How likely is it I have PA

[Sparkleros]

Hello,

I would appreciate some feedback on your own experiences of diagnosis.

- 3 months ago I had a B12 level of <142 and a range of related symptoms

- Full Blood count did not show an abnormalities but I was also deficient in ferritin.

- I am 37 and have been diagnosed with hashimotos since I was 23. I take thyroxine.

- I was prescribed the 6 injections and then 1 a month for 3 months

- intrinsic factor came back negative

- Gastric Parietal Cell Antibodies came back positive on Friday but the notes on the results said ‘they are no longer recommended for the diagnosis of PA’ quotes from NICE guidelines 2015.

I’ve yet to see the Dr again as he requested I book a non urgent apt which will likely take a while!

Thanks for reading!

[Sparkleros]

To add - I am not vegan or vegetarian and eat a diet relatively high in B12 rich foods. I do however get full quite easily.

[Nackapan in reply to Sparkleros]

Always good to know the mrasure used and range. Usually in brackets on the right .

You didn't mention if you felt any benefit from the b12 injections.?

Not sure what part of the world you are in but monthly sounds like you are having cyanocobalamin .

It does sound like an absorbtion problem.

IFAB test only picks up about 50% of those with PA

Low ferritin gives its own symptoms .

Have you been prescribed iron ?

Is your vit D level okay.

I found vit d very low also ferritin.

Folate should've been tested too.

Thete is no gold standard test.

Go on symptoms and response to B12 .

[Sleepybunny]

Hi,

Your GP should know (but some don't) that a negative result in IFA test does not rule out PA.

See flowchart below.

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines (UK document) which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

Link about "What to do next" if B12 deficiency suspected or recently diagnosed.

b12deficiency.info/what-to-...

Have you thought about joining PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

Testing for PA

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about being under treated for B12 deficiency with neurological symptoms present.

Have a look at NICE CKS (Clinical Knowledge Summary) for B12 deficiency and Folate deficiency below.

cks.nice.org.uk/topics/anae...

If you have or had neurological symptoms, my understanding is that you should be on the pattern "For people with neurological involvement" outlined in link below.

cks.nice.org.uk/topics/anae...

NICE are developing new B12 deficiency guidelines to be published in 2024.

nice.org.uk/guidance/indeve...

Coeliac disease

Guideline below says that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.

nice.org.uk/guidance/ng20

If you were tested in past and had a negative result then check guideline to see if GP followed recommended diagnostic process. Some don't.

More on Coeliac UK website

coeliac.org.uk/information-...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Wrong ideas about B12 deficiency

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

B12 article from Mayo Clinic in US

(Aimed at researchers and health professionals)

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

I'm not medically trained.

There's lots more info about PA and B12D in pinned post "Various PA/B12D resources".

[Sleepybunny in reply to Sleepybunny]

One thing I urge UK forum members to do is to track down the local B12 deficiency guidelines used by their ICB (Integrated Care Board) in England or Health Board in Wales/Scotland and compare them with NICE CKS B12 deficiency and Folate deficiency link in my other reply.

Also worth looking at ICB/Health Board guidelines for Anaemia/Macrocytic Anaemia.

Macrocytic anaemia can be associated with both B12 deficiency and Folate deficiency.

Red blood cells are larger than normal in macrocytic anaemia.

Some local B12 deficiency guidelines are not helpful. See blog post below.

b12info.com/gloucestershire...

[Mixteca]

As Nackapan says, we really need to see your test results to help you more. If ferritin's low you need a full iron panel to get a better clinical picture. Check folate and vit D levels and mention any neurological symptoms if you have any.

[Sparkleros in reply to Mixteca]

Thank you!

- neurological symptoms prior to injections were: tingling in left hand and tongue, unexplained anxiety and first experience of a panic attack, slowing of thought - unable to multi task like usual and substituting words.

- also had muscle weakness and pain in legs after little exercise.

- all have resolved apart from tingling in my tongue and some anxiety.

- ferritin levels were 15 (ref range 30-200) no full iron study done. Started taking 1 iron tablet a day although it’s intermittent because I don’t tolerate them well! I’ve always struggled to get ferritin above 30.

- folate level was 4.5 ug/L and is now 6 post injections. (Ref range 3 - 29.5)

- B12 was <148 (ref range 200-900) and is now 749 2 months post 6 injections.

Thanks for advice and all the links on above posts!

[Mixteca in reply to Sparkleros]

You're welcome. Absorption is likely the issue and iron tablets may not help much - best taken every other day with vit C for better absorption.

Your folate's too low and you need to raise that. I'd see an iron and B12 specialist as your GP won't have much of a clue.

Sounds like you need every other day injections asap with neurological issues. Feel free to message me for specialist's details.

SleepyBunny knows their stuff, so you have the links you need to at least educate and help yourself.