B12 deficiency follow up.: Last week I... - Pernicious Anaemi...

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B12 deficiency follow up.

MissKota profile image
14 Replies

Last week I posted about a letter I received from my GP practice telling me I was ‘borderline’ deficient (my level was 121)

Anyway, today I finally got to speak with the GP who wrote the letter. She told me that earlier this year, the guidelines changed. People with a reading <115ng/L will still get the quarterly injections. Those >115ng/L but <150ng/L will be monitored with blood tests every six months and advice about diet and medication.

As I had questioned the letter - and my last injection was in February - I am having my blood test next week.

Thanks to Nackapan (I think it was) I knew to ask about intrinsic factor which threw her a bit. Apparently they don’t normally check for that but, again because I asked, they are going to do that too next week. So, watch this space ...

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MissKota
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fbirder profile image
fbirder

Ask her whose guidelines they were. Because it was not any national body. Nor any body of experts. Indeed, I suggest it was a panel of accountants.

MissKota profile image
MissKota in reply tofbirder

Probably Dominic Cummings. He seems to make all the rules now. 😤

fbirder profile image
fbirder in reply toMissKota

You could always demand a series of B12 injections to test your eyesight.

MissKota profile image
MissKota in reply tofbirder

You can only get that in Barnard Castle unfortunately 😂😂

Nackapan profile image
Nackapan

Good. I'd like to know whether 'those guidelines ' are from ??

I bet it threw her lol. Keep going.

Go by your symptoms and keep quoting them.

Remember 50% of those with PA test positive. A good time to have the test though. If negative it doesnt rule out PA.

Sleepybunny profile image
Sleepybunny

Hi,

I assume the b12 result of 121 ng/L was from 2019.

You mentioned multiple neurological symptoms last year in the first thread you wrote on this forum.

It seems pretty irresponsible for your B12 injections to be stopped when you have neuro symptoms.

Symptoms Diary

Have you been keeping a symptoms diary that tracks changes in symptoms over time and when and if any treatment is received.

This could be useful evidence to show GP.

Have you noticed a deterioration in symptoms since your last injection in Feb?

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

May be worth talking to MP/devolved representatives if struggling to get recommended levels of treatment.

Might be worth sticking a copy of BNF info under GPs nose.

BNF

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

Have left a short reply on your other recent thread.

Suggest you have another read of the replies I left on your thread from last year.

MissKota profile image
MissKota in reply toSleepybunny

Yes, the 121 was from last year. When I suggested a blood test previously to check if the loading doses had made any difference, I was told, by the same GP, that it was pointless doing a blood test once you’ve had the loading doses as it can stay in you blood for a long period.

Seems she’s changed her mind.

Sleepybunny profile image
Sleepybunny in reply toMissKota

Hi,

If you haven't already done so, you could think about putting your concerns about treatment in to a letter to GP.

In UK, my understanding is that letters to GP are supposed to be filed with medical notes so less likely to be ignored in my opinion.

Keep copies of any letters written and any replies received. It can be useful to have a paper trail in case you need to make a formal complaint in future. Useful if you can prove you raised any relevant issues.

You could draw GPs attention to the possibility of permanent neurological damage including damage to spinal cord (SACD) if you are untreated or under treated in any letters.

You mentioned neurological symptoms last year so that should be a warning sign to GP to be careful with your treatment.

Do you have any symptoms affecting any part of your back/spine eg

numbness,

tingling,

sensations of water dripping,

electric shock sensations,

insect crawling sensations

back ache?

Do you have any balance issues eg

bumping into things

falls/tripping over

problems with your gait ( strange way of walking)?

Any symptoms suggestive of proprioception problems?

Proprioception sense is a person's awareness of body in space.

A person with proprioception problems may have balance issues when

it's dark

eyes are closed

view of surroundings is blocked

I used to fall off the pavement when someone walked directly towards me because my view was blocked.

Clumsiness can sometimes be a sign of proprioception issues. I used to misjudge where things were when I reached for things...with smashed crockery as a result.

Has a neurologist ever tested your propriocepetion sense?

I would expect them to do at least some neurological tests where your eyes are closed eg

1) romberg test

2) walking heel to toe with eyes closed

Vital that these tests are only carried out by a doctor at medical premises as someone with proprioception issues could fall/lose balance.

Videos of proprioception tests on Youtube.

Search online for " proprioception B12 deficiency" if you want to know more.

I suggest you give GP a list of every symptom you have (or had last year) especially every neuro symptom. Include any that you have noticed returning since treatment changed and any new neuro symptoms that have appeared.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society....

"I knew to ask about intrinsic factor which threw her a bit."

As they are going to test Intrinsic Factor Antibody test, might be worth joining PAS if not already a member as PAS can pass on useful info and offer support.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

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.

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.

UK B12 documents

Suggest you read next document thoroughly if you haven't already.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

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

"People with a reading <115ng/L will still get the quarterly injections. Those >115ng/L but <150ng/L will be monitored with blood tests every six months and advice about diet and medication."

I suspect your GP is being constrained in what treatment they can offer due to local area guidelines.

If you haven't already I suggest you track down a copy of the local guidelines for treatment of B12 deficiency in your part of UK and compare them with BSH guidelines, BNF info and NICE CKS info.

NICE CKS

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

Make sure you get copies/access to any blood test results.

As treatment has been impacted by pandemic, you could check that your GP surgery is using the most up to date advice from BSH for use during pandemic.

SeePAS news item below about BSH pandemic advice.

pernicious-anaemia-society....

Have a look at the 99 comments left under the article if you have time.

Your GP surgery should be willing to provide you with a copy of the treatment guidelines they are using or at least tell you how to access them.

If they are reluctant you could use a FOI request (Freedom of Information) which I think would need to go to practice manager.

Being an assertive patient can affect patient/GP relationship so be prepared for relationship to turn sour and have an alternative GP surgery in mind if possible.

"Those >115ng/L but <150ng/L will be monitored with blood tests every six months and advice about diet and medication."

Being these days an "awkward" patient, in a similar situation I would point out that this sentence assumes that the deficiency is due to diet or medication and does not consider the possibility of absorption problems in gut.

I would ask my GP what happens to the people with undiagnosed PA, Coeliac disease, H pylori infection, fish tapeworm infection etc who have results between 115ng and 150 ng/L?

Six months with untreated PA etc could be enough time for spinal damage (SACD) to occur.

I'd probably stick a diet sheet with a typical weekly diet showing I eat a b12 rich diet under GP's nose. I'd also write a letter to GP which included the diet and a statement from me saying the deficiency was not diet related.

Apologies as I probably asked in the past but have you been tested for Coeliac disease?

UK NICE guidelines Coeliac disease suggest anyone with unexplained B12, folate or iron deficiency should be tested.

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

If GP tests you for Coeliac

1) check both these test are done

TTG IgA test

Total IgA test

2) has GP asked you to eat plenty of gluten in more than one meal per day for several weeks before blood tested.

3) if you have symptoms suggestive of Coeliac disease but test results are negative, have you been referred to a gastro enterologist?

I am not medically trained.

MissKota profile image
MissKota

Thank you.

MLM666 profile image
MLM666

Your levels of b12 can be normal or high even with the nhs b12 Test. This is because it measures total b12 not active b12. You’d need a private blood test for active b12 from a company like Medichecks but I’m betting you would be much more deficient that your existing blood test reveals.

Gambit62 profile image
Gambit62Administrator in reply toMLM666

both serum and active B12 just measure the amount of B12 in the blood. Active B12 is generally 1/5 of total serum B12. Whilst it may be a more accurate test (serum B12 is only accurate to about 20%) I wouldn't waste my money on getting a private test done for active B12.

Both serum B12 and active B12 are useful for showing if there are any downward trends over time (which would be indicative of an absorption problem). People tend to maintain levels of serum B12 and active B12 at a point in the normal ranges which are appropriate for them using stores in the liver but this stops functioning if you have an absorption problem with the results that levels start dropping. This makes both quite difficult tests to interpret from a single point result.

MissKota - you really need to push back on where the 'new standards' are coming from - they aren't in accordance with any national standards in the UK that I am aware of. There have been some rather confusing and inaccurate statements during COVID-19 which have been far from helpful, assuming you are in the UK. US doesn't have any national standards and things can be extremely it and miss.

This is a link to the latest BCSH standards regarding treatment during the pandemic

b-s-h.org.uk/media/18275/bs...

Dragonwalker profile image
Dragonwalker

When I was first tested I had a level

of 170. I had loads of symptoms and felt dreadful. Could hardly stand up.

MissKota profile image
MissKota in reply toDragonwalker

Did they give you the injections or tablets?

Dragonwalker profile image
Dragonwalker in reply toMissKota

They gave me injections straight away. It took a week or two before I really started to feel better.

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