How long does it take for B12 injection to kick in?

[Booterstown]

Diagnosed with PA 5 years ago. Because of nerve damage B12 shot every 9 weeks. How long does it take for B12 shot to kick in? Practically on my knees with exhaustion by week 6 and then when I get shot I feel worse.

[wedgewood]

well you really need your B12 injections to be much more regular . They should be often enough to keep all symptoms at bay . For some reason this is not acknowledged by the medical profession . That’s why members of this forum self inject B12 to achieve . . When you get your delayed injection , your body has to work overtime to recover and you then feel worse .

You should try to get more regular injections . This is often not possible if your doctor refuses .The medical profession is notoriously ignorant about PA. / B12 deficiency . You should not be suffering for lack of a cheap vitamin .

Some beauty salons give B12 injections , but they are expensive. ( £30.00 and upwards )

So we have to self-inject . This is easy and cheap. Are you in the U.K.? I will send you all information about it if you wish . An injection will then cost about £1.60

for everything .

But do first try to get what you need from your doctor . But it’s good to know that there is a way out of it . Best wishes

[Burbank in reply to wedgewood]

I live in England and would appreciate any help you can give me, thankyou for answering me plus I don't know how to use PayPal but I'm desperate now. Hope to hear from you soon x

[wedgewood in reply to Burbank]

To get a PayPal account , Google “ How to get a PayPal account in the U.K. “. It’s really useful to have . I always use it to buy on line .as it saves you having to enter all your card information . Other information I’ve sent to you by private messaging .

[Sleepybunny]

Hi,

Hope you find some answers here.

Do you mind me asking which country you are in?

The reason I am asking is that patterns of treatment for B12 deficiency vary between countries.

I'm in UK where NHS mainly uses hydroxocobalamin injections although a few get cyanocobalamin injections. I believe cyanocobalamin is used most often in USA.

There is also methylcobalamin and adenosylcobalamin. Some forum members report that they respond better to a particular form of B12.

If you're in UK, link below outlines two patterns of treatment for B12 deficiency

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

"Because of nerve damage B12 shot every 9 weeks"

How many loading injections did you get when treatment started?

In UK, patients often only get 5 or 6 loading injections at start of treatment but BNF suggests every other day loading injections for those with neuro symptoms for as long as symptoms continue to improve. This could mean weeks even months of every other day loading injections as there is no set time limit.

If you're in UK and you only had 6 loading injections, you could point out that BNF suggests every other day loading injections. You may have a good argument for them to repeat loading injections if you're in UK and they didn't follow BNF pattern for those with "neurological involvement".

UK GPs can find the relevant info in their BNF book Chapter 9 Section 1.2

Point 1 in link below is about writing a letter to GP if under treated for B12 deficiency with neurological symptoms present.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Have you been referred to

1) a neurologist?

2) a haematologist?

Link below outlines when a UK patient with B12 deficiency should be referred to a haematologist and gastro-enterologist.

NICE when to refer B12 deficient patient

cks.nice.org.uk/topics/anae...

If GP won't refer you, you could ask them to write to local haematologist asking for advice on treatment. There's a possibility that they may suggest that you have B12 injections more often.

Be well prepared for any specialist appointments. Sadly there are some specialists (and GPs) who lack understanding of B12 deficiency and PA so seeing a specialist is no guarantee of better treatment.

"on my knees with exhaustion by week 6"

Symptoms Diary

May be worth keeping a daily symptoms diary which tracks changes in symptoms over time and if and when treatment is received. This could be useful evidence of improvement or deterioration in symptoms to show GP or specialist and may help them to work out how often you need B12 injections.

Have you asked them for injections more often and if you did, what did your doctors say?

In UK, GPs are allowed to prescribe off licence if they feel it is in the patient's best interests although some GPs may not want the hassle of explaining to management why they have done so.

gmc-uk.org/ethical-guidance...

Misconceptions (wrong ideas) about B12 deficiency

Too many of us on this forum have met health professionals with misconceptions about B12 deficiency. Worth knowing what the common misconceptions are.

B12 article from Mayo Clinic in US (aimed at researchers and health professionals)

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

UK treatment guidance has changed since this blog post was written.

Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

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

Other PA/B12 websites.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Some people on this forum feel they have no other option but to treat themselves in order to get adequate treatment. I had to, as NHS refused to treat me when my symptoms were really bad. I need far more B12 than NHS treatment allows for.

In UK, as well as beauty salons, there may be some private GPs who offer B12 injections.

Some people use high dose oral B12 eg 1000mcg or more between injections. Personally I find this helps a little bit but for me oral B12 is relatively ineffective.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained, just someone who suffered for years from unrecognised B12 deficiency.

[Booterstown in reply to Sleepybunny]

Thank you! Sleepy bunny and Wedgewood your replies are extremely helpful.

I live in the UK. I did send away for self injections some years ago but gave up doing so as I was nervous and hopeless at injecting.

I did get the usual loading injections when diagnosed then put on 3 monthly regime. Because I started (over many months of complaining) getting burning in both legs and other nerve symptoms I was put on 9 weeks for injections.

However after 6 weeks since receiving injection all symptoms return and in particular extreme exhaustion which is so debilitating.

When I receive injection on week 9 I start feeling awful still exhausted and pain all over body. I had injection last Friday and since then I have had trouble sleeping and burning in legs worse. Hence my query on how long it takes to kick in.

I think now I am going to keep a daily symptom diary to produce to Nurse when called for next injection.

Also, if I do not have any joy I shall write to my GP.

Once again, thank you so much for taking the time and effort to reply.

All the best

[Sleepybunny in reply to Booterstown]

UK B12 documents

NHS article about B12 deficiency (simply written, lacks detail in my opinion)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

b-s-h.org.uk/guidelines/gui...

Summary of BSH Cobalamin and Folate Guidelines (main points from above document)

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published next year.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment(over 40 pages).

Local B12 deficiency guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

Local guidelines are reviewed every few years....keep an eye on them as there are moves in Uk to move more people onto high dose oral b12 as an alternative to injections.

Hope you're not in this UK area....

b12deficiency.info/gloucest...

Lots more info in links at bottom of other reply.

[charks]

I think you should try oral B12. It can't hurt and you may be lucky and find it works for you. I dilute liquid B12 in water and drink it throughout the day. It also has the added benefit of keeping me hydrated.

[Booterstown in reply to charks]

Thank you Charks. I did try to top up with B12 tabs but I found burning in legs got worse, wondered if was overdosing! However, I am willing to try anything. Never heard of liquid B12. Can you tell me where I could get that.

Best wishes

[Sleepybunny in reply to Booterstown]

A lot of forum members report that their symptoms get worse for a while before starting to improve.

Someone said to me that they thought it was a sign of nerves waking up.

My neuropathic type symptoms eg tingling got worst before they got better....I took it as a sign that the B12 was having an effect.

A good health food shop should have liquid B12 . There are brands where you use drops and you can also get sprays.

"wondered if was overdosing!"

I'm not a medic or a scientist but I think it would be very hard to overdose with B12.

It's a water soluble vitamin and I think that any excess would pass out in urine.

Huge doses of B12 are used to treat cyanide poisoning at concentrations 1000s of times greater than that used in NHS B12 injections.

See BNF link below.

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

[charks in reply to Booterstown]

I get mine from iherb but it is sold on amazon as well. Get the 5000mcg version. I believe that my protocol of diluting B12 in water and drinking it throughout the day replicates the bodies natural way of obtaining B12 from food. I take about 3 droppers full (15,000). Taking B12 this way means I can customised my daily dose and that gives me more control over my situation. Some days I need more B12because of extra activity or stress. Don't worry about overdosing. It can't happen.

The reason I take so much is because I can only absorb B12 passively so only about 1% of the B12 supplement I take will make it into my blood. The process is basical osmosis which is a very slow process. If you take large amount at one time most of it will go through your intestines without being absorbed, it will be wasted. So little and often is best.

I think you should try my protocol. You have nothing to lose and everything to gain.

[Hamayeshguy in reply to charks]

I found 15000 mcg in china and I'm going to buy that one for just 8-9 USD per 59 drops of . I want to buy one kilogram methylcobalamine food grade 99% pure too. It's just 600 USD from China! Then dilute it in deionized water in my friend's lab. I think this way is more cost effective. May be pack it and sell it for cheap to anyone who has no money. I believe B12 and 5-MTHF along with iron and b complex pills and D3 k2 and as well as Omega 3 must get covered for anyone who has B12 symptoms. Injection should be provided for them it's our right. B12 deficiency illness is the most ignored disease. I have no idea why but I think it's most political rather than medical reason.

[mo2march]

You have just exhaustion for 6 weeks thats really being fortunate. I'm not officially diagnosed as PA patient and I can absorb b12 orally but my symptoms are so bad and so extensive. I can't seat I can't walk I can't sleep ( severe numbness in my arms) when I walk I feel a big burden on whole of my body. Really I have not idea what I have to do. Just injection and crying helps me. I feel pain , burning feeling and extreme weakness on all of my muscles. I have tinnitus, blurry eyesight, double vision. My fingers get extreme cold when I try to walk more than two hours. I have no idea what to do but I live in agonizing situation and there is like no way out.

[Booterstown in reply to mo2march]

This does not really merit a reply. Although I did not list all of my ongoing symptoms before, during and after B12 injection, I too suffer many of those symptoms as do many of us on this forum! You should really have your GP carry out blood test for B12 deficiency.

I think my joining this forum at 4 am in desperation yesterday speaks volumes.

[Hamayeshguy in reply to Booterstown]

I'm injecting for ten months and no tests can be carried out after ten months injection except Holo transcobalamin which is not accurate and I asked for that too but he refused I also asked for IFab test he said no. May be I have autoimmune disease like Sjögren's syndrome- progressive multiple sclerosis- rheumatoid arthritis- or other disease but still I don't know what to do. Except to travel and join my family in my home country and get help in therem

[Hidden]

Ah that exhaustion is an absolute killer. I have Covid at the moment and the fatigue reminds me how awful it used to be. Great replies from Sleepybunny and Wedgewood as usual. I really wish people realised how all consuming that exhaustion is and how it really affects quality of life. I don't think it's an exaggeration to say it is life limiting. I self inject weekly, with the support of my GP. Good luck with your GP, I hope you get the help you need ❤️

[TenovSvetik]

Hallo, i am not a medical person, but i suffered from B12deff. very much. At the beginning of 2016 my B12 was 50 pg/ml. I could not walk alone without a stick. Nerve damages, peripheral neuropathy. Now i am much better, playing tennis on court. You have to self inject much often ! Minimum once per week. Till now i have more than 900 shots. Be strong, you have to fight ! All the best.