Pernicious Anaemia-Starting B12 injections and folic acid

[Fallingapart0627]

Hi, Seen my GP yesterday to discuss recent blood test results and my GP is starting my B12 injections on Monday. 3 a week for 2 weeks initially. My folate is also low so she has given me a 3 month supply of folic acid. I know from the very knowledgeable posters on this site that I should not take folic acid until the B12 is started so can I start them on Monday after the first injection? Thank you x

[Nackapan]

Yes as long as the b12 is treated first.

It is my understanding high folate can mask b12 deficiency .I'm sure others can give more details.

[Fallingapart0627 in reply to Nackapan]

Hi, am not sure whether to start taking the folic acid straight after the first injection or is it best to wait until I have had all 6 loading doses. I have no clue as am quite new to all this. Although PA was diagnosed by a positive IF and PCA blood test over 5 years ago, I have only just chased this up with my GP’s as my symptoms all pointed to PA. Thank you for your help x

[Nackapan in reply to Fallingapart0627]

I imagine you can start taking folic acid as soon as you like. As the b12 blood test has been done and you getting your injections.

Check with the nurse on Monday

Hope a goes well.

[Fallingapart0627 in reply to Nackapan]

Yes I will do and thank you! 🙂

[fbirder in reply to Nackapan]

High folate can mask one symptom of a B12 deficiency - macrocytic anaemia. This can hamper diagnosis of a B12 deficiency if you haven't already been diagnosed and if your doctor is one of those who believe that macrocytic anaemia is an essential feature of a B12 deficiency (even though a lot, possibly the majority, of those who are deficient are not anaemic).

So, if you've already been diagnosed as B12 deficiency then there's no need to worry.

However, there is evidence that high levels of folate in those with a B12 deficiency can exacerbate the neurological damage.

There is also evidence that high levels of folate can be harmful even in the absence of a B12 deficiency.

So it's best not to take very large amounts of folate supplements (folic acid, methylfolate or folinic acid).

b12science.com/B12Science/D...

[Fallingapart0627 in reply to fbirder]

Hi, my blood tests showed a low serum folate of 2.7 ( Ref range 3.9-26.8) My serum B12 is 254 ( Ref range 200-770) I have my first B12 injection on Monday due to confirmed PA but I’m not sure when to start the folic acid (5mg) 3 months supply. Thank you.

[fbirder in reply to Fallingapart0627]

Personally, I would start the folic acid on Tuesday.

[Fallingapart0627 in reply to fbirder]

Ok that’s really helpful I will do that. Thank you!

[JAMV in reply to fbirder]

Hi fbirder what do you mean by this:

There is also evidence that high levels of B12 can be harmful even in the absence of a B12 deficiency.

My understanding is b12 is safe and there is no toxic level....

[fbirder in reply to JAMV]

What it means is that I wasn't awake when I wrote that, and that nobody else has notice the mistake in the past year. It should read...

There is also evidence that high levels of folate can be harmful even in the absence of a B12 deficiency.

[clivealive Forum Support]

Whatever you do don't take the folic acid until after the B12 injection treatment has started.

Care should be taken not to give folic acid (instead of B12) to any patient who is B12-deprived, as this may result in fulminant neurological deficit.

This may help you (same guidance as in the BNF) see:

patient.co.uk/doctor/Pernic...

Management [2]

The British National Formulary (Section 9.1.2 Drugs used in megaloblastic anaemias) states

Folic acid has few indications for long-term therapy since most causes of folate deficiency are self-limiting or will yield to a short course of treatment. It should not be used in undiagnosed megaloblastic anaemia unless vitamin B12 is administered concurrently otherwise neuropathy may be precipitated.

[Fallingapart0627 in reply to clivealive]

Hi, thank you for this clivealive. I have been folate deficient at least 4 times over the last couple of years and have just been given a prescription for folic acid. Now that my PA is being taken seriously and the injections are starting, I want to make sure that I am doing all I can to help myself. The information and advice I have been given over the last week has really helped me so thank you so much to you all!

[clivealive Forum Support in reply to Fallingapart0627]

Sounds like you have an absorption problem and may have to be on a "maintenance" dose of folic acid every day - unless you don't eat your greens.

Discuss this with your doctor.

I have been on 1 – Folic Acid 400μg tablet day for more years than I can remember and have had P.A. since 1972

I wish you well.

[Fallingapart0627 in reply to clivealive]

Hi again, I think I must have a problem with absorption as my diet is generally pretty healthy. I will be mentioning the possibility at me next appointment. Thank you 🙂

[Cherylclaire Forum Support]

If you have had a positive result when tested for intrinsic factor antibodies, then this is a definite (95%) Pernicious Anaemia result. I would ask for a printout of that, as this will prevent a need for retesting which may well come up as a negative (40-60% of those with PA have tested negative) .

Martyn Hooper, founder of the Pernicious Anaemia Society, had to have 3 tests before a definitive positive, even though it must have been fairly evident by that stage that he did have PA.

GPs often say "Why do you need to know if your B12 deficiency is caused by PA, when the treatment is for the deficiency, and so is the same either way ?" - The reason I believe it does matter is that

A: any research carried out will be on those with a firm diagnosis of PA, so any resulting treatment may not be available to those without one.

B: PA has currently no cure -and so treatment should have a lifelong guarantee.

This is only my view -but you can see from this that your treatment should have started 5 years ago.

Assuming you are in the UK (?) if you have neurological symptoms, loading should continue until no more improvement can be had, then an injection every two months for life. NOT until B12 is raised to "normal" level: there is no reason to measure what has already been measured and injected into your system ! B12, once injections have started, should not be measured other than if there is reason to believe that injections are not working- for instance if a cell-level problem is suspected. Your B12 level after injecting should be high.

Keep tight hold of your PA printout - it may prove important if you move or your GP does.

[Sleepybunny in reply to Cherylclaire]

Just wanted to say that I agree with Cherylclaire that getting a print out that shows you had a positive IFA result (and a positive PCA result )would be helpful.

People on this forum have had injections stopped by a new GP because they had no proof of their PA diagnosis.

[Fallingapart0627 in reply to Cherylclaire]

Hi, yes I tested positive for IF and PCA antibidies in 2014 when I had eye problems which was diagnosed as posterior scleritis. The eye hospital in Liverpool ordered the tests. I did query with my Doctor’s over the years about the possibility of PA but was always told that my bloods were all ‘normal’ despite numerous symptoms of what I now know are PA. I have recently found out that my Great Grandmother and sister also have/had PA. I did have a copy of the letter but have mislaid it. I will ask GP or the eye hospital to let me have a copy. I do have neurological symptoms, numbness in leg but my GP is still insusting it is down to a slipped/ herniated disk. I just can’t wait to start the injections tomorrow although I am really nervous too! Thank you for your advice. X

[Sleepybunny in reply to Fallingapart0627]

Access to Blood test results (England)

nhs.uk/using-the-nhs/about-...

england.nhs.uk/contact-us/h...

Have a look at these links about GDPR legislation

bma.org.uk/advice/employmen...

ico.org.uk/about-the-ico/ne...

There should be info on your GP surgery website about GDPR.

"I do have neurological symptoms, numbness in leg but my GP is still insusting it is down to a slipped/ herniated disk"

I wonder if GP is reluctant to acknowledge the possibility of your neuro symptoms being down to untreated PA because that would mean admitting responsibility.

[Sleepybunny]

Hi,

I'm very pleased to read that after 5 years without treatment, you have finally persuaded GP to start B12 treatment.

Did they apologise for withholding treatment for so long?

"3 a week for 2 weeks initially"

In your first thread on the forum you mentioned symptoms which are usuaIly considered to be neurological eg numbness.

If you have any neurological symptoms, you should be on ...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months

There is no time limit on how long these every other day jabs can continue so GP should not stop them after two weeks if your symptoms are still improving.

Do you have any other neurological symptoms eg

tingling

numbness

pins and needles

burning sensations

insect crawling sensation

tinnitus, muscle twitches

muscle fasciculations

flickering eyelids

restless legs syndrome RLS

vertigo

clumsiness

dropping things

bumping into things

strange gait (unusual way of walking)

word finding problems

balance issues

brainfog

confusion

strange behaviour eg keys in fridge

proprioception problems (problems with awareness of body in space)

There may be other neuro symptoms on lists below.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy PN especially signs of sensory neuropathy so worth mentioning any signs of PN.

Link about PN

nhs.uk/conditions/periphera...

Make sure your GP has a list of all your symptoms and highlight any neurological symptoms.

3 a week for 2 weeks is recommended for those without neurological symptoms., followed by a jab every 2 or 3 months.

If you have neuro symptoms and GP is reluctant to give you recommended pattern of loading doses then I suggest

1)You ask them to open their BNF (British National Formulary) book at Chapter 9 Section 1.2 and then ask what is recommended for those with neuro symptoms or take a copy of BNF info below with you.

bnf.nice.org.uk/drug/hydrox...

Take a supportive friend/family member to any appointment that may involve confronting GP.

2) Write a letter to GP based on info in this link below about under treatment of B12 deficiency with neuro symptoms. Think about including BNF info and info about SACD, sub acute combined degeneration of the spinal cord.

b12deficiency.info/b12-writ...

3) Contact PAS if GP refuses to give recommended level of treatment. They may be able to intervene on your behalf.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

You need to get optimal treatment fast so worth making sure GP is giving you recommended level of treatment.

After 5 years without treatment it's possible that there may already be some permanent damage.

Is GP referring you to

1) A neurologist for neuro issues and to check for possibility of SACD

2) A haematologist for neuro issues associated with PA

NICE CKS link below advises GP to contact haematologist for advice for patients with b12 deficiency with neuro symptoms.

Have you put GP on the spot and asked in a letter to GP if they have done this? I suggest asking for copies of any letters to be filed with your medical record.

NICE CKS

cks.nice.org.uk/anaemia-b12...

3) A gastro enterologist if gut issues present?

I had some difficult experiences with specialists as sadly even some of them can show ignorance about b12 deficiency.

Symptoms Diary

I suggest starting a daily symptoms diary that tracks your symptoms over time and records when you get jabs. This could be used as evidence of improvement.

[Fallingapart0627]

Hi again sleepy bunny, no there was no apology but to be honest I sort if blame myself for not pushing for treatment as soon as I got the blood test results. Hindsight is a wonderful thing! I am just so relieved to be starting tomorrow. I will take your advice and start a symptom diary as well. Yes I have been referred to a Gastro and a Neurologist as I have been hospitalised with severe gastritis at least 3 times over the last couple of years as well as the neurological symptoms. Fingers crossed the injections kick in quite quickly! Thank you again x

[Sleepybunny in reply to Fallingapart0627]

"there was no apology but to be honest I sort if blame myself for not pushing for treatment as soon as I got the blood test results"

You should not blame yourself.

Your GP is a medical professional who should know that PA requires treatment as soon as diagnosed. People on this forum should not have to be their own doctors and resort to self diagnosis and self treatment.

I hope the PAS have been supportive in your efforts to get treatment started. Please think about speaking to them if you haven't already.

"Yes I have been referred to a Gastro and a Neurologist"

If you've already seen a neurologist, how recent was the appointment and was the neurologist aware that you had a PA diagnosis and that you had not had any treatment for 5 years?

You could ask to be referred again to neurologist to be assessed for SACD.

If you see another neurologist. ask them to check for SACD and to check your proprioception sense, this is awareness of the body in space. If you lose balance when your eyes are closed, when it's dark or your view of surroundings is blocked then this can be suggestive of proprioception problems.

Two tests that can check for proprioception problems are

1) Romberg test

2) walking heel to toe with eyes closed

Videos of these tests are on Youtube.

Vital that these tests are only done by a doctor at medical premises due to risk of loss of balance.

If neurologist does not do any tests where patient's eyes are closed then it's likely that proprioception has not been fully tested.

I suggest asking for referrals in a letter to GP along with evidence eg symptoms, test results, family medical history, extracts from UK B12 documents and PAS articles etc.

GP does not have to agree though.

Might be worth seeing neurologist privately if possible.

[Fallingapart0627 in reply to Sleepybunny]

If it wasn’t for this forum, I wouldn’t really know where to turn. I have joined the PA Society and had a quick call from someone last week, it may have been Martyn. I will ring them for more advice. Thank you again for everything x

[Sleepybunny in reply to Fallingapart0627]

Hi again,

I've read that Martyn Hooper has SACD so would be able to tell you more about SACD symptoms. PAS office is open Tues am I think but will probably be closed for part of holiday period.

I am sure Martyn would want to hear more from someone with a confirmed diagnosis of PA who was left untreated for 5 years so suggest trying to have a longer conversation with him before or after Christmas.

Blog post where Martyn Hooper talks about his diagnosis. SACD is mentioned.

martynhooper.com/2010/09/21...

Article about patient with SACD whose serum B12 was at a normal level.

ncbi.nlm.nih.gov/pmc/articl...

Article emphasises that patients with b12 deficiency need immediate treatment to prevent permanent neurological damage.

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range, in order to prevent permanent neurological damage.

[Fallingapart0627 in reply to Sleepybunny]

I will do. Thank you x

[Cherylclaire Forum Support]

Also get ferritin checked- I'm still having problems upping this to a level that is satisfactory to both GP and to Oral Medicine consultant. This is after 2 years of a daily supplement that includes 100% of required ferritin -and ignoring a ferritin- rich diet completely. I'm now hoping that a further supplement taken every other day (so an extra 50%) over three months has made the difference.

It is impossible to do all this without a GP monitoring long-term patterns and direction of travel of ferritin, folate and vitamin D. Find one that will work with you, one that you trust, because each case is different. Stay with that one if you can : they will begin to understand what you look like well, what you look like when not so well, specific visible symptoms that will be clues for them, even if they have not seen them before in other B12 deficient patients. Nurses are also trained to notice this. This is your best chance of getting the frequency that helps you maintain a level of health that can deteriorate quickly without help.

The symptoms list that they are taught to look for is a pitiful one- but in time and with help, they will learn to recognise others. They may never acknowledge the ones they can't see as being specific to B12 deficiency, but that is the fault of their flimsy education regarding vitamins. I'd never even heard of B12 before being told I was deficient in it. Previous education in this area is not as important as mutual trust. We can all learn what we need to learn. Here is a good place to start.

Luck and love

[Fallingapart0627 in reply to Cherylclaire]

Hi, I think my Ferritin was fine but will check again. Folate is low and I’m still waiting for Vitamin D to come back. I know my platelets were high but not sure what that means do will ask GP tomorrow. Thank you again for all your advice and take care x

[Sleepybunny]

There is something about platelet levels in the section "What test result means" in next link about Full Blood Count FBC.

labtestsonline.org.uk/tests...

I think medical term for high platelets levels is thrombocythaemia or thrombocytosis.

[Fallingapart0627]

Hi, yes I did see that and terrified myself so I stopped reading 😂 I will mention it to GP though. Thank you x