B12 stopping injections

[Sophielala]

Hi I have been on b12 8 weekly injections since 2016

My symptoms were really bad and I couldn’t work or do day to day activities

Now my levels are consistently 2000+ the doctor has stopped them

Any one stopped b12 injections?

[Nackapan]

Are you now able to function?If so do not just stop 8 weekly b12 injections

Go back to Gp or another in the practice

Was the cause ever identified of yiur b12 deficiency?

Mine wasn't so assumed IFAneg pernicious anaemia or a general absorption problem.

Never had an Intrinsic factor test.

Presently on 2 weekly injections.

I'm also ' under review'

Just stopping if you have managed yo get your life back seems negligent of your Gp.

They need to get clarification of b12 toxicity concerned.

I'm sure that's the worry.

If you look through posts

Plenty of recent links on this in Sleepybunny replies

Also PAS has information for professionals

Write yo the Gp

Copy in the inactive manager .

8 weekly in the BNF/ nice guidelines

Their back is covered

I DO NOT UNDERSTAND

[Sophielala in reply to Nackapan]

Morning

Thank you for replying

Hope the 2 weekly injections are helping.

Symptoms are better, was told I would be referred back in 2016, never happened, had to push for blood tests to check, stopped injections asked for blood tests and didn’t even check b12 or folate just usual full blood count.

Have coded access so can see results

None reported!

Never found the cause either

Will try go to an alternative GP in the surgery

Thank you

Was told “ get a good multi vitamin to cover yourself “

[Nackapan in reply to Sophielala]

A multivit will be useless if you can't absorb b12. Useful otherwise I take one to try and stay in balance now.

Was your initial b12 low ?

Or in range but no other reason found fir Symptoms?

What was the initial reason fir starting b12 injections?

Try and get paper copies of your blood tests.

I have access but they are removed after 6 months ???

Access rights ate changed from April too.

Symptoms on your letter. Keep it brief.

Hope you get a gp to listen.

Please keep us posted

[Hidden in reply to Sophielala]

"get a good multi vitamin to cover yourself"

This is what my partner was told 4/5 years ago, we did this and he felt awful so we just got B12 tablets.

Yes it raised b12 levels from 129 to 269 but it has never resolved issues related to b12.

After seeing 3 other doctors we actually got one of the doctors to give him one injection in dec 2021, since then I have given him injections. At the moment he is on rollercoaster, but hopefully will improve.

I also had injections stopped, even fainted in the surgery, had to fight to get injection.

I now buy my own from Germany, I/we cannot trust the NHS regarding injections, we are not going to plead, argue or beg anymore.

Levels are immaterial go on how you feel !

Personally I would purchase your own, information on how to obtain b12, needles etc on this site.

Wishing you well !

[wedgewood in reply to Hidden]

Excellent advice Sallyannl 👍

[Marz in reply to Sophielala]

Multi-vitamins can be a problem if they contain iron - as this will block the benefits of other ingredients. Also Calcium and Iron bind together.

I have read that further testing after supplementing B12 is of little use as results will be artificially inflated ....

[Adsypadsy in reply to Marz]

Hi Marz,

I have a medical condition that causes my body to store iron. The general health risks that this can cause was explained to me by haematologist but not how it could affect other nutrients.

Can you please guide me to a good source that provides information on how iron affects the intake or absorption of other vitamins or minerals, it would give me a better understanding of my condition.

[Marz in reply to Adsypadsy]

I see on your Profile you also have an underactive thyroid. I am also a member of Thyroid UK here on HU - many of us are on both ! If you are able to join you can read many posts about iron disorders. Click onto humanbean and read her Replies - her iron knowledge is excellent.

In my Reply above about iron negating absorption of other nutrients may only apply to supplements. Am not sure about excess iron occurring naturally in the body.

[Hidden in reply to Marz]

Thankyou marz, both of us have tried multi vitamins and both have had problems, felt awful for hours. We have a very good diet and all I could work out is that we didnt need most of the vitamins and minerals. We've even tried b vitamins again these didn't agree.

So we stick to our normal diet and B12 injections !

Not wise to flood your body with vitamins and minerals that you don't need.

[Marz in reply to Hidden]

Yes I always suggest testing first to check for deficiencies before supplementing.

[Nackapan in reply to Hidden]

Definitely.

I go by blood results.

A standard multuivit can greatly help some.

Has sensible amounts .

Well calculated to be safe.

The more expensive ones have higher levels that can make you ill if not needed

Often if you have a b12 absorption problem other nutrients will not be absorbed as well.

I never took a vitamin supplement before ill.

Totally thought a good diet which I've always had was being absorbed abx keeping me well.

Well I got ill as stopped absorbing b12 abd a few other nutrients in enough quantity from my food that I needed.

I've posted this for other readers on a good diet but may benefit greatly from a multivit .

[Hidden in reply to Nackapan]

Don't get me wrong nackapan, I am not against multivitamins, just that they made us feel worse.This is why I strongly advice people to keep a diary.

[Nackapan in reply to Marz]

Yes its not recommended to test levels of b12 once on injections .Meaningless.

Trouble is if you want folate levels testing it's done with b12 in the labs

Good initially as folate deficiencies need supplements but only after treating b12 if needed .

what's happening is doctors are seeing high levels which they should be on injections and stopping treatment!!

It's madness 😠

[Sophielala]

Thank you!

I will take on that advice

Initial reading was 176 now over 2500

But symptoms better from injections now currently stable symptom wise

Will keep you posted

Thanks again for the helpful advice

[Adsypadsy]

Hi,I get regular blood tests to keep track of other medical conditions and my B12 is always 1500+, sometimes 2000+. GP always comments on it then, thankfully, follows up with, "that's because of you injections".

Did your GP give a specific reason for why they are stopping your treatment.

I don't understand why GP's stop treatment that is improving someone's health but it seems to happen a lot.

Good luck.

[mcg-woo]

Yes, I stopped injections and took 1000 mcg of sublingual methyl daily for 3 months and became the sickest I have ever been in my life. I was severely symptomatic and anemic. It was awful. I would not recommend it. I went back on injections but recovery was slow. I take weekly injections now.

It is so frustrating when doctors test b12 levels after starting injections and then cut back or stop injections because levels are off the chart. My doctor cut back my injections after testing my levels that were over 2000 . This delayed my recovery and caused unnecessary suffering. Best of luck to you. You may have to take matters into your own hands.

[Cherylclaire Forum Support]

It is certainly worth trying other GPs in the practice:My usual GP was fine about my self injecting, because she had treated me with 2 injections a week for 6 months and had seen the improvements for herself. This was later reduced to one a month and I was being seen by specialists. When she was on holiday, I saw another GP from the same practice about heart arryhthmia - he had my NHS injections stopped while she was still off.

Differing approaches to treatment: one had been observing me, monitoring me, treating me accordingly, consulting experts - the other had never met me and had no knowledge of my case.

The self injecting continues at the same frequency, since this generally keeps me able to function. My usual GP was acting on expert advice, the second one just went into a panic.

I have never found any proof that there is a level at which B12 is toxic. I have asked for it from any consultant who has brought it up, sometimes several times, and never yet had a response beyond complete subject-change !

When I saw DNA consultants, they told me that the treatment advice they give for B12 deficiency caused by hereditary functional problems (thankfully rare) is the same: two injections a week. They find, to their frustration, that patients return to them because GPs will not follow this advice.

There is clearly a training and education issue that needs addressing here.

[Nessy50]

That’s crazy but happens to some. They shouldn’t even be testing on injections, levels clearly will be high. I’m on 8 weekly but that’s never enough so I si. It’s the way to go. They test my level & always over 2,000 some say it’s too high & now it’s usually normal. The longer you’re off them the more damage will be done. Tablets are useless if you don’t absorb from food then you need injections. X

[rusholme]

Your B12 levels will be high if you have been on injections; as some have stated they should not be checked once you are receiving injections - it's pointless. There is a wealth of information on the Pernicious Anaemia website pernicious-anaemia-society..... Particularly look at the leaflets - some are only available to members. Here are a couple of links to get you started. pernicious-anaemia-society....

pernicious-anaemia-society....

You could tell your GP that they get free membership of PAS

pernicious-anaemia-society....

There is a leaflet ‘Update for Medical Professionals’

pernicious-anaemia-society....

GP's are 'general practitioners' knowing a little about a lot. Unless they see ,or are interested in, pernicious anaemia they may not understand the effect their actions have.

Maybe consider becoming a member, it is not expensive. You will then have access to their helpline and all the leaflets.

[Sleepybunny]

Hi,

I am surprised that your injections have been stopped if your symptoms were really bad prior to treatment starting.

Do you have a PA (Pernicious Anaemia) diagnosis?

PA requires life long treatment.

There are other causes of B12 deficiency that also require life long treatment.

I've assumed you're in UK.

It's helpful to know which country someone is in as patterns of treatment for B12 deficiency vary between countries.

If you have a PA diagnosis or suspect PA is a possibility, worth joining PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society.org

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

PAS website has useful articles including one with title "Treatment is for Life" that some PAS members print out and pass to their GPs.

pernicious-anaemia-society....

PAS website has a page for health professionals that your GP may find helpful.

pernicious-anaemia-society....

"Now my levels are consistently 2000+ the doctor has stopped them"

You could ask your doctor why they think having a level of 2000+ is a problem.

I would expect B12 levels to be high if on regular injections.

It's possible your doctor is someone who has some misconceptions(wrong ideas) about B12 deficiency. Far too many of us on here have met health professionals who lack understanding of B12 deficiency.

Misconceptions about B12 deficiency

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...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates covering a variety of situations linked to B12 deficiency.

Point 1 is about under treatment of B12 deficiency with neurological symptoms.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

CAB NHS Complaints

citizensadvice.org.uk/healt...

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 guidelines)

pernicious-anaemia-society....

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

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

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...

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 in 2023.

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.

If you're in UK, 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.

Symptoms

Do you have any symptoms now that are consistent with B12 deficiency?

Do you have any neuro symptoms now or did you have any neuro symptoms prior to treatment starting?

If treatment for B12 deficiency is denied, delayed or inadequate, there is an increased risk of permanent neurological damage, including damage to the spinal cord.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog about PA, mentions SACD

martynhooper.com/2010/09/21...

Symptoms Diary

I suggest you consider keeping a daily symptoms diary which tracks changes in symptoms over time and if and when any B12 treatment is received . If your symptoms start to return, get worse or new symptoms appear, it's evidence that you can show GP/specialist.

Stopped Injections

There are lots of threads on this forum about people's injections being stopped.

I suggest you search posts on this forum using terms "injections stopped".

Some UK forum members resort to treating themselves if NHS treatment is inadequate.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more 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.