Next steps advice, B12D

[Sailing63]

After completing all relevant blood tests (everything fine apart from low iron and 165 ng/L) I have completed my 6 loading doses 2 weeks ago and generally do feel some improvements, especially on the faster heart rate, that has subsided significantly. Since 2003 this has been my 3rd loading dose program, previous 2 had no follows ups but I am now more aware of B12D issues and NICE guidelines and will ensure that this time I will be in charge of my ongoing treatment plan.

Before the loading doses I asked for IFAB blood test (Thanks PA Community) and this came back with a score of 5.0 and normal range is 0.0 -20.0 so advice frm practice nurse is that I am NOT PA or Coeliac. All good there so far, but I am aware that IFAB blood tests do have a high error rate.

The plan is that I have another blood test after 90 days of first blood test (06/04/24) to see what B12 levels I have held after loading. The discussion will then be a clear treatment plan on either Intra Musc (IM) every 8-12 weeks / as required ( I will insist on this based on new NICE guidelines) or supplementation via B12 tablet on the basis that I am not PA and so should be able to absorb B12 from tablet form. My question was and will remain "then why since 2003 have I only ever tested B12 range between 140-160 on every occasion (4 x B12 tests and 3 loading dose programs) ?? - why does it not hold above 200 /300 range even if a B12 / folate diet awareness".

The question I am asking PA Community is: Should I now do nothing until the blood test date to get a "clean" result in July based on loading doses only? Or should I add in the 50mcg tablets which was the original but useless treatment offered?

I do intend to request a full set of blood test so they can be compared to previous ones and so changes can be compared.

Previous symptoms haven't returned / worsened so currently I am assuming the loading doses are doing their job. If symptoms had returned or worsened I would have gone back to GP and insisted strongly that he listens and acts based on symptoms and NICE guideline to treat until symptoms either improve or do not worsen irrespective of 6 loading dose stipulation.

My plan is to NOT add supplement and see the results in July, but just wanted to get a more informed view of those further down the B12D trail. Getting informed prior to sitting with GP re B12D is now a must in my opinion.

Thanks all and keep up the supportive advice, we need it when it comes to B12D awareness.

[Nackapan]

A repeat b12 not needed.Values shoujd be high. It's in the guidelines!

No help at all.

I injections shoukd be continued for a maintenence for life.

IFA is false negative for about 50%. Who have PA

With your history it should go by symptom relief.

Rather thsn waiting to crash again.

Tablets will do nothing if your diet is good as if an absorbtuin problem I jections are needed.

Hope this helps.

It should be obvious to your g.p you have an absorbtion problem ,

If your diet includes dairy, meat eggs ect which ate very rich in B12 and you can absorb it well your symptoms would not return or your levels drop.

Serum blood b12 levels shoukd not be the guide for the frequency of b12 Injections .

Our stomach acid decreases as we age so wd all have slower absorbtion less effective absorbtion however good our diet is.

A follow up blood test is useful fot ferritin ,iron vit D and folate if it's not done on the same assay as b12 !

Often these get low as well.

I took a multuivit ( supermarket ) with iron and 200-400mg folic acid .

I got Heart palpitations and breathless when ferritin dropped post loading b12.

Fond the frequency you need takes time .

The aim is to keep b12 levels up to stop the seesaw effect .

When symptoms start to return is your guide .

8-12 weekly some are fine on.

Many need a higher frequency.

I'm currently on an NHS prescription for 2 weekly .

Tried different frequencies.

Tablets ect over 5 years

Depends on where you start from . Level of b12 and how severe symptoms are .

I trialled oral b12 . Did nothing for me .

Those that have some success on here take very very high doses or oral b12 .

Of course if you are vegan it's likely dietary and you will absorb tablet form ax a maintenence.

There is plenty of information if that the case .

Just make sure you kerp on top of it before any nerve damage occurs

[Cherylclaire Forum Support in reply to Nackapan]

I agree.

"When symptoms start to return is your guide" - avoiding the return of symptoms should, of course, be the joint aim of GP and patient. That isn't easy and can take a long time to get right, can't it ?

There is a huge problem with this part, Sailing63 :

Many of the symptoms that we would recognise as all-too-familiar and together highly indicative of B12 deficiency, ones that we see over and over again on here, are not recognised by GPs, consultants or, sadly, missing from the new NICE guidelines.

This can lead to a long round of consultants trying to find a number of alternative causes, which can complicate things for a GP - and send a patient up several wrong paths. Elimination can be a good thing, but takes a very long time - so alright, so long as your GP is aware that this should never hold up B12 treatment. Surprised that your GP continues to assume a loading dose alone will suffice, given you've had three now ! Proof enough yet ?

There are generic type vitamin deficiency symptoms, it's true. There are other conditions that share some similar symptoms. It can be difficult for a GP to diagnose B12 deficiency solely on symptoms. But having already accepted that a B12 deficiency is present by blood test results, it should not be too much of a stretch for a GP to be patient-led on return of symptoms. It really helps to have an observant GP onside. Having a collection of visible symptoms can actually prove to be a bonus for this reason. Getting a face-to-face appointment may be difficult and getting the same GP each time even more so.

We are all different in terms of which symptoms we have, the severity of these, and how they affect us in daily life - but I'm certain that some cannot belong to any other condition.