B12 injection

[Icomaria]

I was taking b12 injection for 3/4 years, however last year September 2020 I turned up for my appointment and nurse told me I am not longer need it because I have a good level, I did not challenge it. But now reading many people’s post I feel I should speak to my GP about it.

[Nackapan]

Have your symptoms returned?

[fbirder]

Yes, bypass the idiot nurse and tell your GP that you want to be treated as described in the British National Formulary.

[Hidden in reply to fbirder]

Is there anyway we can get this reversed.What about all the older generation who haven't got access to a laptop, and haven't got the mental capacity

To seek help. It's a crying shame.

I'd rather have b12 injection, than my sister with dementia who every morning is given a long line of tablets to consume. One for this, one for that and others

To resolve the side effects of tablet one or two.

Makes no sense .

[Sleepybunny in reply to Hidden]

"Is there anyway we can get this reversed"

Have just posted a new thread that might be relevant.

[Icomaria in reply to fbirder]

I will call my GP to request it. Thank you

[Sleepybunny]

Hi,

I'm sorry to hear that your injections were stopped.

I suspect your nurse and possibly your GP have some misconceptions about B12 deficiency.

It's also possible that new guidelines on treating B12 deficiency have been introduced in your local area...I'm assuming you're in the UK.

Have a look at these links below ...... there is a lot of information here so you may want to read it over a couple of days.

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

Unhappy with Treatment (UK info)?

1) Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link has letter templates people can base own letters on. The templates cover a variety of situations linked to B12 deficiency.

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.

When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.

Proof that a letter was received may be important if there is a need for a formal complaint in future.

I included a request in letters that a copy of letter was filed with medical notes.

My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.

Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.

Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.

Keep copies of any letters sent or received.

2) CAB NHS Complaints

citizensadvice.org.uk/healt...

3) Local MP/devolved representative may be worth talking to if struggling to get treatment

members.parliament.uk/

4) PAS news item about contacting NHSE (NHS England) if struggling to get treatment during pandemic

pernicious-anaemia-society....

Link includes an email address for NHSE

Have you considered joining PAS who can offer support and pass on useful info?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and useful articles on website that PAS members can print off. Some articles can be accessed by non-members.

pernicious-anaemia-society....

Misconceptions and Misunderstandings about B12 deficiency

Perhaps your GP/nurse would be interested in these articles?

Testing B12 during treatment (PAS article)

pernicious-anaemia-society....

Testing B12 during treatment

(article from Dutch B12 website - ref ranges and units may vary from those used in UK)

stichtingb12tekort.nl/engli...

Misconceptions about a B12 deficiency

(article from Dutch B12 website)

stichtingb12tekort.nl/engli...

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Local Guidelines

I often suggest that UK forum members track down the local guidelines on treatment/diagnosis of B12 deficiency for their area of UK and compare them with national guidance.

Each CCG/Health Board/NHS Hospital Trust in UK will have local guidelines and these sometimes differ in their guidance from that in BSH, BNF, NICE CKS links below.

Sometimes these local guidelines are not helpful. See this next link to a blog post.

b12deficiency.info/blog/202...

A few of these local UK guidelines have been posted on the forum. If you manage to track down local guidelines for your area, keep an eye on them as they get reviewed periodically.

There may even be information on B12 injections on your GP surgery website that is worth checking...I have been surprised by how ill-informed some of the comments about B12 treatment on GP surgery websites are.

CCGs/Health Boards and individual GP surgeries may have statements about B12 treatment during the pandemic.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

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.

BNF Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

BNF Hydroxycobalamin

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

See section in above link for those with "neurological involvement" if you have neuro symptoms.

Your GP can find this info in their BNF book Chapter 9 Section 1.2

NICE CKS

cks.nice.org.uk/anaemia-b12...

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

If you feel your treatment was impacted by the pandemic...see links below and if you have time, read the comments under the articles.

PAS news items

pernicious-anaemia-society....

B12 Deficiency Info blog posts about pandemic

b12deficiency.info/covid-19/

b12deficiency.info/blog/

Do you have any neurological symptoms?

See links below.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

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.

If yes to neuro symptoms, has your GP got a list of all your symptoms, especially any neuro symptoms and symptoms affecting spinal area?

May be worth drawing GPs attention in any letter, to increased risk of permanent neurological damage including problems with spinal cord if a patient with b12 deficiency is untreated or under treated.

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....

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment in book is out of date. See BNF link in this reply for up to date info.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

I've written some very detailed replies with more B12 info eg causes of b12 deficiency, symptoms, more B12 books, more B12 articles, hints about how to cope with unhelpful GPs etc that you may find of interest.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

I may add more so check back later...

[Icomaria in reply to Sleepybunny]

Thank you, very useful information.