New to the forum

[polarbear69]

Hoping anyone can give me guidance, I'm newly diagnosed, after years of just getting on with it, in terms of been tired, i eventually found my fingers and toes so painful, it actually spurred me into going to the GPs, after a several visits and many blood tests, i was told I have PA. I was given the B12 injections loading dose, after further blood test they did not do anything to raise my levels, so i had another loading set of doses, i am now also taking iron tablets, my question is will my fingers and toes feel any better as i am struggling with my work, as i cant hold pens without discomfort. My boss thinks I'm kidding as i keep dropping things, My GP says i have to wait to see, but the stress is making me worse, I have taken a couple of weeks off work, but cant keep doing this as i will run out of Annual Leave. Is there any benefits you would be entitled to if i do have to stop working, or is it a case of just having to soldier on. Any advice would be greatly appreciated.

[Nackapan]

It takes time and regular b12. A frequency that suits you. Occupational health if there is one at your work should help.

Reasonable adjustments.

[Corney23uk]

I totally get this, and I am today just holding a pencil properly (it still hurts but not as much) after 2 1/2 months of every other day B12 injections. Painful fingers and toes sounds like peripheral neuropathy and is neurological involvement and therefore requires a different regime of B12. The BNF say this in their prescribing information. If you don't get this then sadly you could deteriorate more. You will see some detailed information on many posts on here.

Your GP sounds quite good, so worth mentioning - although it does take a lot of resources so they are certainly not keen. Benefits could be difficult as it may not be deemed long term, so I think it maybe classed as SSP.

Hope this helps a little, I totally understand how painful and limiting it can be

[polarbear69 in reply to Corney23uk]

Thanks everyone for your assistance, really appreciate your guidance

[charks]

I had a similar problem to you, I lost my hand fine motor skills. I make jewellery so it was a huge problem. I have been taking B12 for over two years and my hands still aren't right. I still drop things. But they are much so better than they were. The fact that things aren't getting better for you indicates you need much more B12.

[Cherylclaire Forum Support]

You sound as if you have nerve damage caused by B12 deficiency - for which a GP should send you to a neurologist. Meanwhile, as it will be a long wait no doubt, your GP should be treating you with the advised frequency for those who present with neurological symptoms:

this is every other day B12 injections (not tablets) until no more improvement can be gained and thereafter an injection every 2 months to maintain those gains.

Those are the medical guidelines produced for medical professionals. NICE, BNF, BCSH are responsible for the UK-based advice.

Please note: there is a suggestion that a review at around three weeks may be useful. This is not to be confused with a deadline for nerve repair. Severe nerve damage can become permanent if left untreated or undertreated - and can otherwise take up to a couple of years perhaps more. Repair can be very slow, and can take a while to show signs. In general, I would expect that, if a three-week review is required, it would be a chance to discuss with your GP how you think you are faring, whether you can feel improvements yet etc.. There is absolutely no reason to expect total nerve recovery in this timeframe !

Stay strong - you may encounter some resistance from a GP, you may well encounter some reluctance, even suspicion, from nurses. This is probably mistaken concern about "overdosing" B12 or never having administered at this frequency previously.

I did not even begin to recover until I was put on two injections a week - the closest the nurses would accept when the GP requested EOD (3 a week). My GP was so pleased when I was reviewed at three months, that she continued this frequency for another three months - much to the disgruntlement of some of the nurses !

I was then given a maintenance dose of an injection every month - unfortunately, this did not maintain those improvements for me and I had to self inject EOD to stop deterioration. I have functional B12 deficiency not pernicious anaemia though. A transport problem to cells/tissue.

Understanding the functions of the loading dose and the maintenance frequency - to comfortably hold onto these hard-won improvements, without having to gradually deteriorate each time - helps GPs to understand why patients need to be treated as individuals.

Mutual trust and a common goal are far more useful in achieving this aim than finding a GP who is an expert in PA/B12 deficiency.

[Mixteca]

As Cherylclaire advised, you do need a neurologist referral and a different treatment plan, and there is a very long waiting list - I was referred around Feb and my appointment's not until next month.

Nerve conduction tests can be done much sooner, these are important too. I was referred to neurophysiology for those, not a neurologist, so I waited around 3 months rather than 9.

[Sleepybunny]

Hi,

Might be worth joining and talking to PAS(Pernicious Anaemia Society).

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

They have a helpline, lots of useful leaflets and a page for health professionals.

pernicious-anaemia-society....

Link below outlines recommended treatment pattern for B12 deficiency in UK and also when patients with B12 deficiency should be referred to neurologist/haematologist/gastro-enterologist.

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

If you have neurological symptoms, I would expect you to be on the treatment pattern "for patients with neurological impairment".

Try to track down the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland.

Some local B12 deficiency guidelines are not helpful, see blog post below.

b12info.com/gloucestershire...

I left detailed replies on the thread "Grandmother, 88 being denied B12 injections", a few above yours which might have info relevant to you.

Lots of useful info in pinned post "Various B12D/PA resources.

Pinned posts are on right hand side of screen if on computer.

I'm not medically trained.

[Hockey_player]

My fingers and toes got better. They recommend every other day B12 shots at the beginning of treatment. If symptoms are improving, keep going at that frequency.

[FancyPants54 in reply to Hockey_player]

How long did it take at EOD for you to notice some improvement? I've had 10 injections so far and if anything my feet and lower legs are even worse at night than before I started.

I have the odd time when the hissing in my ears goes quiet, which is lovely.

[Hockey_player in reply to FancyPants54]

At the very beginning I was able to get by taking high dose sublingual supplements. I went from sleeping 16 hours a day to being an energizer bunny immediately. At that point, my toes had only gotten tingly playing hockey. In Oct. 2020, I went to the doctor because my toes hurt and tingled. I am fortunate that he recognized right away I should start B12 shots. I started with shots once per month, then tried increasing to once per 3 weeks and now once per 2 weeks. There was quite a bit of immediate improvement. My left foot has recovered. My right one still has some minor issues. I been thinking about trying every other day for a bit to see if I can get that one better too. I was not in as bad shape as it sounds like you are. My first 3 shots were Oct./Nov./Dec. 2020. Maybe I should have started with every other day?

[FancyPants54]

It hasn’t made any difference to my energy level at all. I am just as tired and weary as before. I do think it might be helping my thyroid meds to work better, with the result of me feeling that I might need to reduce my thyroid medication dose soon.

I so wished for some relief for my painful feet. Perhaps I just need to be a lot more patient. I’m self-treating, so I might be barking up the wrong tree. I won’t know until I have given it 3 months or more I suppose.

You were very fortunate to have such a great and quick response.

[EyesWideNow]

You need to be taking a copper supplement too as iron without copper can give you an iron toxaemia. Your body can’t use the iron and stores it to overload causing further damage. 1mg per day copper maybe worth a try?🤞🥰