Doctor tried to tell me B12 everyday is toxic

[CRK1]

I've been on this forum for a couple of years, and all of you out there have helped me enormously to understand and deal with my diagnosis of PA.

I am in the USA and the issues with doctors are similar to UK - most are uninformed and full of misinformation. My internist (GP to those in the UK) did spot the B12 issue in 2022, and PA was diagnosed, but way under treated. This led to my collapsing back into severe symptoms in late 2022, at which point I found the PA Society and this site. Now I self inject and have settled on a regime of 2x a day. I did manage to get my internist to prescribe 1x a day, and I buy from Germany too. Interestingly, B12 injections are not covered by US health insurance including Medicare. So I pay for everything.

My internist had flatly refused to test my iron, so I did a panel privately, had low ferritin and started taking iron supplements, but have not had a positive experience apart from more energy. I finally got a referral to a hematologist as I still have a lot of fatigue, brain fog sporadically etc.

Today when I saw the hematologist the conversation did not go well at first when I told him I was self injecting 2x a day. He immediately said that this was a toxic level, that it would cause the tingling I am getting intermittently (when I inject less that 2x day) and would cause fatigue and brain fog. He even said it was dangerous to be injecting that level! I almost walked out and told him to show me the peer-reviewed science behind his statements. He gave me a print out of an article based on the experience of a single patient. The title was "toxicity caused by b12 use", but on reading the article I found that it stated the toxicity to be acne, and the patient was taking high oral doses and not injections. Next time I see the doctor I will ask him if he actually read the article!!

The good news is that he agreed my iron is low and that I would benefit from an infusion. That means two infusions as I am in the USA and that is what they do, but at least I will get them. Anyone in the USA had iron infusions and can tell me what to expect?

[Hockey_player]

This forum is awesome! It's good to hear that others like you are getting good information and not accepting BS from their doctors. You say the B12 is not covered by your insurance. Is it expensive? I live in Canada and can buy injectable cyanocobalamin over the counter. It only costs about $1.30 per dose including the needles. Our dollar is low at the moment: $1.30 Canadian is only 0.90 US.

[Jones84]

get your vitamin d, magnesium and zinc tested aswel

[Midnight_Voice]

Ask the doctor how he would treat cyanide poisoning.

(Clue: unimaginable amounts of B12. Now, if that was toxic, they would be giving the patient a double whammy instead of a rescue path).

[Sleepybunny]

Hi,

Maybe give the haematologist some of these articles.

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

stichtingb12tekort.nl/engli...

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/engli...

B12 Institute in Netherlands has a good article on problems with treatment and diagnosis.

b12-institute.nl/en/diagnos...

Search online for "B12 deficiency Wolffenbuttel".

This should show several articles by B. Wolffenbuttel including one for Mayo Clinic and one for BMJ (British Medical Journal) and the one below he wrote for PAS (Pernicious Anaemia).

pernicious-anaemia-society....

In my personal opinion he's one of the few doctors who understands B12 deficiency.

Perhaps point these out....

1) PAS (Pernicious Anaemia Society) has a page for health professionals.

pernicious-anaemia-society....

Health professionals across the world can join PAS as healthcare affiliate members at no charge.

PAS have webinars on aspects of PA and B12 deficiency

pernicious-anaemia-society....

2) CluB- 12 is a group of doctors and researchers across the world who are looking into B12.

club-12.org/

They have regular zoom meetings and have hosted a conference in UK.

3) B12d.org organises online talks about B12 deficiency

b12d.org/event/

[Technoid]

"TOXIC : containing or being poisonous material especially when capable of causing death or serious debilitation

from merriam-webster.com/diction...

Acne is unwelcome and can seriously affect one's social life but death or serious debilitation? A bit much. Plus if you've been taking B12 at some high dosage or frequency for quite some time, it's unlikely you'd suddenly break out in acne. If you did, and the B12 seemed to be the source, I'd probably suspect a bad batch or impurities, rather than the B12 itself.

Yes, some people have gotten acne reactions from B12 supplements or tablets (there are some posts about that on this forum for example). But if it hasnt happened in 2 years of injections, it's unlikely to suddenly occur. I think your hematologist is grasping at straws.

There is a reason that B12 has no tolerable upper intake level.

[CRK1]

I too do him that if continued to feed me rubbish science I’d be finding another hematologist. He backed down. US doctor don’t like negative patient reviews.

[wedgewood in reply to CRK1]

Good for you ! 👍

[CRK1]

Thanks! As I said this forum is awesome - in fact life changing for me.