Guidelines for B12

[Christmas1963]

Hi Guys I am sure it has been asked and replied to many times. But I am trying to get the Doctor to recognise my daughters B12 deficiency she is 17 years and her result is 239. She is suffering with terrible fatigue..so i am trying to find the BNF guidelines to quote them to the doctor re. possible treatment. Can anyone point me in the direction for these please

[clivealive Forum Support]

Hi Christmas1963 - hope this helps - especially the highlighted paragraph

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment

I wish you and your daughter well

[Christmas1963 in reply to clivealive]

Thank you Clive.....do you know if there is a section re. if B12 is low they will consider the neurological symptoms as well - and recommended treatment - as unfortunately 239 is still within Normal results....even though we know they are unreliable.

[clivealive Forum Support in reply to Christmas1963]

False normal B12 results and the risk of neurological damage

(U.K. N.E.Q.A.S Haematics.org.uk)

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

This is the American view.

On page 11 in the book "Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. under the heading "Types of tests for B12 Deficiency" talking about the Serum Vitamin B12 Test it says:-

"However, it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml). We believe that the "normal" B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml

At this time, we believe normal serum B12 levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml".

The book is well worth while the purchase as is Martyn Cooper's "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" both available via Amazon - and no, I'm not on commission

[Sleepybunny]

Hi,

This flowchart is in the BCSH Cobalamin and Folate Guidelines and covers the diagnosis and treatment of people who are symptomatic but within range.

stichtingb12tekort.nl/weten...

I'd suggest reading

1) the whole BCSH Cobalamin and Folate Guidelines if you are UK based.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" Think it's on page 3 or put "Cobalamin and Folate Guidelines"in search box

2) Pinned posts on this forum. I found the summary fbirder compiled very useful. Lots of quotes from b12 documents that I have used with GPs who haven't done their homework on B12. link to summary in third pinned post(last link in list)

3) BMJ B12 article

bmj.com/content/349/bmj.g5226

4) PAS

pernicious-anaemia-society....

5) B12 Deficiency info

b12deficiency.info/

6) b12d.org

b12d.org

7) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn hooper. Martyn is the chair of PAS.

8) Book "Could it be b12" by Sally Pacholok and JJ. Stuart

[Sleepybunny in reply to Sleepybunny]

I gave a copy of BCSH Cobalamin guidelines plus a copy of Martyn Hooper's book to my GPs. I also gave a copy of PAS symptoms Checklist to GPs with all my symptoms ticked and added extra symptoms that weren't on list.

B12 deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

[Sleepybunny in reply to Sleepybunny]

I am not a medic just a person who has spent years trying to get answers.

Blood Tests

Has your daughter had an IFA (Intrinsic Factor ntibody) test? this can help to diagnose PA (Pernicious Anaemia) but is not always reliable. It's possible to have PA with a negative result in IFA test. The BCSH Cobalamin and Folate Guidelines mention Antibody Negative PA. its possible to have this test done privately.

Some people have the following tests done Homocysteine, Active B12 and MMA. The results of these tests may be affected if a perosn is already taking B12 supplements.

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

Does she have recent results for B12, Folate , ferritin and a full blood count (FBC)?

I learnt from bitter experience to get copies of all my blood tests as in past was told everything was normal and then found abnormal results on the copies.

There can be useful clues on the FBC as to the possibility of iron deficiency, folate and B12 deficiency.

patient.info/doctor/macrocy...

patient.info/doctor/pernici...

labtestsonline.org.uk/under...

PA Family Link

Do any blood relatives have PA or other auto-immune conditions?

pernicious-anaemia-society....

Thyroid/Coeliac

Has she ever had thyroid tests or a test for Coeliac disease?

thyroiduk.org.uk/tuk/

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

Causes of B12 deficiency

b12deficiency.info/what-are...

[Christmas1963 in reply to Sleepybunny]

Thank you all for your replies - I have to send an email to my Surgery requesting an appointment from my daughter - would you say this was ok to send:-

I would like an appointment to see Doctors I currently have the symptoms of :-

Extreme Fatigue, Dizziness, Weakness, Depression, Tinnitus, Chest Tightness, Palpitations, Pale skin, lethargy and breathlessness.

My test results have revealed my B12 is in the Intermediate Range of 239 .

My RBC is just in range.

My Haematocrit is below range – which can show anemia.

My MCV is 91 and with my ferritin being very low at 36 could be making the MCV lower due to counteracting the megalobastic blood cells if I was B12 deficient.

I request an appointment to investigate further my neurological symptoms.

[Hidden in reply to Christmas1963]

She's taking iron supps, yes?

[Christmas1963 in reply to Sleepybunny]

Thank you