Still tired during injections

[Lion3]

I’m B12 and iron deficient, I get my injections every three months, however I’m finding as I’m creeping up to the next injection, I’m becoming extremely weak and tired again, blurred vision, heavy head and increased tiredness. I also sometimes feel a bit breathless, is this normal or is there anything else I can do besides the injections that will boost my energy levels?

[fbirder]

Ask your doctor to switch to injections every two months.

In the past this might have been very difficult, but the dosing guidelines in the British National Formulary (BNF) have changed recently from ‘every three months’ to ‘every two to three months’. Ask the doc to check the online BNF and switch you to every 8 weeks.

[Sleepybunny]

Hi,

"I get my injections every three months"

Do you have any neurological symptoms eg

tingling, numbness, pins and needles, burning sensations, insect crawling sensation, electric shock sensations, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, periodic limb movements, limb weakness, vertigo, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, brain fog, proprioception problems (problems with awareness of body in space) etc?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...

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

2) UK recommended treatment pattern 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.

There is no set time limit on how long the every other day loading jabs can continue; could be weeks even months.

You say you get jabs every 3 months so you appear to have been put on the first treatment pattern. My understanding (I'm not medically trained) is that patients should be on second treatment pattern if they have neurological symptoms.

Both treatment patterns allow for maintenance jabs to be given every 2 months although your GP may not realise this as they could be using an out of date BNF book.

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

If in UK, I suggest you read 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 process for diagnosing PA and Antibody Negative PA in UK

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

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

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

Local Guidelines

Some parts of UK are using out of date local guidelines on treating B12 deficiency. Worth tracking down your local area guidelines and comparing them with national guidelines eg BNF, BSH and NICE CKS links.

Does your GP have a list of all your symptoms, especially any neurological ones?

In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy PN especially signs of sensory neuropathy so worth mentioning signs of PN.

Link about PN

nhs.uk/conditions/periphera...

Link about writing letter to GP if under treated for B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

I feel it is more effective to put queries about treatment in a brief as possible, polite letter to GP. Letters to GPs in UK are ,as far as I know , supposed to be filed with medical notes so harder for GP to ignore them.

Letters could contain symptoms list, test results, relevant personal and family medical history, extracts from UK B12 documents, any other supportive evidence.

Worth mentioning that GP can find treatment info in their BNF book Chapter 9 Section 1.2

although possible that some GPs may be using an out of date BNF book.

You could draw your GPs attention to consequences of under treatment if you feel you are not on recommended level of 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.... See Page 2 of articles.

Blog post from Martyn Hooper's blog, mentions SACD

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

Referrals

If neuro symptoms present, have you been referred to

1) a neurologist?

If you see a neurologist, ask them to check your proprioception sense. Two tests that help to do this are Romberg test and walking heel to toe with eyes closed. Problems with proprioception are associated with B12 deficiency.

Vital that these tests are only done by a doctor due to risk of loss of balance. If no tests are done with patient's eyes closed then unlikely that proprioception has been fully tested.

2) a haematologist?

NICE CKS link recommends that GPs seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. If GP won't refer you, they could at least contact a local haematologist by letter and ask for advice.

Don't expect better treatment from a specialist, ignorance about B12 deficiency sadly exists among specialists as well as GPs. I just hope you are lucky and get a specialist who knows about B12.

Do you have a PA diagnosis or do you suspect you have PA?

If yes then worth joining and talking to PAS (Pernicious Anaemia Society) who can suggest useful info to pass to GPs.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS support groups in UK

There are currently 15 support groups in UK so may be one close to you.

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

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

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

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 show updated BNF info.

"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".

I also plan to read

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD.

Do you know what your levels of iron, folate and Vitamin D are like?

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...

Vitamin D

patient.info/bones-joints-m...

I wrote a detailed reply on this thread on the forum which has other B12 info that you may find useful.

healthunlocked.com/pasoc/po...