B12 Deficiency

[Headoverheels]

I have Peripheral Neuropathy and am being treated for B12 deficiency. Having just completed an 8 week course of tablets I am awaiting results of a blood test. My symptoms of tingling feet have eased very slightly...they are not so angry. Does anyone know how long it takes for B12 to take full effect? Am I too impatient? (I had originally posted this on the PN site but someone kindly directed me here).

[Cb1963]

I have both symptoms, I have PN for nearly 12 , I'm intrigued to find out why you were being treated with tablets rather than the injections, tablets are the CHEAPEST OPTION, and often don't work, it may be that your health practice are trying to save money, many people can't absorb tablets and symptoms will continue, and perhaps you are just feeling the placebo affect, I have the B12 injections every 3 months, I know my PN will never go away, but it's really hard to understand the other symptoms that B12 deficiency causes as the symptoms are very similar, you may get different symptoms like muscle twitching or your eyelids start to flicker, or a deep chest type rumbling sensation, or even struggling to breathe, often people can become tired, but sometimes you need folic acid tablets if things become to bad,even doctors aren't totally reliable on reading blood tests, it's how you feel and the symptoms I've described will give you an indication on the symptoms that lead you to your own conclusions, occasionally people get mouth ulcers, I hope this gives you a few ideas, and I sympathise with you on the horrible PN, best wishes 😊

[Headoverheels in reply to Cb1963]

Thank you for your informative reply. I laughed out loud when I read about B12 tablets being the cheapest option! My thoughts exactly. As soon as I noticed my foot problem I bought my own B12 tablets and was shocked at the price I paid compared to the ones prescribed which are 99p and rubbish! (They are definitely not the best so I shall keep buying my own)

After reading your message I am interested to hear my blood test result and see what difference the tablets have made, if any! I have a feeling it's going to be very slow progress. I sympathise with you having PN for such a long time...I have a feeling I am just going to have to learn to live with it! Thanks again .

[Cb1963 in reply to Headoverheels]

Well, please don't get fobbed off by your doctor, and don't give in by saying that the tablets have worked, otherwise they'll just continue with this so called " treatment " B12 injections are the way forward, you'll get loading doses and hopefully if you are required to need this medication you will find a improvement in your health, often people who have B12 deficiency problems have stomach related issues, and that's why they have problems absorbing tablets, hence injections are used, I wish you well on the future 😊

[Headoverheels in reply to Cb1963]

Thank you so much for your input. I am so pleased I posted this morning. I did not realise there is so much information available on B12 and how important it is. I feel a little more confident to face my GP now as I am sure this is going to rumble on for sometime to come.

It's so good to be able to contact others in a similar position and hear their experiences...I wish you well ...thank you again.

[Sleepybunny]

Hi,

Welcome to the forum.

Do you mind me asking which country you are in?

I'm asking because patterns of treatment for B12 deficiency vary between countries.

If you're in UK, I would expect you to be on the treatment pattern "For people with neurological involvement" outlined in link below as you have neuropathy.

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

With neuro symptoms present, I would not expect you to be on oral B12 in UK.

What to do next if B12 deficiency is suspected or recently diagnosed

b12info.com/what-to-do-next/

If PA (Pernicious Anaemia) is suspected, worth joining PAS (Pernicious Anaemia Society).

pernicious-anaemia-society....

PAS membership is separate to membership of this forum. It's open to people worldwide and you do not need a PA diagnosis to join. PAS have a members' helpline and lots of useful leaflets.

If you're in UK, try to find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland. Compare them with NICE CKS link below.

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

Unhappy with treatment (UK info)?

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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

It's vital to get adequate treatment. Delayed or inadequate treatment increases the risk of developing permanent neurological damage. In severe cases the spinal cord can be affected.

If you're in UK and you think you're being under treated, might be worth showing this to GP.

PAS leaflet - SACD

pernicious-anaemia-society....

Thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

Wrong ideas about B12 deficiency

Many on this forum have met health professionals with a poor understanding of B12 deficiency.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Help for GPs

1) PAS website has a page for health professionals.

They can join PAS for no charge.

pernicious-anaemia-society....

2) Club B12 is a group of researchers and doctors looking into B12.

club-12.org/

3) A good article to pass to doctors

B12 article from Mayo Clinic in US

Aimed at researchers and health professionals

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 is the former chair of PAS (Pernicious Anaemia Society).

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

Very comprehensive with lots of case studies.

Other results

Have you also got results for folate, ferritin (and other iron tests) and vitamin D?

I left some detailed replies on the thread "High mean cell haemoglobin & I don’t know why" which may have useful info. It's about three threads below this one.

Lots of useful b12 info in pinned post "Various PA/B12D resources". Pinned posts are on right hand side of screen if on computer. Scroll up or down to find them.

I'm not medically trained.

[Headoverheels in reply to Sleepybunny]

Well that was a good read Sleepybunny! You have certainly opened my eyes... I had no idea how important B12 is and what can cause deficiency. I am so pleased to have posted this morning...I feel a lot more knowledgeable for when I see my GP. I am a little nervous about ringing for the test result. I seem to be spending so much time recently 'contacting the surgery' for one thing after another ...the joys of growing old!

I really appreciate your time spent posting today...thank you so much.

[Headoverheels]

Wow...I am just going out...Will read later...thank you. I am in North Somerset, England.

[Sleepybunny in reply to Headoverheels]

Hi,

I think these might be your local B12 deficiency guidelines... but check what area this ICB (Integrated Care Board) covers. They are in development which means that they are likely to be added to at some point.

remedy.bnssg.icb.nhs.uk/bns...

These might also be relevant - from Bath/NE Somerset/Swindon and Wiltshire.

ruh.nhs.uk/For_Clinicians/d...

Local B12 deficiency guidelines will probably be reviewed when new NICE B12 deficiency guideline is published in March 2024. Keep an eye on your local guidelines they can sometimes change at short notice and changes don't always mean improved treatment.

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

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

A bit about oral treatment

My feeling is that there is a push across UK to put more people onto oral B12.

It's sometimes said to be more convenient for patients but my feeling is that it is done more as a cost saving measure.

Note on oral treatment - from B12 Institute (Netherlands)

b12-institute.nl/caution-no...

[Headoverheels in reply to Sleepybunny]

Sleepy Bunny you are very knowledgeable on this subject ...I sense that you have, or have had, problems too. I am amazed at the amount of information that is available on line and must thank you again for bringing it to my notice. Sending best wishes.

[Mixteca in reply to Headoverheels]

It's because we have problems that we join this fab forum to get advice and support. We are here for each other when others may not be - I welcome you warmly!

[Headoverheels in reply to Mixteca]

Ah, bless you Mixteca....I have turned to healthunlocked. com so often just lately. Firstly with Asthma & now B12 deficiency...it's so good to share. Thank you for your kind words.

[Mixteca in reply to Headoverheels]

This forum is my lifeline in very difficult times. Do test for PA before starting injections - all info should be on one of SleepyBunny's helpful links 🙂

[Sleepybunny in reply to Headoverheels]

I lost 20 years of my life to untreated B12 deficiency with some very difficult experiences along the way and I want to help people avoid the problems I had. I think many forum members feel this way.

I am very grateful for the support I've been given.

[Headoverheels in reply to Sleepybunny]

And I am also grateful for the support you have given me.So sorry to hear you have suffered for such a long time. Hopefully all this is in the past now and you are able to enjoy life to the full.

[am111]

On tablets, the recovery is often very slow and for many, they don't work at all. What is the strength and type of tablets that you are taking?

As others have pointed out, injections are much better. Once-a-week injections (1000mcg cyano or 500mcg methyl/hydroxo) is often recommended) might be the way to go and you can continue on this schedule till your symptoms resolve, after which the frequency can be reduced.

[Headoverheels in reply to am111]

Am taking Cyanocobalamin 50 mcg...food supplement. I have now finished these and taking my own...Methylcobalamin...one a day. Many thanks for your input...as expected this is going to be slow! I'll see what my GP says when I get my blood test result...at least I feel a little bit more knowledgeable now.

[am111 in reply to Headoverheels]

50mcg is fine if you don't have absorption problems. If you do, then the minimum dose is 1000mcg/day which will work even with absorption problems, as about 1% is absorbed by passive absorption even when having absorption issues. For faster relief, some injections in the beginning are useful. Best of luck!

[Headoverheels in reply to am111]

Many thanks for your input. I think I have a big hill to climb!

[Mixteca in reply to Headoverheels]

Let's hope it's not a mountain x

[saatchiB12Z]

Hello, dont loose your time, PN is a bad one ! You have to use injections immediatelly. I have PN from 2016 and do shots every week. All the best !

[Headoverheels in reply to saatchiB12Z]

Thank you...Will see what my GP says next time.

[Gambit62 Administrator]

Headoverheels - the tablets prescribed are probably 20mcg-50mcg tablets used to treating a dietary deficiency. Unless your GP established that you eat very little or no meat/fish/dairy/eggs it is more likely that you have a B12 absorption problems.

This forum is about non-dietary deficiency/absorption problem as issues and treatment are generally different.

Tablets will be slow at raising your serum B12 levels - and low dose will fail to do anything if you have an absorption problem.

I think that, even in cases of dietary deficiency, if there is neuropathy, then the treatment protocol would be injections anyway.

Neuropathic symptoms can take a very long time to clear - as they may be a sign of degradation of the myelin lining around your nerves. However, they can also be due to issues in resetting neuro transmitters which would recover in a different way and could reverse much quicker. If neurotransmitters are involved then things can seem to get worse before they start to get better.

[Headoverheels in reply to Gambit62]

Gambit62. You are right re the tablets. I really feel they won't make much difference as I have always considered that I eat healthily. Reading your post has suddenly reminded me of another problem that I have noticed, which I have had for some time now but have never mentioned it to the GP and am now wondering if I should. (I think it's fear that has stopped me).

You mention neurotransmitters. Could this be the answer?

I can only describe it in this way...one instance was when my husband came in from the garden after badly cutting the top of his thumb and it was bleeding heavily. I looked at it and pain shot down both of my legs , both in a wave like motion. This has happened to me a few times...it's almost as if I cause this through thought? Is this possible? Sometimes I can be almost bent double...I liken the pain similar to when you knock the humerus bone in your elbow. I am now beginning to think perhaps the leg pain and foot tingling may be connected?

I would be really interested to know if anyone else has a similar problem?

As it doesn't happen often I have tended to ignore it. (Apologies if I have posted this on the wrong site).

Thank you for your post...definitely food for thought.

[Gambit62 Administrator in reply to Headoverheels]

What you are describing doesn't sound typical of B12 deficiency but we are all different

[Calver10 in reply to Headoverheels]

That sounds 100% like lhermitte's sign which means you have inflammation in your spinal cord You urgently need an MRI and a referral to neurology

[Headoverheels in reply to Calver10]

Hi Calver10...I have only just checked this website and noticed your recent post. Thank you for your reply. Sounds rather scary. I have looked on the web as I have never heard of Ihermitte's before. I am sure my problem is neurological but I am rather hesitant to delve further at this moment in time as I feel I have constantly one medical problem after another. I must thank you for bringing this to my attention. I will keep this in mind .

[Contra21]

What was your b12 level I have tingly hamds amd so dizzy

[Headoverheels in reply to Contra21]

I'm sorry..I don't know my last reading but will make a note of it when I contact the surgery for the result of my last blood test. Thank you.

[B12life in reply to Headoverheels]

Yes. Make a note. That will help us inderstand how low you are. And confirm b12 is your issue.

Also are you by chance vegan?

I ask because as mentioned, if you don't eat meat, that is likely your cause for being low. However, if you eat plenty of meat and you are low, then you have a malabsorption issue and likely wont absorb orally.

My level was 190. I too had pins and needles, numbness in my feet and hands, sciatica, back pain, fatigue. I was bed ridden. My level got low despite taking a high level of b12 orally and being a meat eater.

I did. Daily injections for 2 years and now climb mountains.

If your diet caused this, continue with oral or seek answers from others here who recovered after getting low due to diet. I can't help on what to do there other than take high dose oral b12 until you feel better. Even in this case, recovery will be slow but will work orally.

However if you don't think it was diet, and your b12 is low (send us your level when you get it), then it's best to do injections; otherwise you may not recover and the damage can become permanent.

[Headoverheels in reply to B12life]

I 'll know more next week B12life. I am not a Vegan or Vegetarian but I don't eat much meat as I prefer fish...perhaps I should change.

Thank you for your input...it's much appreciated.

[eclilley]

What were your blood test results when they found you were deficient, before going onto tablets?And did they do the Intrinsic Factor test with that set of bloods?

And folate, ferritin etc?

You need injections really. It makes me so cross that they are now sticking people on tablets at the outset and then saying they will do another blood test - when the B12 level is most certainly going to be better, but that doesn't been it is available/being absorbed.

With neurological symptoms you are meant to have every other day injections until no further improvement (NICE). Very difficult to get that through the NHS though.

[Headoverheels in reply to eclilley]

Thank you for your input eclilley. Unfortunately I didn't make a note of my readings which I must do next week.

It will be very interesting to see what the next step is.

Thanks again.

[EllaNore]

Hello, I am sorry you suffer from PN. I do as well quite badly. So does my aunt. They just started her on tablets. I believe they want to see if she responds to the tablets, which means she would be able to absorb them. If she doesn't get better and her B12 doesn't raise, then she can not absorb it and I am sure she will be put on injections. So, it could be they are testing you to see if you can absorb. Are you vegetarian or vegan? If you are, then your PA is dietary and you are able to absorb B12. So tablets could work for you. As far as how long it takes to help, depends on how long you have had B12D and PN. I have had PN since 1995 or so, so I don't think I will get much better than this, but I never give up hope. I have been on daily injections for about 2 years. I am still waiting to see if I get better than this. It takes a while. It can take years. And it can ebb and flow, come and go, good days and crash days. It can also get a little bit worse before it gets better for some people. They call it reversing out. The symptoms you were feeling before treatment might get a little worse as they wake back up and heal. How much they heal is a crapshoot. The longer you suffered from symptoms, the longer it would probably take. I wish you the best of luck and you came to the right place for help.

[Headoverheels in reply to EllaNore]

Thank you for your reply EllaNore. I am so sorry to hear you have suffered PN for so long. I agree with you..there is a criteria for everything in the NHS and we all have to follow it. Next week I shall know my result and take it from there. No I am neither a Vegan or Vegetarian but I don't eat much meat...I prefer fish. Perhaps I should start thinking about the odd steak now and again!

I wish you well for the future.

(I apologise to the Administrators of this site if I am posting about the wrong subject).

[EllaNore in reply to Headoverheels]

Thanks so much. PN really stinks. 🥲 I don't really care for meat myself either. You don't have to eat meat, but you do have to take B12 and any other supplements you might be missing out on for life. It is crucial!!! If you start a new thread about the best supplements, chances are someone can help you.

Any animal product will give you B12, eggs, fish, meats, cheese, milk etc. good luck with your tests. So you know which tests they are running?

In a way it's good that your doctor didn't just start you on injections. The reason I say that is because once you start on injections, your B12 levels will never be accurate or the same again. They'll always be high >2000. And then any further testing becomes more difficult because the waters get muddied.

I feel starting you on sublingual supplements is a way of testing to see if you can absorb it, without lots of tests. If you can't, then they might run more tests like an IFAB test, which is an intrinsic factor test. Or other tests as well. There's several of them that they could run.

Sublingually, your B12 levels shouldn't go up all that high as it would if you were injecting. It is more gradual.

So if you're B12 levels don't go up after taking sublingual B12 after a few months, then chances are you're not absorbing it. Since you're not a vegetarian.

Then your doctor might want to run more tests. Those tests need to be ran without B12 injections in your system. So, that could be why they're choosing to do things this way. It takes a little longer, when they could just choose to run all the necessary tests and get it over with, but insurance may not like that. This is just my opinion, based on why my aunt's doc did it that way. We will see in January if she is absorbing it. In the mean time, if she gets worse, that's also a sign she isn't absorbing it. In my opinion that just makes somebody suffer unnecessarily. But it also makes further testing more reliable.

[Budsa]

Peripheral neuropathy and shooting pains down your legs are both symptoms of pressure, or compression of the nerves in your lower spine. Definitely worth mentioning any other symptoms to your doctor.

[Headoverheels in reply to Budsa]

Thank you for your input.

[Hockey_player]

I had tingly toes and for awhile it worked to use sublingual B12 (1000 mcg) daily. But they they got tingly again after many years. The doctor switched me to injections and it cleared up. I had some tingles recently and switched to injecting every other day for a little while and it got completely better. Once a month does not seem to be often enough for me for having injections these days. I think that anyone with monthly injections and tingly toes should try more frequent injections to see if you can't get rid of that problem.

[Headoverheels in reply to Hockey_player]

Thank you for your input.