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B12 deficient but negative PA test

BlueTurtles profile image
9 Replies

Hi,

I would like some advice.

I have just finished loading Jabs for b12 deficiency and I have been told I will receive no more injections. My red blood cells were enlarged however my PA test was negative.

I had neurological symptoms, walking into things, dropping things, memory loss and confusion. I also had physical symtoms of fatigue, muscle soreness, basically a zombie. The loading injections have made a massive improvement on my symptoms.

GP has said its my diet however I eat meat and dairy ?!? Do I need a second opinion?

Thanks

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9 Replies
fbirder profile image
fbirder

You need a different doctor. Or you need to educate this one.

Print this out - it's by the biggest brains in British blood - onlinelibrary.wiley.com/doi...

Highlight the bits on page 501 and 502 about AbNegPa - like this bit.

Patients negative for IFAB, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-IFAB-negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response

Send the printout to your doctor with a letter explaining that you want to be treated properly as "treatment should not be delayed to avoid neurological impairment." (summary Point 4).

BlueTurtles profile image
BlueTurtles in reply tofbirder

Thank you so much! I will do this and hope that they finally listen x

deniseinmilden profile image
deniseinmilden

If you really can't get anywhere with them you can always self inject. It's a lot easier than it sounds and it's great to get your life back!

For more information on getting more jabs from Drs and SI it would be good to see replies by Foggyme, Sleepybunny and Wedgwood.

I'll add links to them after this and you can go to their profile by double clicking on their names and look under the heading "replies".

deniseinmilden profile image
deniseinmilden in reply todeniseinmilden

Foggyme

deniseinmilden profile image
deniseinmilden in reply todeniseinmilden

Sleepybunny

deniseinmilden profile image
deniseinmilden in reply todeniseinmilden

wedgewood

BlueTurtles profile image
BlueTurtles in reply todeniseinmilden

Thank You , I am considering SI. If seems like the only way to have a good quality of life x

deniseinmilden profile image
deniseinmilden in reply toBlueTurtles

I completely agree.

There are a few people who do OK on the NHS system but so many for whom it is just not enough.

Before I tried it I thought SI must be terrible but actually it's fine and now I have to do it when I get up or I wouldn't remember whether I'd done my jab or not!

Sleepybunny profile image
Sleepybunny

Hi

"GP has said its my diet however I eat meat and dairy ?!? Do I need a second opinion? "

Short answer

Yes

Slightly longer answer

If GP thinks it is due to diet, I suggest writing out a typical weekly diet therefore proving you eat plenty of B12 and folate rich foods and enclosing it with a letter outlining concerns about diagnosis/treatment

Much longer answer

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Tests for PA (Pernicious Anaemia)

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.

For Coeliac?

Guidelines suggest testing anyone with unexplained b12, folate or iron deficiency and first degree relatives of people with Coeliac

NICE guidelines Coeliac Disease (UK document)

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

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

If you were tested previously for Coeliac, did GP do both recommended tests below?

1) tTG IgA which tests for an antibody to gluten

2) Total IgA which checks which patients have IgA deficiency

People who are IgA deficient will need alternative tests for Coeliac.

Did GP tell you to eat plenty of gluten in more than one meal per day for several weeks before blood taken?

One reason for a negative result in Coeliac test is that patient was not eating enough gluten and therefore not enough antibodies to gluten were in the blood to register a positive result.

H pylori infection?

patient.info/digestive-heal...

Any chance of internal parasites eg fish tapeworm?

Do you ever eat raw fish eg sushi/smoked salmon?

One potential sign of fish tapeworm infection is a rise in eosinophil levels. Eosinophils are a type of white blood cell WBC and result for eosinophils can be found on Full Blood Count FBC results

Any exposure to nitrous oxide?

gov.uk/drug-safety-update/n...

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

b12deficiency.info/what-to-...

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...

Is there a family history of PA or other auto immune conditions?

If you think PA is a possibility then worth joining and ringing PAS who can suggest info to pass on to GP.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

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

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

If in UK, I recommend reading documents below.

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...

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...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

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".

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

Neuro Symptoms

"I had neurological symptoms, walking into things, dropping things, memory loss and confusion"

Has GP got a list of every neurological symptom you have got eg tingling, pins and needles, migraine, tinnitus, restless legs syndrome, muscle twitches, word finding problems, insect crawling sensation (formication), problems with proprioception ( awareness of body in space) plus others.

I hope your GP is aware of the potentially severe consequences of under treatment. Untreated or under treated B12 deficiency can lead to permanent neurological problems including spinal damage.

If neuro symptoms present, is GP aware that treatment for patients with B12 deficiency with neuro symptoms is more intensive?

GP can find info on UK recommended treatment in their BNF book, Chapter 9 Section 1.2

BNF info is also online. See BNF link up page.

UK recommended treatment for adults with B12 deficiency without neuro symptoms is...

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

UK recommended treatment for adults with 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

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

Might be worth passing this on to them.

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

With neuro symptoms present, have you been referred to

1) a neurologist?

2) a haematologist?

NICE CKS link (up page) indicates that GPs should seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. Has your GP done this if in UK?

Other referrals

If gut symptoms present, have you been referred to a gastro enterologist?

Gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H Pylori plus other possibilities.

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.

Point 5 is about being symptomatic with an in range B12 result.

Lots of useful b12 info, worth a thorough read. Link has letter templates people can base own letters on.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/h...

Some UK GP surgeries have online access to a summary of results/records. Details will be on your GP surgery website.

Warnings....

1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.

2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.

nhs.uk/common-health-questi...

3) It can be helpful to take a supportive person with you to appointments that might be challenging. It's my opinion that GPs are sometimes kinder if a witness is present.

Help for GPs

May be worth drawing Gps attention to

1) PAS website has section for health professionals. It is free for them to join PAS as associate members.

pernicious-anaemia-society....

2) PAS website has section with useful leaflets/articles which PAS members can print out for GPs eg "An Update for Medical Professionals: Diagnosis and Treatment "

pernicious-anaemia-society....

3) May be possible if PAS member for GP to talk to PAS. Would need to discuss with PAS first.

"The loading injections have made a massive improvement on my symptoms."

Are you keeping a symptom diary that tracks fluctuations in symptoms over time with treatment?

This may at some point provide useful evidence that the B12 treatment really does make a difference.

"I have been told I will receive no more injections"

Have you asked the GP directly (but politely) why they have stopped your injections?

Knowing the reason why something has been done can make it easier to challenge the decision.

1) Some GPs will stop B12 jabs if B12 levels go above range

If this is the reason, you could show them relevant passage in BSH guidelines that suggests testing of B12 levels after treatment has started isn't necessary.

Also these articles below

Testing B12 during treatment

stichtingb12tekort.nl/weten...

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

stichtingb12tekort.nl/weten...

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

2) Some GPs are using local guidelines on treatment for B12 deficiency that are years out of date.

Suggest you track down local guidelines for your part of UK and compare them with national guidelines eg BSh, BNF, NICE CKS

I am not medically trained. More B12 info in pinned posts on forum.

Check back later as I'll add more if I think of anything.

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