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Pernicious Anaemia Society
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Should I be getting more B12 injections?

I have just been diagnosed with B12 deficiency. My readings were B12 85 and Folate 3.4. GP stated Folate was ok. IF was negative. Have received 6 loading injections over 3 weeks. Not due another until JUne and then 3 monthly thereafter. Feet still burning and balance problems. Should I be getting more injections until symptoms improve?

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there are two regimes for treating B12 deficiency - the regime you have been given is the one appropriate where there is no neurological involvement. However you have neurological involvement - burning sensation and balance problems. The regime for this is loading shots every other day until symptoms stop improving, followed by maintenance doses every 2 months.

this is detailed in both the NICE guidelines and the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders which your GP can access through the BNF but can also be accessed here

onlinelibrary.wiley.com/doi...

suggest you write to your GP with the references and request that you are treated per the regime for neurological involvement.

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Hi Gambit62, thanks for the info. I am waiting to see the doc again as I had an abdominal scan last week. I will be speaking to her about what you have said above and see whether or not I can get more loading shots with maintenance shots every 2 mths instead of three. Thanks again.

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Hi,

"Should I be getting more injections until symptoms improve?"

In UK for b12 deficiency with neuro symptoms, following treatment is recommended....

A b12 loading jab every other day for as long as symptoms get better (could mean loading jabs for weeks even months) then a jab every 2 months.

UK GPs can find this info in

a) BNF (British National Formulary) Chapter 9 Section 1.2, probably a copy of BNF sitting on their desk or bookshelf. Possible to get own copy.

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

b) BSH Cobalamin and Folate Guidelines, treatment info about a quarter through guidelines

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

NICE CKS link below suggests GPs should seek advice from a haematologist for patients with b12 deficiency with neuro symptoms.

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

Has your GP written to a haematologist?

Have you been referred to a haematologist?

"Feet still burning and balance problems"

Neurologist

With neuro symptoms, have you been referred to a neurologist? It's important to exclude other possible causes of neuro symptoms.

I would warn you that lack of understanding of b12 deficiency can be found in specialist doctors as well as GPs, so worth doing some b12 homework in my opinion.

Link below about Writing Letters to Doctors about Under Treatment of B12 Deficiency with neuro symptoms

b12deficiency.info/b12-writ...

Neuro Consequences of B12 Deficiency

Is your GP aware of the possible neurological consequences of under treating B12 deficiency?

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society.... see Page 2 of articles

If you see a neurologist, might be worth getting them to check for proprioception problems which can occur in someone with b12 deficiency. Proprioception is awareness of the body in space.

two neuro tests for proprioception problems are

1) walking heel to toe with eyes closed

2) romberg test

Very important that these tests are only carried out by a doctor in a medical setting due to risk of accidents from loss of balance.

There are other possible tests for proprioception problems. My experience was that neurologists do not always do full range of tests for proprioception.

" IF was negative"

What does GP think has caused your B12 deficiency?

Is GP aware that it is possible to have a negative/normal range result in IFA (Intrinsic Factor Antibody) test and to still have PA (Pernicious Anaemia)...this is called Antibody Negative Pernicious Anaemia.

More info on Antibody Negative PA in flowchart and BSH Cobalamin and Folate Guidelines links below. Antibody Negative PA is also mentioned in Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency".

Has diet been excluded as a possible cause?

Do you eat plenty of B12 rich food eg meat, fish, shellfish, dairy, eggs, foods fortified with b12? If yes, then diet as a cause is less likely and it is more likely that there is an absorption problem eg PA, Coeliac disease plus other possible causes.

Coeliac Disease

NICE guidelines below suggest testing anyone with unexplained B12 or folate or iron deficiencies for Coeliac disease.

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood tests

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

H Pylori infection tests?

patient.info/health/dyspeps...

H Pylori infection can lead to b12 deficiency due to causing gastritis (inflammation of the stomach).

Recent Surgery?

Have you had any recent surgery involving use of nitrous oxide as part of anaesthesia?

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

I am not medically trained.

More B12 info that may be of interest

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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/

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...

BMJ B12 article

bmj.com/content/349/bmj.g5226

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 UK b12 guidelines.

"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.

PAS (Pernicious Anaemia Society)

If you suspect PA or Antibody Negative PA, may be worth joining and talking to PAS.

Based in Wales, UK. Lots of useful info on website.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

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-...

"GP stated Folate was ok"

What is the reference range for folate in your area? 3.4 seems quite low to me.

clivealive will probably tell you about folate at some point.

Most important thing I learned.....

was to always get copies of all my blood tests. I learnt to do this after being told everything was normal and then finding abnormal and borderline results on copies.

Access to Medical Records (England)

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

nhs.uk/chq/pages/1309.aspx?...

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Hi Sleepybunny, thanks for the info, gosh what a lot to digest!!

I am waiting to see the doctor once the results of my abdomen scan, which I had last week, come back and will definitely mention that I think I should be getting more loading shots until there is no further sign of improvement then maintenance shots every 8 weeks instead of 12 weeks. Don't know if it will do any good though, you know what the NHS is like.

In answer to your question, no I have not been referred to any specialists. I only managed to get an ultrasound scan of my upper abdomen because I insisted. The B12 loading shots and the scan is the only treatment I have received. My GP wasn't concerned about the folic acid reading being 3.4 and said it was normal. I have since purchased some folic acid tabs to try and see if they make a difference.

GP doesn't know what caused the B12 deficiency and said it could be dietary. However, I do eat red meat, shellfish, dairy and green veg so I am not so sure. My late Aunt had B12 deficiency. My sister was diagnosed with PA in 2002 and has been quite poorly for the last couple of years. Her youngest daughter who is now 21 has also just been diagnosed with B12 deficiency too. I'm thinking it might be hereditary.

I have not had any recent surgery so that rules out nitrous oxide in the anaesthesia. I don't even have injections when I go to the dentist.

GP stated Folate was ok but I don't know what the reference range for folate in my area is. I have asked numerous times for a copy of my blood test results pre B12 loading shots and every time I go to pick them up from reception they say that it is in progress. I always ask how long does it take to print them off from the computer and I am told that the doc has to give her permission. I live in Scotland but there can't be much of a difference in the way the NHS practises between England and Scotland. Anyway, as I said, I am due to see her soon about my scan results so I can ask for them again then. I will also be armed with all the info you have so kindly given me.

I am now going to read up on the links you have given me.

Once again, many thanks.

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Hi again,

"will definitely mention that I think I should be getting more loading shots until there is no further sign of improvement then maintenance shots every 8 weeks "

My personal opinion is that it might be better to put info for GP into letters addressed to GP as my feeling is that these are less likely to be ignored or forgotten than something said in appt. My understanding is that in UK, letters to GPs are filed with a patient's medical records so are a record of issues raised. I used to include a request in letters to file a copy.

See letter writing links in my post above.

Word of warning..

Some GPs may find it hard to cope with assertive patients so there is a possibility that GP/patient relationship will be affected.

If you choose to discuss getting neurological treatment regime during an appt then may be worth GP looking in their copy of BNF, in Chapter 9 Section 1.2

BNF concentrates more on PA and macrocytic anaemias whereas I believe you do not have a diagnosis of PA.

Might be worth having a copy of BSH Cobalamin and Folate Guidelines. This document makes it clearer that neurological treatment regime applies to any cause of b12 deficiency with neuro symptoms, not just PA. Treatment info is about a quarter through BSH Cobalamin guidelines.

"IF was negative"

"sister was diagnosed with PA"

PA can run in families.

You have a blood relative with PA. Might be worth mentioning family history of PA in any letter you write or discussion you have, along with info about Antibody Negative PA.

In my mind , family history of PA/B12 deficiency plus symptoms of B12 deficiency plus existence of Antibody Negative PA mean that PA or Antibody Negative PA should be on GP's list of possibilities.

Does GP know that Antibody Negative PA is possible?

If not already a PAS member, it may be worth you (or another family member) joining and talking to PAS before tackling your GP. Membership costs about £20 for a year.

pernicious-anaemia-society....

PAS can sometimes intervene on behalf of members by writing letters and at very least they can pass on useful info about PA, Antibody Negative PA, PA in families etc. There are stories on Martyn Hooper's blog about how PAS has supported members.

"I have asked numerous times for a copy of my blood test results pre B12 loading shots and every time I go to pick them up from reception they say that it is in progress"

Have you put your request in writing? This may get a better response as harder to ignore or forget about. See link below about accessing health records in Scotland.

To my mind this does not seem right..how long have you been waiting for a copy of results? I think a week's wait is reasonable. Has GP practice manager explained why there is a delay? I think you should be able to make an appt to view your records with practice manager.

Links that may be of help in getting copies of results

Accessing Health Records in Scotland

nhsinform.scot/care-support...

CAB Scotland NHS Complaints

citizensadvice.org.uk/scotl...

Local MP may be able to help if you are still unable to access records.

Scottish Petition about B12 deficiency

parliament.scot/GettingInvo...

Support groups in Scotland

Sadly I'm not sure there are any active B12 support groups in Scotland any more. Hopefully I'm wrong. There was a Kilmarnock Thyroid and B12 group that posted meetings on Thyroid UK forum.

Info for doctors

PAS website has a section for health professionals and they can join PAS for free as associate members. See link below.

pernicious-anaemia-society....

I gave my GPs the following

1) A copy of "What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

2) A copy of BSH Cobalamin and Folate Guidelines

3) Copy of PAS Symptoms checklist with all my symptoms ticked

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Thank you, looks like I have a busy time ahead!!. Will post again when things hopefully begin to happen.

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Hi celialockyer re your Folate level which is "bumping along" at the bottom of the range,

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well.

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Thanks for the info clivealive. Think I need to speak to my GP again. Had an abdominal scan last week and waiting for the results. I have purchased some folic acid tabs to take in the meantime. Don't know if they are doing any good though.

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I doubt they will do you any harm. Folate can also be sourced naturally by eating leafy green vegetables, sprouts, broccoli, asparagus, spinach, peas, beans etc. Nowadays many breakfast cereals are being fortified with folic acid.

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Have started eating more green leafy veg, so much so that I think I am beginning to look a bit like a rabbit with all the nose twitching..lol..

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:)

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