Can I have B12 jabs before 12 week deadline?

[Brownie49]

Hello, I'm new to this group and am looking for some advice please. I have 12 weekly shots of B12 for my PA and b12 deficiency. For the last year I have asked my doctors to have my injections 10 weekly as my symptoms start to return. They have advised they cant because my blood level is over 2000, so therefore having any sooner that 12 weeks will overdose me. They advised I just have to put up with the symptoms for 2 weeks before my injection is due. Is this correct? I'm currently at 10 weeks and am flat out in bed as I just cant function, I cant get out of bed, can hardly walk without losing my balance and cant think straight and just waif to sleep.

[Sleepybunny]

Hi,

"can hardly walk without losing my balance and cant think straight "

Balance problems and confusion or brain fog are usually considered as neurological symptoms.

I suggest you write out a list of every symptom you have and highlight every neurological symptom. Worth including any symptoms that affect your spinal area.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Symptoms of Peripheral Neuropathy

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency (and also with folate deficiency) so worth listing any symptoms suggestive of it.

Links below make it clear that in UK, B12 injections can be given every 2 months if neuro symptoms present and every 2 -3 months if no neuro symptoms.

How many loading doses did you have at start of treatment?

BNF suggest that patients who have neuro symptoms should have every other day loading injections for as long as symptoms continue to improve followed by an injection every 2 months.

There is no time limit as to how long these every other day loading injections can continue. If improvement continues so should the every other day jabs.

I suspect you probably only had 6 loading injections which is the pattern of loading for those without neuro symptoms.

If you didn't have the recommended pattern of loading injections at start of your treatment, worth asking GP for another set of loading doses.

If they are reluctant to consider another set of loading injections, you could ask them to check their BNF book which gives guidance on UK treatment for various conditions. They need to look in Chapter 9 Section 1.2 at the paragraph about neurological involvement.

If GP is reluctant to increase frequency of injections then you could draw their attention to the increased risk of permanent neurological damage including spinal cord damage if under treated.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

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

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

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

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BNF Hydroxycobalamin

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

NICE CKS

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

Local Guidelines

Eacg CCG/Health Board/NHS hospital trust in UK will have its own local guidelines on diagnosis and treatment of B12 deficiency. I recommend you track down the guidelines for your area of UK and compare them with BSH guidelines, BNF and NICE CKS link.

Some of these local guidelines have not been updated for a long time and some have been updated but do not match guidance in BSH guidelines.

I hope you are not in the UK area below which has an unhelpful treatment pattern.

b12deficiency.info/blog/202...

Letters to GP

I recommend putting queries about treatment into a brief, polite letter to GP. Letters are harder to ignore in my opinion. In UK, my understanding is that letters to GP are supposed to be filed with a patient's medical notes.

Letters could contain, symptoms list, test results, date of relevant diagnoses, personal and family medical history eg if there are relatives with same condition, extracts from UK B12 documents, requests for referrals etc.

Keep copies of any letter written or received. It's useful to have a paper trail in case there is a need for a formal complaint in the future. Letters are evidence that an issue was raised with GP. I used to put a sentence in letters requesting that it was filed with my medical notes.

May also be worth copying your letter to practice manager.

See link below which has letter templates.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about what to write if you are under treated for B12 deficiency with neurological symptoms.

Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.

CAB NHS Complaints

citizensadvice.org.uk/healt...

May also be worth talking to local MP/devolved representative if struggling to get recommended level of treatment.

Referrals

If neuro symptoms present, have you been referred to

1) a neurologist?

2) a haematologist (see NICE CKS link)?

GPs can be reluctant to refer as referrals are expensive so back any request with evidence of why referral is necessary and I suggest putting request in writing. If GP won't refer you to a haematologist you could ask them to contact a local haematologist by letter asking for advice.

Warning

Sadly there is a lot of ignorance about B12 deficiency among some GPs/specialists so be well prepared to fight your corner.

Self Treatment

Some on forum resort to self treatment but my personal view is that this is an absolute last resort. I was however forced to treat myself when all efforts to get treatment from NHS failed.

"I have 12 weekly shots of B12 for my PA and b12 deficiency"

I suggest you get written proof of your PA diagnosis as some forum members with a PA diagnosis have had injections stopped and when they queried this, they were told there was no proof of the PA diagnosis in their records.

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

Have you considered joining and talking to PAS?

They can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership

pernicious-anaemia-society....

There are a lot of useful articles/leaflets on PAS website that you may want to print out and pass to GP. You would need to be a PAS member to access some of them.

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest.

healthunlocked.com/pasoc/po.....

Latest PAS news item about contacting NHSE about treatment concerns during pandemic

pernicious-anaemia-society....

I started a thread about this in last few days which has some useful contact details.

healthunlocked.com/pasoc/po...

More B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

I am not medically trained.

[Brownie49 in reply to Sleepybunny]

Thank you Sleepybunny . I had the correct loading doses at about 3 years ago. I booked by appointment 3 days to earlier to the 12 week dose and I was sent home and made to make an appointment in 3 days time. I also have hyprothyrodism which my doc refused to accept I had, all I get is its menopausal symptoms if you think its something else I suggest you go private! My folate and ferratin is always low, I've asked should these not be above mid range but I'm told it's ok because it's on the normal range. I can't change doctors as they are all full. Its worrying that we are putting our health into the hands of the over stretched NHS.

[Sleepybunny in reply to Brownie49]

I've added some more info to my original reply.

[Sleepybunny in reply to Brownie49]

"They have advised they cant because my blood level is over 2000, so therefore having any sooner that 12 weeks will overdose me. "

What a load of .................................

My understanding is that it's not possible to overdose with b12 as excess passes out the body in urine (I'm not medically trained though).

A form of B12 is used in the treatment of cyanide poisoning at levels far beyond the levels given to treat B12 deficiency.

Look at the section on treatment for cyanide poisoning in next link

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

PAS has a leaflet "Treatment is for Life" which might be worth printing off for your GPs if you are a PAS member.

I also suggest reading and printing off the following articles/leaflets.

Testing B12 during treatment (PAS article)

pernicious-anaemia-society....

Testing B12 during treatment (English article from Dutch B12 website)

stichtingb12tekort.nl/engli...

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

(English article from Dutch B12 website)

stichtingb12tekort.nl/engli...

Misconceptions about a B12 deficiency (English article from Dutch B12 website)

stichtingb12tekort.nl/engli...

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

I think your GPs have some misconceptions about B12 deficiency.

I suggest you consider joining PAS if not already a member, tell them what GP said and ask them if it's possible to overdose on B12.

You could write a letter to GP refuting what they said about overdosing but GPs may see this as confrontational.

"I had the correct loading doses at about 3 years ago"

Do you mean you had every other day loading injections for several weeks or even months?

If yes, I'm pleased that they gave you appropriate loading injections but they do not appear to be treating you appropriately now.

"have advised they cant because my blood level is over 2000, so therefore having any sooner that 12 weeks will overdose me"

If in a similar situation, I'd ask them for a copy of the guidelines that say not to treat if over 2000 although this may be seen as confrontational.

Weigh up the risks of confronting your GPs with the risks of what will happen if you are not treated adequately.

Symptoms Diary

Do you keep a symptoms diary which tracks changes in symptoms over time and if and when any treatment is received?

If not might be worth starting one.

It can be useful evidence to show GP of improvement or deterioration in symptoms.

It can be using in seeing trends eg how long after an injection do your symptoms start to return/get worse.

Over time, are your symptoms slowly getting worse?

Are you getting new symptoms?

Any new neurological symptoms especially any affecting your spine?

[Brownie49 in reply to Sleepybunny]

Thank you, these are very interesting reads. I can go to my next appointment a bit more knowledgeable now.

[Nackapan]

No it is wrong. B12 levels should not be checked once on injections

Yo should get then at least 2 monthly with neurological symptoms

Get information and push for what you know you need.

P.s I was so slow in typing I did not see tour excellent reply from sleepybunny.

I was told alot of my symptoms were the menopause. They were not.

Fight your corner to get what you need.

Meanwhile consider self injecting.

Youve done well tk cope on 3 monthly up to now.

My daughter has just had her regime changed to 10 weekly.

Gps wouldnt go to 8 weekly as pet bnf guidelines!!

Gps need tk know how many self inject and at what frequency.

Even if its anonomous

[Brownie49 in reply to Nackapan]

Thank you,

[Brownie49 in reply to Nackapan]

May I add, i havent done well up to now, I have been fighting every 10-12 weeks until i was told to stop as there is nothing they can do. I come out the doctors crying each time because I tell them I cant go on like this and have no quality of life. Another symptom I have is my lips go blue.

[Nackapan in reply to Brownie49]

I would in that case self inject inbetween your Nhs ones . Alot of us have to do that. Do write in though . Or contact PAS fir help if z member Stress is no good for anyone. I thought you meant symptoms were at bay for the first 9 weeks and you were doing okay up to then.

That's all I meant. Its good to havd some positivity and good results from injections .

I'm still waiting for a symptom free day too.

[Brownie49 in reply to Nackapan]

I'm so sorry, i really didn't mean for my comment to offend. I appreciate you help, comments and wealth of knowledge. I should of said I was ok with the loading doses and I'm ok up to before 10 weeks, then I start going down hill. Like you I'm praying for a symptom free day too, I would say life, but baby steps!!

[Nackapan in reply to Brownie49]

Yes let's hope improvements made .Take care

[Litatamon in reply to Brownie49]

Sleepybunny probably already posted these links. Just want to make sure you see them, that they are highlighted as I find them both concise and not threatening for a doctor to read -

stichtingb12tekort.nl/engli...

Between #4 and 5 information about erroneously testing during treatment.

---

And this one, about following symptoms not serum levels -

stichtingb12tekort.nl/engli...

All the best to you. How frustrating.

[Sleepybunny]

Hi,

"Another symptom I have is my lips go blue. "

NHS link about blue lips

nhs.uk/conditions/blue-skin...

Blue lips can be a sign of lack of oxygen in the blood.

What has your GP said about this symptom?

Have you been referred to a specialist who deals with circulation problems eg vascular specialist, heart specialist, maybe a haematologist?

B12 deficiency can be associated with heart and vascular problems.

See section on vascular symptoms in link below.

b12deficiency.info/signs-an...

Blog post from B12 Deficiency Info that might be of interest (quite upsetting to read).

b12deficiency.info/blog/201...

US link about PA

rarediseases.org/rare-disea...

B12 deficiency can be associated with higher levels of homocysteine. High levels of homocysteine are associated with an increased chance of stroke.

Have your homocysteine levels ever been checked?

labtestsonline.org.uk/tests...

Make sure any specialist you see is aware of how often you get B12 injections. You could ask a direct question eg Would more frequent injections help me because I have neurological symptoms?

There's always the chance that they might recommend to your GP that injection frequency is increased.

There is also a chance that they might suggest the opposite....as I said before there is a lot of ignorance about B12 deficiency.

More about neurological symptoms

Neuro symptoms can include

tingling

numbness

pins and needles

burning sensations

insect crawling sensation (also known as formication)

electric shock sensations

Unusual sensations are known collectively as paraesthesia.

tinnitus

muscle twitches/spasms

muscle fasciculations (ripple like movements)

flickering eyelids

restless legs syndrome (RLS)

vertigo

clumsiness

dropping things

bumping into things,

strange gait (unusual way of walking)

word finding problems (nominal aphasia)

balance issues

brainfog

confusion

proprioception problems

Proprioception

If you see a neurologist, ask them to test your proprioception sense. Problems with proprioception can be associated with B12 deficiency. Proprioception is awareness of where the body is in space.

Two tests that can help to check proprioception are

1) Romberg test

2) Walking heel to toe with eyes closed

These tests should only be carried out by a doctor at medical premises due to the risks of injury from loss of balance. Videos of these two tests and others that check proprioception on Youtube.

If neurologist does not ask you to do any tests with your eyes closed then it's unlikely that proprioception has been fully tested.

A person with proprioception issues may be able to walk heel to toe in a straight line with their eyes open and then be unable to walk heel to toe without losing balance or veering into a wall when they close their eyes.

Links below mention position sense which I think is another term for proprioception.

These articles are aimed at medical professionals and researchers and may contain upsetting details.

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

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

If your balance is worse when your eyes are closed, it's dark or night time or your view of surroundings is blocked these could be clues that there may be an issue with proprioception.

Films about B12 deficiency

b12deficiency.info/films/

[Brownie49]

Thank you for your advice. I've managed to speak to a doctor today asking for my jab to be brought forward due to my symptoms. His response was those symptoms have nothing to do with PA, I advised whilst I'm not medically trained I have researched and as these are neuropathy I am able to have my jab from 8 weeks. He replied no it's all based on bloods and yours is over 2000 so you're fine! Think its time to write that letter to the surgery quoting your links. It's a worry we have to research our own health. It makes you wonder how people are suffering due to doctors lack of knowledge.

[Sleepybunny in reply to Brownie49]

"His response was those symptoms have nothing to do with PA"

Perhaps you could send him a copy of the PAS symptom list below with all your symptoms ticked and any others added at bottom of list?

pernicious-anaemia-society....

"as these are neuropathy I am able to have my jab from 8 weeks. He replied no it's all based on bloods and yours is over 2000 so you're fine!"

You could include a direct quote from BNF about treatment for those with neurological involvement.

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

Both BNF patterns of B12 treatment, for those with and without neuro symptoms, allow for maintenance injections to be given every 2 months.

If you decide to write a letter to GP, I suggest you look at the suggestions in this link about writing a letter if under treated for B12 deficiency with neuro symptoms present.

b12deficiency.info/b12-writ...

Have you managed to track down the local guidelines for your area on treatment/management of b12 deficiency?

It might explain why GP is refusing to bring your jabs forward.

Think about joining PAS if not already a member as they should be able to suggest useful info to pass on to GP.

[Mandy223]

I have to get mine done 8-10 weeks apart reduced from the 12week because of the return of my symptoms within 5 weeks but my levels drop off slowly from that point and low enough to get the injection between the 8-10wk mark .

[Brownie49 in reply to Mandy223]

You're very lucky your doctor listens to you. Because my levels do not drop but remain over 2000, my doctors think I'm ok and therefore go by my bloods rather than my symptoms. I am 2 weeks away from my injection, I've called telling them I'm not functioning but I have to wait another week on top as they've no appointments. Yesterday I wrote a letter containing links and evidence why I should have them sooner. I'm praying they will allow it.