hi i’m undiagnosed but i also have autoimmune thyroid disease
i did a private blood test to check my vitamins and my active b12 came back at 20 (26.5-165)
could this mean b12 deficiency ???
im going to ring my surgery next week
active b12 result??: hi i’m undiagnosed... - Pernicious Anaemi...
active b12 result??
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chloe12334455
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Gambit62Administrator
The result does indicate B12 deficiency, but the GP may want to retest just incase - but would be using serum B12. Make a list of your symptoms and push for injections if you have neurological symptoms - eg tingling in hands and feet
Hi,
Some links that may be of interest....I've copied this from another thread so some links may not be relevant to you.
You may want to take a few days to sift through the information and maybe get someone to read through it with you.
Some links I post may have details that could be upsetting.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
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.
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BNF treatment info in book is out of date. See BNF hydroxycobalamin link below.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
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.
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.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of above document
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BMJ B12 article
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...
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/anaemia-b12...
cks.nice.org.uk/topics/anae...
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of b12 deficiency. I suggest you try to track down the local guidelines for your area of UK and compare them with BSH, BNF and NICE CKS links. It's good to know what you are up against locally.
Some of these local guidelines have been posted on forum so may be worth searching forum posts for "local guidelines".
Hope you are not in the UK area mentioned in blog post below.
b12deficiency.info/blog/202...
More on Causes
If your GP is convinced it is a dietary issue, you could write out a typical weekly diet, food and drink, and discuss this with GP.
If you eat plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy, foods fortified with B12 then less likely to be a dietary deficiency and more likely to be an absorption problem in the gut.
Guidelines below suggests that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
Have you been tested for coeliac?
H Pylori infection?
patient.info/digestive-heal...
NICE guidelines H pylori
pathways.nice.org.uk/pathwa...
Click on blue boxes in flowchart for more info.
Any exposure to Nitrous Oxide?
gov.uk/drug-safety-update/n...
NICE guidelines Nitrous Oxide ( see side effects section)
bnf.nice.org.uk/drug/nitrou...
Any chance of internal parasites eg fish tapeworm infection?
Have you ever eaten raw or uncooked fish eg sushi, smoked salmon?
Have you ever lived or stayed in an area where internal parasites are common?
One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found on Full Blood Count results.
Search online for "internal parasites B12 deficiency" for more info.
Has your GP checked any medication you are on?
Some medications can affect B12 levels .
Some can affect folate levels.
Local pharmacist may also be helpful to talk to.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates that people can base own letters on.
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for b12 deficiency with an in range serum B12 result.
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.
Keep copies of any letters sent or received.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Currently they are not taking on new cases but this may change at some point.
Local MP/devolved representatives may be worth talking to if struggling to get treatment.
Retention of UK medical records
bma.org.uk/advice-and-suppo...
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.
Accessing Health Records (England)
nhs.uk/using-the-nhs/about-...
england.nhs.uk/contact-us/h...
patients-association.org.uk...
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.
Referrals
Does your GP have a complete list of all your symptoms especially any neuro symptoms?
See Symptoms Lists at top of this reply.
If you have neuro symptoms, have you been referred to ....
1) a neurologist?
2) a haematologist?
If you look at NICE CKS links it suggests that doctors should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.
If GP won't refer perhaps they could write a letter to local haematologist seeking treatment advice.
3) a gastro enterologist ( for gut symptoms)
Gastro specialist should be able to spot signs of gut damage from PA, Coeliac disease, H Pylori infection plus other gut conditions.
I've written some very detailed replies in the threads below which hopefully have B12 info you will find useful eg causes of B12 deficiency, books, articles, more UK B12 documents, B12 websites along with a few hints about managing unhelpful GPs.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
Thank you so much for these links. I have just watched a video about b12 misdiagnosis. Very interesting. Made me really think about my current condition. I'm having 12 week b12 injections and taking folic acid tablets daily, to no real change, even though my B12 levels appears normal.
"I have just watched a video about b12 misdiagnosis"
Film/video links
PAS conference 2019
pernicious-anaemia-society....
Films about B12 deficiency
More B12 books
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies. I cried when I read the cases as I could recognise myself in the descriptions.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Misdiagnosis of B12 deficiency as other conditions
b12deficiency.info/misdiagn...
Misconceptions about a B12 deficiency
(From Dutch B12 website - units/ref ranges/treatment patterns may vary from UK)
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.
Worth reading in case you meet a doctor with misconceptions about B12 deficiency.
TESTING B12 DURING TREATMENT
(PAS article)
pernicious-anaemia-society....
Testing B12 during treatment
(From Dutch B12 website - units/ref ranges/treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Treatment concerns during COVID-19? Let NHSE know
(PAS news item)
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