How long do b vitamins take to work - Pernicious Anaemi...

Pernicious Anaemia Society

31,973 members23,121 posts

How long do b vitamins take to work

Cookiedough2022 profile image
7 Replies

Hi guys I hope you can give me some hope. I’ve had bilateral paresthesias in my feet and lower legs for a good year now and 2 months ago I realised that b 12 deficiency is a strong possibility. ( I’ve had loads of other treatment previously from chiropractor, physio and doing lots of core strengthening. MRI scan of lumbar and calf NAD and nerve conduction tests NAD.) also naproxen and amitriptyline from GP no use. I looked up my last blood test 378 b12 so I started taking 5000mg a day of b 12 lozenges ( seeking health) and a string b complex vitamin. How long do I wait to see results? I have no change in symptoms yet and starting to loose hope. Im speaking to GP in 3 weeks and not sure whether I just need injections? Are they much better? Im also eating really well with lots of gut foods like kimchi, kefir, kombucha, chickpeas lentils , sauerkraut etc to help with absorption. Not sure what else I can do - do I just need to be patient..? Any encouragement with what to say to GP would be grateful, thanks in advanced.

Written by
Cookiedough2022 profile image
Cookiedough2022
To view profiles and participate in discussions please or .
Read more about...
7 Replies
Jillymo profile image
Jillymo

First you need to determine the cause.

If your not absorbing then the sublingal meds are not going to be of benefit.

You could ask your Dr if you can try a loading dose of B12 to see how you get on anything is worth a try. The gut health is important so keep the goodies going in.

I am waiting to see a gastrologist albeit a damned long wait to see if I have an absorbtion problem. Unfortunately many Gps dont get to the root cause of the problem and many havn't a clue when it comes to treating B12 deficeincy. I have had to resort to self injecting like many others here on the forum. You will lean a lot on here from others so stick with it.

Best wishes

Narwhal10 profile image
Narwhal10

Hi Cookiedough2022,

Welcome here. I’m sorry to read. So, be prepared and thorough.

*A list of symptoms and since when. Including any gut issue.

*What doctors you have seen and when.

*What tests you have had and results.

*Amitryptiline was prescribed on such a date and not effective.

*Naproxen was prescribed on such a date and also not effective.

*Is there any family history of autoimmune disease especially P.A.

*You are being proactive by:

*Diet, prebiotics and probiotics ?

*Taking supplements.

*Ask them to trial vitamin B12 injections to improve your quality of life and pain.

Do you use apple cider vinegar ? (I’m asking as many of us do, you due to low stomach acid).

You understand that the efficacy of serum B12 is flawed. It can test both inactive and active and it doesn’t show what is happening at cell level.

Hope that is of some use.

Best wishes

Vitamin B12 deficiency vs multiple sclerosis
Rexz profile image
Rexz in reply to Narwhal10

Hi Narwhal, Great points on being prepared for GP visit. Go with data in hand, that along with all my research is what saved my life!

Regarding the chart on comparison between B12 deficiency and MS. Is a very good chart but from my personal experience the claim/statement on the lower left is inaccurate. They should have maybe included the "more likely to affect..." both sides of the body equally. In my case the entire right side of my body went completely numb from head to toe including face and torso. I was initially tested for stroke and MS amongst many other things but all came back negative except for one...oh and the last one I was positive for PA. So after two years of weekly B12 injections most of that right side numbness has resolved itself but I do still have some residual PN in my right foot and right hand and a little in my left foot but not as much.

As always, wishing you the best, Rex

Narwhal10 profile image
Narwhal10 in reply to Rexz

I am so sorry to read Rexz. Great to hear from you though.

It is such an insidious illness. I trust you are well and hiking ?

Yes I’m right handed, had right sided trigeminal neuralgia (a particular nerve in the face). I struggle to inject in my right side and I limp when the 2 nerves in my right thigh say enough !!

Today, I swam and as the lifeguard had their back turned, I did a couple of somersaults in the water. You can’t do that with poor proprioception (your body tells your brain where it is in time and space), tremors or vertigo !!

Cookiedough2022, treatment does work.

I did have to go home and rest after.

Sending you my warmest wishes and a cwtch (Welsh for hug)

Happysmile profile image
Happysmile

Hi. Just wanted to add that as you’ve been taking sublingual b12, any blood test will show higher b12 levels as it will record what is flowing around your blood but not what’s actually at cellular level. I’m not medically trained but have read to come off all b12 supplements for 4 months before testing, to get a true reading. If not, just bear this in mind when/if you get results. Hope all works out for you. From my experience I’d also advise you to read up on b12 and join the pernicious anaemia society if you do have a deficiency. Best of luck.

Cookiedough2022 profile image
Cookiedough2022

Thankyou so much for all your kind responses. I feel so low , 🥹I’m a 38 year old trying to work and look after 3 kids, not easy when you basically can’t feel your legs. 3 years ago I was running 20 miles a week , now I can barely walk and left calf pain and constant paresthesia. When you suggest a loading dose, how regularly is this injecting and for how long? When should I expect to see an improvement in my symptoms? Could I buy the injections myself if the GP doesn’t give me enough? Should I pay to see a neurologist privetly? I’ve read that if it’s not treated quickly the symptoms can become permanent so I’m anxious to progress treatment. Speaking to the GP on 25th July so not sure whether to just hang on for this and keep taking the 5000mg B12 lozenges… thankyou so much in advanced ☺️

Narwhal10 profile image
Narwhal10 in reply to Cookiedough2022

Hi

I am sorry you feel so low, fatigue is hideous and impacts mood. But lack of vitamin B12, iron, folate and vitamin D also impact mood. Unfortunately, we do compare ourselves to how we were before.

To answer you questions. So loading doses, it does vary from Trust to Trust but are usually 3 times a week for 2 weeks so every other day (EOD).

This is from the British National Formulary (BNF) which every doctor or clinician has access to

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

With neurological involvement guidelines are the above regime until no further improvement. (But Trusts also have their own guidelines).

Many of us have had to fight tooth and nail for more regular injections or just not bother and self inject.

It is definitely worth joining the Pernicious Anaemia Society. Be armed with information. Doctors whether neurologists, haematologists, gastroenterologists have very little training on this illness. Although, there are the odd gems out there.

I saw a private GP, she rang me before hand and said do you need an injection so I can get it ready. I was already self injecting by then). At my appointment, she asked how long I’d been in this state (uncoordinated body) and then said,

‘I bet you know more than me.’

I was super pleased with that. My NHS GP - no comment.

Hope that helps some more.

You may also like...