Neurological Symtoms how to get regular injections until improvement advice please

[Nic878]

My partner is having his 5th loading injection tomorrow, he's also having an appointment with GP in morning. He has neurological symtoms and I'm wondering if anyone has had any success getting the every other day injections from NHS? Any ideas what to say other than quoting NICE guidelines? If they won't do them what are our options please

[wedgewood]

I had neurological symptoms after loading doses but could get no more than 1 injection every 3 months because I was told by my GP that more would be toxic . ( unbelievable, but true!)

Unfortunately,I knew nothing about the Pernicious Anaemia Society and this forum then . later I learned it was possible to self inject , but too late , because I now have a neurological symptom that is irreversible. Time is of the essence. So if you don’t get the injections you need , come back here and get the information you need for self injection. Best wishes.

[HeartyGilly]

write down the NICE Guidelines that alternate day injections should continue until there is no further improvement and give it to the GP. If the GP does not order them to continue raise a complaint with the Practice Manager. Get as much info as poss from the PA Society. Join the society and ask for their help.

[Nackapan]

I also had severe neurological symptoms. Had my loading doses and was supposed to then have 3 monthly.

I lasted 5 weeks.

During this time using high dose b12 sprays and tablets that didn't work for me .

I did go back on every other day at the surgery until no more improvement.

There was alot of opposition from nurses mainly even though prescribed.

The Gp read the NICE guidelines whilst I was in the room.

I'd actually booked the b12 injection in 💉 I got advice on here .

Mention PAS

If you have .neurological symptoms you should gets referral to a neurologist .

I also had a brain CT and brain MRI .

Specialists that can rule other things out.

If your partner has a rich b12 diet it must be an absorbtion problem.

Or caused by medications.

Surgery

The most common being Pernicious Anaemia.

Hard to diagnose though.

Several tests often needed.

Were any reasons suspected ?

Lots of links recently posted by sleepybunny to read.

And resources online .

It wasn't easy as I initially got alot worse and one Gp nearly stopped my injections completely when a nurse refused to do it.

I didn't bombard them with information.

I was persistent though despite being so ill.

Was on no other meds and nothing else was found to treat.

Hopefully if your partner is having

A good clinical response the Gp won't get scared .

They simply do not get enough training beyond acting on blood tests.

An open mind needed.

They might seek advice from a neurologist to 'cover their back'

They later did this with me. Just by email!! Not to the ones I'd actually seen .

Go by how your partner is ..

By blood results you have . Print a copy off.

Any improvements to whatever their symptoms are as not mentioned .

Keep a log.

Stick with one Gp that listens ,also for continuity which is lacking at present .

Also make sure anything else low is treated .

I.e

Folate ,iron vit D seen on blood results.

Or a standard multivit shoukd support healing.

Hope your partner makes improvements soon.

Healing is not in a linear line .

Self injecting . Plenty of help on here as per your reply from Wedgewood.

[Sleepybunny]

Hi,

I suggest putting concerns about treatment into a letter as I feel this is a harder to ignore.

Having a paper trail is useful if you need to raise a formal complaint. Always keep copies for yourself.

See Point 1 in next link

How to write letters to GPs about B12 deficiency

b12info.com/writing-to-your...

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.

healthunlocked.com/pasoc/po...

Next link outlines UK recommended treatment for B12 deficiency.

With neuro symptoms, I would expect you to be on treatment pattern "For people with neurological impairment.

cks.nice.org.uk/topics/anae...

Current NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

NICE are developing new B12 deficiency guidelines to be published in 2024.

nice.org.uk/guidance/GID-NG...

nice.org.uk/guidance/indeve...

There are forum threads about this.

Local B12 deficiency guidelines

I urge UK forum members to find out what's in the local B12 deficiency guidelines used by their ICB (Integrated Care Board) in England or Health Board in Wales/Scotland.

If you can't find them online or by searching forum posts then best bet is to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines are being used locally and for a link to or copy of them.

Some local guidelines are not helpful. I hope you are not in the area discussed in blog post below which has a poor reputation on this forum as to how B12 deficiency is managed.

b12deficiency.info/gloucest...

Local B12 deficiency guidelines are likely to change when new NICE guideline is published so keep an eye on them.

I've written a lot of detailed replies on this forum so may be worth looking at these.

I left detailed info in recent thread "tingling feet and hands".

healthunlocked.com/pasoc/po...

Should be a lot more info in pinned post "Various PA/B12D Resources".

Pinned posts are on right of screen if using computer.

I'm not medically trained.

[Cherylclaire Forum Support]

Like Nackapan , I found the three-month wait for the maintenance injection impossible to do and went back. My GP could see that the B12 injections were not having the desired effect, and that in fact I was rapidly getting worse.

Because she had seen this once before with another patient a decade ago, she knew to get bloods tested for methylmalonic acid level (MMA). In spite of the B12 loading and then maintenance injections giving me high serum B12 levels, my MMA was also high. She diagnosed functional B12 deficiency and I was told that I would get three injections a week (EOD).

In fact, I only got two a week - since the nurses were too busy to fit in any more. As in Nackapan's case, the nurses were really not comfortable with this frequency, even though this was my GP's request and based on advice given to her from secondary care consultants. Reluctant as they were, the results were undeniable: everyone noticed the difference almost immediately.

Because the results were so clear, she continued this treatment for six months. Unfortunately, I eventually had to self inject because I could not function on the maintenance frequency of one injection a month which was then offered.

It took three years for my MMA to drop into range, about two years for my ferritin and folate to get to good levels and stabilise, and vitamin D was given on prescription along with other medication because I had osteoporosis of the spine. All worth having checked, along with thyroid. Mine were regularly monitored by my GP for years.

So it is possible to find an experienced GP who is comfortable about requesting EOD B12 injections - but expect the nurses to be either reluctant/ suspicious/ annoyed. Or at best, they will google "B12 and toxicity", realise there is no danger... and then admit they did that, once they recognised the benefits !

The guidelines for doctors are clear about the frequency required for those presenting with neurological problems- every other day (EOD) injections. Less clear about the expected length of time it takes for nerve damage to have completed healing. I would imagine this could be a lengthy process, depending on severity, extent and longevity of the damage.

It could take some time for a neurologist appointment to come through - so as time is of the essence, a GP should start recommended specified B12 injection frequency immediately and not wait for a neurologist to determine this first. As wedgewood has said, damage left untreated/undertreated can be irreversible.

Luck and love.

[Nic878]

Well we went to drs I got his blood tests printed out and spent 20 minutes arguing with the Dr, showing him nice guidelines, he even tried to say that 123 level was borderline, said all his symptoms weren't coming from that. Im going to do a complaint letter but I'm fuming to be honest he said they were over treating him not under

[Nackapan in reply to Nic878]

I was told a level of 106ng/l not that low . Bottom of range was 200ng/l

.Didn't see that Gp again.

Can you see another G.p ?

If his symptoms are not b12 related what are they from ?

So 1 more b12 to go and what does this doctor propose as a maintenence?

I had to go through all 6 Gps in my practice .

I woukd set your energy on this process .

Make another appointment with a different G.p.

Give 5 worst symptoms

Ask for a referral

Say worried about permanent damage if guidelines arnt followed .

[Marlboro123]

Beggars belief. I can understand you want to do a complaint letter and i would have done the same. A 123 level is not borderline, i was also full of neuro issues and when my g.p stopped my e.o.d i was furious. I decided s.i was the only way forward and for me it was the best thing i have done. It has been a difficult journey but i made that decision based on what was best for my health. The g.p has no power to stop me. I hope you can find a way forward that is right for you and your husband. It can be an amazing feeling to take control of ones health. The first g.p i saw said my tremor was part of the aging process, i was 52 and he looked like a schoolboy. Blood test after blood test, scan after scan they had no idea and even when they decided to test b12 they got the treatplan plan all wrong. Funny how my tremor got better with b12. Hopefully my s.i plan will improve other neuro problems in time but things can get better, but you need a plan. Good luck

[Sleepybunny]

Hi again,

Has he been referred to a neurologist?

There's no guarantee that this will lead to better treatment but it might....ignorance about B12 deficiency exists among some specialists as well as some GPs.

I've already posted this link in my other reply but putting it here as it outlines when people with B12 deficiency should be referred to a neurologist/haematologist/gastro-enterologist.

cks.nice.org.uk/topics/anae...

If the GP is reluctant to give adequate treatment, you could discuss the increased risk of developing permanent neurological damage if treatment is delayed/inadequate. In severe cases of B12 deficiency, the spinal cord can be affected.

You could give this article to the GP.

PAS article about SACD.

pernicious-anaemia-society....

"spent 20 minutes arguing with the Dr, showing him nice guidelines"

I suggest when you have the time and energy, consider sending a letter to GP. Information passed on verbally might not get recorded. GP surgeries are supposed to file letters to GPs with medical notes. See letter writing link in my other reply.

Has your partner considered asking to record appointments?

If he has brain fog/concentration/fatigue issues they should allow this on disability grounds.

Article about recording appointments

bma.org.uk/advice-and-suppo...

Have a look at the thread on "Patient Safety" in my other reply. This has some useful info if you are unhappy with GP/treatment etc.

Some UK forum members turn to treating themselves when NHS treatment is not enough.

Some get extra B12 injections from private GPs or beauty salons (expensive). Some try taking high dose oral B12 (1000mcg or higher) but this doesn't work for some people and some as a last resort try self injection (SI). There is a pinned forum post and various forum threads that mention SI.

[Sleepybunny in reply to Sleepybunny]

Have you managed to find the local B12 deficiency guidelines for your ICB or Health Board?

[Nic878 in reply to Sleepybunny]

Iv tried to find them online but struggling abit to be honest, it's tricky im balancing a new baby and looking after my partner he's struggling with getting worse before he gets better.

[Sleepybunny in reply to Nic878]

Hi,

I'm sorry to read that you're struggling with balancing all the demands on you. You deserve a medal and it's great that you are supporting your partner.

It can take some people a while to start improving after starting treatment especially if they have been ill for a long time. Many on here report that they feel worse before starting to get better. It's vital that he gets adequate treatment to make the best and quickest progress possible.

If you don't mind forum members knowing your ICB (Integrated Care Board)- England or Health Board - Wales/Scotland then forum members might be able to help you find them.

I think forum members should protect their privacy/identity online. Threads from this forum can appear on NHS website.

If you want to change the setting of your thread to a more private one...

1) Go to original post. click "More" then click "Edit".

2) Scroll down post, click "Share" then click "Community Only" then "Post".

List ICBs in England

nhs.uk/nhs-services/find-yo...

Try searching posts on this forum with term "local B12 deficiency guidelines".

Click on "Posts" tab (top left of screen on computer).

This should bring up search box near to top right of screen on computer.

If you can't find them try submitting a FOI (Freedom of Information) request to your ICB or Health Board asking which B12 deficiency guidelines they are using and ask for a link to or copy of them.

You can also submit a FOI to your GP surgery but bear in mind that this might irritate them.

A couple of links that might be helpful.

Home Start (Supports families with young children)

home-start.org.uk/

Carers UK

carersuk.org/

[Nic878 in reply to Sleepybunny]

Thank you so much for your help I have found the local guidance and included this in my complaints email. We met a lovely nurse yesterday who gave my partner his last loading dose. She sadly my partners results of 123 are not borderline and she also looked at his previous result from 2018 which the GP couldn't see apparently (amazing isnt it) she stated that it was 202 which she said was low although not lower enough to be classed as b12 deficiency by nhs guidelines. She went on to say she believes same as ourselves that he has had this a long time and it explains all of his symtoms

[Sleepybunny in reply to Nic878]

It's good that he has an understanding nurse and there's always the hope you can educate the GP or find another GP who is more knowledgeable about B12 deficiency.

Changing GP surgeries is easy but is no guarantee that treatment will be better.

nhs.uk/nhs-services/gps/how...

These links might be worth passing on to both GP and nurse.

1) PAS website had page for health professionals.

pernicious-anaemia-society....

There is no charge for them to join PAS as associate members.

2) Club B12 is a group of researchers, doctors and other interested people looking into B12. They have regular zoom meetings and recently hosted a B12 conference in UK.

club-12.org/

3) A good article to pass to health professionals

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

I wish you both good luck in tackling this condition together.

Some people can experience a drop in potassium levels when they start treatment. Might be worth asking GP/nurse about this to see if his potassium levels need checking.

Low potassium (Hypokalaemia) is listed as a possible side effect of B12 injections in next link.

bnf.nice.org.uk/drugs/hydro...

Some forum members eat plenty of potassium rich foods in their diet eg bananas, broccoli, beans etc. Personally I would not take potassium supplements unless prescribed them by GP as excess potassium may cause harmful effects.

Has he got recent results for folate, ferritin (and other iron tests) and Vitamin D?

Forum members often report deficiencies in these as well as B12 deficiency.

It's also quite common for forum members to have thyroid problems.

Might be worth putting any thyroid results on Thyroid UK forum on HU.

[Sleepybunny in reply to Sleepybunny]

Forgot to ask what does the doctor think has caused his low B12?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

Has he been tested for PA?

Testing for PA

pernicious-anaemia-society....

For coeliac disease?

NICE guideline Coeliac disease below suggests anyone with unexplained B12, folate or iron deficiency should be tested.

nice.org.uk/guidance/ng20

If he was tested and got a negative result in coeliac tests then check guideline above to see if recommended diagnostic process was followed.

People with coeliac disease can get a negative result in tTG IgA test (usual test for coeliac) if

1) they have IgA deficiency

IgA is an immunoglobulin

Doctors should test Total IgA as well as tTG IgA.

2) they were not eating enough gluten in their diet before blood tested.

More on diagnosis of coeliac disease on Coeliac UK website

coeliac.org.uk/information-...