Birmingham Consultants ... & vit B12 ... - Pernicious Anaemi...

Pernicious Anaemia Society

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Birmingham Consultants ... & vit B12 injections; any pointers please ?

Sid_Arthur profile image
Sid_Arthur
β€’6 Replies

Hello all ! 😊

Shall be grateful for any pointers on the following:

1) Are there any NHS ( - or other?) consultants in Bhm, perhaps neurologists, who are particularly known for assessing the benefits of B12 injections ( - in cases where the 'naff' standard B12 test is showing no deficiency . . . too!) ??! And,

2) Anyone in Bhm - or elsewhere in the UK - already quite familiar with self-injecting B12 reading this ? If so, would be grateful for your experiences of this, in terms of brands used, costs ( - financial & other) . . . & benefits experienced, as I'm considering B12 injections as a trial.

Shall be pleased to receive replies to the above two closely related B12 issues.

AtB,

Sid πŸ˜‘

Sat 29 April 2023

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Nackapan profile image
Nackapan

If your serum b12 level is in range but nothing else found to explain your symptoms. An mma test . If raised shows b12 not reaching cell level

Raised homocysteine another sign.

Functional b12 deficiency can be diagnosed.

If you eat plenty of b12 rich foods and not a vegan it's most likely an absorbyion problem.

Have you looked at any other possible causes or fit any risk factors ??.

Medications

Operations

Alcohol

Sibo ect

Hope your bloods included iron folate ferritin thyroid function vit D

You don't mention symptoms.

I'm assuming a serum b12 test .

Have yoh had one in the past to compare results?

There are no b12 specialists.

I've seen 3 neurologists .

All 3 had conflicting opinions.

Only by chance did one have b12 deficiency himself so took an interest.

Have you tried high dose b12 tablets ??

I'm reliant on b12 injections and do self inject

.I also have an NHS 2 weekly prescription at present .

The very first b12 injection shoukd be done in a clinical setting.

I wish b12 tablets had worked for me.

Once on injections πŸ’‰ most have to stay on them.

If a dietary cause most csn change to b12 tablets .

If you use search or scroll to the bottom.

Lots of posts on this with information.

Sid_Arthur profile image
Sid_Arthurβ€’ in reply toNackapan

Thanks S🌻🌻 much for your wide-ranging reply, Nackapan ! 😊

Serum B12 is now comfortably above range, due to judicious supplementation over months with 'high quality' B12 & B complex drops, now suspended, with serum folate within range ( - indicating its being used OK . . . rather than accumulating, most probably ?).

However, symptoms those drops might have relieved CONTINUE, albeit to a slightly lower extent ( - subjectively). Mainly 'neuro' - e.g. pins & needles in arms during sleep, . . . & waking feeling c❄ld in bed; also 'restless legs' during sleep has been assessed ( - & found to be worse than in the past!). Unfreshedness, fatigue, weariness, . . .

Questions:

1) do many in NHS ( - primary care, or Hosp) offer the helpful-seeming tests ? ( - active B12, MMA, . . . & homocysteine ? & would the results of these be affected now by the supplementation ?).

2) many cases of 'functional deficiency' only respond to the hydroxocobalamin πŸ’‰s, . . . not to supplementation, hmm??! ( - these then often/usually HAVE to be continued, . . . for life, as you said !?! Hmm ... ! ).

Hv recently found Dr Chandy's detailed consideration on B12 deficiency, thanks to reference to this on Dr S Myhill's B12 page ! Seems like steps πŸ‘£ πŸ‘£ πŸ‘£ in the right direction . . . ❗

AtB,

Sid πŸ˜‘

Sun 30 April 2023

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Nackapan profile image
Nackapanβ€’ in reply toSid_Arthur

MMA tests Are used to diagnose functional b12 deficiency

I'm sure whilst on b12

High serum b12 can be obtained by tablets but for some still not utilised.

So shoukd go by symptoms.

Othef possible causes shoukd be ruled out.

A referral to a neurologist if most symptoms neurological.

Sleepybunny profile image
Sleepybunny

Hi,

There may be something useful in links below but sadly can't help you with your Birmingham related questions.

UK guidelines suggest that patients symptomatic for B12 deficiency should be treated even if serum B12 is within normal range.

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

b12deficiency.info/what-to-...

Blog post about being symptomatic for B12 deficiency with a normal range serum B12 result.

b12deficiency.info/your-ser...

Are your symptoms consistent with B12 deficiency?

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

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.

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...

NICE CKS (Clinical Knowledge Summary) - B12 deficiency and Folate deficiency

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

New NICE guidelines for Pernicious Anaemia and B12 deficiency are due to be published in Nov 2023.

Link to draft document

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

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.

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).

Some of the UK treatment info needs updating in book.

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

Very comprehensive with lots of case studies.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

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

healthunlocked.com/pasoc/po...

I'm not medically trained just someone who suffered for many years from unrecognised and untreated B12 deficiency.

Sid_Arthur profile image
Sid_Arthur

. . . well, that's a post . . . & a half ! 😊

Thank y🌸u, very much ! ( - If you need a job, . . . please let me know ! Feel sure can find you something . . . suitable & interesting ! 😊 ).

. . . you may nβ›”t have medical 'training' - unlike our "Drs" - but what you DπŸ₯ have is specific medical 'experience' which has clearly proved of value to you, . . . & may well be to many others !

I've only just found this area of biochem, . . . & am astonished to see what I'm finding - not least at B12d.org ! 😊

Seems you're WIDE awake, & alert to these issues, SlπŸ’€py πŸ‡, . . . unlike MUCH of the seemingly 'trained' members of our ( - rather drowsy/dopey?) medical profession ! We could wonder how many of them have B12 issues, . . . and dβ›”n't even realise it ??❓ ... πŸ˜±β“πŸ˜Š β“πŸ˜‘

Thanks for being there, . . . & posting such a full reply ! 😊

AtB,

Sid πŸ˜‘

Thursday 4 May 2023 - hmmm, the Force strong with YπŸ₯U is ... ! 😊

Old joke: Why dβ›”n't Drs spend time looking things up ( - on t'net or elsewhere) ? 'Cos the learnt all the need to know ... at Medical School ! 😏 😹 😹 😹 ❓❓❗

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Sid_Arthur profile image
Sid_Arthur

. . . hmm, on a little πŸ”ing, found there's a consultant neurologist, Dr David Nicholl, at the QEH, Birmingham whose research interest includes Parkinson's ( - hence low dopamine levels, one cld surmise, . . . these potentially being improved by higher B12 levels in the brain/CNS !?!). Suspect there's unlikely to be anyone on this forum who's seen him ? ( - & a list of other neuros at the QEH on searching for David N's profile too ! 😊 ).

If anyone has seen him, shall be pleased to receive some feedback ( - on here, or via a PM) on how helpful his service was ! 😊

AtB,

Sid πŸ˜‘

On 'Coronated' w'end, Sunday 7 May 2023; fine & dandy as can be, ... amidst the 'noise & the haste . . . ' - a desiderata' perhaps ? 😊 . . . πŸ˜‘

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