Some advice please.

[Ritchie1268]

Hello all, hope you're all well.

I did every other day SI around just before Christmas & felt the benefits. However, since then, my aching legs, burning feet & pins & needles in hands & feet, exhaustion etc have returned.

I can only do little tasks that wouldn't think twice about before, then move onto the next etc with no issues at all. Now, after walking so far or after putting a new blind up yesterday, I was shattered & my legs ached constantly as they did daily before. I got really angry & frustrated with myself because I should still be able to do these things at my age.

The thing is, from last Friday, I decided to SI every day for a week to see if that helped.

Last night & night before, I have only slept an hour each night due to aching & very restless legs so decided to just get up so as not to disturb my partner's sleep.

Today however, I have loads of energy, I want to do things, have walked my daughter to get bus to college & still feel great & my legs don't ache currently even after walking with my daughter.

My question is, if I SI again today, is it because of the boost in B12 why I cannot sleep & am I over doing it SI everyday?

All I have is slight burning & tingling in my feet & tingling in my hands & loads of energy which I can obviously put up with.

Thank you

Ritchie

[clivealive Forum Support]

Hi Ritchie1268 It looks like you need the B12 more frequently and you cannot overdose on it as any excess is excreted via your urine.

I am not medically trained and wish you well.

[Ritchie1268 in reply to clivealive]

Thanks Clive. You're a star as always!

I was just a little worried that overdoing the SI was the reason why I wasn't sleeping since doing it daily.

[wedgewood in reply to Ritchie1268]

Yes I can only echo what clivealive says . Extra injections and don’t forget your folic acid supplement !

[Ritchie1268 in reply to wedgewood]

Thank you wedgewood as always!

I have continued to take 400ug of folic acid daily but am I still ok to inject daily as this could be effecting my sleep & restless legs when trying to sleep??

I have yet to SI today just incase that is the reason why I haven't slept last 2 days etc, but I feel great again today, just like I used too.

I even want to play my guitar which I've fallen in love with all over again.

Thank you as always for your advice & I hope your new year trip went well.

[wedgewood in reply to Ritchie1268]

I would personally continue to inject . I’ve never come across daily injections causing sleeplessness. Your body takes what it needs and excretes the rest . Your sleeplessness could have another reason . Trouble is, if one thinks too much about a possible reason , the worse the sleeplessness /restless legs can get . I’ve heard of people on this forum who have taken magnesium supplements for restless legs and found that it helped their sleep as well . Would do no harm to try that perhaps ? Also a warm bath in Magnesium flakes could help . There are different forms of magnesium . Some people spray magnesium oil . Best look it up( I believe that magnesium citrate is good )

Apparently magnesium deficiency is quite common .

All the best Richie 1268

Yes thanks my trip went well , but I was in a hot country ,Thailand , and I don’t like heat . I only went there to help a friend ! — I’m recovering .

[Ritchie1268 in reply to wedgewood]

Thank you wedgewood!!

That's what I thought also but just thought I'd ask.

Could be stress as my mother-in-law passed away sadly on 19th after a very long battle. She was always an inspiration to me to keep fighting & never give in! We would spend many hours together discussing the heroin the Dr put me on for my back problem.

She never gave up & we were all there when she finally let go!

My partner aged 46 recently had an operation for breast cancer & we had to deal with her mum struggling also so, guess it must be the stress of it all just trying to deal with life I suppose & just how very cruel it can be at times & trying to get my head around why!?

Thank you yet again!

I do have magnesium tablets but didn't want to take them if I didn't need to.

I've just injected myself again & just need to chill out I guess.

Think I'll get my guitar out, have a sing & a Jack Daniels before I get snowed in!

Thank you again for all your help & support over the past months, you don't know just how much you helped! Thank you!!

I hate heat too!

Take care.

Ritchie

[wedgewood in reply to Ritchie1268]

Sorry to hear of your loss and other worries . Great that your mother -in -law had you both for support till the end . Yes stress can cause a lot of health problems . Get that guitar out and have a Jack Daniels !

[Ritchie1268 in reply to wedgewood]

I'm on it. Thank you 👍🏼

[Foggyme Administrator in reply to Ritchie1268]

Hi Ritchie...just a thought...iron deficiency anaemia can cause restless legs...have you had your ferritin levels tested recently?

Also...one of the potential side -effects of over supplementing with folic acid is insomnia (I had it very badly once when I inadvertently over-supplemented). There are other potential side-effects of over-supplementing too, so worth looking up on the internet.

Try stopping the folic acid for two weeks and see if that makes a difference (not everybody needs 400mcg as a daily maintenance dose, and you may be one of those people).

If your GP would check your folate levels - even better - 'cause then you'd know 😉.

We sometimes hear people on the forum saying that everyone who injects B12 frequently needs to take folic acid 'to make the B12 work' (sometimes at ridiculously high doses). That's wrong. Like B12 frequency, it's very much an individual thing (some need it, some don't). The exception is if you’re on any medications that impede the absorption of folic acid, in which case a GP will manage the correct dosing regime.

Sorry about the insomnia and restless legs...know from experience how dreadful it can be. Hope you rest well and easy PDQ.

👍

[Ritchie1268 in reply to Foggyme]

Thank you so much Foggyme

I was diagnosed with Folate deficiency as well as B12 & PA so thought I had to take Folic acid daily to help my B12 etc.

The thing is, since watching the YouTube video of Sally Pacholok & seeing some English consultants on there, I seem to remember they say that folic acid can also impede B12 if I heard it correctly??

Still very confused.

I have been taking 400ug folic acid daily since diagnosed. Just thought the daily B12 injections since Friday maybe causing the last 2 days of no sleep. But upto now today, my legs feel normal, no aching at all & I have energy.

I did have my iron left checked last week & that came back "satisfactory" though don't know what those levels were as of yet.

Thank you again!

[Foggyme Administrator in reply to Ritchie1268]

Hi Ritchie1268.

'folic acid can also impede B12 if I heard it correctly??'

Not sure what you mean here...I'm not aware of folic acid itself impeding the absorption of vitamin B12. (Somebody please tell if you know different).

However, giving folic acid in the presence of undiagnosed and / or untreated B12 can 'mask' the presence of B12 deficiency (because it rectifies the macrocytic - or large - red blood cells sometimes present in B12 deficiency). So...a B12 deficiency remains undiagnosed and untreated, potentially allowing neurolgical damage to progress. So, giving folate under these conditions impedes the diagnosis of B12 deficiency (so wondering if this is what you mean).

There's also something called 'the folate trap', which can result in raised levels of methylfolate, which potentially impact badly on the body. Here's a post where fbirder explains the folate trap:

healthunlocked.com/pasoc/po...

In terms of folate deficiency, once the initial deficiency has been treated, some don't need to continue taking folic acid. And some need to take a maintenance dose of 400mcg to maintain levels. So...only way to know if you do need a maintenance dose is for your GP to check your levels periodically (which they ought to do following your previously diagnosed deficiency).

As I say, when I inadvertently took too much folic acid...insomnia. Bad time. And it went when I stopped the folic acid so that my levels could drop. I now take 200mcg daily - and that's enough for me.

No idea if this is what's happening to you but certainly worth stopping the folic acid to see if it makes a difference. And you can always re-start if there's no change...or you start to feel folate deficient again (worth looking up the symptoms of folate deficiency and the side effects of over-supplementing with folic acid, so you can track progress and monitor any potential changes).

If you need folic acid, you need it in it's own right (because you're deficiency or low on folate or you can't maintain your levels). You don't need folic acid to 'help' B12 😉.

Might be worth ring the surgery and asking for a print out of your ferritin blood test. Doctors often say that the result is 'satisfactory', even if levels are right at the bottom of the reference range - and this may not be good enough for some people (they rarely think of blood test result in terms of potential symptoms).

👍

[Ritchie1268 in reply to Foggyme]

Thank you again.

I know exactly what you mean by "satisfactory" levels.

It may be my brain fog but, the video on YouTube about B12 entitled "Diagnosing and treating Vitamin B12 Deficiency" I'm sure it says too much Folic acid can actually be bad for someone with B12 deficiency but, as I said, I get mixed up very easily now & don't have time right now to go back through to see what I thought I heard. I will watch again when I get the chance to see if I can actually find it!

I will leave out the folic acid though, just for a few days & see what happens.

Thank you again, your help is very much appreciated as always! Thank you!!

[Foggyme Administrator in reply to Ritchie1268]

Too much of folic acid can be bad for anyone, B12 deficiency or not. No idea why it may be particularly bad for someone with B12 deficiency (apart from 'masking', as above). Gambit62 , fbirder - any idea?

Would be interested to hear exactly what the video says, if you have time to check.

Or perhaps post a link (I'm intrigued now)?

About getting mixed up easily...yes...me too 🤷‍♀️🤦‍♀️🤦‍♀️

👍

[Ritchie1268 in reply to Foggyme]

If I can post the link I will. It's on here somewhere. Not sure when it actually says the thing with B12 & folic acid etc (if it did) but I'm sure it did but who knows!!??

youtu.be/BvEizypoyO0(Not working as expected?)

Hope this works & you can watch it. It will either prove I'm losing the plot completely, or there maybe a little hope left for me!! 🤔😄

Thanks again

[Foggyme Administrator in reply to Ritchie1268]

Thanks Ritchie1268. Will watch...probably tomorrow 👍

[Ritchie1268 in reply to Foggyme]

I think it's around 13 minutes onwards where it mentions someone with low B12 & high folate levels are more likely to get more neurocognitive deficits if I remember right???

[Foggyme Administrator in reply to Ritchie1268]

Ah ha...thanks Ritchie1268.

But hmmm....not so sure that's the same thing as folic acid being bad for B12 deficiency (as per your reply above)...more a case of the folate trap (high folate cause neuro toxicity in the same way as over-supplementation leads to neurotoxicity) or high folate masking B12 deficiency (which leads to neuro damage progressing in-noticed). So, hmm again.

Will have a peek at the video....👍

[Gambit62 Administrator in reply to Foggyme]

yes, my understanding is that oversupplementing Folate leads to the folate trap.

Standards tend to recommend avoiding treating a folate deficiency in preference to a B12 deficiency and to start B12 treatment first - but only by 24-48 hours.

There have been one or two cases where supplementing folate in the presence of a B12 deficiency has resulted in in irreversible neurological damage - there is also a study in fruit bats that showed this effect but, understandably, there haven't been any actual studies in humans.

Failing to treat a folate deficiency for a significant length of time after a B12 deficiency is being treated would mean that the processes - which includes ones that maintain myelin - that require both B12 and folate still won't run until the body has enough of both - hence the short period between starting B12 treatment and starting folate treatment

[Ritchie1268 in reply to Gambit62]

Thank you Gambit62.

So because I was both B12 & Folate deficient as well as PA & I did start to take 400ug of Folic acid after my B12 injections started, I assume that I'm ok to carry on taking the 400ug Folic acid daily?

I just wondered why I haven't slept for the last 2 days & was wondering if it was due to SI daily since Friday, i.e too much B12 etc.

But, my symptoms have more or less vanished today?

[Gambit62 Administrator in reply to Ritchie1268]

yes, 400mcg isn't a really big dose of folic acid - normally doses of 5mg are used - so not much of a risk and if it was going to happen it would have happened when you started. Its a very rare response but its very high impact if it happens - hence the extreme caution.

People respond very differently to B12. It may be worth experimenting with time of day if you are injecting. I tend to find that I sleep better if my B12 levels are high but some find the opposite is true.

Good to hear that things are improving.

[Ritchie1268 in reply to Gambit62]

Thank you for that.

Very helpful thank you. Here's hoping I catch up on some sleep tonight

[Ritchie1268 in reply to Foggyme]

Yep, just as I thought. I am losing the plot completely 😁

Thank you Foggyme 👍

[Foggyme Administrator in reply to Ritchie1268]

Ritchie1268...worth noting that the folate trap and over-supplementation with folic acid are two different mechanisms (the folate trap can occur in the absence of over-supplementation but in the presence of errors of metabolism) with potentially the same result...high folate levels....both can potentially result in neurotoxicity and / or side effects of over supplementation (where over supplementation is the cause). So...it's also possible to over-supplement and have side effects from that, without triggering the folate trap (though this could be a potential outcome if over-supplementation continued and folate levels were raised to extremely high levels (because the body would eventually be unable to process the excessive amount of folate efficiently).

Treating folate deficiency in the presence of undiagnosed and untreated B12 deficiency can result in subacute degeneration of the spinal cord...but that's more to do with 'masking' and the lack of treatment for B12 deficiency (the myelin sheaf surrounding the nerves breaks down) - so caused by lack of vitamin B12 rather than too much folate).

400mcg as a maintenance dose is not a hugh amount. However, recommended daily dose, including that from diet, should not exceed 1000mcg (1mg), so if you are taking in 400mcg through additional supplementation and this is more than your body needs, then folate levels build up over time...(bit like filling the bath slowly until it eventually runs over and floods the house - exactly what happened to me (folate, not the bath) 🤷‍♀️).

So...still worth stopping the folic acid to see if this has an effect on your insomnia....just in case....

As to plots...mine went long ago 🤣🤣🤣.

Good luck...let us know how you get on. 👍

[Ritchie1268 in reply to Foggyme]

Many thanks for that Foggyme!

To be honest, my folate intake through diet alone won't be anywhere near enough.

My partner bought me some Magnesium tablets from health shop a few weeks ago to see if it helped my constant aching legs but I stopped taking them. I took some yesterday & not sure if coincidence but last night was much better. I didn't sleep great, but it wasn't caused by my legs like the 2 nights before.

Thanks again 👍

[pollianna in reply to Ritchie1268]

Hi,

Sorry you are going through all this.

Thank God we can SI

I have autoimmune issues and when I am about to flare I get a surge of adrenalin which can affect my sleep. Normally I am off as soon as my head hits the pillow.

I take huge amounts of magnesium citrate as it absorbs well. Your body will let you know how much you can tolerate..I have done this for years with no ill effects.

I found loading doses helped me so much. Like you I saw a change in myself. When I switched to weekly it quickly fell away so after 2 weeks I loaded again.

Someone here suggested to extend by a day which I think has helped a lot ie

every day, every other day, every 3 days and on. I plan to settle at once a week if it goes well.

You will find your ideal time..

[Ritchie1268 in reply to pollianna]

Thank you pollianna.

Funny enough, I just this second replied to Foggyme saying I took some Magnesium yesterday after not taking any for a while, thinking I didn't need it, guess I was wrong!?

My original plan was to SI daily just for a week at first to see just how I felt. Yesterday after SI daily since Friday was best day I've had so I'll continue to see what happens, but will also start taking the magnesium tablets regular again.

Many thanks for your reply.

[pollianna in reply to Ritchie1268]

Sounds like a plan 😊.

I think my little bod didnt like me jumping to weekly dosing after the alt days. The slow extending seemed to feel right.

I'm sure as time goes on the new blood cells will take over from the old tired ones and the positive change will feel more permanent.

I remember telling doctors years ago my blood feels tired and being told I was mental.

Who's mental now lol

[Ritchie1268 in reply to pollianna]

Good for you!

Mental 😄 heard many stories of Dr's saying that before!!

Just feel after all my life hardly visiting a Dr, like a hypocondriac all of a sudden.

I'm sure, just as I kept a diary of how I felt after getting injections when first diagnosed, I will find a happy balance, (no pun intended).

I will stick to SI everyday till Friday as planned & go from there. And also start taking 3 magnesium tablets per day again.

If it means I have to SI everyday, every other or every whatever then, just as long as I feel how I did yesterday & so far this morning, then that's what I'll do.

Many thanks again for your reply 👍

[terrybraden]

Hi Ritchie1268

Best to SI in the morning when you get up. The Vit. in vitamin is for energy, which you need for the day ahead. This should take care of the sleep issue.

As for the restless legs, using magnesium will help that, plus I use it in the evening before bed to help with sleep, it relaxes my legs. You also have the added benefit that it relaxes you and it’s good for muscle cramps.

I take all my vitamins and supplements in the morning. I feel so much better since I started B12 and folate supplementation.

I’m not a doctor, just an informed consumer.

[Ritchie1268 in reply to terrybraden]

Thank you for that 👍