B12 tablets

[Blackradish]

Been to doctor today won't give me injections at 10 weeks I asked if there's any tablets I could take and she gave me a prescription is it ok to start taking these as well as injection

[Lilian15]

If you are in uk The British National Formulary now says can inject 10 - 12 weeks. It is not yet in the printed one but is in the online one. Will be printed when next print is done. Direct your gp to that.

[Gambit62 Administrator]

what is the strength of the tablets - you can certainly take them - but if you have PA unless they are extremely high does (1000mcg+) they are unlikely to have much of an impact on your symptoms

As Lilian15 says below - the BNF does now say 10-12 weeks for injections where there isn't neurological involvement so may be worth pointing this out to GP

[fbirder]

As the doc to look at the latest version of the BNF. Recommendations for hydroxocobalamin have changed recently - from every three months to every two - three months.

So your doc should have no problems with 8 weeks between injections, let alone 10.

[Sleepybunny]

Hi,

Link below to BNF info that includes recent change.

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

PAS news item that mentions recent BNF change.

pernicious-anaemia-society....

"Been to doctor today won't give me injections at 10 weeks"

Did GP explain why they won't give them every 10 weeks?

Do you have any neurological symptoms eg tingling, tinnitus, pins and needles, numbness, limb weakness, tremors, memory problems, brainfog, balance problems, restless legs syndrome etc...there are many more possible neuro symptoms.

I've just read an older thread of yours that mentions burning sensations and tingling...these would usually be considered as neurological symptoms.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

If yes to neuro symptoms then my understanding is that UK patients with B12 deficiency with neuro symptoms should have jabs every 2 months. See UK b12 documents.

It's vital to get right level of treatment as there is the potential for permanent neurological damage if under treated.

How many loading jabs did you have at start of treatment?

Was it 6 over 2 weeks or a jab every other day for a period of weeks even months.

Recommended UK treatment for B12 deficiency without neuro symptoms is...

6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months

Recommended UK treatment for B12 deficiency WITH neuro symptoms is...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

If neuro symptoms present at start of treatment, my understanding is that loading jabs should have been every other day for as long as improvement continued, weeks even months possibly.

Patients who do not get enough loading doses at start may struggle for a long time.

If neuro symptoms have developed after loading finished and other potential causes of them have been excluded then may be worth asking GP if loading jabs can be repeated.

Is your GP aware of the potential consequences of under treatment?

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

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

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

Link above suggests GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.

Have you seen a haematologist or has GP contacted a haematologist?

Be warned though that ignorance about B12 deficiency can be found in specialists, even some haematologists.

Have you seen a neurologist? If not, have you requested a referral?

If you have gut symptoms, have you seen a gastro enterologist? Gastro specialist will hopefully will spot gut damage due to PA, Coeliac, H Pylori and other causes.

"she gave me a prescription"

What strength are these B12 tablets?

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

The link above has lots of letter templates for writing to GP if not being treated adequately for B12 deficiency. Lots of useful B12 info so I think worth reading.

My understanding is that in UK, letters to GP are filed with a patient's medical notes so are a record of issues raised and I think letters are less likely to be ignored than a verbal request.

If a polite verbal request for injections more often didn't work, might be worth trying a letter. Letters could contain symptoms, test results, personal and family medical history, extracts from B12 documents/articles; any evidence that supports the request.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment. They use a network of doctors in UK.

hdapatientcaretrust.com/

Causes of B12 deficiency

Do you know why you are B12 deficient?

Do you have a PA diagnosis?

There are many other possible causes of B12 deficiency besides PA eg diet, Coeliac, H Pylori infection, internal parasites eg fish tapeworm.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Diet

Do you eat plenty of B12 rich food eg meat, fish, shellfish, dairy, eggs and foods fortified with B12? Being vegan or vegetarian can be a risk factor for b12 deficiency. GPs in UK sometimes treat dietary B12 deficiency with low dose cyanocobalamin tablets.

If yes to B12 rich diet then diet as a cause of b12 deficiency becomes less likely and it becomes more likely that there is an absorption problem in gut eg PA, Coeliac, H Pylori and other conditions.

PA (Pernicious Anaemia)

Were you ever tested for PA? In UK, this would usually be an Intrinsic Factor Antibody test (IFA). IFA test is not always reliable and it's still possible to have PA even if IFA result is negative (called Antibody Negative PA). See Link to BSH Cobalamin and Folate Guidelines and flowchart for more info about Antibody Negative PA.

Other countries sometimes use a Parietal Cell Antibody test (PCA).

See section on what test result means in next two links.

labtestsonline.org/tests/in...

labtestsonline.org/tests/pa...

If you have a PA diagnosis or suspect PA is a possibility, worth joining and talking to PAS (Pernicious Anaemia Society).

Coeliac disease

UK guidelines suggest that anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac.

Two tests are recommended in UK. UK GPs sometimes forget to do second test so if you've been tested for Coeliac and told results were negative, worth checking both tests were done.

1) tTG IgA

2) Total IgA

tTG IgA checks for an antibody to gluten.

Total IgA checks for which patients have IgA deficiency.

Patients with IgA deficiency will have negative results in tTG IgA test even if they have Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Coeliac disease can present purely with neurological symptoms and no gut symptoms.

coeliac.org.uk/coeliac-dise...

H Pylori infection

patient.info/digestive-heal...

Fish tapeworm

Do you ever eat raw fish eg in sushi?

One potential sign of fish tapeworm infection is a rise in levels of eosinophils, a type or white blood cell. Eosinophil results can be found on results for Full Blood Count (FBC), known as Complete Blood Count in US.

Exposure to Nitrous Oxide?

gov.uk/drug-safety-update/n...

LInk about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

PAS (Pernicious Anaemia Society)

Based in Wales, UK. has members in other countries.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

You do not have to have a confirmed diagnosis of PA to be a PAS member . It can take some people many years to get a diagnosis.

PAS support groups in UK

pernicious-anaemia-society....

Currently 13 PAS support groups in UK so may be one close to you if in UK and PAS like to hear from people who want to set up a new PAS support group.

PAS blog post about how PAS can support those seeking PA diagnosis

martynhooper.com/2017/06/24...

B12 Deficiency Info website

b12deficiency.info/

B12d.org holds support meetings near Durham.

b12d.org/event

UK B12 Blogs

May be stories on blogs that are relevant to your situation.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Local Guidelines

Some parts of UK have local area guidelines on how to treat B12 deficiency. Some of these local guidelines have not been updated for years and they may not fully reflect what is in national guidelines on B12 deficiency.

May be worth tracking down local/regional guidelines and comparing them with national guidelines. Outdated local guidelines may explain why your GP seems reluctant to give injections more often.

Finding UK local guidelines

1) Internet search

2) Search on local NHS website

3) Freedom of Information (FOI) request to local NHS website

4) Ask practice manager for copy of local guidelines that GP practice is using, may irritate GP practice though

5) Local MP may be able to help .

parliament.uk/mps-lords-and...

MPs may also be interested to hear from anyone who cannot get recommended treatment from doctors.

Your GP won't give you more injections but she has prescribed B12 in tablet form so I am assuming GP accepts you need more B12.

I wonder if it is a cost issue...although the B12 is cheap, nurses time to give the injection isn't.

Hang onto your part of the prescription as proof that you were prescribed extra B12.

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Help for GPs

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

pernicious-anaemia-society....

I am not medically trained. More B12 info in pinned posts on this forum.