Not getting very far with Doc intrinsic factor

[may61]

Spoke to doc this morning about all the symptoms I have been having over past 8 months Won’t check my intrinsic factor Cos he says it’s only done when the b12 comes back low .Ha. He says that 2 monthly jabs are only for those with pernicious anaemia .But I read out all the symptoms and when I had them,and said there is something else going on here,Told him about my daughter who had v dry mouth could barely swallow in her 20’s and it was suggested it mite be sjogrens Me my son and daughter my brother a cousin and others all have low b12 So he got a copy of my symptoms see where he goes with it

[Nackapan]

Has your doctor given another reason for your symptoms? Get a copy of your blood results.

What was your 'normal level'

Have you had folate iron b12 ect tested?

Are you a PA member to get advice?

Does your doctor know about

'Functional 12

Have you tried oral b12

[may61 in reply to Nackapan]

I’m just starting to push him again on all these things I had bloods done last summer which showed folate etc ok but had been taking folic acid Cos unbeknown to me we had a gas leak for several months which cause symptoms like dizziness nausea.The trouble is he knows very little bout b12,but I was adamant this time told him all my symptoms and when I had them and emailed a copy to him See where he goes with this

Luckily I have a very good sub lingual ,when I feel like I have been kicked in back of head ,Two or three of these do the trick ,which surely is the point.

[Nackapan in reply to may61]

Its good if a b12 sublingual works for you. Why not continue regularly with those and add how you go.

[Sleepybunny]

Hi,

Apologies if I've given you the info below in the past.

Hopefully some of it will be helpful to you or your relatives with B12 deficiency

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....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Misconceptions about B12 deficiency

Sadly some doctors have misconceptions about B12 deficiency. See links below.

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.

Misconceptions about a B12 deficiency

(from Dutch B12 website so units and ref ranges may vary from those in UK)

stichtingb12tekort.nl/engli...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

Link has letter templates about various situations to do with B12 deficiency.

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.

When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.

I included a request in letters that a copy of letter was filed with medical notes.

My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.

Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.

Letters could contain some of the following relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists but try to keep them short.

Keep copies of any letters sent or received.

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...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

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

They are not currently taking on new cases and I have read mixed reports about them.

hdapatientcaretrust.com/

Local MPs/devolved representatives may be worth talking to if struggling to get appropriate treatment.

members.parliament.uk/

Pandemic

If you feel your treatment or that of your family members has been affected by impact of pandemic then see links below.

B12 Deficiency Info blog posts about pandemic

b12deficiency.info/covid-19/

b12deficiency.info/blog/

PAS news items about pandemic

pernicious-anaemia-society....

One of the PAS news items is about contacting NHSE about treatment concerns during pandemic.

pernicious-anaemia-society....

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Above document has useful diagnostic flowcharts.

Summary of above document

pernicious-anaemia-society....

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 Hydroxycobalamin

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

If you have neurological symptoms, see section for patients with "neurological involvement".

GP can find this info in their BNF book in Chapter 9 Section 1.2

NICE CKS

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

Local Guidelines

Each CCG/Health Board/NHS Hospital Trust will have its own local guidelines on treatment and diagnosis of B12 deficiency. I recommend you (and your relatives with B12 deficiency) get hold of the local guidelines for their area of UK and compare them with BSH, BNF and NICE CKS links above.

Some local UK guidelines are not helpful. See blog post below.

b12deficiency.info/blog/202...

I have put a few of the UK local guidelines on this forum.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

PA and coeliac disease are both auto immune conditions that can lead to b12 deficiency.

Have you been tested for coeliac disease?

NICE guidelines Coeliac Disease

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

If you think PA is a possibility then worth joining and talking to PAS who can offer support and pass on useful info.

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 but sadly some GPs may not be aware that it is possible to have Antibody Negative PA.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

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 above book is out of date. See BNF link in this reply for up to date treatment 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.

I sometimes add more to a reply so check back later.

I am not medically trained.

I've written some very detailed replies with more B12 info eg causes of b12 deficiency, symptoms, more B12 books, more B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...