Too much b12?: As a coeliac I don’t... - Pernicious Anaemi...

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Too much b12?

Palum profile image
9 Replies

As a coeliac I don’t absorb b12 and after much stress with doctors I had the 2wks of loading doses and one every 3 mths with doctor.

I pay for an injection in the other months and take Clean b12 tablets daily. As I thought your body can’t overdose I’ve been taking two b12 at night instead of one, and again in the morning, but am now reading here of studies on b12 overdose causing heart stress. I thought our bodies remove excess.

I also take 20 mg amytriptine at night ( which I’m about to ask if I can change to pregnanaline or gabapentin as I understand they have less long term side effects).

my pins and needles are reduced greatly so I can walk with friends and keep fit and at 78yrs I feel that’s my balancing act as I don’t want to self inject. However I can’t discuss taking unprescribed b12 / heart problems with my doctor. Any advice or information for folks like me?

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Palum
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9 Replies
charks profile image
charks

What a load of rubbish gets written about B12. You can't overdose on it. I take oral B12 as well but more than double the 4000 mcg you take. I have been doing it for over 4 years with no problems. It also cured my high anxiety and various mental problems.

Palum profile image
Palum in reply tocharks

That’s exactly what I thought. I’ll try to find the link as it was via something I was reading on here this morning.

palmier profile image
palmier

Could you give a link to the sources that claim overdosing could cause heart stress? Is it a reliable source?

Technoid profile image
Technoid

In multiple years of reading B12 studies and papers, I've never come across a claim that excess B12 could cause "heart stress". Can you provide the name of the study or link to it?

B12 has no tolerable upper limit as there is no dosage amount which has been demonstrably linked to harmful effects.

Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum

"I had the 2wks of loading doses and one every 3 mths with doctor."

You mention pins and needles which is a neurological symptom.

Your doctor has put you on a treatment pattern recommended for those without neuro symptoms.

I would expect you to be on the treatment pattern for those with "neurological involvement" outlined in the section on Indications and Doses in link below.

bnf.nice.org.uk/drugs/hydro...

This is a B12 loading injection every other day for as long as symptoms continue to improve then a B12 injection every 2 months.

Your GP can also find this pattern in their BNF book Chapter 9 section 1.2

See Point 1 in link below. It's about being under treated for B12 deficiency with neuro symptoms

b12info.com/writing-to-your...

Two useful B12 websites

Pernicious Anaemia Society

pernicious-anaemia-society....

There have been forum members with both PA and Coeliac disease.

Have you been tested for PA?

B12info.com

This is run by a UK campaigner on B12 deficiency issues.

b12info.com/

NICE (National Institute of Health and Care Excellence) published a new B12 deficiency guideline in March 2024.

nice.org.uk/guidance/ng239

If you have time, try to find the local B12 deficiency guideline used by your ICB (Integrated Care Board) in England (Health Board in Wales/Scotland).

I can pass on lots of other B12 info, just let me know if you'd like me to post more.

I'm not medically trained.

Palv profile image
Palv in reply toSleepybunny

Like others, I’ve fought battles long and hard with my doctors using all the links suggested and being treated with contempt and being told it was my age! Then I was transferred to a neurology consultant ( which took a year) who also ignored the neurological symptoms and seemed to know less than I did or wasn’t interested as I look fit and walk well. I tried to push for more injections than 3 monthly but am exhausted by it all even though I know this isn’t correct. The doctors were no doubt glad to pass me on. I won’t let the nurse test my b12 in case the present injections are stopped. So I pay for extra injections, take Clean b12 tablets and have been given Amytriptiline to take the pain away so I can keep walking. Apparently the consultant says I can take up to 30mgs. However I’m aiming to change to another more up to date drug before I suffer side effects from the Amytriptiline. The stress of fighting a losing battle is a nightmare which I don’t want to continue despite knowing I was right. However I won’t self inject for many reasons. Thank you though for all the links.

Bellabab profile image
Bellabab

Thats a high dose of Amitriptyline. Its an antidepressant as well as a pain killer. It works very well for me as a pain killer - its downside with me is the it causes me memory loss that can be severe at time.

HugoMinney profile image
HugoMinney

Doctors are aware that you can overdose on things - too much vitamin C will give you a runny tummy, too much steroid weakens your cell membranes. They forget that some things do not have an upper limit, and B12 does not have an upper limit, it's completely safe.

You might (about 1 in 10 of those on injections) get what we at b12d.org term "reversing out syndrome" which is where your body is so excited to get B12 after being deficient for so long, it gets a bit overexcited. This usually shows up as red skin and blotches as the homocysteine is excreted through the skin, but occasionally shows up as heart palpitations that might last for between 6 and 48 hours. But it's your body getting healthy again, not a problem.

Litatamon profile image
Litatamon

stichtingb12tekort.nl/engli...

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