Update B12 Injections

[NFFC_NO1_FAN]

Been waiting 5 weeks for a phone call regarding possibly stopping my B12 injections,doctor called today and said he wants to do an antibody test with the possibility of putting me on tablets,could anyone give me any advice of whether thso would be detrimental to how I feel please?

[PlatypusProfit8077]

That’s really stressful, I’m sorry.

How long do you have in between injections? And have you had a positive antibody test in the past?

[NFFC_NO1_FAN in reply to PlatypusProfit8077]

Thankyou for replying,my next one is due next month and I'm really not sure I've been having injections for about 8 years

[Nackapan]

The IFAB test will only show 50% of those with PA .I had a similar letter.

Stating if b12 was in range ( well it would be on Injectiobs)

And IFAB test negative b12 I hectiobs woukd stop.

Even said would be detrimental.

I made a G.p appointment. It was by phone.

I didn't have the blood test .

My prescription continued .

PAS csn provide them with I formation.

Very stressful for you .

Have you had sn IFAB test in the past?

[NFFC_NO1_FAN]

I'm not sure if I've had one before as it was 8 years ago when I 1st started the injections,it's really stressful as I'm not sure what's going to happen and how I will be if I have to go on tablets I did think that it wouldn't be overly accurate

[wedgewood in reply to NFFC_NO1_FAN]

As Nackapan says , the Intrinsic Factor Antibody test cannot be relied upon to reveal the antibodies that cause Pernicious Abaemia . Sometimes they show up , sometimes they don’t . This happens about 50 % of the time . The founder of PAS was tested a few times before the antibodies showed up .

As there is huge ignorance is the medical profession about PA , this fact is not recognised . Doctors will test once and if the test is negative , they will withdraw injections. If you have tested positive for the IFAB test in the past .you must be on injections FOR LIFE ! Pernicious means DEADLY . I the past , before injections, PA was deadly.

If you are put on tablets and your B12 deficiency symptoms start returning , you must get your injections reinstated .

Most of us on this forum have been obliged to turn to self-injection of B12,, which I can heartily recommend. So convenient and cheap . ( about £2.00 for an injection including everything you need . )

After a terrible time with dreadful symptoms , I was licht enough to have a positive IFAB test , but coujd only get one injection every 3 months and I need a weekly injection? we are all different )

I can send you all you need to know on how to do this . if you wish .

But do try to convince your doctor to continue with injections.

Best wishes .

[CaziD]

Same thing has happened at my surgery, all patients tested and if the test came back negative, then switched to a monthly prescription of tablets. I had been on injections for 8 years - when I asked to be tested at the time I was told ‘Why? The treatment will be the same. You will be on injections for life’. I haven’t used their prescriptions because I found someone in the local area who is medically trained to administer B12 jabs as an interim measure. I may investigate obtaining my own supplies and learn how to self-inject. Just couldn’t be bothered engaging with the surgery after being told by told by text that I didn’t need B12 jabs any longer!! Hmmpph.

[Nackapan in reply to CaziD]

Do write one short letter to state your case . It will go on your notes.

[Cherylclaire Forum Support]

I think this fight to save your injections is better done before you get to the stage where you are put on tablets. This is just my opinion:

There is no proof that you will be able to function as well on tablets as you did on injections - and if your condition has been managed for years on injections, what is the reason for altering treatment ?

I doubt your GP will accept that you need injections reinstated because you tell them your symptoms have returned - not while your total serum B12 is still in range. So you would then be in a position of having to wait to deteriorate significantly*, just to get back to where you were.

If this happens, what are the chances of getting much-needed loading injections to restart treatment ? Or EOD injections (if nerve damage symptoms) ?

This all sounds like a fight from a more vulnerable position.

I have had three IFab tests - all negative - none of which I recall requesting; although to be fair, I don't recall much of that time. That does not prevent me from having to control symptoms with B12 injections. Martyn Hooper, founder of the Pernicious Anaemia Society, got a positive only on his third IFab test. Is your GP aware that this can happen -or will your treatment get altered if a single IFab test returns a negative ? (This could only mean that your antibodies are not active at the time of the test.)

Have a look at the recent NICE guidelines for treatment of B12 deficiency.

* I would never recommend anyone deteriorating to prove a point - although I once did with angular cheilitis with disastrous results (see photos on previous post) ! Nipple cream, however, is not B12. Wouldn't mess with that.

[Sleepybunny]

Hi,

I'm brainstorming info that might help you so apologies for any abruptness.

PAS (Pernicious Anaemia Society)

Have you considered joining PAS if not already a member?

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

PAS have lots of useful leaflets, some forum members print them out and pass to GPs.

pernicious-anaemia-society....

You would need to be a PAS member to access some of the leaflets

Leaflets include

Treatment changed – What can you do?

Helpsheet for Patient-GP Discussion

PAS Support Groups

These can be useful places to swap info.

I think non members can attend some meetings but check with group co-ordinators.

pernicious-anaemia-society....

Unhappy with treatment?

Link about writing letters to GP about B12 deficiency

Link has letter templates.

b12info.com/writing-to-your...

Thread about Patient Safety, has links for those having difficult health experiences with B12 deficiency in UK

healthunlocked.com/pasoc/po...

Similar HU Threads

If you click on Posts tab at top left of screen on computer then search Posts with term "injections stopped" that should show threads with similar stories.

I suspect there is going to be a massive increase in similar posts on this forum due to new NICE B12 deficiency guidelines - published March 2024.

My first thought when I read new guidelines was that more people are going to have their injections stopped because to me there seemed too much emphasis on treating with oral B12.

PAS blog post - Health Inequality in Long-term Conditions

This is by PAS CEO Katrina Burchell

She mentions people having their B12 injections stopped.

pernicious-anaemia-society....

You can leave comments under the article.

Patients Association blog post - Shared decision-making and informed consent

patients-association.org.uk...

I think you'll find this useful to read.

Have you given your informed consent for the change to oral tablets?

If no, might be worth writing a letter to GP and copy it to practice manager explaining that you have not given your informed consent for this change.

B12 documents

I suggest you read the following documents when you have the energy.

1) NICE B12 deficiency guideline - published 2024

PAS have a blog post about this new guideline

pernicious-anaemia-society....

The person who runs B12info.com has also blogged about it.

b12info.com/first-nice-guid...

2) NICE CKS Anaemia - B12 and folate deficiency - published some years ago.

3) BSH Cobalamin and Folate guidelines -published 2014

4) Try to find local B12 deficiency guidelines used by your ICB (Integrated care board) in England (Health Boards in Wales/Scotland).

If you can't find them online, 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 or copy of them.

Reviews of Patients on B12 injections

Some ICBs/Health Boards are reviewing patients on B12 injections....I think this is primarily a cost cutting measure.

Perhaps worth contacting ICB/Health Board and asking is there is a review of patients on B12 injections.

If yes, might be worth submitting a FOI (Freedom of Information) request to ICB/Health Board asking for copies of or a link to documents that outline the review process.

Put FOI or Freedom of Information into search box on ICB or Health Board website which should take you to a page explaining process.

Some individual GP surgeries run reviews of their patients on B12 injections.

You might want to ask if you are part of a review and if you are...might be worth submitting a FOI (Freedom of Information) request to Practice Manager asking to to see documents that outline the review process. They might be rather reluctant and asking might affect GP/patient relationship.

If interested, put FOI into search box on GP surgery website which should take you to a page explaining process.

Self Treatment

Some UK forum members try treating themselves when NHS treatment is not enough.

Some get extra B12 injections privately, some try high dose oral b12 (1000mcg or above) but this doesn't work for some (didn't for me) and some as a last resort try self injection (SI).

Campaign to get B12 injections OTC

Tracey Witty of B12info.com has campaigned for over ten years to get B12injections available over the counter in UK.

b12info.com/a-decade-of-cam...

Symptoms Diary

Some forum members track symptoms over time. Perhaps pick up to ten symptoms, score severity each day or each week, Could be useful evidence of deterioration or improvement in symptoms.

If a patient is moved from B12 injections to oral B12 and their symptoms start coming back or new symptoms start appearing then it seems likely to me that oral b12 is not right for them.

As it is many UK forum members cannot manage on the usual measly 4 B12 injections a year.

I'm not medically trained.

[NFFC_NO1_FAN]

Thankyou everyone for all your help and advice it's all abut overwhelming to be honest,I've only recently lost my dad a couple of weeks go so when the doctor called I wasn't really taking in what he was saying!!! I have my blood test booked for the 4th November so will see what happens

[WiscGuy]

There has been confusion in medicine for decades regarding the benefits of B12 injections vs oral B12.

Bruce Wolffenbuttel, MD, PhD, et al., in their article "The Many Faces of Cobalamin (Vitamin B12) Deficiency", reviewed in some detail the deficiencies in medical-journal articles touting the so-called benefits of oral B12 over injected B12.

sciencedirect.com/science/a...

Look in the section "How Should Treatment Be Given?", starting in the second paragraph, for the discussion of the research behind the push for oral, vs injected, B12. Show this to your doctor, or mention it in your letter and enclose with the letter the part of the article which discusses injections ("parenteral") vs oral dosage of B12.

Dr. Wolffenbuttel is a well-regarded researcher, with literally hundreds of articles published in medical journals. You might also mention this.

researchgate.net/profile/Br...

Scroll down a couple of inches and you will see "Publications (676)". That is the number of articles published or co-published by Dr. Wolffenbuttel.