Test

[Goldcreast]

Hi I have a private appointment with a neurologist due to neuropathy symptoms hands & feet also get very painful cramp just above my ankles. My B12 is 142 also looking at going private to a haematologist. Can I have some advice as to what test I should be insisting on. My dad had pernicious anemia and my daughter had also been diagnosed with PA

[Sleepybunny]

Hi,

I've assumed you're in UK. Some info may not apply if you're elsewhere.

B12 blood tests

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

If you have been already supplementing with B12 this may affect the results of some of the blood tests mentioned in above links.

"My dad had pernicious anemia and my daughter had also been diagnosed with PA "

Having a blood relative with PA is a risk factor for developing PA.

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Symptoms of B12 deficiency

pernicious-anaemia-society.... I ticked all my symptoms on PAS checklist and gave my GPs a copy.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

UK b12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin Guidelines

stichtingb12tekort.nl/weten...

Flowchart above outlines when PA and Antibody Negative PA can be diagnosed. It is made clear in flowchart that people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start initial b12 treatment.

BMJ B12 Article

bmj.com/content/349/bmj.g5226

Make sure you are well-read about B12 deficiency before seeing a haematologist. Even some haematologists can have misconceptions about B12 deficiency. I'd suggest reading BSH Cobalamin and Folate Guidelines before appt if you're in UK and also fbirder 's summary of b12 documents. Link to summary in third pinned post.

"My B12 is 142"

Have you had any B12 treatment?

UK B12 treatment info

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

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

UK B12 Treatment info is also in BSH Cobalamin and Folate Guidelines, about a quarter through document.

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin 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 book about B12 deficiency with lots of case studies.

B12 blogs

martynhooper.com/

There is also an interesting blog on B12 deficiency Info website.

b12deficiency.info/

I am not medically trained.

[Dewbuc]

I would make sure you receive B12 injections every other day asap. With such a low B12, very strong family history and neurological symptoms delaying treatment in order to get definitive proof is a dangerous waste of time.

[ITYFIALMCTT]

You've had good advice above so I've nothing to add. Is this haematologist one who has been recommended to you or are you concerned that s/he won't order appropriate testing for some reason?