Too much hydroxocobalamin: Can I pose a... - Pernicious Anaemi...

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Too much hydroxocobalamin

Countrylou profile image
8 Replies

Can I pose a question?

Someone said to me that the more you have B12 injections the more your body needs it.

I have self injected (I am prescribed 3 monthly by GP) at varying times: now weekly. I have found I have increased this due to migraines which was one of the main symptoms I had in the first place.

Could it be that my body is becoming more and more dependent on the B12 injections and the weekly rush of B12 circulating in my blood stream?

I have atrophic gastritis which is why I am deficient.

Any thoughts would be appreciated

Thanks, Louise

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Countrylou profile image
Countrylou
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8 Replies
fbirder profile image
fbirder

No. It is not true. A teeny, tiny, proportion of people may find that high levels of B12 induce the formation of antibodies to the B12 molecule. But that's extremely unlikely.

What is true is that some people need injections more frequently that others. I thought that injections every 14 days was enough for me. It took a long time for me to realise that I was still getting symptoms after 2 to 12 days, so I went to weekly injections. Then I found that twice a week was needed. But that's been steady for over a year now. I don't feel the need for more frequent injections.

pvanderaa profile image
pvanderaa

In my opinion, the amount of B12 I need is related to my level of activity and stress. I want my annual test results to be high to heal any nerve damage. And I’ve got agreement from my Dr to not withdraw injections due to high B12 levels in test results.

But due to stomach surgery, along with developing intolerance to dairy and then gluten, my stomach doesn’t make enough IF to recycle B12 in my gut.

Therefore, my body consumes B12 just like it does food and drink. The consumption is like an exponential decay curve, where the more B12 that is present, the more activity I do, and the more I consume.

I’m on weekly cyano injections but my Dr won’t prescribe more frequent injections either so I split them in half and take 0.5 ml on Mondays and Thursdays.

I get a symptom of headache and aggression on my jab day and the severity of this is based on how low my B12 got before the jab. This symptom was very bad when I was only injecting weekly. At half dose every three days, getting it is rare. I’ve found a stable dose that work for me.

I also use daily methyl sublinguals to fill in for periods of high mental activity like meetings and stressful times like my commute. The dose is typically 2x 5000 mcg twice a day and any extra to fill in as needed whenever brain fog starts.

The more B12 I get, the more activity I do to get beck to being normal and therefore I just consume more B12 in the cells of my body. I also realize that due to the gut issues and some permanent nerve damage things will never get back to the old normal and this regime is for life.

I also supplement with folic acid that I spread 6x 800 mcg tablets throughout the day to have a more uniform consumption.

Also a daily multivitamin and 3000 ug D3, B1 and B6 each 100 mg along with 500 mg TMG capsule.

I’m not medically trained. I’ve been on this regime for about 8 years now.

Alfabeta profile image
Alfabeta

The b12 oral spray that I use ‘BetterYou’ states:

‘An effective aid to normal psychological functions, expertly blended to help boost energy levels’ it uses the catchphrase Boost with a 12 over the ,O’.

This suggests that energy exerted requires b12 to supplement it!

deniseinmilden profile image
deniseinmilden

Hi pvanderaa!

Thank you for your super reply and so many other really useful contributions.

I don't care what the Drs or received science says, the reality is that lots of people, myself included, report using more B12 and supporting supplements as they increase the amount they do - including at times of extra mental output, dealing with stress, etc.

If you think about it logically we wouldn't need an adrenal system and athletes wouldn't need to eat more nutritious food if this wasn't the case - it is why people with Addison's feel terrible/collapse if stressed or exerted and why tennis players eat lots of bananas (for potassium) and so on.

It would be easy if we could always eat the same regardless of output! And people who didn't exercise wouldn't get fat!

In animal feeding terms (my area of expertise) we always vary the rates of mineral and vitamin inclusion, in balanced ratios, in the diets we give according to output/production as well as size of animal. This is not because we feel like it, it is purely because the science and outcomes dictate this. There are (almost) no placebos in animal husbandry.

As our brain uses 25% of our cardiac output it stands to reason that if we use it more then we are increasing our demands on our system.

Countrylou profile image
Countrylou

Thank you all for your comments. The person who said it to me has a daughter currently on the usual 3 monthly injection. She gets so bad in the lead up to her dose that she can’t walk and actually has to be supported. She isn’t able to look after her children (she’s 35) because she has zero energy most of the time. I told her father (a friend of mine) to increase and this is what him and his daughter have been told by the medics. They won’t listen to me because I’m not medically trained and I’m obviously taking a dangerous path overdosing on all this B12 😉

I’ve given them the information and it’s up to them now.... everyone has personal choice 🙄

Sleepybunny profile image
Sleepybunny in reply toCountrylou

Hi,

"The person who said it to me has a daughter currently on the usual 3 monthly injection"

If the daughter is in UK then might be worth passing on to her and her family that BNF (British National Formulary ) advice on B12 treatment has changed recently if you haven't already done so.

pernicious-anaemia-society....

Some UK Gps may be unaware of this recent change as they may be using a copy of BNF that has not been updated.

1) BNF recommended treatment for B12 deficiency without neuro symptoms is now....

6 Loading B12 jabs over 2 weeks followed by a jab every 2 or 3 months

2) BNF recommended treatment for B12 deficiency WITH neuro symptoms is....

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months

If she's in UK and has neuro symptoms eg tingling, pins and needles, tinnitus, tremors, balance problems, memory problems, brainfog, restless legs syndrome, word finding problems (there are many other possible neuro symptoms) etc then my understanding (I'm not medically trained) is that she should be on second pattern of treatment.

I can't bear to think of someone struggling. I hope she and her family will join this forum at some point.

Here are a few links that may be useful to pass on if they ever want more info...

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

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). Book does not mention recent change in BNF.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

There may be a PAS support group near her and you.

B12 Deficiency Info website

b12deficiency.info/

B12d.org

b12d.org/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

If this young woman is being under treated , the consequences could be severe...

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See Page 2 of articles.

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

I wondered if she's been tested for PA, Coeliac disease, H pylori infection and other causes of B12 deficiency?

In UK, test for PA is an Intrinsic factor Antibody test but IFA test is not always reliable and it is still possible to have PA even if IFA result is negative.

NICE guidelines on Coeliac disease (UK document) suggest anyone with unexplained b12, folate or iron deficiency should be tested for Coeliac.

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

H pylori infection

patient.info/digestive-heal...

More B12 info in pinned posts on this forum.

deniseinmilden profile image
deniseinmilden in reply toCountrylou

Well done you for trying. You have my sympathy - it is so frustrating to see someone suffering and know there is an easy remedy that isn't being followed because of bigoted ignorance - it makes you/me doubt ourselves, doesn't it!

At least you've tried! x

Foggyme profile image
FoggymeAdministrator

All. Please note that an off-topic sub-thread developed within this post so those contributions have been deleted as they were of no value to the original poster.

I have left this post open to replies so that the original poster can continue to benefit from input from the forum.

Thanks all 👍

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