B12 question

[Davepolo]

If your b12 improves is it a possibility to no longer need injections even though your folate is low and symptoms still persist, just been told this by my GP

[Nackapan]

Yes possible if you dont have absorbtion problems PA and you are symptom free!!

And blood test done long enough gap after last injection!!

And touhav3mt got functional b12

So only possible if dietary is the cause of deficiency

[Davepolo in reply to Nackapan]

I have really bad symptoms because injections were stopped and I was told to take supplements but my folate is still low thanks for advice

[Nackapan in reply to Davepolo]

Write to Gp saying you getting ill

[briarhillcat]

If you have pernicious anaemia you will need B12 injections for life. Oral treatment will not work . Your stomach will just throw it out. Injections are essential.

[wedgewood]

Certainly not if you have Pernicious Anaemia . Trouble is that it’s so difficult to get a diagnosis ,as for many people , the IFAB test is inconclusive , and the doctors are like to say that you don’t have P.A. if your test comes up negative( which is not always the case . . Always bear in mind that on the whole the medical profession is very ignorant on P.A. . Ask your doctor to give you chapter and verse and relevant scientific proof of that statement about not needing injections when your B12 is high , and you still have symptoms . He/she cannot because it doesn’t exist . You were prescribed B12 injections for a very good reason . If you still have symptoms , you need more regular injections , even if your B12 is high.

They are trying to wriggle out of giving patients B12 injections , and this difficult coronavirus pandemic presents a very convenient moment to do it . I have my own ideas as to why this is happening , but cannot voice them here .

[Davepolo in reply to wedgewood]

Thank you for the great advice

[Gambit62 Administrator]

Couple of issues.

Serum B12 is a difficult test to interpret at best of times - even more so after you have had B12 injections. It tells you the amount in your blood but doesn't tell you what is happening in the cells where B12 is used.

Symptoms of folate deficiency are very similar to those of B12 deficiency so it could possibly be folate deficiency. However, general rule of thumb (as in BCSH standards) is to suspect a B12 absorption problem if there is a folate absorption problem - so assuming you have a good amount of folate in your diet ...

There isn't a good test for PA as a cause of B12 absorption problems. If you had an IFA test then a negative is a long way from ruling out PA as the test isn't very sensitive and gives false negatives about 50% of the time. The BCSH standards refer to IFAB negative PA as a result of this

If your initial B12 problem definitely wasn't dietary, or an absorption problem such as h. pylori infection that has been treated and cured, then your absorption problem means that you are no longer able to access any stores in your liver from the injection because the release uses the same mechanism as you use to absorb B12 from food - which is why injections in the case of an absorption problem are for life.

Injections correct a B12 deficiency. They do not correct a B12 absorption problem.

onlinelibrary.wiley.com/doi...

[Davepolo in reply to Gambit62]

Thank you for advice

[Sleepybunny]

Hi,

I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about tests for PA, B12 books, B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

Have you considered joining PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 article from Mayo Clinic (US)

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

Impact of Pandemic

Lots of UK forum members are struggling to get B12 treatment at moment due to impact of pandemic. Some have had B12 injections stopped/delayed/frequency reduced or swapped for oral tablets.

Has GP stopped your B12 injections totally?

Have you considered challenging their decision?

I left a long reply in this next thread with info on impact of pandemic on B12 treatment in UK

healthunlocked.com/pasoc/po.....

It includes links to recent PAS news items and blog posts from B12 Deficiency Info which have suggestions on how to cope if injections stopped/delayed/swapped for oral tablets.

Warning

I believe that many UK patients who have been on B12 injections will find it difficult to get them reinstated even after pandemic is over.

1) There are moves afoot in some areas of UK eg Gloucestershire to move patients permanently to oral tablets.

Blog post about Treatment of B12 deficiency in Gloucestershire (April 2020)

b12deficiency.info/blog/202...

PAS blog post about oral B12 treatment (August 2016)

martynhooper.com/2016/08/02...

2) There is pressure on GP surgeries to cut costs...I think some GP surgeries see patients treated with b12 injections as an easy target.

Have a look at the comments under this recent BMJ article about PA (Pernicious Anaemia)

bmj.com/content/369/bmj.m13...

Some of the responses below the article from GPs are very concerning. See response published on 24th April. Attitude of GPs seems very questionable to me.

Costs £30 to get access to original article. There was a recent thread about this article on the forum.

Challenging GPs

If you want to challenge their decision, I suggest putting queries about treatment into a brief as possible, polite letter to GP.

Try to include extracts from UK guidelines etc that support your arguments. Should be useful info in the links I included in this post.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

Your local MP or representative of devolved administration in Scotland, Wales, NI should be interested in your story if you are struggling to get appropriate treatment.

I am not medically trained.

[Davepolo]

Hi thanks for the advice I’ve challenged the decision and have had two blood tests this week, b12 is normal but folate very low and I’m suffering quite badly atm I’m hoping that the decision will be overturned I will look through advice you’ve given I had so many helpful posts it’s helping me get more knowledgeable

[Sleepybunny in reply to Davepolo]

Hi again,

The reason I mentioned writing letters to GP is that I feel this is more effective than passing info on verbally.

In UK, letters to GP are supposed to be filed with medical notes so are hopefully less likely to be ignored.

Letters can provide a paper trail in case there is a need for future complaint.

Letters could contain symptoms lists, dates of diagnoses, personal and family medical history, extracts from UK documents, requests for referrals to specialists etc.

You could draw your GPs attention to the risk of permanent neurological damage if someone is under treated for b12 deficiency.

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....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Has your GP got a list of all your symptoms, especially every neurological symptom you have?

See first link in my other post to another forum thread (it mentions neurological symptoms).

If you have neuro symptoms, have you been referred to

1) a neurologist

2) a haematologist (See NICE CKS link)

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.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

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

Symptoms Diary

Some on forum keep a daily symptoms diary which tracks changes in symptoms over time and when treatment received.

It can be useful evidence to show the GP in showing whether there is improvement or deterioration in symptoms.

In letters to GP link below,

Point 1 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

b12deficiency.info/b12-writ...

B12d.org has organised some online support meetings during pandemic.

b12d.org/event

Don't know if you have to be a B12d.org member.

[Davepolo]

I have already wrote to dr to explain my concerns, I’m having a second blood test today regarding my low folate, I will keep you posted on outcome many thanks

[Litatamon]

Sleepbunny probably already posted this article ---

stichtingb12tekort.nl/weten...

It is clear, concise and should not be that threatening to a doctor, when they have it all wrong.

Scroll down to #4 and then #5. It explains why your doctor is making erroneous decisions Dave.

All the best to you.

[Davepolo in reply to Litatamon]

Thanks for advice still ongoing with gps