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Pernicious Anaemia Society
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Told no need fo further injections Advice on B12 supplements please

In Nov 18 I presented to my GP, anxiety, extreme tiredness, pins and needles in hands, extremely cold, ibs, headaches, brain fog. My blood tests revealed

B12 levels were 149 ng/l

Folate 2.7 ug/l

Vitamin D 43

My GP eventually agreed to a booster course of injections(5) the last one being on the 10th December and I was prescribed with 5mg folic daily til Jan. I have previously been tested for coeliac diseases but tested negative. I mentioned the instrinic factor test and was sent for this after the loading doses. This proved negative.

I have continuing symptoms and had a recent blood test on 23rd Jan 19 (some 6 weeks after the last loading dose) see above photo for results.

B12 levels were 511ng/l increased from previous test

Folate 6.6 ug/l increased from previous test

Vitamin D 39 Decreased from previous test

I have been prescribed Vitamin D tablets.

In relation to the B12 I have been told that as they cannot say whether it is a malabsorption (because of the neg result from instrinic factor) or diet related problem they will not continue with follow up injections and suggested I take a supermarket value range vitamin.

When I look at my B12 although it is now in range I would have expected it to be much higher as I had the loading doses. Do I need to pursue this further or do I assume I no longer have a B12 problem.

I was hoping to continue on the injections as I still have pins and needles in my hands and severe brain fog. The doctor as above has reaffirmed that I won't be receiving the B12 injections. What's the best B12 supplements I can get

Looking for advice many thabks

Many thanks

5 Replies
oldestnewest

A negative IF test doesn’t rule out PA . Your initial result of 149 was very low , pluss your nurological symptoms suggest an absorption problem . b12 tablets , sprays etc will not help you as you can’t absorb b12 therefore you need alternative day injections until no futher improvement as per nice guidelines . If your GP refuses to follow the guidelines you could write a letter of complaint to the practice manager .self injecting is what most have to do as many GP s don’t read the guidelines fully , you could print out the BNF guidelines and highlight the new treatment regime . Please don’t take oral supplements as they will skew results , although they shouldn’t retest after injections . Good luck GJOW

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Thank so much for taking the time to respond and for the advice what you says make sense. I think it is time to write a letter!

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Hi,

Some B12 info..if you're not in UK, some info may not apply.

In UK, patients with B12 deficiency WITH neuro symptoms are supposed to have following treatment...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

Loading jabs could continue for weeks even months if improvement continues.

See BNF, BSH and NICE CKS links below.

My understanding (I'm not a medic) is that pins and needles are a neuro symptom.

For UK patients with B12 deficiency without neuro symptoms, recommended treatment is

6 B12 loading jabs over 2 weeks then a jab every 2 -3 months. BNF used to say every 3 months but this has been changed recently.

pernicious-anaemia-society....

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...

Outlines when PA and Antibody Negative PA can be diagnosed in UK.

BMJ B12 article

bmj.com/content/349/bmj.g5226

BMJ article emphasises need to treat patients who are symptomatic for B12 deficiency even if B12 level is within range.

BNF

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

NICE CKS

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

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 is up to date with most UK b12 guidelines, does not mention recent change to BNF.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies. I cried when I read this book; it was like reading about myself.

"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".

Antibody Negative PA

Intrinsic factor Antibody test is not always reliable. It is still possible to have PA even if IFA result is negative. Your GP may not be aware that it is possible to have Antibody Negative PA. PAS should be able to pass on info about Antibody Negative PA. See flowchart link in UK documents list.

If you think PA or Antibody Negative PA is possible, probably worth joining and speaking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Offers support and info about PA.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Lots of useful B12 info in above link. I keep copies of any letters I write to GPs. I keep them brief and polite.

In UK, my understanding is that letters to GP are supposed to be filed with a patient's medical records. In my opinion, letters are less likely to be ignored than things said in a face to face appointment.

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/

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

"been tested for coeliac diseases but tested negative."

Coeliac disease (UK guidelines)

Did you have both recommended tests? UK GPs sometimes only do one test.

1) tTG IgA

2) Total IgA

tTG IgA test checks for a particular antibody to gluten.

Total IgA test checks which patients have IgA deficiency.

Patients with IgA deficiency cannot make the antibodies to gluten that tTG IgA test looks for, even if they have Coeliac disease so they have to have different tests for Coeliac disease.

It's possible that a negative test result in tTG IgA test is due to IgA deficiency. If GP only did tTG IgA test then I don't see how they can be confident you do not have Coeliac disease.

Did GP explain that you needed to eat plenty of gluten in more than one meal a day, for several weeks before Coeliac tests?

A negative result in tTG IgA test could also be due to not eating enough gluten over weeks prior to test. Eating plenty of gluten helps to ensure body produces a high enough level of antibodies for test to pick them up.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

Ever been tested for H Pylori?

patient.info/health/dyspeps...

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...

Link about writing letters to GP if under treated for B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

Blog post about help if B12 injections have been stopped.

b12deficiency.info/blog/201...

Local Guidelines

I suspect you are in a part of UK where the local guidelines for B12 deficiency have not been updated. Might be worth trying to get hold of local guidelines for your area and comparing them with national guidelines eg BNF, BSH Cobalamin and Folate guidelines, NICE CKS links above.

Track down local guidelines by...

1) Internet search

2) Search on local area NHS website

3) Ask practice manager for copy of B12 guidelines used by practice (this might irritate them).

4) Ask MP for help.

Local MPs may be interested in hearing from patients who are not getting recommended treatment.

parliament.uk/mps-lords-and...

GP/Patient relationship

Some UK GPs find it difficult to cope with assertive patients. Be prepared for GP/Patient relationship deteriorating. Pressure was put on me to leave one practice.

I also think if GP/patient relationship is awkward it is worth taking a supportive person to appointments (even better if they have read about B12 deficiency). It is my impression that GPs are sometimes kinder if a witness is present.

I am not medically trained.

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Thank so much for taking the time to respond and for the for the wealth of advice and reading material. This will help to educate me and my GP!! (hopefully) it seems that many are facing this uphill struggle regarding treatment for B12.

Reply

Just to let you know I've added a few more details to my original post on your thread.

There's more B12 info in pinned posts on this forum as well.

Best piece of advice I ever got was to always get copies of all my blood test results. I learnt to do this after being told everything was fine and then finding abnormal and borderline results when I got copies.

Some on forum get a complete set of medical records.

Help for GPs

1) PAS website has section for health professionals. They can join PAS for free.

pernicious-anaemia-society....

2) I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"

3) PAS website has useful articles such as "An Update for Medical Professionals: Diagnosis and Treatment " which some on forum have passed on to GPs.

Blog post about how PAS can support those seeking a PA diagnosis.

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

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