Confused!

[Alfabeta]

Hi All

My injections were stopped when my surgery closed due to Covid! Like others, I was prescribed 50ml b12 tablets twice daily. I became ill and was given a blood test which came back as b12 level 956 - 156 above the top level of b12 range in the blood.

My doctor has told me to cease all supplementation for three months and then have another blood test presumably to see if my b12 level has dropped significantly.

I am a vegetarian and, if I am careful, I can just about get enough b12 in my diet to fulfill the recommended daily requirement.

There are obviously a lot of things wrong with this doctors instructions but researching the area has brought up what appears to be a serious contradiction in medical advice.

1. It has been said on here by often by at least one regular contributor that if ones b12 levels increase or stay within range on supplements then one can ingest b12 and one doesn’t need injections - this is obviously my doctors view!

2 The NICE advice to doctors is not to test blood for b12d patients who have a non-dietary deficiency because sufficient b12 in the blood does not mean that they can utilise it.

I have tried to argue this case with my doctor but there is an inherent contradiction within these two positions. If one can ingest b12 but cannot utilise it surely one will either die of pernicious anemia or ones myeline sheath will deteriorate to the point that ones nervous system will break down also leading to death.

I am obviously able to absorb b12 from supplements but if I cannot utilise it what is the point of the injections?

[Nackapan]

Sounds like you need your Injections.

The doctor should go by your symptoms.

This is happening everywhere a disgrace tk start testing b12 in bloods again .

Not enough is known

[JanD236]

My thought would be that your high level is as a result of your previous injections and not from your oral supplementation. I’ve read on this forum that it can take many months for blood serum levels to reduce after injections.

It seems to be a common experience that once you’ve had injections you need to maintain very high levels of serum B12 to feel well. Mine are in excess of the upper limit (2,000 from memory) but thankfully my GP realised that the blood test result was meaningless as I have injections.

Your GP is failing to treat you as per guidelines and you have become ill as a result. This is not acceptable!

You are not alone in having injections stopped due to COVID-19 and this has been the subject of many posts on here in recent months. I’ve read replies in other people’s posts suggesting recourse through the PAS and/or writing to your GP, practice manager and even possibly your local MP and newspaper.

Sleepybunny has replied with relevant links and fbirder with advice on writing letters.

Hopefully someone more knowledgeable than me will provide specific advice but in the meantime it might be worth using the search facility to look at similar other posts and replies.

[Alfabeta in reply to JanD236]

Thank you for your response. I wrote to the head of practice at my surgery six weeks ago and have had no reply.

Do you know of anyone complaining about their doctor to the BMA and suing through an ambulance chaser?

[JanD236 in reply to Alfabeta]

No I’m sorry I don’t. However, maybe it’s time to pursue through the PAS if you’re a member and taking your complaint wider, outside your practice. Let’s see what others have to say on this?

[Retteacher]

There is more than enough clinical evidence that B12 deficiency causes a wide spread of symptoms many of which are neurological/neuropsychiatric in nature. In many attempts to treat by returning serum levels to 'normal levels ',clinical improvement to some degree has only been achieved in 20 to 30% of patients. In most patients there needs to be a 'flooding of the system with large doses of B12 to alleviate symptoms. The exact mechanism is not fully understood. One theory is that there can be a barrier to absorption into the Central Nervous system that has to be overcome. This is why the guidelines of the British Haematological Society ratified by Nice specify what they do. The proof of how you can utilise the flood of B12 is whether or not your symptoms are alleviated ,albeit often slowly over a long period. In my husband's view, it is unethical to deprive patients of high dose supplements or injections if you have developed neurological deficiency symptoms that have previously been alleviated by injections. Serum levels just do not correlate with patient symptoms unless the patient has simply been eating a deficient diet.This is due to the inadequacies of the test that are well documented. The danger is that if you have developed neurological symptoms and are left deprived of sufficient B12 in the nervous system ,the damage that occurs can become permanent quite quickly. This is why the present guidelines have taken a pragmatic view to try and minimise permanent damage, and specifically recommend not testing after injections because the results are distorted and misleading.It can take 3 to 6 months without supplements before there is no ambiguity. Even then this serum level test can fail to confirm an abnormality in in up to 40% of deficiency cases- it's sensitivity is that poor. In specialised clinics it is recognised that B12 deficiency can present in many different ways - the many different faces of B12 deficiency. Far more complicated than seems to be understood by many GPs and some Consultants . Ask your doctor if he takes his diabetic patients off insulin injections because their blood test results have returned to 'normal' (temporarily).