Started B12 injections and feel unwell. Lethargic, no energy, headache, brain fog, sore hands and feet.

[Gogsy066]

Only two injections from six, so far. Don't feel great. Is this normal?

[Nackapan]

Yes. Many get worse before better as nerves wake up.

[Narwhal10]

Hi,

Welcome. Yes, symptoms can get worse before better. It’s called the Reversing out process. Please think about joining PA Society.

pernicious-anaemia-society.org

Keep a symptoms diary or tracker.

You need good ferritin, folate, vitamin D levels too.

Docs might want to re-test your blood after loading doses. There is no point because our levels should be high.

Most of us cannot survive on the 3 monthly scheduled injection. So do what we have to.

[Gogsy066 in reply to Narwhal10]

Thanks for the advice. Good to hear this is normal.

[Sleepybunny in reply to Gogsy066]

Narwhal10 mentioned that "Docs might want to re-test your blood after loading doses".

Be wary if GPs want to retest .....

The point of loading is to get your levels up high quickly to prevent further damage.

If result shows high serum B12, there's a chance that misguided GPs may want to stop your injections because they think high levels might be bad for you.

See articles below

PAS article -Testing B12 During Treatment

pernicious-anaemia-society....

Next article is from a Dutch B12 website

stichtingb12tekort.nl/engli...

These links might be useful to pass to GP if they need help.

Help for GPs

1) PAS website has a page for health professionals.

They can join PAS as affiliate members, no charge.

pernicious-anaemia-society....

2) Has your GP and other doctors heard about Club B12?

club-12.org/

It's a group of doctors and researchers across the world who are looking into B12.

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

3) Good articles to pass to GP

From Mayo Clinic, US

pubmed.ncbi.nlm.nih.gov/311...

The Many Faces of Cobalamin (Vitamin B12) Deficiency

Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1

Affiliations expand

PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002

Free PMC article

Recent BMJ (British Medical Journal) article about B12 deficiency by B. Wolffenbuttel

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

bmj.com/content/383/bmj-202...

Vitamin B12

BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)

Cite this as: BMJ 2023;383:e071725

The author of above also wrote an article for PAS (Pernicious Anaemia Society) in Jan 2024.

Only One Chance

pernicious-anaemia-society....

[Gogsy066 in reply to Sleepybunny]

Really excellent advice. I have started reading some of the papers. It's a complex and misunderstood condition.

[Sleepybunny in reply to Gogsy066]

"It's a complex and misunderstood condition."

Very true Gogsy066 and so many patients suffer from that lack of understanding.

A few more articles about the wrong ideas some health professionals have.

Misconceptions about a B12 deficiency (from Dutch website)

stichtingb12tekort.nl/engli...

Diagnosis and treatment pitfalls (from Dutch website)

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

B12info.com blog post about being symptomatic for B12 deficiency with normal range serum B12

"Your serum B12 is NORMAL – no action required."

b12info.com/your-serum-b12-...

[Sleepybunny]

Hi,

Many forum members report symptoms getting worse before starting to get better.

Perhaps you could ask GP to test your potassium levels.

Some people experience a drop in potassium levels (hypokalaemia) when B12 injections start.

I would never take potassium supplements unless prescribed by a GP as excess potassium can cause problems. Some forum members eat potassium rich foods eg coconut water, bananas etc.

If you have neurological symptoms (brainfog would count) then see treatment pattern for those with "neurological involvement" in section on Indications and Doses in link below.

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

If GP is planning to give you 6 loading injections followed by a B12 injection every 3 months...that is the treatment pattern recommended for those without any neuro symptoms.

If neuro symptoms present, I would expect you to be given .....

A B12 loading injection every other day for as long as symptoms continue to improve, followed by a maintenance B12 injection every 2 months.

If GP is not aware of treatment pattern for those with neuro symptoms, you could suggest they look in their BNF book Chapter 9 Section 1.2

It's vital to get prompt and adequate treatment. A delay or inadequate treatment increases the risk of developing permanent neuro damage. In severe cases, the spinal cord may be affected.

Should be some useful info in the reply I left on this thread including symptoms lists and links to help those struggling to get adequate treatment.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

See also pinned forum posts.

Can't type much due to arm injury.

I'm not medically trained just someone who suffered for years with unrecognised and untreated B12 deficiency.

[Gogsy066 in reply to Sleepybunny]

Thanks for your advice. I've had vague, non-specific symptoms for 7-8 years, with constant fatigue. Nothing I could put my finger on with certainty, to go to the GP with. When I did go, PA and B12 weren't mentioned. Finally, a diagnosis that makes sense. Loading injections ongoing. Nerves tingling all over, hands and feet worst.

[Oneash]

Welcome to the gang. You will be on a roller coaster for some time yet.First your blood oxygen levels improve. So everything that's been anaerobic wakes up. Then your nerves wake up. Then your dna actually starts to do its job properly, so your whole system starts to mend bits that have been failing for a long time.

Make sure you take folic acid supplements, B12 works hand in hand with it. Get out in the sunshine, you need vitamin D. Eat your nuts for magnesium and B1. Get as healthy a diet as possible, you are rebuilding. Don't over do exercise. Keep a diary, so you can chart your progress. Have a good old moan on here if you need to.

Big hugs. You will feel better soon.

[Gogsy066 in reply to Oneash]

Thanks for the advice.