Or should I wait incase any more b12 blood tests are needed?
I want to get some energy back asap and I don't currently supplement as I was waiting until after all bloods before I start.
I am hoping I've had enough blood tests to give a good picture now?
IFab- awaiting results
Serum B12 186 (187-883)
Holo-T 35.1 (>34 normal)
Folate 5.9 (2.7-15)
Vit D 28 (50-120)
Ferritin 43 (23-300)
I have sublingual and patches ready to try. I'm also working on my vit D.
Many thanks 😁
I do not think any more are needed.Your serum b12 level is done.
I can't think of anything else as thus stage.
Others may
Go by symptoms.
However you need to treat low b12 before taking folic acid anyhow.
Have you not been offered b12 injections?
Oral forms will work if low dietary intake the cause.
If an absorption issue may not be able to absorb enough to raise levels to eliminate symptoms.
High doses trued before injections can work in the minority going by posts .
Symptoms dictate treatment
.
Vitamin d with fatty food or can be bought in an oil capsule help absorption.
Go by your vit d level on how much to take.
Or oral sprays with k2 ?
Thanks for your reply. I haven't been offered injections, GP was happy with my results as b12 is 'borderline'. He just suggested increase in diet but I eat eggs and red meat already! I pushed for the intrinsic factor test but expecting he won't offer injections unless that result is positive 🤷
Everyone operates at different b12 levels. Most of us never get a 'baseline'
Of what our serum b12 is when well.
It also drops so slowly and symptoms overlap with so many other things.
If the 'other things' are ruled out surly your b12 is relevant.
It tool me to collapse abd be unable to walk for the Gp to do loads of blood tests including b12.
I'd been 3 consecutive times after 7 years of absence.
I knew I was ill.
No tests
No b12
Just tge annual cholesterol test i had asked for.
You'd think alarm bells.
Part of this condition is you can't think straight for yourself !!
I often think why oh why did they not do one ever before.
My diet the same.
Had kept me well
Obviously hormonal changes ( a known risk factor hindered absorbancy from tge same diet)
In fact I did myself no favours by eating less meat as told to reduce fats fir cholesterol.
Also trying to 'treati ' early b12 deficiency symptoms
Not knowing what was wrong.
If caught early enough perhaps for a small minority high dose oral b12 will work???
As the diagnostic tests so confusing and not definitive.
But left undiagnosed and then severe symptoms they must inject b12 to bring the levels up quickly to try abd save further damage .
Then so many abruptly reduce or stop treatment????
You know your body.
Get things ruled out.
Try and seoerate symptoms.
Difficult
I never had an IFA test.
Was put on injections as assumed PA in the end.
Now after 3 years treatment under threat??
I've my own .
Not thr point as far as GP goes.
I was not going without through covid .
Loads if people's were stopped.
Mine wernt .
I hope you can get a treatment plan transparent on your medical record.
Obviously the main thing is felling better.
T c
Hi,
Some links about B12 deficiency and PA that you may find helpful....
You may need a week or so to sift through this as there's a lot of information and some links may have details that could be upsetting.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed
b12deficiency.info/what-to-...
If PA is suspected or diagnosed, worth joining and talking to PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Testing for PA
pernicious-anaemia-society....
PAS website has lots of useful articles. Some PAS members print them out and pass them to GPs.
pernicious-anaemia-society....
PAS website has a page for health professionals that your GP may find useful.
pernicious-anaemia-society....
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
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.
Best piece of advice I ever got was to ...
always get copies of all my blood test results.
I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.
Accessing Health Records (England)
patients-association.org.uk...
Some people access test results and medical records with NHS app.
nhs.uk/nhs-app/nhs-app-help...
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.
UK B12 documents
NHS article about B12 deficiency (simply written, lacks detail in my opinion)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines (main points from 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 Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE (National Institute for Health and Care Excellence) guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published next year.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
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 hydroxocobalamin link in this reply.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
Misconceptions
Please be aware that PA and B12 deficiency are not always as well understood by health professionals as they should be and you may meet doctors, specialists, nurses etc who have misconceptions (wrong ideas) about PA and B12 deficiency.
I suggest you have a look at the links below which list some of the common misconceptions that health professionals may have.
B12 article from Mayo Clinic in US (detailed, aimed at researchers and health professionals)
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
BNF treatment guidance has changed since above blog post was written.
Diagnosis and Treatment Pitfalls
(From B12 Institute Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Films and videos about PA and B12 deficiency
PAS conferences
pernicious-anaemia-society....
Films about B12 deficiency
I am not medically trained.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
It looks as though they have covered most everything. The only other tests I would request, knowing what I know now, would be a homocysteine and methylmelonic acid test. These should me done prior to supplementing. Good luck to you.
Hi,
"I haven't been offered injections, GP was happy with my results as b12 is 'borderline'."
Do you have symptoms that are consistent with B12 deficiency?
See links below.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (B12 Institute Netherlands)
If yes to B12 deficiency symptoms then UK guidelines indicate you should be treated even if serum (total) B12 is within normal range.
Summary from BSH Cobalamin and Folate Guidelines has this statement
(may be worth showing it to GP and including it as a quote in any letter you write to GP)
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed in order to avoid neurological impairment"
NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency includes the statement
" Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12. "
cks.nice.org.uk/topics/anae...
I suspect your GP has some wrong ideas about B12 deficiency.
See Misconceptions links in my other reply.
See Point 1 and Point 5 in the letter writing link in my other reply.
Have you got any neuro symptoms?
If yes, have you been referred to
1) a neurologist?
2) a haematologist?
Link that outlines when patients with B12 deficiency should be referred to a haematologist or gastro enterologist.
cks.nice.org.uk/topics/anae...
3) a gastro enterologist if gut symptoms present?
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....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
If treatment for B12 deficiency is denied, delayed or inadequate there can be an increased risk of permanent neurological damage including damage to spinal cord.
If GP is reluctant to treat you and you have symptoms consistent with B12 deficiency, may be worth mentioning SACD to GP. I'm not medically trained and I am not saying you have this but I am saying that GP (and any specialists you see) should be aware that SACD is a potential consequence of B12 deficiency.
It may make them pay more attention to you.
Really desperate to start feelin better
Advice moving forward?
How quickly does b12 change?
B12 injections
Confused again, do I stop B12 injections ? 
