Started b12 injections after levels are 173

[Tiger20lover]

Started b12 injections 1st loading dose and have to say I feel awful headaches on and off through out the day couldn't sleep hot & cold

Does it wear off 🤔

[clivealive Forum Support]

Hi Tiger20lover

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having injected starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with. I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 52 years.

I wish you well.

[Tiger20lover in reply to clivealive]

Hi I am currently on folic acid and iron tablets aswell

Low b12 since April original doctors just put me on the folic acid and iron then i changed doctors so they re done bloods then started injections a few days later

[Sleepybunny]

Hi,

Welcome to the forum.

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

Some people can experience a drop in potassium levels when B12 treatment starts.

Has your GP checked your potassium levels?

I would never supplement potassium unless it was prescribed by a doctor. Excess potassium can cause problems.

I'm assuming you're in UK.

It's helpful to know which country people are in as treatment patterns can vary between countries.

"Started b12 injections 1st loading dose"

How many loading injections are you going to get and how often will you get injections once loading injections have finished?

In UK, people with neurological symptoms eg tingling, pins and needles, memory problems, balance problems, brain fog, limb jerks etc should get B12 injections more often than those without neuro symptoms.

If your B12 deficiency is not due to diet, I hope your GP has at least tested you for PA (Pernicious Anaemia) and Coeliac disease.

UK B12 websites

Pernicious Anaemia Society

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

There are PAS support groups in UK.

pernicious-anaemia-society....

Lots of useful PAS leaflets.

pernicious-anaemia-society....

B12info.com

b12info.com/

B12info.com - What to do next

b12info.com/what-to-do-next/

B12d.org organises interesting talks

b12d.org/event/

The B12 Society

theb12society.com/

NICE published a new B12 deficiency guideline in 2024.

PAS link - NICE B12 deficiency guideline

pernicious-anaemia-society....

I have reservations about the guideline. I think there's too much emphasis on treatment with oral B12 but there are some good bits.

Coeliac UK - Diagnosis of Coeliac Disease

coeliac.org.uk/information-...

Two useful B12 books

Published a few years ago so some bits may need updating.

"What You Need to Know about Pernicious Anaemia and Vitamin B12 Deficiency"

by Martyn Hooper, former chair of Pernicious Anaemia Society.

"Could it Be B12" by Sally Pacholok and J.J. Stuart (US authors).

Very comprehensive with lots of case histories.

I'm not a health professional.

[Tiger20lover in reply to Sleepybunny]

Yes am in uk

Low b12 and foliate levels

Am taking folic acid and iron tablets

Was told an Anemic (nit much else)

I had 1st loading injection yesterday second one tomorrow

I'm having 6 injections over 2 week period

[Sleepybunny in reply to Tiger20lover]

Some links I post may have details that could be upsetting.

Your GP appears to have put you on a treatment pattern for those without neuro symptoms.

Do you have any neuro symptoms?

If yes to neuro symptoms, it's vital that you get enough B12

Recommended treatment pattern in UK is ....

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

There is no set time limit for how long every other day loading injections can carry on for....could be weeks even months of them.

Your GP can find this pattern in their BNF (British National Formulary) book Chapter 9 Section 1.2 or in the online BNF entry for hydroxocobalamin. You could look this up yourself.

Inadequate treatment increases the risk of developing permanent neurological damage.

As well as the neuro symptoms I mentioned in my reply above there are many other neuro symptoms associated with B12 deficiency eg

migraine

insect crawling feeling (formication)

burning sensation

electric shock sensation

tremors

tinnitus

eyelid flickering (blepharospasm)

muscle twitching

clumsiness

bumping into things

dropping things

incontinence

proprioception problems

Proprioception is awareness of where your body is in space.

If balance is worse when eyes are closed, it's dark or view of surroundings is blocked then that is suggestive of possible proprioception problems.

See Symptoms lists below for examples of neuro symptoms associated with B12 deficiency.

pernicious-anaemia-society....

b12info.com/signs-and-sympt...

theb12society.com/signs-and...

There are many possible causes of and risk factors for PA and B12 deficiency.

Do any of the following risk factors/causes seem likely?

pernicious-anaemia-society....

b12info.com/whos-at-risk/

b12info.com/causes/

theb12society.com/causes-an...

"Was told an Anemic (nit much else)"

Many UK forum members have met health professionals whose understanding of PA and B12 deficiency is limited.

If you have the time and energy, try to read about B12 deficiency in case you meet one of them.

If you think you're being under treated, see link below.

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

"Am taking folic acid and iron tablets"

It's usual to start B12 treatment before starting folate treatment.

Many UK forum members find they need more B12 than NHS allows.

There's more info I could pass on, just say if you'd like me to add more.

[Tiger20lover]

I was diagnosed in November 2023 with vestibular migraines Take Amertriptalin 30mg for these

Had a ct brain scan all clear

Yesterday after injection I was fine for a.few hours then had headaches on and off but settled with rest and paracetamol last night couldn't sleep much I have heart palpations so they were going but nothing more than normal for me

I was cold and shivering again told that could happen I am diabetic so could happen with low blood sugars

Took4 dextrose and it settled down so think that was more sugar levels than anything

[B12again]

I self inject (SI) every other day (EOD). Along with the cofactors of methylfolate 5mg weekly, Gentle Iron daily, vitamin D3+K2 5000IU daily. I was still getting, what I called my B12 headaches, as they were so distinct. The on a WhatsApp group a GP, who also had suffered headaches, strongly recommended Elemental Magnesium powder 400mg daily as it was also an important cofactor with B12 injections and very good for headache alleviation, also a calming effect on the body. The magnesium (for me) was the final piece of the cofactors that brought me into a good place of managing my symptoms. It’s taken a year of ups and down's, trial and error, advice from guys and gals here and self education and because of lack of gp understanding, getting B12 ampoules from Germany, like very many on here and elsewhere. If you haven’t taken Elemental Magnesium I would certainly recommend to try it, headaches are debilitating. I get it from Vitamin Express. I wish you well on your road to getting your life back. 🙂🙏

vitaminexpress.org/uk/magne...

[Tiger20lover in reply to B12again]

Thankyou for your comment I had my 2nd dose of b12 injection today and so far all good

I have some magnesium supplements but unsure what ones ill check and look into the link u sent.

The headaches and dizziness are the worse symptoms for me doesn't help I suffer server depression and panic attacks also.

[Tiger20lover in reply to Tiger20lover]

I've had all 6 doses of b12 injections and feeling better than I did at the beginning. Now GP has said one injection every 3 months and continue with iron tablets and folic acid tablets.

Still have the headaches but not as often.

Let's see how I get on..

Thankyou to everyone who commented