B12 early days of injections

[Zmalp]

Hi,

DH has started a course of B12 injections through a private clinic which specialises in vitamin injections. He has autoimmune thyroiditis, NCGS and psoriasis and is under investigation for Hashimoto’s encephalopathy due to memory and cognitive issues, though the neurologist can find nothing of concern organically. B12 blood levels are moderately high normal on oral supplements. Has previously been folate and vit D deficient so is permanently supplemented

Got fed up of waiting to see a GP and for his next neurology appointment to review his neuropsychological test (which we know showed substantial memory deficit) so booked him in for a course of B12 to see if there was any change at all. So far he’s on one per week which I know may not be enough and 2 injections into the course with another on Monday, where the gap will be only 4 days from the last one.

Reactions so far are he feels very achy so he thought it might be an autoimmune flare but I’m wondering if it’s B12 as it’s only happened since he started the course. Also very tired on the day of the jab, sleeping like a log even earlier than usual. I’m not sure if it’s wishful thinking yet but I may have noticed a very slight improvement in mental sharpness and energy on a few days.

I’m speaking to a GP on the phone on Tuesday which I fully expect to be a waste of time as it’s another random locum who won’t have read the extensive notes. I want an MMA and homocysteine test but I think I’ve got more chance of flying to the moon in this health authority

Wondering about what to look for at these early stages that might indicate if it’s worth increasing the frequency of injections or if we stick with one per week and take it slowly

[Wwwdot]

Hi Zmalp

I am pleased to read that your hubby is getting help. It’s tough when those you live are suffering but you sound as though you are on the right path.

The thing about B12 deficiency is that everyone’s deficiency is different and so is their recovery. I can only share my experience.

When I started loading doses mine were 2 a week then a week off over a period of six weeks then every other day. I felt very achy, bad headache, cold, shooting pains - I just felt rubbish! I also was very very tired. My interpretation is that my body was kickstarting - firing up which was painful and exhausting! After a few weeks I started to see improvements.

I am now a year in and I self treat. I keep all my nutrients requirements at above average and I self inject to manage my condition. I feel better than a year ago.

I am confident that with your guidance and the help and support from this group that your hubby will also find his recovery path.

🤗🤗🤗

[charks]

I noticed a big difference in just a couple of days. My healing was very rapid. I estimate I was 85% better within a month. My neurologist it was quite normal to get better so quickly. But I take oral B12 and I was taking a lot. I think one injection every week won't work very well. IMO you need to flood your body with B12 in order to maximise recovery.

[Nackapan]

Everyone responds differently .The wisest neurologist I saw was it takes time.

He said.

No quick fix.

My levels were extremely low.

My symptoms severe

He was right.

3 steps forward 2 back at times.

Oral b12 did nothing for me unfortunately

[am111]

Body aches and sleepiness in the beginning are normal, especially in the beginning of B12 treatment. It means the body is using the nutrients to rebuild the neurone. This phase is good and will pass.

For me, increasing frequency from once-a-week did not result in faster recovery. We need to note that recovery from B12 takes time and patience. Just keep on supplementing as per a fixed schedule (i.e. if doing once-a-week, be regular and do not increase or decrease) and keep the B12 high, especially till things stabilize,

[Sleepybunny]

Hi,

Many on here report their symptoms getting worse before they start to improve.

Someone described it to me as the nerves waking up after being starved of B12.

Link below has a section on potential side effects.

Aimed at health professionals

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

Have his potassium levels been checked?

Some people experience a drop in potassium (Hypokalaemia) when B12 treatment starts.

Some forum members here try to eat potassium rich foods eg beans, bananas etc.

I would never take potassium supplements unless prescribed by a doctor as too much potassium can cause symptoms.

"I’m speaking to a GP on the phone on Tuesday which I fully expect to be a waste of time as it’s another random locum who won’t have read the extensive notes. I want an MMA and homocysteine test"

Unhappy with treatment? UK info

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Always keep copies.

Thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency

healthunlocked.com/pasoc/po...

MMA/homocysteine and Active B12 (holotranscobalamin) may help to diagnose Functional B12 deficiency.

There's more B12 info in pinned post "Various PA/B12D resources".

I'm not medically trained.