used.

tootsiedadoots profile image
tootsiedadoots

B12 does use folic acid and of you weren’t getting that injected or taking an oral supplement it may have drpketed folate. It can use up iron ( ferritin) and potassium as well. It’s a complex balance, like many vitamins are. When one raises it will lower another. Zinc and copper are like that as well, as I’m sure many others I don’t know about.

My husband had lower end test and his muscles started to wither away. He was always fit, weight lifted and has a job that requires heavy lifting..His arms lost all definition, his pecs sagged, legs thin & weak. If one of your drs is willing, I would ask about trying test injections. Low T can not only have physical repercussions, but mental as well. He lost all joy in everything he loved, zero motivation and depression. Test injections helped greatly! His normal muscular structure returned in a few months without working out.

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