Updated B12 and folate results

Hi Amy. Yes, they are neurological symptoms.

And yes, shocking about the guidelines not being updated. unfortunately that seem to be the case in most - if not all - areas.

All doctors should be following the 2014 BSH Guidelines for the treatment of B12 deficency and folate disorders - many have never heard of them! (Included in a link below, so you can see how your GP should be treating you).

There's no point in your GP re-testing your B12 levels (unless looking for low levels in case you need more B12). Your levels will most certainly be high because you have had B12 injections - and they are likely to stay high for many months. Your GP should not use this as a reason to stop - or continue to give - B12 injections. All the guidelines state that once treatment with B12 injections has commenced, testing is no longer required / recommended.

Your GP should be testing your symptoms, not,your blood results.

Any autoimmune condition in the family can potentially pre-dispose to PA.

Ask your GP to test your folate levels. B12 and folate work together so if you have low folate, your body will not be able to utilise B12 properly. GP's often say folate levels are 'normal' when they're not. They need to be in the top third of whatever the reference range is.

I'm going to copy and paste some links at the end of this reply. They'll take you to the main things you need to know about the diagnosis and treatment of B12 deficency. They also include the main things you need to know about serum B12 testing (and it has many pitfalls) together with some things that your GP will probably not know about B12 deficiency. This will most likely include any lack of knowledge about the neurological regime of treatment for B12 deficiency, or the fact that you can have B12 deficency without having pernicious aneamia, that 30% of patients present with neurological symptoms without having macrocytic anaemia (often seen in B12 / folate deficency and PA)...and much more (information in the links below).

The most important factor is: your GP should be treating your symptoms - not your serum B12 levels (again, information about this in the links below).

This is crucial where neurological symptoms are concerned since under-treatment in the early stages can potentially result in irreversible neurological damage. I'm not saying this to frighten you - more to give you the courage to challenge your GP if you need to.

Your GP may offer oral supplements (many mistakenly do). This wrong. The recommended treatment for B12 deficency with neurological symptoms is B12 injections. Intensive regieme. 6 x loading doses - to get B12 levels up quickly - then alternate day injections until no further improvement - for up to two years.

Most people find that the best way to deal with this lack of knowledge on the part of GP's is to become their own mini-expert so that they can help their GP's to help them. So...

It would be a good idea to read all the information in the links below - in fact, it's vitally important that you do, since your GP is most likely unaware of it. And understanding it so you can make a case for treatment may be crucial to whether you get that treatment, or not 😖.

Highlight anything that is relevant to your case (pay particular attention to anything relating to neurological symptoms, B12 testing, treatment regimes etc.).

Print the UKNEQAS B12 Alert - show this one to your GP.

Take the documents with you to the surgery and make sure that you actually go through the highlighted portions with your GP if she is reluctant to treat you (not easy, I know).

If you can take some with you, even better. If that person can read your information and be prepared to step in to support you - even better still. GP's are often more attentive and less hostile if there is a witness in the room. Sad, but true.

Finally, please come back for more advice if your GP is still reluctant to treat you.

Good luck and let us know how it goes 👍

LINKS TO GUIDANCE

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

pernicious-anaemia-society.... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to know before seeing GP)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

stichtingb12tekort.nl/weten... (B12 Deficiency and / or PA: Relationship (or not) to Anaemia & Neurological Symptoms)

Good luck 👍

You have got the idea what needs doing - apart from retest. Your B12 will be higher after your 5 loading injections, and they will say "you are now normal" no more injections.

Are you a member of PAS, it is worth joining, Martyn Hooper could help if necessary.

Amy, an afterthought....

Because you have a family history of auto immune disease, it would be normal good practice for your GP to do an full antibody screen (looking other underlying autoimmune conditions) and CPR / ESR (inflammatory marker) blood tests.

These will not diagnose any specific medical condition but if they postive or raised (respectively) then your GP should investigate further and refer you on for specialist medical advice.

With your symptoms, it would also be usual to test for diabetes.

It would not be unreasonable for you to ask for these tests if they have not already been done.

👍

I'd urge you to contact the PAS soon.

PAS tel no +44 (0)1656 769 717 There is an answerphone so messages can be left.

They should be able to point you to useful info.

Bumping into things, brain fog, memory problems, clumsiness are all mentioned on the PAS Symptoms Checklist (link in post above). Some of the symptoms you mentioned are normally considered neurological symptoms.

Do you have balance problems, tingling, pins and needles, tinnitus?

If you have neurological symptoms due to b12 deficiency it's really important that you get treatment ASAP (not after 6 months) because neurological symptoms due to B12 deficiency can become permanent if left untreated or inadequately treated.

UK b12 treatment for those with b12 deficiency with neuro symptoms is loading injections every other day for as long as symptoms continue to get better then injections every 2 months. This could in effect mean loading doses for a period of weeks even months. Gp can check this in the BNF Chapter 9 section 1.2 and also in BSH Cobalamin and Folate guidelines.

Does your GP have a list of all your symptoms especially the neurological ones?

If you are a young person, some GPs may not consider PA as a possibility at first because it's more common in older people.

Have you ever had any thyroid tests? Quite a few people on this forum have both thyroid problems and B12 deficiency. The symptoms can overlap.

thyroiduk.org.uk/tuk/

there is also a Thyroid Uk forum on HU.

Do you have someone supportive? The reason I'm asking is that quite a few people on this forum were told they had ME/CFS/fibromyalgia and sometimes its very hard to challenge GPs without support from others.

My experience is that once stuck with a label of ME/CFs/fibro all investiagtion stops unless a person is very determined.

"When I go to the doctors tonight to collect my printed results I will ask for either an appointment or a callback from a doctor to request the intensive B12 replacement and ask if I should be retested earlier, and also ask about the anti-IF antibodies and vitamin D testing."

Maybe you could take a copy of the BSH flowchart with you. It makes it clear that people with low B12 or symptomatic for b12 deficiency with an in range result should have an IFA (intrinsic Factor Antibody) test.

I must admit I'm struggling to understand why you have not had an IFA test. Have a look at the paper copy of your B12 blood test. it's possible that the laboratory that did the test may have added a note advising an IFA test because your B12 was low.

I thought some of the info about writing to GPs in this link might be relevant for you. The person who runs the website can be contacted by e-mail.

b12deficiency.info/b12-writ...

"perhaps alter my course of treatment and retest sooner"

In the BSH Cobalamin and Folate guidelines I think it mentions that retesting after treatment has started is irrelevant.

Sadly sometimes people get the initial loading injections, their b12 levels increase and they are then told they don't need more B12 because their levels are within range. People with PA need injections for life. There are other causes of B12 deficiency that require lifelong B12 treatment besides PA.

Be prepared to really fight for correct treatment.

"Personally I can see no chance that is is caused by diet"

Does your GP know that you have a diet rich in B12 foods? If they know that hopefully they will consider the possibility of an absorption problem.

"There is a family history of autoimmune diseases (not sure if there is any history of PA though, would have to do a bit of digging)."

Family link in PA

pernicious-anaemia-society....

a note of caution....

Sometimes Gps don't react well to being questioned or challenged politely. This is why it can be helpful to have someone with you.