What to ask for next? Referral? What ... - Pernicious Anaemi...

Pernicious Anaemia Society
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What to ask for next? Referral? What specialism?

HowCome
HowCome

Hi, please can anyone suggest?

Saw GP for recent flurry of tests.

I am hypothyroid, on levothyroxine since 2000, ‘controlled’ (i.e. T4 in range.)

Just requested antibodies, could only get TPO tested on nhs. TPO ab present. (GP would not say more than ‘your thyroid condition is an autoimmune condition’.)

Had bvits,vitD, ferritin etc tested also.

B12 low, so called in rapidly for loading dose of 6x vitB12 injections.

Plus 2nd blood test for ‘transglutsminase’ and parietal cell autoantibodies.

Today GP seemed confused by lab notes about test result televance. It reads like they are not the right tests for confirming PA...

Will try and post photos (not working right niw)...

Is there a specialist who can help determine cause of the B12 deficiency? If its no diet, is it something that will gave other knock-ons? Injections feels like masking a problem... if I have one or maybe two autimmune cobditions, I don’t want to leave my immune system in alarm amd line myself up for a third...!

Many thanks.

5 Replies
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Ps Symptoms... main ones are frustrating depression & anxiety, tiredness... not myself.

Some recent feelings of dizziness.

Long-term frequent wobbly moments, like my blood sugar has dropped, need to eat quickly. Occurs late afternoon... can’t cook eve meal until i’ve eaten!!

Some altered nerve sensation, esp since a sciatica episode, 3years ago, thought it would repair slowly, but its never improved... outside of right foot numbness, and now it always feels cold. Both big toes numb on outsides.

Had carpal tunnel issues after i had my son (2010).

Sometimes discomfort under left ribs, around left side and into mid back.

Hoarseness, more effort to swallow.

No problems with stomach or bowel.

Gambit62
Gambit62Administrator

Best thing to do would be familiarise yourself with the BCSH guidelines on diagnosis and treatment of B12 deficiency which you can access here (assuming you are UK based)

onlinelibrary.wiley.com/doi...

your GP can access through the BNF

A negative on IFA is a long way from proving you don't have PA - it isn't a very sensitive test and gives false negatives 40-60% of the time.

It is a very specific test so rarely gives false positives - which is where it wins of gastric parietal cell antibodies.

Diagnosing PA as a specific cause is so difficult that the standards refer to 'IFA negative PA.'

There are a lot of other possibilities but to be honest PA is the most likely - but checking for h pylori/SIBO would be good directions as these are also common possibilities with hypothyroidism - though if you don't have any gut issues ...

Your bloods don't show any sign of macrocytic anaemia but this is just one symtpom/cause of one cluster of symptoms and isn't present in 25% of people presenting with B12 deficiency.

You have neurological symptoms - the protocol for treating these is more aggressive than for patients who don't exhibit neurological problems - loading doses 3x weekly until symptoms stop improving followed by maintenance doses every 2 months.

This is an article on thyrogastric syndrome that your GP might find useful/interesting

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

Very strong correlation between PA and hashi's

The c-reactive protein test probably could do with further investigation to narrow down what might be going on.

HowCome
HowCome
in reply to Gambit62

Thankyou, Gambit62, much appreciayed will read.

C-reactive protein result is marked as Satisfactory... one more thing to nag GP about. (And read up on!)

Gambit62
Gambit62Administrator
in reply to HowCome

the result is only just outside range so the difference may not be clinically significant for the vast majority of people which may be why it is marked as satisfactory despite being out of range.

HowCome
HowCome
in reply to Gambit62

Thankyou!

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