Anyone has this issue

[1998cd]

I was given my B12 injection today and told I need to book a review with a GP as my B12 level is good and that I could now take oral B12 instead. My experience before on oral B12 is it didn’t work for me. Every bit of research I have read states Pernicious Anaemia doesn’t go away and you need B12 injections for the rest of your life. Any advice anyone can give befor I meet with a GP would be much appreciated, thank you in advance.

[Technoid]

Injecting B12 into a non-deceased human being will raise their serum B12 level, likely into the normal range or beyond. Loading doses can raise it even higher. Testing serum B12 after treatment begins is not useful since it does not reflect adequacy of treatment.

As you correctly surmise this doesnt mean that the condition which causes PA is cured. You are correct that injections are likely needed for life although it is possible for some to maintain on large doses of oral B12, absorbed with passive absorption. If there are neurological symptoms, oral dose treatment is risky, especially in initial treatment (first 6 months) as oral doses may not be sufficient to quickly replace B12 stores and support healing of neuropathy in severe deficiency.

The B12 treatment injection frequency necessary to effectively treat symptoms varies, for some it is daily, every other day, weekly, monthly some even seem to be ok on NHS treatment schedules of 3 monthly. Many forum members are unhappy with NHS frequency of treatment and pursue other options.

There is not really a one size fits all and testing B12 levels is of no use to determine adequacy of treatment. You need the treatment frequency that adequately treats your symptoms. You may find that your GP will not agree to that in which case you may have to consider self-treatment options. Hopefully your GP will be open to learning about how PA can be adequately treated but that attitude seems to be rare.

[mary70 in reply to Technoid]

Stand your ground with reference to the rights of the effective vitamin B12 that is given by the injection method - and then point out that the doctors inference is (judging by yours and others) putting your well-being in danger by arguing your case with information and details!

[Permexpi]

I have also been told I will have a review by a doctor with regard to long term treatment once I have completed my loading doses and all test results are in. It sounds like the person you refer to was jumping the gun a bit in anticipating what the outcome of the review will be. Surely that decision is for the doctor doing the review? Oral supplements are one of many options, the point of the review should be to decide which option is best for you.

[Nackapan]

Yes happened s few times.On my notes oral b12 tried.

Quote that you've trued before on oral b12.

You need injections

Why was it tested ?

Not necessary

[Cherylclaire Forum Support]

Do they not want your B12 level to be good, then ? Surely that is the point of the injections.

You would be okay on tablets if you are a vegan, but I would imagine that a vegan can be as prone to non-dietary B12 deficiency as the rest of the population. You might even be able to make B12 tablets work for you if your B12 deficiency is PA - if in large enough quantities - but in that case, it should really be your choice and monitored to ensure long-term effectivity, since there is no cure. If you have already trialled oral options and they were ineffective for you, that should be enough.

Please do not feel obliged to deteriorate - just to prove to your GP that you will.

Here is the medical advice given in NICE's draft guidelines, due out early next year :

P19/41 Vitamin B12 deficiency: NICE guideline DRAFT [July 2023]

3 Follow-up appointments for people receiving intramuscular replacement

4 1.6.11 Do not repeat the initial diagnostic test in people who are having intramuscular vitamin B12 replacement.

....well that seems pretty clear.

It's not out yet, but what is going to be true in early 2024 is already the truth.

Whether you have pernicious anaemia or not is another issue : there is no "PA test".

The IFab (intrinsic factor antibody) test will only give a positive result in about 40-60% of those who have PA - but would you trust your GP to understand that ? Would they be likely to test you once and, if a negative result is returned, that be regarded as as reason to rule out PA as the cause of your B12 deficiency ?

Martyn Hooper, founder of the Pernicious Anaemia Society, had three IFab tests before getting a positive result. A positive result will give a 95% certainty - good enough for a pernicious anaemia diagnosis in anyone's eyes... but it's the getting there, isn't it ?

A positive result ? Get a copy and keep it safe. You will possibly need to prove this again in future.

[Sleepybunny]

Hi,

Might be worth you joining PAS if not already a member. Lots of useful info on website and a members' helpline.

PAS membership is separate to membership of this forum. It's open to people worldwide and you do not need a PA diagnosis to join.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

Some people have been helped by person who runs B12 Info.com website.

b12info.com/

There's also The B12 Society in Scotland.

theb12society.com/

Unhappy with Treatment (UK info)?

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

See Point 8 in above link.

Thread about Patient Safety, has useful links for those in UK having difficult health experiences linked to B12 deficiency.

healthunlocked.com/pasoc/po...

I'll try to add more later.

[Sleepybunny in reply to Sleepybunny]

"told I need to book a review with a GP as my B12 level is good and that I could now take oral B12 instead"

I'd like to know why they are testing your B12 levels.

PAS article - Testing B12 During Treatment

This article has some useful quotes from UK health documents.

pernicious-anaemia-society....

Stitchting B12 Tekort article - Testing B12 During Treatment

stichtingb12tekort.nl/engli...

Track down the local B12 deficiency guidelines your ICB (Integrated care Board) in England or Health Board in Wales/Scotland is using.

If you can't find them online or by searching threads on this forum, best bet is to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to them or copy of them.

Compare the ICB or Health Board guidelines with NICE CKS (Clinical Knowledge Summary) B12 deficiency link below.

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

It's also possible to submit a FOI request to your GP surgery.

Reviews

Some ICBs and Health Boards carry out reviews of people on B12 injections.

I believe this is mainly a cost cutting exercise...I am deeply cynical due to bad experiences.

guidelinesinpractice.co.uk/...

nhslguidelines.scot.nhs.uk/...

Might be worth searching online to see if your ICB or Health Board is currently reviewing people on B12 injections. Search "name of your ICB (or Health Board) B12 injections review".

Sometimes individual GP surgeries might run a review of people on B12 injections.

Informed Consent

It's my understanding that when a doctor wants to make a major change to patient's treatment, the patient needs to give informed consent for the change.

As I understand it (I'm not a scientist or medical professional)this means that the GP should have discussed the pros and cons of changing to oral treatment with you, made sure you understood the issues and got your agreement before changing treatment.

I'm assuming you have not given informed consent to the change to oral treatment previously.

If you are unhappy with a change to oral treatment, it might be worth pointing out in any letter you write to GP that you have not given your informed consent for the change in treatment. Keep a copy.

If the change to oral treatment is part of a study the GP surgery or ICB/Health Board is taking part in, has this study got "ethical approval"?

You might want to ask if you are part of a study and if you are, you might want to ask further questions about whether the study has "ethical approval" from an ethics committee.

Most studies involving patients need ethical approval.

BMJ article on ethical approval from 2009

bmj.com/content/338/bmj.b450

Note on oral treatment - B12 Institute (Netherlands)

b12-institute.nl/caution-no...

Search online for "Cochrane Review Oral B12" and read the conclusions.

Gloucestershire ICB has a treatment algorithm that seems to put most patients with B12 deficiency onto oral B12. See blog post below.

b12info.com/gloucestershire...

There may be other useful info in the pinned posts on this forum.

See the pinned post "Various PA/B12D Resources".

Pinned posts are on right hand side of screen if on computer.

[Sleepybunny in reply to Sleepybunny]

It's vital to get adequate treatment. Inadequate treatment increases the risk of developing permanent neurological damage. In severe cases, the spinal cord may be affected.

Might be worth discussing the risk of neuro damage with GP.

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

PAS have leaflets

"Help Sheet – re-testing of B12 during treatment"

"Treatment changed – What can you do?"

pernicious-anaemia-society....

I'm not a health professional.