B12 injection

[Deborah1961]

Can anyone help me with some advice I've been having b12 injections every 3 month for the past 18 or so months at the time I had folic acid as that was low the doctors didn't want me put on b12 at the time cause my level was normal they said at 200 I saw another doctor and he did agree to let me go on them... I recently had blood tests and have to see the doctor tomorrow about the result as I feel tired and get tremors but ile heared they are stopping people having b12 altogether can anyone give me advice on what I can say if they try to stop them please

[Nackapan]

You are still having symptoms and they should be treated.

You don't normally have a blood test once on injections? So it may be high if a good gap not given.

Hope your appointment goes well. Horrible to have to stress about the possibility that they might try and stop them. If anything ask to trial 2 monthly ones bnf guidelines to see if your symptoms improve?

[Deborah1961 in reply to Nackapan]

Thank you for you reply I will say that to the doctors

[Jackiemary in reply to Deborah1961]

New BNF guidelines now suggest 2-3 months for regular injections rather than 3.

Best wishes, Jx

[deniseinmilden]

If you see this in time please see the advice offered by Sleepybunny in some of her replies.

You can access these by going to her profile by double clicking on her name and looking under the heading "replies".

I will add a link to her profile in a second.

[deniseinmilden in reply to deniseinmilden]

Sleepybunny

[deniseinmilden in reply to deniseinmilden]

Once you have injections your blood levels are always going to be high and therefore testing is pointless.

It is vital that you have injections to keep your symptoms at bay and most people need injections much more frequently than only once every 3 months.

There is a wealth of very good information and support available through this forum - welcome to the group!

If you don't get what you need at the Dr today, don't despair - there are other strategies and options available. The main thing is you stay positive and find the treatment your body needs.

Good luck!

[Deborah1961 in reply to deniseinmilden]

Thank you for your help

[Deborah1961 in reply to deniseinmilden]

Hi I've just been to the doctors and my folic acid is low so going on that for 4 months my B12 is high so he would not put me on more frequently but to be onest I'm relieved there not stopping my b12

[deniseinmilden in reply to Deborah1961]

Good to hear you've got your injections and the folate should make you feel better - both by making the B12 work and by curing the additional deficiency symptoms of that too.

Well done - good result! x

[Sleepybunny]

Hi,

"I've been having b12 injections every 3 month "

UK guidelines on treating B12 deficiency changed recently.

pernicious-anaemia-society....

UK treatment for those with B12 deficiency without neuro symptoms is

6 b12 loading jabs over 2 weeks followed by a jab every 2 or 3 months

UK treatment for those with B12 deficiency WITH neuro symptoms is

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

Do you have or did you have any neuro symptoms eg tingling, pins and needles, tremors, numbness, balance problems, memory problems, word finding difficulties, restless legs syndrome, tinnitus? There are many other neuro symptoms that B12 deficiency can lead to.

If yes to neuro symptoms then my understanding (I'm not medically trained) is that a patient with b12 deficiency with neuro symptoms should be on second pattern of treatment in UK.

B12 deficiency due to diet is sometimes treated with low dose B12 tablets but my understanding is that dietary B12 deficiency where neuro symptoms are present should be treated with injections.

If in UK, I suggest reading all the following documents

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...

Flowchart outlines when PA and Antibody Negative PA should be diagnosed in UK.

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

cks.nice.org.uk/anaemia-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). Book does not mention recent change in treatment guidance.

"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".

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Offers support and info about PA, Has members in other countries.

People do not need a confirmed diagnosis of PA to join PAS.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

There are currently 13 PAS support groups in UK. If you're UK based there may be one close to you. Can be a useful source of info about helpful GPs/specialists.

B12 Deficiency Info website

b12deficiency.info/

B12d.org holds support meetings near Durham, UK

b12d.org/event

B12 Awareness

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

May be relevant stories on these blogs.

Martyn Hooper's blog about PA

martynhooper.com/

Blog post about how PAS supports those seeking PA diagnosis.

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

B12 Deficiency Info blog

b12deficiency.info/blog/

Blog post about help if injections stopped

b12deficiency.info/blog/201...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates.

Point 1 in link is about being under treated for B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic with an in range B12 result.

Point 8 is about GPs wanting to stop injections and replace with oral tablets.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Do you have a PA diagnosis? In UK diagnostic test for PA is an Intrinsic factor Antibody test but this test is not always reliable. It is still possible to have PA even if IFA test result is negative( called Antibody Negative PA).

Has GP excluded diet as a possible cause? Do you eat plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy, foods fortified with B12?

Have you been tested for Coeliac disease?

UK guidelines suggests anyone with unexplained B12, folate or iron deficiency should be tested.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

In UK, two tests are recommended for Coeliac but GPs sometimes only order the first one.

1)tTG IgA

2) Total IgA

If you were tested for Coeliac did you have both tests? Were you told by GP to eat plenty of gluten in more than one meal a day for several weeks before blood tests? One reason for a negative result is patient was not eating enough gluten so not enough antibodies to gluten in blood to register a positive result.

Tested for H Pylori infection?

patient.info/digestive-heal...

Any chance of internal parasites eg fish tapeworm? Do you eat raw fish?

Any exposure to nitrous oxide?

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

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-...

"at the time I had folic acid as that was low the doctors didn't want me put on b12 at the time cause my level was normal"

Link above about folate deficiency mentions that any co-existing B12 deficiency should be treated at same time as folate deficiency. See Management section.

Iron Studies

labtestsonline.org.uk/tests...

Vital to get correct level of treatment for B12 deficiency or risk of permanent neuro damage.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....