Odd thing when stopping Methylcobalamin

[Coolie]

This is really a continuation of my story. Just to recap, I'm the guy who had IBS for years and had amazing results when taking Zinc and B12 and I'm not on a methylation program.

So, I started taking Methylcobalamin partly because of this forum and my understanding of how it's more useable by the body without various stages of metabolisation and I believed this may be good for me with a deficiency.

So my 60 day supply run out 3 or 4 days ago, and I thought as a test, I would switch from 5000mcg mcb B12 in the morning and 500mg normal supermarket B12 in the evening TO: 2 x 500mg normal B12 a day.

What is immediately apparent with 24 hours is mainly neurological symptoms which had gone when I initially started taking B12, not the Methylcobalamin, but right at the start when I first realised I was short on vitamins, even though I am still taking some B12?

Has my body "got used" to those high levels of B12 and is now suffering or is it a genuine proof of some underlying disorder such as low spinal fluid B12?

The symptoms which have come back are mainly neurological: anxiety, chronic biting of nails, pulling out hair, lack of confidence, unsteady on feet, unsteady eyes, and really important, the problem I had all my life until B12: "day-dreamy eyes", please make no mistake, this day dreamy eyes is not something I made up, it's a VERY noticeable symptom which affects me.

Any help appreciated. The replacement methylcobalamin has been ordered!

 

[minkeygirl]

Say again? You confused me what did you notice?

 

[Victronix]

When I stopped B-12 early on, briefly, when I was having trouble with side effects, I got a horribly black depression, among other things. It was awful. I was diagnosed with a B-12 deficiency, so I had to take B-12, but it was a bumpy ride getting used to it and when you are really low in B-12 and start it, it will stimulate a lot of nerves. Everyone will have different symptoms depending on what their issues are.

Stick with it!

 

[Coolie]

Say again? You confused me what did you notice?

I covered that bit at the end, where it says, "The symptoms which have come back are..."

 

[ahmo]

@Coolie

500mg normal supermarket B12 in the evening TO: 2 x 500mg normal B

normal supermarket B12 means ineffective B12. Fred has experimented w/ B12 brands and methods of ingestion for years. It matters what you use. It seems to me that you've demonstrated your need for B12. I imagine, altho I do not know, as this has not applied to me, that there are those who need B12 w/o the need for Methylfolate, so no need to be on a methylation program. I'm linking a very scary vid re B12 deficiency. Maybe it will offer you some understanding. cheers, ahmo

Diagnosing and Treating Vitamin B12 Deficiency‬
http://www.youtube.com/watch?feature=player_detailpage&v=QqjyAeOLyKM

 

[PennyIA]

What is immediately apparent with 24 hours is mainly neurological symptoms which had gone when I initially started taking B12, not the Methylcobalamin, but right at the start when I first realised I was short on vitamins, even though I am still taking some B12?

Has my body "got used" to those high levels of B12 and is now suffering or is it a genuine proof of some underlying disorder such as low spinal fluid B12?

I do think your symptoms do sound a lot like issues with b12.

I know for methylfolate that someone (I'll never find the study, but someone else might know where it was) proved that taking folic acid which uses the same receptors as methylfolate can block methylfolate from getting into/through ... I can't imagine that there might not be a little something like that tied to cyanocobalamin. In my case. I was on cyanocobalamin injects and had a 'boost' for about three weeks, which once it ended, developed into a crash. Methylcobalamin was the only answer to get me out of that crash.

I also truly believed the start of all my symptoms was related to taking folic acid, cyanocobalamin and b6 (not p-5-p). The symptoms all started within five months of taking the supplements. I did end up testing positive for B6 toxicity which the only reason it exists as a diagnostic measure is after some athletes downed excessive quantities of B6 and got ill. Those same athletes weren't taking mega doses of B12 or folic acid... but I almost wonder if there aren't some of us who could get sick from too much of it (especially if you have genetic reasons why you might not be able to process them into a usable form).

 

[Lisons]

When I stopped B-12 early on, briefly, when I was having trouble with side effects, I got a horribly black depression, among other things. It was awful. I was diagnosed with a B-12 deficiency, so I had to take B-12, but it was a bumpy ride getting used to it and when you are really low in B-12 and start it, it will stimulate a lot of nerves. Everyone will have different symptoms depending on what their issues are.

Stick with it!

I got this too I never realized this was the reason. Silly me

 

[Little Bluestem]

I imagine, altho I do not know, as this has not applied to me, that there are those who need B12 w/o the need for Methylfolate, so no need to be on a methylation program.

It is not a good idea to either take B12 without B9 or B9 without B12 for very long. Taking one without the other can induce a deficiency of the other. Not everyone needs to be on a full methylation program, though.

 

[Coolie]

Hold on a minute. I was told the Potassium levels could drop while on Methylcobalamin so I upped my intake of fish to compensate. No one said anything about it being essential to take B9 or Folate. Can anyone corroborate this?

 

[Critterina]

Hold on a minute. I was told the Potassium levels could drop while on Methylcobalamin so I upped my intake of fish to compensate. No one said anything about it being essential to take B9 or Folate. Can anyone corroborate this?

No, not me. But there are some on this forum who swear by it. I think it may depend on a lot of your genetics and whether you get enough B9 (which is folate) in some form in your diet that you can use. Trust your experience (and watch the people disagree with me.)

I want to be sure, you were taking some amount of cyanocobalamin plus zinc and your symptoms disappeared.
Then you switched to 5000 mcg of methylcobalamin (that's 5 mg) and nothing happened (same zinc, I assume)
Then you switched to 2x500 mg (that's 1000 mg) of cyanocobalamin (same zinc) and your symptoms reappeared.

I can't tell from your profile where you live, but methylcobalamin is widely available in the United States. Costco, Whole Foods, Sprouts, Vitamin Cottage, and mostly any vitamin store (even GNC) will have it. Go get some and keep an extra bottle on hand. It seems important for your health. (Just a suggestion. )

 

[Coolie]

I really appreciate your answer.

I going to really try to make this clear as it's a little complex...

I first became aware I may be low on vitamins when my sense of smell came back after taking Zinc. This is where it all started and I still take Zinc to today.

It's not surprising I'm low on vitamins as I had the runs every day for years. (I am now trialling Gluten Free and it's working 80% in combination with lactose free)

I started taking on top of the Zinc, multi vitamin and B-complex. (I had heard that B12 in the B complex might help my chronic Tinnitus) The B complex was making me feel like superman and I was super confident, not loosing my balance, not day-dreaming half the day (more a condition of the eye muscles than day dreaming per se) and just felt incredibly amazing.

That's when I bought 500mg cyanocobalamin which I took on top of the complex but in the evening. I continued to feel good and my hair started growing back and psoriasis cured 90%.

I started checking out the forums and read about methylcobalamin, ordered it.

Generally feeling good on 60 day supply of 5000 methylcobalamin and frustrated with slow progress of Gluten Free diet, but IBS cleared by 75% on it.

After 60 days, tablets run out, doubled up the cyanocobalamin to twice daily totalling 1000mg. This should have taken me back to when I first felt like superman but instead... I have gone back to day dreamy eyes, unsteady, anxious, biting nails, pulling hair etc.

In other words, I have reverted not to before the methylcobalamin but back to before I started the cyanocobalamin and this was the purpose for this post - to find out why.

Incidentally, my Tinnitus is 3 times louder on running out of methylcobalamin, so my post about it not touching the tinnitus was wrong; it was just so gradual decline, I didn't hear it disappearing. This is good news indeed.

 

[shah78]

@Cooli Go to any ahmo post and read Freddd's protocol summary. You need a methylation program, not just a B12 program. As Freddd says. :EVERYTHING GETS BETTER! The tinnitus is classic!

 

[Critterina]

@Coolie ,

So, when you reverted, you were/are still taking the B-complex? (Sorry to be a little slow here. But it makes me think: a friend started taking folic acid and he said his hair started growing back, too, very noticeably. Now he's just started methylfolate and we're going to see what happens from this and when he goes back to folic acid in 2 months, as he plans to keep switching.)

Tinnitus is a symptom of vitamin deficiencies of B12, D, or E. So, I'm guessing that you have a genetic based difficulty in activating/methylating B12. When you get your results back, look for MTRR +/+. That's my prediction.

And why did this happen? I'm guessing that the original B12 you took was enough for your body when it was limping along, but when you started the methylcobalamin, your body started doing some of it's overdue housekeeping (not sure what, but you increased the demand for methylB12.) Now it's trying to keep up the pace, but it can't with the little bit of cyanocobalamin that you can convert to methyl B12. Just a guess.

The good news will be when the methylcobalamin is restored and the tinnitus disappears again!

 

[Coolie]

@Critterina
Yes, I've never stopped the B complex but it's only a 100% RDA brand. But bear in mind, that it was that which got me excited in the first place.

Maybe there is a case for me to seek out a high or medium strength methyl folate and see what happens?

@shah78 The truth is, I haven't had a lot of time to read up on methylation so I don't know why or how it works or why I would choose it over the supplementation I've embarked upon. Part of the reason I'm in this forum is the complex health issues I've had over years some relating ME, and the other forums about B12 mainly relate to people injecting B12, I presume for pernicious anaemia or no intrinsic factor, whereas I am clearly different to that.

If the results I am getting from a simple B complex tablet and high dose methylcobalamin are so astonishing, I'm not really sure I have seen a case for methylation.

 

[PennyIA]

Hold on a minute. I was told the Potassium levels could drop while on Methylcobalamin so I upped my intake of fish to compensate. No one said anything about it being essential to take B9 or Folate. Can anyone corroborate this?

I do know that taking folate without taking B12 can mask pernicious anemia and can be quite dangerous... but I was thinking you were proposing the opposite. AFAIK - healthy people can take B12 without taking B9... no idea about us special people though...

I do know that I took B12 without B9 while sick for a long time. It didn't make me worse... but it didn't make me better either. I didn't have any remissions of any count until I started taking both in the right forms.

 

[sregan]

@Critterina
Yes, I've never stopped the B complex but it's only a 100% RDA brand. But bear in mind, that it was that which got me excited in the first place.

Maybe there is a case for me to seek out a high or medium strength methyl folate and see what happens?

@shah78 The truth is, I haven't had a lot of time to read up on methylation so I don't know why or how it works or why I would choose it over the supplementation I've embarked upon. Part of the reason I'm in this forum is the complex health issues I've had over years some relating ME, and the other forums about B12 mainly relate to people injecting B12, I presume for pernicious anaemia or no intrinsic factor, whereas I am clearly different to that.

If the results I am getting from a simple B complex tablet and high dose methylcobalamin are so astonishing, I'm not really sure I have seen a case for methylation.

I'd like to know your genetics. Also wondering if you do a good job of recycling folate and wondering if you might run into a folate deficiency in the future possibly?

 

[Coolie]

I haven't had any genetic testing. Can I run into any problems if I just take alongside the methylcobalamin - Metafolin® (L-methylfolate) 1000ug without having read up all the intricacies of methylation. I mean, I don't want to either jeopardise what I've achieved nor cause other issues I don't understand?

 

[sregan]

I haven't had any genetic testing. Can I run into any problems if I just take alongside the methylcobalamin - Metafolin® (L-methylfolate) 1000ug without having read up all the intricacies of methylation. I mean, I don't want to either jeopardise what I've achieved nor cause other issues I don't understand?

Im usually one of those "if it aint broke don't fix it" mentalities. If you are doing well on the B12 only you might just stick with that. If you think you an be doing better a trial of Metafolin might be in order. Knowing your genetics would help determine if you might need to go that route. 23andme.com for $99

 

[Coolie]

@sregan

Thank god my Methylcobalamin arrived. It came from over-seas. I started sweating with minimal exertion after about 4 days without, and then I remembered this used to happen to me and I used to blame it on other things like "being unfit". In fact, a whole host of things have happened to me with this B12 deficit I had. I took the tablet an hour or two ago and my brain is functioning again.

 

[Coolie]

So my other question, if it's true I'm going to need to spend a very long time on this medication (vitamin), are there any other health considerations? Is it best to try to lower the dose (currently 5000mcg) to the optimum or does the body just get rid of unnecessary B12? Is there a half life type build up in the system? The downsides, I have some slight insomnia. This was worse when I continued to take B12 cyanocobalamin on top in the evening. The other thing is severe back, spine and hip / pelvic pain. I believe the new gluten free diet is causing this and not the B12 but I can't be sure. This is against a back-drop of amazing benefits outlined in all my previous posts.