B12 advice

[Green4me]

Hi all ive had my 2weeks of b12 loaded and for the past 5-6weeks felt really good in myself best I have been for a while and loving it after feeling so low for years with aches and pains in my bones but all of a sudden and quick I feel back to Square one all my aches and pains back it's so horrible after feeling good again I called the doctor and he now says I can have B12 every 10 week instead of every 12 but that a few weeks away and I'm struggling any advice welcome.

[wedgewood]

T sounds as though you need more regular B12 injections . Do you have a diagnosis of Pernicious Anaemia? P.A. patients are all different , and require B12 injections more regularly than GPs prescribe . E.G . I need a weekly injection to keep clear of symptoms,

Doctors have a very poor understanding of P.A. which can make our lives miserable , Some P.A, patients can benefit from B12 nose or mouth spray or B12 sub- lingual lozenges So do give those a try , Otherwise you might have to resort to self-injecting B12 like I did 8 years ago . ( I will give you information on that if you find it necessary It is easy and cheap) ) . Do not worry about overdosing on B12 . You cannot . Best wishes .

[Green4me in reply to wedgewood]

Hi thank you for information I have not really had much information from my doctor other than after tests B12 & iron is very low and causing all these problems I've had for several years now including sharp pain that to me seemed to be the heart I thought my time was up

but Doc said muscle spasms, sciatica symptoms in bottom of spine affecting hips and legs painful joints hands and feet ankles swell I have tried to get regular B12 as it seems like a miracle when it takes affect but they refuse me anymore than every 10 weeks. I didn't know you could get it to inject yourself ive looked into info on oral supplements but most say injection is more affective as I'm in so much pain I'd rather give injections a go so any information would be greatly appreciated.

[wedgewood in reply to Green4me]

I’ve replied to you in Private messaging .

[Sleepybunny]

Hi,

BNF guidance below from UK suggests that people with B12 deficiency with neurological symptoms should be on the following treatment pattern...

A B12 loading injection every other day for as long as symptoms continue to improve then a maintenance injection every 2 months .

There is no set time limit for every other day loading injections if neuro symptoms present.

Could be weeks even months of them.

BNF Hydroxocobalamin

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

Some links I post may have details that could be upsetting.

Do you have any neurological symptoms?

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

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

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms present.

Some UK forum members resort to treating themselves if NHS treatment is not enough but I see this as a last resort.

PAS membership is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Some UK B12 documents/articles

BSH Cobalamin and Folate Guidelines (detailed, aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

NICE stands for National Institute of Health and Care Excellence

NICE CKS B12 deficiency and Folate deficiency

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

Local B12 deficiency guidelines

I urge UK forum members to find out what's in their ICB's or Health Board's local B12 deficiency guidelines. ICB stands for Integrated Care Board. ICBs replaced CCGs (Clinical Commissioning Boards) in July 2022.

See blog post below if you want to know why I suggest this.

b12deficiency.info/gloucest...

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.

Two useful B12 books

What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper founded PAS (Pernicious Anaemia Society).

UK BNF treatment info is out of date in book. See BNF hydroxocobalamin link.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[Green4me in reply to Sleepybunny]

Thank you there is so much information here to look at and I will as I'm learning so much here it's very helpful.

[pitney]

Keep trying to get more treatment , agree totally with wedgewood and Sleepybunny👍 hope you start to feel better soon

[Green4me in reply to pitney]

Thanks Pitney there is so much info here I'm so glad people understand and are able to offer support we feel lost sometimes when we don't know what's going on in our own bodies.

[pitney]

I think everyone on here has had that feeling of being totally lost and abandoned by the health system , a lot of us have had to feel our way along the treatment route and some things work for some people but not others, personally I would say just do not give up, eat as healthy as you can, rest when you need to, don"t feel bullied into accepting health issues and if you don"t feel right keep going back . It can take along time to notice any improvement and some people unfortunately still get a lot of symptoms even with treatment (Me for one) but take it a day at a time work out what seems to help you and I find keeping a symptom diary is a good back up for me when I need a trip to the GP . Everyone here are a great help and we all have a moan at times😂 as I said good luck on your journey and hope you feel better soon.Best Wishes

[Green4me in reply to pitney]

thank you and good advice about the diary and logging things what have I got to lose lol I'll be hanging around here so let me know you find a cure🤞good luck

[ssiddi2]

i was in a similar situation. had to revert to having weekly doses and been doing it ever since

[Green4me in reply to ssiddi2]

hi ssiddi2 im wishing I could have weekly doses too Dr got annoyed when I asked for sooner than 10 weeks told me I'm lucky as they usually stick to 12 week injections after the loading doses. I'm struggling it's not good.

[Sleepybunny in reply to Green4me]

Have you tried asking them why they normally stick to 12 weeks?

Doctors can have some strange and wrong ideas about B12 deficiency.

See Mayo Clinic article.

Knowing the reason why can make it easier to argue against it.

Have you got any neurological symptoms? See symptoms lists in my other reply.

If yes to neuro symptoms, you could point out to GP that BNF suggests a different pattern of treatment to the one you've been given.

Your GP can check BNF info online or ask them to get out their BNF book out and look in Chapter 9 section 1 sub section 2 at the treatment pattern for those with neurological involvement.

Maybe take a copy of BNF info with you.

If you keep a daily symptoms diary, this could be evidence that you need injections more often if it shows your symptoms return/worsen before the next injection.

Have you managed to find the local B12 deficiency guidelines for your area yet?

Try searching forum posts, an online search or submit a FOI (Freedom of Information) request to your ICB or Health Board website.

I thinks it's a good idea to protect your privacy. If you don't mind people knowing your ICB/Health Board, someone might be able to help you find the local guidelines for your area.

Threads from HU can appear on NHS website.

You may want to change your thread to a more private setting so only visitors to this forum can see it.

To do this

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

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

GPs and other doctors are allowed to use their clinical judgement to prescribe off licence.

gmc-uk.org/ethical-guidance...

[Green4me in reply to Sleepybunny]

hi Sleepybunny I didn't bother to ask why 12 weeks he was a miserable so & so, and I only have about 3 off that list often I get migraine foggy head most days forgetful Struggle to make a fist with my hand as fingers hurt and feels inflamed as do ankles feet I walk like a robot most of the morning b12 injections are the only thing that made me feel better just didn't last long enough sadly I'm so gutted.

[Sleepybunny in reply to Green4me]

"I get migraine foggy head most days forgetful"

That's at least three neurological symptoms.

You could try asking GP politely (in a letter as harder to ignore in my opinion) if you can have the pattern of loading injections recommended for those with neurological involvement in BNF Chapter 9 Section 1.2 which is every other day loading injections for as long as symptoms continue improve (with no set time limit).

I'm assuming you only had 6 over two weeks which is the BNF pattern for those without neuro symptoms.

Too many of us have met miserable so and sos in the medical profession...

If your GP is sniffy about restarting loading injections, you could mention in a letter that inadequate treatment of B12 deficiency increases the risk of permanent neurological damage which can in some cases affect the spinal cord.

PAS website has a leaflet/article about SACD, sub acute combined degeneration of the spinal cord.

pernicious-anaemia-society....

I am not saying you have SACD, I'm not medically trained.

I am saying that your doctors, whether GPs or specialists, should be aware that SACD is a potential consequence of B12 deficiency. Mentioning SACD may make them sit up and take more notice of you....could also irritate them.

Some UK forum members run out of energy fighting NHS to get more treatment and turn to other ways including

seeing private GPs for extra injections (expensive).

using high dose oral B12 tablets or sprays (doesn't work for some)

nasal B12 drops

Petition

There is currently a petition to get injectable B12 available over the counter in UK.

change.org/p/dr-june-raine-...?

Tracey Witty of B12 Deficiency Info has campaigned on this issue for 8 years.

b12deficiency.info/eight-lo...