B12 inje

[Myratom]

I was diagnosed 4 yrs ago on injections for life ,every 12 weeks ,lately I have been very ill ,went to my doctor she did pile of bloods because of my symptoms and neurological symptoms ,I asked for my levels checked ,apparently I'm ok and they not giving me anymore ?? I was under impression you don't get cured ,your injections are to maintain your health and depleted b12 ???

[FancyPants54]

If you stop taking them then the levels will fall. What are they thinking?!

[wedgewood]

You “were diagnosed 4 years ago “

but with what ? Pernicious Anaemia or B12 deficiency . If you have Pernicious Anaemia, you cannot make use of the B12 that you have stored in your liver . You cannot absorb through your stomach, because you lack The Intrinsic Factor

Did you have the Intrinsic Factor antibody test? This test is accurate if you test positive but only accurate in about 50% of P.A. patients .For the about 50% who test negative, it’s is more difficult to diagnose .

[Sleepybunny]

Hi,

Do you mind me asking which country you are in?

I'm asking because patterns of treatment for B12 deficiency can vary between countries.

Knowing which country you are in might help people to post relevant info.

If you're in UK, there's a lot of info I could pass on to you.

Have a look at the pinned post "Various B12D/PA Resources when you have time.

[Myratom in reply to Sleepybunny]

Wales

[Sleepybunny in reply to Myratom]

Hi,

Here's some links that might be useful. I post a lot of info so might be best to read a bit each day over a week.

It's possible that some may have details that could be upsetting.

Are you a PAS (Pernicious Anaemia Society) member?

PAS membership is separate to membership of this forum.

It's open to people worldwide and you do not need a PA diagnosis to join.

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

pernicious-anaemia-society....

There are PAS support groups in Wales.

They are good places to swap information.

pernicious-anaemia-society....

PAS website has lots of useful leaflets including

"Treatment changed – What can you do?"

"Treatment is for Life"

pernicious-anaemia-society....

Some PAS members print these out and pass them to GPs.

Unhappy with Treatment (UK info)?

How to write letters to GPs about B12 deficiency

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

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

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

I suggest putting queries about treatment/diagnosis into a letter to GP as I feel this is harder to ignore. A paper trail can be very useful if you need to make a formal complaint in future.

If your GP remains stubborn about restarting B12 injections then may be worth discussing in a letter and face to face the risk of developing permanent neuro damage including spinal cord damage with them.

They may find the PAS leaflet below interesting.

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

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog about PA/B12D, mentions SACD

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

Martyn Hooper is the former chair of PAS.

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.

Has some links specific to Wales.

healthunlocked.com/pasoc/po...

Guidelines

NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency

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

This page from above document details recommended treatment for B12 deficiency in UK. If you have or had neurological symptoms, my understanding is that you should be on treatment pattern "For people with neurological impairment"

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

NICE (National Institute for Health and Care Excellence) is developing a new B12 deficiency guideline to be published in 2024.

Link to draft guideline

nice.org.uk/guidance/GID-NG...

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

This Welsh gov link discusses use of NICE guidelines in Wales.

gov.wales/national-institut...

Their use is not mandatory.

Local B12 deficiency guidelines

I urge UK forum members to track down the local B12 deficiency guidelines used by their ICB (Integrated Care Board) In England or Health Board in Wales/Scotland.

If you can't find these online or by searching forum posts then best bet is to submit a FOI (Freedom of Information) request to Health Board (or ICB in England) asking which B12 deficiency guidelines the board uses and for a link to or copy of them.

To submit a FOI request, put FOI or Freedom of Information in search box on health board website and this should take you to a page explaining the process.

It is also possible to submit a FOI request to your GP surgery although this might irritate them.

I have drawn a blank when trying to track down B12 deficiency guidelines used by health boards in Wales so FOI probably best way.

There are other forum members from Wales so you might want to search forum posts with term "Wales".

Wrong ideas about B12 deficiency

I suspect your GP is sadly one of the many UK health professionals with limited knowledge of B12 deficiency. Many UK forum members have tried to educate their GPs and other health professionals with varying degrees of success.

Some including myself have had to turn to treating ourselves when NHS treatment is not enough. Some get extra B12 injections from private GPs or beauty salons, some try high dose oral B12 (1000mcg or higher) but this doesn't work for some and some as a last resort try self injection (SI). There are posts about SI on the forum.

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

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

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

Help for your GP (and other health professionals)

You may want to point GP to these links

1) PAS website has a page for health professionals.

There is no charge for your GP/nurse etc to join PAS as an associate member.

pernicious-anaemia-society....

Will add a bit more so check back later.

2) Club B12 is a group of researchers and health professionals who are looking into B12.

club-12.org/

They have regular zoom meetings and are currently hosting a UK conference in Cambridge (17 - 20th Sept).

3) A good article to pass to GP

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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

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

Try to get your GP to explain to you the reasons why they think you should not have any more. Knowing the reasons why will help you to argue against the decision.

Due to some bad experiences I am rather cynical and suspect that sometimes B12 injections are stopped due to financial constraints on GP practices.

Some ICBs and Health boards and individual GP surgeries periodically review people on B12 injections. You might want to find out if there is currently a review in your Health Board or your GP surgery area.

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

[Sleepybunny in reply to Sleepybunny]

I can post some links specific to Wales.

Just let me know if you want me to do this.

[Myratom in reply to Sleepybunny]

Yes please

[Sleepybunny in reply to Myratom]

Here's a few...

Blog post from B12 Info.com from 2013 about ref. range in Cardiff area

(As far as I know this area still has the same ref range).

b12deficiency.info/cardiff-...

PAS is based in Wales, UK.

pernicious-anaemia-society....

There are two PAS support groups in Wales.

I don't know how active they are.

pernicious-anaemia-society....

Public Services Ombudsman for Wales

ombudsman.wales/

Health Boards Wales

wales.nhs.uk/ourservices/di...

Healthcare Inspectorate Wales

hiw.org.uk/

Community Health Councils - Wales

boardchc.nhs.wales/your-loc...

One role of CHCs is to monitor NHS Wales' healthcare services. You can ask CHCs to visit a particular hospital, GP surgery etc and as far as I know forms can be submitted anonymously but check. They also encourage people to contact them to further discuss their experiences (not sure if this can be anonymous).

There is a Board of Community Health Councils which I think looks at national issues and I guess collates information across the regional CHCs.

boardchc.nhs.wales/

Llais Wales

This organisation collects views and health experiences from people living in Wales.

llaiswales.org/

If you're unhappy with treatment for B12 deficiency it may be worth asking for help from your MS (Member of the Senedd) / Aelodau o'r Senedd AS

business.senedd.wales/mgFin...

May also be worth talking to your local MP as well.

MPs in Wales

members.parliament.uk/regio...

News item from Bangor University about B12 deficiency campaigner who was a student at Bangor

bangor.ac.uk/health-science...

[Myratom in reply to Sleepybunny]

Thank you for all your information ,as anyone any idea what an healthy level is ?? I don't understand much , but my level is 400 ,they took me off injections , when I asked why they put me on in 2019 , she said because my level was 100

[Nackapan]

Testing b12 levels when on injections mean nothing. Levels ate meant to stay high to be able to use it.

Yes investigate anything else going on.

You are right management for life.

If anything 2 monthly b12 injections shouks be tried

[Hedgehogs15]

They try this on with many of us because for some strange reason many of the medical professionals think you can be cured of pernicious anaemia or B12 deficiency. If only this was true.

It happened to me after 40 odd years to the point I thought I was going to die. A lovely GP picked up on this and I now have injections 4 weekly more if I need them. I will never recover from lack of injections for nearly 6 years but I’m better than I was.

Stick to your guns. See a different GP and get help from the pernicious anaemia society and all the amazing kind people on this forum. I wish you well x

[Myratom in reply to Hedgehogs15]

Thank you 💕

[Cherylclaire Forum Support]

It is possible that you did not get given any cause for your B12 deficiency four years ago.

If you have pernicious anaemia (PA), because this is an incurable condition, you do need injections for life. Proving (or disproving) PA as a cause is difficult. The Intrinsic Factor antibody (IFab) test will, as wedgewood said, pick up only about half the cases of those who have PA. If your doctor is not aware of this, then the GP might imagine that getting a single negative test result rules out PA completely. It doesn't.

If you do not have PA, you still might need injections for life. The route from food-derived B12 (the extrinsic factor) to being effective at cell/tissue level is a long and hazardous journey. A lot can go wrong with that - a lot that currently can't be tested for because so little is known about the process or the potential flaws. If one can be found, it is generically referred to as "functional B12 deficiency" -and needs frequent B12 injections in the hope that enough gets through. A situation unlikely to change.

If you had low B12 originally because your diet did not contain B12 sufficient to your needs and through no other cause, then you would not need injections for life because you could supplement with tablets or adjust your diet -if you can afford to and are able and willing to. Being diet-poor of B12 does not rule out the possibility of also having either PA or functional B12 deficiency or other problems.

There are other reasons for becoming B12 deficient. Without a diagnosis at the start, before the treatment, it becomes even more difficult to find out the cause, unless you have had gastric surgery of some kind. Small intestine bacterial overgrowth (SIBO) and Coeliac disease can cause B12 deficiency also, and these you can get tested for.

On balance then, it seems most likely that you do need injections for life, and that your doctor would do best by you to err on the side of caution now and continue. After all, they seemed to work for the last four years.....

More importantly, what is causing you to be very unwell currently ? That was the reason for the appointment, that should be the GP's focus.

I had B12 deficiency and have had three negative IFab tests. I was later found, by MMA test, to have functional B12 deficiency, was given two injections a week from that point and now self inject every fourth day to remain as well as I can. My serum B12 level is likely to have been over the measurable amount for seven years now. That is not a measure of my condition, so unimportant and no longer tested.

PS: If you live in Wales, you might find that the Pernicious Anaemia Society are your neighbours - they might be able to recommend a more helpful GP !

[Myratom in reply to Cherylclaire]

Thank you

[Myratom in reply to Cherylclaire]

They took me off and are now looking into coeliac as I have an all over body rash , I have all other symptoms chronic fatigue ,short of breath , peripheral neuropathy , ataxia , confusion coordinati on ,etc , they said levels are healthy I'm 400

[Sleepybunny in reply to Myratom]

Guidelines below mention that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.

NICE (National Institute for Health and Care Excellence) guideline - Coeliac disease

nice.org.uk/guidance/ng20

More on diagnosis of Coeliac disease on Coeliac UK website

coeliac.org.uk/information-...

The Coeliac UK helpline is very good.

coeliac.org.uk/glossary/hel...

Dermatitis Herpetiformis (DH)

This is the skin version of coeliac disease. I have read that if coeliac disease presents this way then it can be diagnosed by a skin biopsy. I was told by someone with experience of coeliac disease that if a skin biopsy is done to diagnose DH then it should be taken from unaffected skin not from where DH rash is but please check this for yourself (I'm not medically trained).

May also be diagnosed from observation.

Youtube video with simple explanation of DH and good pictures.

youtube.com/watch?v=t9fCTKF...(Not working as expected?)

Coeliac UK article about DH.

coeliac.org.uk/information-...

"they said levels are healthy I'm 400"

In my personal opinion health professionals pay too much attention to levels and not enough to symptoms.

Are your symptoms consistent with B12 deficiency?

If yes then to my mind they should have continued your B12 injections.

Delayed or inadequate treatment increases the risk of developing permanent neurological damage. In severe cases the spinal cord may be affected.

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

pernicious-anaemia-society....

From my own personal experience it is possible to have severe deficiency symptoms with normal range serum B12.

I had dementia symptoms and spinal symptoms with levels mainly between 300 - 500 ng/L.

If you are symptomatic but have a normal serum B12 result then look into Functional B12 deficiency. This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the person develops deficiency symptoms.

Functional B12 deficiency is mentioned in this link below.

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

It's also mentioned in Point 5 of this link.

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

MMA, homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose functional B12 deficiency.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

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

b12awareness.org/cobalamin-... (from B12 Awareness - US website)

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.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

Both PA and Coeliac disease are auto-immune conditions that can lead to B12 deficiency.

Having one auto-immune condition increases the chances of developing others.

There are forum members here who have both PA and Coeliac disease.

[Cherylclaire Forum Support in reply to Myratom]

Sleepybunny has given a brilliant reply and I have nothing that I can add to that. Except to reinforce what she has said regarding the possibility of having both Coeliac and PA.

Wishing you the best of luck with current tests and hope they also explore the possibility of both conditions.

400 means little in reality. My serum B12 levels, as I self-inject every four days, will remain above measurable levels - over 2000 ng/L - and yet I still get the odd injection that feels like a complete dud, like nothing has happened and it might as well have been Ribena. At these times, my symptoms all rush back in - but no doubt my serum B12 would still give a test result above 2000ng/L. Luckily this is a rare occurrence and temporary, but still very disheartening and can make life unexpectedly difficult.