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New to Pernicious Anaemia - what basic steps to take first?

JOG24 profile image
14 Replies

Hi folks - GP sent on bloods today - low B12, low ferritin, high cholesterol, low haemoglobin and hematocrit (as well as sky high prolactin - another story!)

So... I'm guessing that pretty much pernicious anaemia, right? Anything I should look into while I nudge the GP into action? I already take a high potency B Complex.

Oh - and I was diagnosed with ADHD this year.... now the brain fog seems to make sense though!

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JOG24 profile image
JOG24
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14 Replies
JOG24 profile image
JOG24

Attaching B12 test result

Blood Test B12
JOG24 profile image
JOG24

Attaching Ferritin Blood test result

Ferritin blood test result
JOG24 profile image
JOG24

Attaching full blood count showing other anaemia-related results

FBC
Nackapan profile image
Nackapan

Yrs your ferritin very low. Has the doctor started you on iron ?

Have you got a PA diagnosis?

If not begore treatment get a intrinsic factor antybody test.

Was your folate tested at the same timessxb12? ?

B12 shoukf be treated before folate.

You dont mention symptoms,?

Apart from brain fog.

Also vit D shoukd be tested.

Are you having a b12 rich diet?

Hope your trestment starts soon

JOG24 profile image
JOG24

Thanks Nackapan for the response. My symptoms are so varied - I was convinced I was in perimenopause for the past 4 years and was begging for HRT - exhaustion, brain fog, memory issues...but also weight gain, irritability, low mood, heavy periods, lack of sleep...

The ADHD meds got me sleeping and gave me my brain back - everything else is still there - cystic acne joined in for the fun 😟

Folate looks OK - just Ferritin and B12 are low - see attached

Folate
Gambit62 profile image
Gambit62Administrator

Just to clarify PA is an auto-immune disorder of the gut that attacks the mechanism that allows you to absorb B12 - it can also affect other vitamins and minerals, particularly iron and folate, absorption.You certainly seem to have results indicating both iron deficiency and B12 deficiency - which would suggest an absorption problem and PA is the most likely candidate but there are other possibilities, such as h pylori infection and SIBO.

JOG24 profile image
JOG24 in reply to Gambit62

I'm not sure the GP is interested in more testing - just treatment. However, I've had this issue all my life (being anaemic with low B12 and iron) - it just never got THIS low before. I did revert to a vegetarian diet a few years ago to try to reset my hormones (actually initially it was a vegan, gluten-free, low FODMAP diet 🙄) so maybe the lack of meat has accelerated the decline. I was using high strength transdermal B12 patches so a long time and I currently take a high potency B-complex vitamin but I can't seem to move the needle.

GP has faxed a prescription for injections to the pharmacy - pharmacy won't do the injection so I need to get back to him tomorrow to see if he'll do at least the first one...

Nackapan profile image
Nackapan in reply to JOG24

Try and get your intrinsic factor antibody blood test before your first injection. Not a definitive test but it's most accurate results it appears before treatment starts

A negative test fiescnot rule out PA but a positive one accurate fir axduagnisus if PA

Although yiur duet kackwdxsnt b22 on tge vegan regime yiu say it done time ago . Depends gir how long. Certainly yiu eoujd gave used stores if able foingbtgst time. Mat be a reason fir low ferritin. ??

Useful to know if dietary or an absorbtion problem for maintenence dosing after your loading doses .

Sone cope on 2-3 monthly maintenance b12 injections of Hydroxocobalamin or monthly of cyanocobalamin.

With PA or an absorbtion problem often more are needed. T c

helvella profile image
helvella

The combination of high cholesterol and sky high prolactin makes me think of hypothyroidism.

I suggest you consider posting in the Thyroid UK forum (as well as continuing here).

healthunlocked.com/thyroiduk

Hypothyroidism can also contribute to low iron.

deniseinmilden profile image
deniseinmilden in reply to helvella

Hi Helvella,

Please will you post your excellent "Micrograms, milligrams and grams" post and link on this forum too?

It is so useful to everyone.

Thank you!

Hedgeree profile image
Hedgeree

Hi JOG24,

I agree with Helvella.

On reading your post, you appear to be describing possible hypothyroidism symptoms.

I've learnt a lot from reading the posts here and on the thyroid forum whilst trying to get diagnosed myself.

Again you will get good advice on how to approach your gp.

JOG24 profile image
JOG24

Thanks folks - I need to have a brain MRI to rule out a pituitary tumour first.. In the meantime, I have B12 injections monthly, and I'll get some iron today. I'm also starting Dostinex to reduce the high prolactin for 4 weeks. If that can't regulate it, then it's off to an endocrinologist I think for Thyroid testing.

Chittychatty profile image
Chittychatty in reply to JOG24

Hi I was just going to jump on to say about sky high prolactin level is almost always due to a pituitary tumour.my daughter has had hers all her life and she’s 51 so none life threatening. Now I see you are referred for MRI. Wishing you good health.

Sleepybunny profile image
Sleepybunny

Hi,

Do you mind me asking which country you are in?

Patterns of treatment for B12 deficiency can vary between countries.

Some info in links below may be specific to UK.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

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

pernicious-anaemia-society....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Two useful B12 books

"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 does not show updated BNF info.

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

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Gastrin test may also be useful.

labtestsonline.org.uk/tests...

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 article from Mayo Clinic in US

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

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

Let me know if you're in UK. I can post links to UK B12 documents etc...

I am not medically trained.

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