Update on doctors appointment

[Soulsister]

Hi all, as promised an update on my visit to my doctors surgery this morning. Very successful I am happy to report. My B12 injections have been reinstated with apologies for them being stopped without a follow up. She also said that they would appreciated proper guidelines as the current ones are not specific enough and as the tests are inconclusive it can be difficult to ascertain if someone just needs a boost or if injections are needed for life and the frequency needed. So there can be light at the end of the tunnel. My wish now is for others with this problem, obtain a satisfactory outcome. Thank you all for your support.

[Sleepybunny]

Hi,

Glad to hear you have had injections reinstated. Has your GP seen these 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...

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 website has a section for health professionals. I believe PAS has access to a GP who knows about PA so your UK GP may be able to talk to this GP.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

More B12 info in pinned posts on forum, I have written other more detailed replies which may have useful info. Just put Sleepybunny in search box.

I am not medically trained.

[Soulsister in reply to Sleepybunny]

Hi Sleepybunny, do you mind if I copy your response with all the links. The doctor I saw is the lead on B12 but obviously not the only doctor at the clinic I attend. Not sure which documents she has seen but appears to be open to any information available. She did understand that the tests available are not very good and that it is important to listen to the patient as well as looking at results. Whether the other doctors are is questionable as it was another doctor that stopped my injections and went off in a different direction, too long a story for here. If you have no objection to me copying the links I will send them to the practise manager for him to pass along for their monthly meetings. This in turn could help others as the doctor I saw was at least open to information. Problem is an appointment is 12 minutes long and she was already running late, so there is a lot of pressure. Thank you for your kind response.

[Sleepybunny in reply to Soulsister]

Hi again,

Some more info for you.

Health professionals can join PAS for free as associate members. Perhaps your GP would be interested?

pernicious-anaemia-society....

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

What does GP think is causing your B12 deficiency?

Have they excluded possibility of diet causing B12 deficiency? If you eat plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy, B12 fortified foods then diet as a cause becomes less likely and the possibility of an absorption problem affecting gut increases.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you been tested for PA (Pernicious Anaemia)?

In UK, this would be an Intrinsic Factor Antibody test. It is still possible to have PA even if IFA test result is negative or normal range. See BSH guidelines for info about Antibody Negative PA.

For H pylori infection?

patient.info/health/dyspeps...

For Coeliac disease?

Coeliac Disease can lead to B12 deficiency due to effect on gut.

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that second test, Total IgA test is not always done in UK. Total IgA test shows which patients have IgA deficiency. Patients who are IgA deficient cannot make the antibodies that tTG IgA test checks for, even if they have Coeliac disease and will need other diagnostic tests for Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

For internal parasites eg fish tapeworm?

One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil results can be found on Full Blood Count results.

Any surgery involving nitrous oxide as part of anaesthesia/pain relief?

Nitrous Oxide can inactivate B12 in body. Nitrous oxide is one of the gases in " Gas and Air" mix , sometimes used as pain relief in labour.

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-...

Best piece of advice I ever got was to always get copies of all my blood test results.

Access to Medical Records (England)

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

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

Process may vary in other parts of UK.

I am very pleased that you have a GP who listened.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Lots of useful B12 info in link above.

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/

Following info may be of interest as it shows that untreated or under treated B12 deficiency can lead to severe neurological deterioration.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, avialble 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...

NICE CKS link recommends that GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.

Do you have any neuro symptoms eg tingling, pins and needles, tremors, tinnitus, memory problems, balance issues plus others?

A word of warning....B12 deficiency is not always as well understood as it could be even among specialists, so I suggest being well prepared for any specialist appointments.

My B12 injections have been reinstated

How often are you getting B12 injections? See BNF, BSH, NICE CKS links.

Recommended UK B12 treatment for B12 deficiency without neuro symptoms...

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

Recommended UK B12 treatment for B12 deficiency WITH neuro symptoms...

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

How many loading doses did you get when originally diagnosed?

Link about Letters to GP about Under treatment of B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

More Help for GPs

PAS has a leaflet "An Update for Medical Professionals: Diagnosis and Treatment " available to PAS members.

pernicious-anaemia-society.... See Page 1 of articles.

Also leaflet "Treatment is for life" on page 1 of articles.

Although PAS articles/leaflets are aimed at people with PA, some of info will be applicable to people with other causes of b12 deficiency.

I am not medically trained.