I was diagnosed as B12 deficient about 4 years ago,.
Went through the injections on alternate days and was then put on a 12 week injection cycle, things didn't change much, so was changed to a 10 week cycle..
But still not feeling great, Dr says it's pointless doing a blood test as my levels will be sky high due to the injections...
I'm also hypothyroid.
Struggling, with weight gain, brain fog and fatigue....
Help, please.
Hi,
If you're in UK and you have neurological symptoms, you should be on injections every 2 months (which is less than every 10 weeks).
How many loading doses did you have when treatment started?
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 time limit on how long the every other day jabs can go on for in a patient with neuro symptoms; as long as symptoms are improving every other day jabs should continue
If you didn't have the recommended number of loading doses at start of treatment, you may be able to persuade GP to give you another set of loading doses.
Neurological symptoms include....
tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, migraine, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space) etc?
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
BNF
bnf.nice.org.uk/drug/hydrox...
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no 01656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
B12 Deficiency Info website
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms present.
CAB NHS Complaints
citizensadvice.org.uk/healt...
Personally I would be wary about pushing to have B12 retested. If your B12 levels are high, GP may stop injections altogether.
Have you had your folate and ferritin (or other iron tests) checked recently?
Vitamin D levels as well?
I wrote a very detailed reply on another forum thread with links to lots of B12 info eg B12 websites, UK B12 documents, B12 books , B12 deficiency symptoms lists etc. See link below.
healthunlocked.com/pasoc/po...
Some on the forum report they need more B12 than the NHS gives them and have to resort to self treatment. This is a last resort in my personal opinion.
Are your thyroid issues being well looked after? Symptoms of thyroid disease and B12 deficiency overlap. I suggest also posting on Thyroid UK forum.
I am not medically trained.
Hi.
Thank you, lots to read and think about.
The b12 deficiency came up by chance, so wasn't asked about neuro symptoms...
I'm thinking I should just go for a full MOT, hopefully with a more sympathetic Dr in my practice. As I'm not convinced my thyroid issues are in a good place.
Hi again,
There can be lots of reasons why people become B12 deficient.
What did your GP think was causing your B12 deficiency when you were diagnosed?
You could access your medical records and see if a reason was recorded.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Were you asked about your diet?
If you eat a diet with lots of B12 rich food eg meat, fish, shellfish, dairy, eggs and foods fortified with B12 then diet as a cause is less likely and more likely that there is an absorption problem in the gut eg PA, Coeliac, H Pylori infection plus others.
Were you tested for PA (Pernicious Anaemia)?
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
Tested for Coeliac?
In UK there are two first line tests doctors order if they suspect Coeliac disease.
1)tTG IgA
2) Total IgA
If you were tested in past, did your GP
a) Order both these tests?
b) Tell you to eat plenty of gluten in more than one meal per day for several weeks before the blood was taken?
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
H Pylori infection?
patient.info/digestive-heal...
Exposure to nitrous oxide?
Nitrous oxide is in gas and air mix , used as pain relief in labour.
It is sometimes used as part of anaesthesia for operations.
gov.uk/drug-safety-update/n...
Internal parasites eg fish tapeworm?
Do you ever eat raw or uncooked fish eg sushi/smoked salmon etc?
There are other parasites associated with B12 deficiency in humans eg other tapeworms, Giardia Lamblia etc.
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.
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
"so wasn't asked about neuro symptoms... "
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Link about Peripheral Neuropathy
nhs.uk/conditions/periphera...
Does your GP have a list of all your symptoms especially any neurological symptoms?
It's vital to get adequate treatment or there is a risk of permanent neurological damage.
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...
If you have neuro symptoms, has GP referred you to
1) a neurologist?
2) a haematologist? See link below.
NICE CKS
cks.nice.org.uk/anaemia-b12...
If you have gut symptoms, have you been referred to a gastro enterologist?
More B12 websites
B12 Awareness (US website)
B12d.org holds support meetings near Durham, UK
Stichting B12 Tekort (Dutch website with English articles)
Have you had recent tests for your thyroid? The symptoms you mention could also be a sign that you need an increase in you thyroid hormones.
Recent retest B12 over 1,000
B12, Ferritin, Vit D won't go up
