Log in
Foggy's "Invisible Illness" Support
3,773 members490 posts

Query re B12 supplementation

I suffer from idiopathic peripheral neuropathy and it has been getting worse over the past few months.

When it started a few years back, I did take Solgar, Sublingual Methylcobalamin for about a year or so and then stopped because I read that too much B12 can be bad for you.

I was reading about it yesterday and somebody said that if you supplement B12 then you should also supplement folate - is this true and, if so, how much folate?

I do worry about taking too many supplements, but am hoping for a miracle cure to my painful feet and legs.

In the morning when I get out of bed they are at their worst - feel so thick and like I have pebbles trapped under my toes.

Any advice greatly appreciated.

19 Replies
oldestnewest

Same here - idiopathic neuropathy, and your description of 'thick with pebbles under the toes' is spot on.

I take B12, but don't know about folate. I also take Alpha Lipoic Acid, Fish oil and a Magnesium and Calcium supplement. I did speak to my specialist about those and he said they sounded ok - but doctors don't seem to have much knowledge or interest in supplements. I would be very interested to hear from anyone else who knows more about this.

In the meantime, we'll both keep wishing and hoping for the miracle cure!

2 likes
Reply

Thanks for your reply, it is very frustrating isn't it.

When I saw a neurologist he basically told me there was no treatment for idiopathic neuropathy because they don't know what is causing it and just offered the usual pain relief pills - i.e. gabapentin, pregabalin or amitriptyline - none of which I wanted.

I also take a fish oil capsule every day and have tried a couple of magnesium supplements, but haven't yet found the right one for me. May I ask which type you take? The last ones I tried were magnesium citrate, but I am now going to try magnesium bisglycinate, which is supposed to be absorbed much better. I haven't tried alpha lipoic acid.

Some days I find are far worse than others whereby I have it in my arms and hands as well, sometimes feels like it is in my face.

I also get bad cramping in my feet and and legs - worse at night!

Reply

The magnesium is supposed to help with cramp - I take a combined Magnesium and Calcium from Holland and Barrett. I'm not sure that the ALA does anything, but don't want to stop it in case it gets worse! Seems like we are totally on our own with this, with no help from the medics unless you want their horrible drugs.

1 like
Reply

Have you had B12 tested ? - a result below 500 can result in neurological damage if left untreated. The book - Could it Be B12 ? - by Sally Pacholok is a good read - every home should have a copy 😊 Also a movie by the same name on YouTube.

Do not supplement B12 before testing as results will be skewed. Also test Folate - Ferritin - VitD.

Taking a good B Complex keeps all the B's in balance and will contain Folate/B9.

Injections may be more appropriate but for some reason the NHS is loathe to prescribe such a cheap and effective treatment ... I live in Crete and can buy OTC 😊

Reply

Before I started taking the B12 supplement I think my level was about 237, but was not told that it was low. Anyway I took them for a year or so, but unfortunately it didn't stop the symptoms. I was not taking folate though, would this have helped? Is it a safe supplement to take?

Reply

Which B12 were you taking and how much ? Your result was very low even without the range. ( labs do vary ) Yes Folate/B9 work together in a very important way in the body so a good B Complex should do the trick. I take Thorne Research from Amazon - there ate of course others.

Reply

I didn't start taking them until doing some research on this site, so the 237 was before any supplementation. I took Solgar Sublingual Methylcobalamin (1000mcg) for well over a year, probably 2 or 3 a day.

Unfortunately where I live there is no way that you can ask for blood tests - in fact you are lucky to even get to see a doctor (long waits - occasionally they close the surgery because there are no doctors available)

1 like
Reply

Sounds as if you are doing lots of good things to help. You cannot overdose on B12 as it is water soluble and any not used within the body is excreted :-)

1 like
Reply

What about the folate - is that also a safe water soluble vitamin?

Reply

Same - the body does not store folate hence we have to keep topping up with folate rich foods or supplements. As we age our absorption is less efficient so supps are best. 😊

1 like
Reply

Thanks Marz, In that case I will go ahead and order both B12 and folate - think I will stick to the Solgar brand, or do you know of any better ones (excluding Jarrow).

What is the recommended daily dose of folate?

Reply

400 mcg is suggested. Taking it in a B Complex would be good as it would keep all the B Vitamins in balance as well ...

I self inject B12 & take Thorne Research B Complex - from Amazon. There is Folic Acid - Folate and Methylfolate ! Thorne has the latter.

Reply

Hello there Twichen,

I have read your post, and feel for you, and hope I can help in some way.

three years ago, after one year of tests, I was told that I have Sensory Axonal Peripheral Neuropathy with no known cause. My symptoms are similar to yours, but my feet feel as though they are encased in boots ... numb right up to my knees. My hands aren't as bad but my fingertips are numb. I am aware all day of this problem, my feet and legs ache.

At night my feet and legs can feel as if they are burning, by body can ache, and sometimes (around once a month) I can wake up with the whole of my body in a kind of cramp spasm.

I tell you all this to explain how I personally cope with my problem.

I tried Gabapentin but was very ill after only one tablet, it altered my brain chemistry somehow ... so I decided that I would manage by myself to try to ease my health problem.

Each day I take Benfotiamine fat soluble Vitamin B1 + Alpha-Lipoic Acid 300. All in one capsule (Doctors Best brand) they are veggie caps. these made the world of difference to my life, it took around three weeks to ease my nerve pain (sometimes the pain is worse than others)

I also take Vitamin B12 lozenge but the superior form meaning they have no additives so any excess leaves my body and is not stored in my kidneys( Jarrow Formulas). With this I take one Folic Acid tablet B9, my doctor mentioned to always take folate with B12 because without it the B12 cannot fulfil its functions. I take Omega 3 a couple of times a week and also Vitamin D every other day.

If my legs feel as if they are burning (as they sometimes can because it comes and goes away for some time) I use Magicool hot weather cooler. It is an ice cold spray .. the kind of thing you would take on holiday I spray my legs and feet and wait for them to dry .. this will give me a couple of hours freedom from the pain.

I hope this info helps you in some way .. sending you loving thoughts

Heather xx

1 like
Reply

Thank you Heather for your very helpful post.

I do get a bit fearful of taking too many supplements because you read about how taking them can be harmful, but the trouble is none of the so called health professionals have a clue what to do. I just get told it is idiopathic, end of.

I was offered the usual painkillers - Gabapentin, Amitriptyline - but refused them. My OH had tried all of these plus Pregabalin, which left him in an awful state - he has never been the same since coming off them.

I am thinking of getting some more Solgar Sublingual Methylcobalamin and will perhaps also get some folate to take with them. Have to say I tried the Jarrow B12 but really didn't like them. I found the Solgar far more palatable.

I also take Vitamind D daily and a good quality fish oil capsule daily - perhaps that is too much?

1 like
Reply

I also have idiopathic polyneuropathy started 1 year ago and I have muscle cramps, pain, etc. There are days I cannot walk easily, since my motor nerves are also affected. I tried many things, but I did not find the clue for my illness. Nowadays I am on acupuncture, maybe it could help.

1 like
Reply

Thank you for replying. I did try acupuncture some years ago, but it didn't help me. Do hope it works for you.

1 like
Reply

I am neither sure you need folate with B12? If you are planning pregnancy perhaps ... saying that if you are vegetarian or vegan then yes, but with a healthy balanced diet you should be fine. I’ve only come across the need for vitamin C necessary for vegans/vegetarians to absorb iron from vegetables. However folate with B12 will not make supplements have better bioavailability - I would say to get the best B12 have dairy products and about a tablespoon at least of red meat.

Reply

I have neuropathy for 5 years. It was really bad when I was working. Doctors told me I should exercise and swimming would be the best because it does not pressure feet and legs. Its been two years since I retired and started exercising more than 3 times a week and swimming at least 3 times a week. It is time consuming but I am not having painkillers regularly and in some days I don't have pain. I hope this helps. Maria

1 like
Reply

B12 with R-lipoic acid

Reply

You may also like...