B12 blood rests worthless after PA diagnosis

[emzalee22]

Hi everyone,

So yesterday I found out from another group that getting blood tests to check b12 levels were worthless after PA has been diagnosed due to false readings etc. I'm just wondering if you have any websites or articles that mention that?

Thanks

Emma

[clivealive Forum Support]

Hi emzalee22 I don't understand what you mean by "after PA has been diagnosed due to false readings etc".

It is true that any serum B12 test taken (once treatment for P.A. by injections has started) is pretty well next to useless - unless the result comes back very low.

[emzalee22 in reply to clivealive]

Hi clivealive

All I meant with that is once Pernicious Anaemia has been diagnosed and your start receiving injections, are blood tests worthless due to false readings of normal /high levels of b12.

Only asking cause I'm in a battle to get my injections (which I've had since September 2012) from 3 months to 2 months but it all depends on a blood test being done in December.

[clivealive Forum Support in reply to emzalee22]

How long will it be between your injection and the test in December?

Anyway, whatever the result if you have neurological symptoms you should be having your injections every eight weeks according to the N.I.C.E. guidelines if you are in the UK.

Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

The relevant section reads:

"For people with neurological involvement:

Seek urgent specialist advice from a haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months."

[emzalee22 in reply to clivealive]

I just had my most recent 3 month injection at the beginning of the week, by the time I do the test in December my next injection will be a week away.

Thank you for the information provided, I will definitely look at it as I am gaining a heap of research to hopefully persuade my doctor to changing them. And I will also be attempting to stick to a symptoms diary as well

[Sleepybunny]

Hi,

I'm assuming you're in UK.

I'd suggest reading the BSH Cobalamin and Folate Guidelines, which I think mention that testing b12 levels is irrelevant once B12 supplementation has started.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

These guidelines outline recommended UK B12 treatment, about a quarter through document.

"I'm in a battle to get my injections (which I've had since September 2012) from 3 months to 2 months "

UK B12 treatment is also outlined in BNF British National Formulary Chapter 9 Section 1.2

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

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

Standard B12 treatment is 6 jabs over 2 weeks followed by jabs every 3 months

B12 treatment for those with neuro symptoms is a jab every other day for as long as symptoms continue to get better then a jab every 2 months.

Do you have any neuro symptoms? See lists of B12 Deficiency Symptoms below.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Link about writing letters to GPs about B12 deficiency.

b12deficiency.info/b12-writ...

Point 1 in link above is about under-treatment of B12 deficiency with neuro symptoms.

Some people on forum have shown PAS article about SACD (sub acute combined degeneration of spinal cord) to their doctors as an example of the possible consequences of undertreatment of B12 deficiency. SACD article is available to PAS members.

pernicious-anaemia-society.... see Symptoms section

PAS news item about neurological consequences of PA.

pernicious-anaemia-society....

Are you a member of PAS (Pernicious Anaemia Society)?

pernicious-anaemia-society....

PAS tel no [phone]

PAS can offer support and information. In some cases they can intervene on behalf of PAS members.

There may be stories relevant to you on Martyn Hooper's blog about PA and B12 issues.

martynhooper.com/

Also an interesting blog on "B12 deficiency Info" website.

b12deficiency.info/

B12 books I found useful

"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.

I am not medically trained just someone who has struggled to get a diagnosis.

[JMN2017]

It does appear that many people with B12 def/PA actually need even more frequent injections that 2-monthly. It's a very induvidual thing and depends on symptoms etc. However, you'd be hardpressed to get a doctor to agree to give them more frequently.

B12 is not dangerous, one can't overdose on it as, being water soluble, any excess is flushed out via the kidneys but the doctors don't seem to understand this bit

Good luck and happy reading of the research/links you've now got. It's all very valuable and reliable information from the above posters

[emzalee22]

Hi Sleepybunny

I am actually living in Queensland, Australia.

Thank you for providing those links, I have been unable to find any information based on Australian standard but the 3 months still applies, so any information from other countries that can be used is much appreciated.

I do have neuro symptoms, including; numbness, tingling and pain, confusion / disorientation, weakness of legs, arms, trunk, difficulty walking (only after 2 month mark), Dizziness, restless legs, forgetfulness, memory loss, personality changes, sleep disturbances and sometimes insomnia,fatigue and breathlessness.

But when I explained it to my doctor she just wrote them down and did nothing.

[Sleepybunny in reply to emzalee22]

Hi,

There is a PAS support group in Perth, Australia

pernicious-anaemia-society....

I'm sure there are other Australian members on forum. You could always put up a thread asking for Australian members to respond?

I know there are several members from New Zealand on forum. I'm mentioning this because I found out that there is a Haematology Society of Australia and New Zealand....

hsanz.org.au/

and I thought forum members from both countries might know about relevant b12 guidelines.

I think Deuto is from NZ. You could search for Deuto's posts.