VB12 Treatment

[Chelsea01]

I am a new member and was diagnosed in April this year. I had 6 loading doses during May but my symptoms didn’t improve. I have pressured my doctor to repeat the loading and have had 3 this week, with 3 more to follow next week. My symptoms are: fatigue, muscle weakness and various neurological issues. I am concerned that I will not improve with only one treatment every 3-months!

[Sleepybunny]

Hi Chelsea01,

Welcome to the forum.

Have a look at the thread below yours started by Lysistrata.

I left a lot of useful links on that thread including some information that might help you persuade GP to consider more frequent injections.

"various neurological issues"

With neuro symptoms, I would expect you to have had the following pattern of treatment

A B12 loading injection every other day for as long as symptoms continued to improve (could be weeks even months of loading injections) then a maintenance injection every 2 months.

I suggest you point out to your GP that the BNF entry on hydroxocobalamin suggests this pattern for those with "neurological involvement".

BNF hydroxocobalamin

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

Your GP can also find this information in their BNF book Chapter 9 section 1.2

There are lots of UK forum members who cannot manage on NHS treatment for B12 deficiency and some resort to self injection.

There are forum threads about self injection.

If you have a PA diagnosis or think PA is a possibility, worth joining and talking to PAS who can offer support and pass on useful info.

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.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

See Point 1 in above link about being under treated for B12 deficiency with neuro symptoms present.

Treatment for B12 deficiency should be prompt and adequate.

Inadequate treatment increases the risk of developing permanent neurological damage including damage to the spinal cord.

NHS Complaints

patients-association.org.uk...

Care Opinion website

careopinion.org.uk/

Local MP/devolved representative may be worth talking to if struggling to get adequate treatment.

A few go to the Press if unhappy with treatment.

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

The experience of many on this forum including myself is that B12 deficiency is not as well understood as it should be among some GPs, specialist doctors and other health professionals.

I would add more but have run out of steam due to the heat.

Please read the thread below yours as I left info about symptoms, causes, UK B12 documents, hints on managing unhelpful GPs, B12 books, B12 films, B12 websites etc...

I am not medically trained just someone who suffered from unrecognised B12 deficiency for over 15 years and who couldn't get adequate treatment.

[Chelsea01 in reply to Sleepybunny]

Thank you Sleepybunny, you’ve been most helpful!

[wedgewood]

I wish you all the best in getting adequate treatment I’ve been in your position , and did not manage to get the treatment I needed . It’s made more difficult by feeling very unwell of course . I will send you information that will help you to self-inject . This is easy and cheap ( about £1.60an injection everything included ! Best wishes .

[ClareP5]

Need to go every other day until no further improvement with symptoms. I still have to inject EOD - 2 years on! Any less and I start to drift downwards again. GP doesn't believe me, so I self-inject - scary the first few times, but you soon get used to it! And the improvement in my physical and mental health is fantastic. So go for it!

[Sleepybunny]

You might also be interested in the petition to get injectable B12 available over the counter in UK.

Link to petition

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

Tracy Witty of B12 Deficiency Info website has been campaigning to get injectable B12 available OTC in UK for at least 8 years.

Registration to her website is required to access the blog post about her campaign.

b12deficiency.info/eight-lo...

This Bangor Uni link mentions a bit about her campaign.

bangor.ac.uk/health-science...

You might also find this article in British Journal of General Practice about self injection of B12 interesting.

Patient Safety, Self-injection and B12 Deficiency: a UK Cross-sectional Survey

bjgp.org/content/early/2022...

[EllaNore in reply to Sleepybunny]

I wish the US was as knowledgeable as the UK. My loading dose was one weekly for 3 weeks and then once a month. I was suffering terribly, so I didn't wait. I just took the info I found here and ran with it. Got my own b12 and inject daily. I hope I can back off to EOD or even once a week at some point. But for now it's daily. Good luck!!!

[Scott-rock]

I’m still improving, 4 months on, after starting every other day injections. GP thinks I’m supra-dosing. But is not saying anything more about it.

He does not fully understand how to treat long term deficiency and damage.