Help with diagnosis : Hi. Long story... - Pernicious Anaemi...

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Help with diagnosis

MrsShoe profile image
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Hi. Long story short, I have serum b12 within 'normal' UK range but increasing neurological symptoms. My mum has PA. I take oral b Complex daily and have done for years, and have just been told this will skew all blood test results relating to B12 (MMA, homocysteine etc).

GP has agreed to refer me to a neurologist. But is there any way for the neurologist to confirm it's b12 deficiency (given that they are not a B12 specialist)? Taking more blood tests is obviously pointless.

Getting new symptoms daily and I am v anxious to get treatment.

Hope you can help.

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MrsShoe
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fbirder profile image
fbirder

The oral supplements will only skew the blood tests if you do not have PA.

If you do have PA then you will not absorb the oral B12 and your levels will be unaffected.

If you can absorb the oral B12 then it will raise your B12 levels - which is what they're supposed to do.

The neurologist should be able to get a very good idea as to what causes your neurological problems. The local neurologist I saw knew enough to say that B12d or diabetes were highly unlikely to be the cause of my problems, so he referred me to a London specialist at the Hospital for Neurology and Neurosurgery.

He was excellent. He took a full history, loads of blood tests, lots of prodding, some hopping (which almost resulted in me crushing two students as I lost balance), nerve conduction studies and electromyography.

He wasn't at all fussed when I told him I was self-injecting once a week and had to explain to one student that high B12 cannot cause neuropathy - but B6 can.

I was there for a couple of hours. At the end of which he declared that I had Idiopathic Axonal Neuropathy which is, he said, very common in tall men in their late 50s. "Wow!" I said. "I'm very tall and I'm 59".

He explained what would happen to me and arranged an appointment for 9 months later. Everything he predicted about the progression was correct. He did another examination with more nerve conduction tests, found little change and told me that he didn't think we needed to see each other again. My problem will never go away and will deteriorate very slowly. It's been three years since then and he's right.

I would hope that, if the tests show that a B12d is a possible cause, (s)he will recommend that your GP start you on a course of B12 injections, as recommended by the BNF, and they wait six months to see if there's any improvement. If there is then you stay on the jabs for life.

MrsShoe profile image
MrsShoe in reply tofbirder

Many thanks. That's really useful.

Sleepybunny profile image
Sleepybunny

Hi,

Have you considered joining and talking to PAS (Pernicious Anaemia Society)?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

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.

Both these tests can be unreliable.

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.

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

b12deficiency.info/what-to-...

UK guidelines indicate that people who are symptomatic for B12 deficiency should be treated even if serum B12 is within range.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

Perhaps you should stick a copy of above article under GPs nose.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

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

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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

Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.

Neurological Consequences of B12 Deficiency

It's vital to get adequate treatment if you have B12 deficiency ( from whatever cause). There is a risk of permanent neurological damage if B12 deficiency is untreated or under treated.

PAS news item

pernicious-anaemia-society....

B12 article from Mayo Clinic

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

Suggests

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable

3) Successful treatment should not be stopped

I wrote a very detailed reply on another forum thread with lots of links to b12 websites, b12 books, UK B12 documents and other b12 info.

healthunlocked.com/pasoc/po...

I'm sure you'll find something useful in it.

I've written many other long replies on the forum which may be worth searching for.

"I have serum b12 within 'normal' UK range"

I had years of multiple typical symptoms of b12 deficiency with many neurological problems , had many misdiagnoses eg ME/CFS, Fibromyalgia , Hypochondria and years of deterioration.

All except one of my serum B12 results was well within range, most were between 300 - 500 ng/L.

GPs and specialists I saw would not consider B12 deficiency as a possibility even though I asked them to try B12 and pointed out I had typical symptoms and some blood results that were suggestive of B12 deficiency.

I resorted to treating myself when I had exhausted all chances of NHS B12 treatment but for me this was an absolute last resort when I realised I was headed for dementia and spinal damage if I didn't get treatment.

These days I have a life I can enjoy but suspect I have some permanent damage due to length of time ( many years) without diagnosis or treatment.

I am not medically trained.

MrsShoe profile image
MrsShoe in reply toSleepybunny

Thank you so much for taking the time to reply, and sharing all these useful resources.

MissPinBG profile image
MissPinBG

I have low B12 but after testing negative for PA one doctor passed it off as a dietary issue (I personally don’t think I shouldn’t be lacking in B12 based on my diet!), another doctor referred me to a neurologist but my appointment isn’t until December! They did give me a 2 week loading dose of injections but switched me to tablets and I’m not feeling much better! So I’m pretty much in a permanent state of anxiety, which I’m pretty sure makes my symptoms worse! So you’re not alone MrsShoe ☝️

MrsShoe profile image
MrsShoe in reply toMissPinBG

Oh thank you. My anxiety is the worst it's ever been!

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