B12 Injections

[TonyK1]

In Nottinghamshire GP are not allowed to give extended loading doses to alleviate patients with neurology symptoms. All the pharmacies are tied up by this constraint - one injection every 28 days. I assume that the extended loading dose was advised by MNICE can anybody confirm that?

[Pickle500]

I think it depends on who is asking.

NICE guidelines suggest every other day injections until no further improvement in the instances of neurological complaints. But a regular retort or rebuff from GP's to that is "those are only for people with potential brain damage/given in hospital settings/when people have severe ataxia or movement issues".

When we have neurological complaints, it's very often impossible to prove that we do. I think that's because B12 tends to affect small fibres first or in many people it is small fibre neuropathy (pins and needles, burning and numbness) and none of those symptoms can be proven by medical tests.

So to a GP, it's only anecdotal. A GP would have to believe that you have neurological complaints to agree to ongoing treatment every other day.

In some cases they give the standard doses and, if you're lucky and get a good one, they can sometimes be convinced to agree to a further set of loading doses if you're not improving at all.

[TonyK1 in reply to Pickle500]

Thanks for your reply. My GP says they controlled by a panel of GP's who decide on treatment regimes on behalf of the whole of Nottinghamshire. He appears to be right

[Pickle500 in reply to TonyK1]

Has the GP given a reason as to why a panel of GP's decided they should make a unilateral decision to undertreat patients and leave their health at risk?

[TonyK1 in reply to Pickle500]

No the GP has just said that he is not permitted to do it. I have written to the panel asking why they don't follow NICE guidance and would they instruct/permit my GP to give me the treatment. I'll let you know what they say.

[Pickle500 in reply to TonyK1]

nottsapc.nhs.uk/media/1330/...

I found this online. There's a line here 'Patients should be given strict instructions to seek immediate medical attention if neuropathy symptoms develop'

This is a nonsense. They are basically saying that if you get neuropathy you should contact a Doctor?

Which would be them?

I didn't realise Nottinghamshire was a hotbed of expertise in B12 deficiency. But they clearly see it that local consultants are enough to create their own rules.

The medical system is a farce I'm afraid.

Good luck

[Nackapan in reply to TonyK1]

Have you seen a neurologist?They can recommend to continue eith every other day if needed

[JaneChapple in reply to TonyK1]

They are called Integrated Care Board (previously CCGs (Clinical Commissioning Groups), and yes they are in charge of GPs and what GPs are allowed to dispense medication wise, so their hands are tied. However you can put in FOI (freedom of Information requests) and you can put in a formal complaint to them, whether you get the answer you want though is another matter entirely!

Good luck!

Janexxx😩😊❤️

[TonyK1]

Thanks - I have seen that.. They are using Serum B12 tests not active B12 tests and indicate that the ultimate treatment in 2 weeks loading dose without any extension to improved symptoms - no use at all

[Pickle500 in reply to TonyK1]

Yes, the serum/active thing is a difficult one to get over. Few to none use Active B12 measures for testing so its usually only serum.

But the unilateral choice to actively not give ongoing injections when neurological issues are present is not something I've seen anywhere else. The hematologist and/or neurologist in the Sherwood Forest hospital has potentially made that decision as their name is on the guidelines. So I would be interested to know why they suggest that's OK.

Most likely it's a financial restriction to reduce nurses time spent on B12.

I would also be tempted to go into the hospital or make an appointment with the hematologist to discuss their reasoning. And get the treatment you need too of course.

[TonyK1 in reply to Pickle500]

The GP has referred me to the Haematologist Department but when she asked for advice from them the response was "try a trial of once a month for 4 months then do a B12 test" The trial should start with a test to establish a baseline and then tests at each injection to explore whether there is a trend. The suggestion made would result in a useless piece of information. ... and besides all that it is a poor alternative the NICE protocol.

[Pickle500 in reply to TonyK1]

May I ask if you got a deficiency indicated from an initial serum blood test?

[wedgewood in reply to TonyK1]

They should know that B12 testing is a waste of time once injection treatment has started . This is in the guide-lines .

[Nackapan in reply to TonyK1]

Yes standard practice.They can and do give more on a patients need.

They also need the NICE guidelines pointed out to them.

All gps can prescribe 'off licence ' too on an individuals needs.

Look ag a copy of local guidelines

Guidelines as the word means .

Direct them to PAS who have information for medics.

[Cherylclaire Forum Support]

NICE guidelines for B12 deficiency are currently under review with new guidelines to be published in November.

Currently, the guidelines (NICE. BCSH, BNF) state that those presenting with B12 deficiency with neurological symptoms should be given EOD injections until there is no longer any improvement to be had, generally with a review at three weeks. Repair to nerve damage is slow and cannot be the same for each patient, severity and longevity both being factors. This stipulation regarding waiting until no further improvements possible is, I believe, there because some damage can be irreversible.

After this reparation, an injection to maintain what has been recovered is to be given every 2 months. If this is insufficient to prevent return of neurological symptoms, the logical next step would be to reinstate reparation and then administer more frequent maintenance injections as a trial. One job: if it cannot maintain, it's not adequate.

Incidentally, I cannot recall an injection every 28 days being a familiar frequency in any UK-wide medical guidelines for hydroxocobalamin. It sounds more like the maintenance frequency usually found in the USA concerning cyanocobalamin injections.

Sleepybunny has given links to many recent local NHS guideline decisions on treatment, which do not always follow the established medical advice, often falling short and likely proving unhelpful.

Those local area NHS groups who genuinely wanted to help might, you would have thought, want to wait for the NICE publication in November. This is a body of work that has taken years to produce, with consultations involving groups such as the Pernicious Anaemia Society, B12 Deficiency Support group, the B12 Society - and which, in the interests of transparency, have published the consultation on draft scope with comments and questions from these groups and other interested parties.

Something that a regional NHS group could not possibly replicate.

I have no medical training or background. I was given two injections a week at my local practice and this continued for six months. Without this measure, I would have continued to deteriorate.

[WiscGuy in reply to Cherylclaire]

"... those presenting with B12 deficiency with neurological symptoms should be given EOD injections until there is no longer any improvement to be had.... This stipulation regarding waiting until no further improvements possible is, I believe, there because some damage can be irreversible."

This seems to be common belief among doctors, but it is nothing more than belief: as far as I have found, no research exists confirming this belief. Look at the medical journal articles reviewing treatment of B12 deficiency with neurological symptoms and you will see conclusions in every review article that very little is known about effective treatment of nerves damaged by deficiency of B12, and therefore you will see nothing regarding the point at which effective treatment of nerves damaged by deficiency of B12 has run its full course and no further improvement can be expected

[Cherylclaire Forum Support in reply to WiscGuy]

You are right - there is not much research that might be used as guidance regarding when to stop trying. I think that, given the variance in severity and longevity of damage to nerves caused by B12 deficiency, it would be difficult to determine a generic cut-off point for recovery. Some GPs seem to have mistaken the suggestion of a review at 3 weeks to mean that this is sufficient timeframe for attaining full recovery and moving focus to maintenance treatment. Doubtful.

From posts and comments made here on the forum, it seems clear that not only are we all different (which is unsurprising) but that nerve repair can take far far longer than expected and that for some, full recovery won't be achieveable. Martyn Hooper, founder of the Pernicious Anaemia Society, must have come to an agreed plateau stage - which meant that he was able to be officially recognised as having a disability. This seems quite rare.

I did not give up trying with frequent self injections (EOD at first, for a couple of years) - because I was told by a senior ENT consultant that I was on the right track with SI and to be persistant - also a 6yr search for anything else ultimately proved fruitless and disheartening. This consultant was aware that it would take years, Stitchting B12 Tekort seem to agree.

My GP did not protest: she had made all the referrals possible, had observed and monitored my progress from the start- including what could be managed more effectively by frequent B12 injections. She understood what I was trying to do. Continuity of face-to-face appointments, regular blood tests and monitoring with the same GP counts for much, given the right GP. Now often not an available option, and that's a shame.

Hoping for something positive to come from the November NICE publication.

Any more news from PAS research ?

[Helsan]

We had a problem with our Gp eho refused to give my husband every other day for neuropathy. Gave a few weekly then stopped said unlikely yo be B12. There is a private clinic at Cambridge Nuffield iron and B12 specialist. Around £200 but his letter has sorted it. I sent NICE guidelines and gp said it was only guidance. I sent several letters saying delay could cause permanent damage. He said B12 was poisonous! I sent research to say it wasn't. Now they have had this said by a consultant we are prescribed 28 vials of B12 every other month. I am injecting my husband as shown by consultant at the appointment. Gp now worried re permanent damage.

[WiscGuy in reply to Helsan]

Improvement comes slowly. You have done a great job guiding your doctor, and to the doctor's credit, the doctor has responded in a professional manner. Keep up the good work. Don't allow a medically-inappropriate snap decision to cease every-other-day injections due to "no further improvement". If I understand correctly (and I welcome correction for any errors), in cases of B12 deficiency, damage results when new cells don't have accurate copies of DNA, and the cells therefore don't know what to do. Neurological effects persist until the defective cells are replaced with new cells created in the presence of sufficient B12; that occurs very slowly in repair of nerves. However, even if my understanding of the process is incorrect, the statement that nerve repair is a slow process is correct.

[Sleepybunny]

Hi,

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, 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...

Might be worth having a look at this thread about Patient Safety which has lots of useful links for those who've had difficult health experiences in UK.

healthunlocked.com/pasoc/po...

I'm not medically trained.

[Sleepybunny in reply to Sleepybunny]

If you have neurological symptoms

1) has your GP /specialist got a list of all your symptoms, including any neuro symptoms and definitely any symptoms affecting your spinal area.

I used PAS list below and added any symptoms not on list at the bottom.

pernicious-anaemia-society....

2) have you been referred to a neurologist?

NICE guidance Suspected Neurological Conditions

nice.org.uk/guidance/ng127

NICE when to refer B12 deficient patient to neurologist/haematologist/gastro enterologist

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

If GP is reluctant to refer you then maybe they could write a letter to local neurologist asking for advice on treatment.

Contact with a specialist doctor is no guarantee of better treatment for B12 deficiency.

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of B12 deficiency with neurological symptoms present.

It's vital to get adequate treatment. Inadequate treatment increases the risk of developing permanent neurological damage.

If you write a letter to GP expressing any concerns about treatment, might also be worth copying it to practice manager. Some GPs find it hard to cope with assertive patients.

Might be worth mentioning in letters/conversations that there is an increased risk of spinal cord damage if B12 deficiency is under treated. Perhaps pass PAS leaflet below to GPs.

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

pernicious-anaemia-society....

NICE CKS guidance B12 deficiency and Folate deficiency

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

Link to new draft NICE guidelines for Pernicious Anaemia and B12 deficiency. These should be published Nov 2023.

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.

"No the GP has just said that he is not permitted to do it. "

I'm not sure that what the GP said is right....

GPs are allowed to treat patients off license if in their professional judgement that is best for the patient.

If a GP thinks that a patient would benefit from B12 injections more often than in guidelines then my understanding is that they are allowed to prescribe them more often.

gmc-uk.org/ethical-guidance...

I do wonder if the problem is that the GP doesn't want the hassle of explaining extra B12 injections to management and ICB (Integrated Care Board).

There's a lot of info that might be useful in the links to other threads at bottom of my other reply.

[Sleepybunny in reply to Sleepybunny]

I think PAS and B12 Info.com (formerly B12 Deficiency Info) would be interested in hearing about what's happening in Notts...

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.

PAS Contact details

pernicious-anaemia-society....

B12 Info.com

b12deficiency.info/

Have you talked to your MP?

List of MPs

members.parliament.uk/

Your MP's website will have contact details.

List of ICBs in England

nhs.uk/nhs-services/find-yo...

"try a trial of once a month for 4 months then do a B12 test"

See articles below about testing B12 during treatment

PAS article

pernicious-anaemia-society....

From Dutch b12 website (units/ref ranges/treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...