bad reaction to methyl b12
 

Hello everyone. My b12 was low so I starting taking Methyl b12 . Every time I take it I get the following symptoms; depression, very irritable, hopeless and depressed, and I don't know how to exactly to explain this, but a general feeling of 'heaviness,' as if gravity is pulling on me twice as hard (weird I know).

The higher the dose, the quicker the symptoms will appear and the more severe.

I have only read of a handful of others reacting this way to Methyl b12 but I have yet to hear an explanation as to what is going on.

I do not have this issue when taking cynacobalamin, even with large doses.

I am not taking any other medications or herbs.

I would greatly appreciate any help on solving this riddle as well as some good advice.

Thanks,

Shane

Hi
you may be genetically an "over methylator"?

I am not up on the latest research on this but think that people who over methylate need to avoid methyl donor supplements eg the methyl B12 where good for others may be a problem for people who over methylate. There is also a lot of new info out on mthfr gene mutation and methylation

Hopefully someone who knows more about this can give you more relevant info.

For now though, it may be wise to stop using the methyl B12 and stick with cyano-

Thanks Chemar for your reply. So, I guess if I may be a "over methylator," then there is a good chance that I may get the adequate amount of b12 from cyno?

Thanks,
Shane

Not necessarily Shane as I think it is not as "bioavailable" that way. So you may need more? but again, this is something someone with more knowledge than I have would be best advising on.

However, if you are an over methylator, then as far as I know, you should avoid any methylated supps.

Thanks Chemar. Are there many other supplements that are methylated that I should be aware of?

Thanks,
Shane

There is a pretty common genetic error in methylation of
both cobalamin and folic acid 10 to 30% cannot do this.
It is tested for with a DNA test---23andme online does this
For 99 dollars... No doctor required.

Did you have any blood work done to see if you need more
B12?

What were the results if you did?

I am on an iPhone so linking is difficult for me now.

But our PN forum on the first 2 pages has two threads by
Muiriann on methylation (MTHFR) and Suzy Cohen's
Blog explaining more. My B12 thread in the stickies on
page one there has all you need to know about B12.

I won't be home until after LaborDay.

I am so glad to hear from you Mrs. D! I have read several of your posts and was hoping that you'd chime in.

B12 was a little under 200 if I remember right, and this was about 3 months ago.

I know that you may not be able to respond for a while but do you think I should just continue with a b12 complex? I have been doubling up on the dose so that would be about 2000mcg of cyano b12.

I absolutely cannot take methyl b12; it turns me into a roid-like-rage-monster! :eek:

Thank you so much for your time in replying to my questions.

Shane

Shane...mrsD may have more details when next she checks in...but if you mean doubling up on a B Complex (ie a supplement that has all the B vitamins) I don't think that is a good idea as not all the Bs are beneficial in mega doses. Some people just seem very sensitive to some of the other Bs so taking above the RDA may not be wise unless you are deficient in them

If you mean by "B12 complex" that is is just a B12 supp...that is different as yes, B12 can be taken at higher doses.

ps here is the B12 sticky info thread from PN forum http://neurotalk.psychcentral.com/thread85103.html

and one of the other threads mrsD referred to
http://neurotalk.psychcentral.com/thread192757.html (methylation)

Thanks Chemar, that makes sense to me. I can just take the B-Complex and just add a little additional B12. Thanks for the links.

The methyl form is one of two types.

The others are dibencozide made by Country Life and a
Few others and hydroxcobalamin which is
More expensive.

These alternate forms are discussed on the B12 thread
at the PN forum.

How did you get so low? The cause may reveal which
Form to use. You must take oral B12 on an empty
Stomach. 3 months of oral is enough time to see
improvements. But if you have the MTHFR mutation
it won't work if cyano form.

Only about 13 mcg are absorbed from 1000 mcg which
Is not much. So you must take it on an empty stomach.

I think what happen to me is that I went on a RAW food diet for about a year. I exercise at a high intensity several times a week. I did not supplement with B12 for a long time, at least a year. I felt great....until I didn't!

I have not had it tested, but everything that I have read and what I have experienced with Methyl B12 leads me to believe that I over-Methylate. What do you think? Also, if I do, is there a better B12 to take that isn't cyano or methyl that wouldn't give me these crazy symptoms? My wife forbids me to take Methyl B12 anymore because it turns me into a monster! :eek::(

Thank you for your time Mrs. D

I gave you the other names to try
above. Cyano has to be activated to
Methyl in order to work at all.

If you are not converting it you would
Only know from blood testing.

If you are low in methyl folate as well
Because of non conversion due to DNA
Error you would have depression.
Methyl folate is a treatment in high
Dose for depression.

You could try OTC Metafolin by Solgar
and see if that helps your mood. 800mcg
a day.

To find more on over methylation etc.
Search-- Dr Walsh methylation Pfeiffer
That phrase keyword will take you to his
Paper. That is still a theory and some
doctors don't follow it.

It may well be cyano could work for
You... But you will need testing every
3 months or so to determine that.

Thank you Mrs. D. Yes, you did mention the other B12's above and I appreciate that information. But, more specifically I am wanting to know if those other B12's are likely to give me similar symptoms as the methyl version? I am a little hesitant to try anything other than cyano now for fear of the severe negative symptoms.

I have read the Pfeiffer and Walsh material and the over-methylation sounds a lot like me.I still need to get tested though. It is my understanding that if one is an OV that they need to avoid methylated supplements; do you agree with this?

Thank you for your time and patience as this is new territory for me.

Shane

The term as Dr.Walsh uses is
OVER methylation and is a Lack of
Methyl folate methyl B12.

If you read Suzy Cohen's methylation
Blog linked on PN forum there is more
explanation. Methylation is a huge
subject encompassing DNA activity
and mRna. Too many methyl groups
there block normal functions. A drug
Used for bipolar disorder strips these
extra methyls and is called Depakote.

This chemical subject is very complex
And affects many systems.. Not just
The conversion of folic acid and
Cobalamin.

Do the cyano then get tested and see
What happens . The best test is the
DNA screen by 23and me. Some of our
Members have done it and found out
They had the genetic error. People with
This error have high risk for heart attacks
And stroke. So it is very important.

Will do. Thanks.:)

adenosylcobalamin is another active form of B12 you may be able to tolerate. From what I understand, this form does not seem to work on the CNS/brain the same way that the methyl form does.

I would start at a low dose of 500 and work up to your target slowly. Only increase it if you do well with it for three days.

This is another name for the dibencozide..
I may not be spelling it correctly on this iPhone

Ohhh....thanks. Why can't they just settle on one name for the same thing? Same with drugs. When John was in the hospital, he was on a lot of drugs and I knew the names and dosage. Then when he was discharged, they would write up discharge orders listing the med he was to take. Of course, they used another name for the same drug. Then, when I went to the pharmacy to fill the scripts, the bottles had another. And they wonder why there are so many medication errors when people are discharged from the hospital.

There can be many errors on discharge papers.
I used to see them all the time.

1) Often residents or interns or nurses
would fail to transcribe IV doses
To oral.

2) With antibiotics some IV forms do
Not come orally so another drug would
have to be written instead.

Hospitals are hot beds of errors!

When I had my son they made an terrible
overdose on me. Then after it was
Discontinued, brought it back at 2 am
To give again 2 days later! But I foiled that one!

I am new to this site so you may need alot of patience. I am desperate for someone to give me guidance because I am not getting anywhere with GP who I really love but for some reason we're missing mark. Last year, aug 2012, i decided to do bloodwork myself because all i kept getting was i'm stressed. The b12 came back 347. My folate was 11. My iron was low. My vit d was low. Went back to the doctor and put on presciption vit d and said to take b12. Got methyl b12 at gnc. starting feeling better. Then got an attack in march 2013Weak. I had not taken the vitamins in 3 weeks. Headache bad. Fainting. severe confusion. on and on. Went to hospital for ms. Negative. For stroke. Negative. Said could find nothing. Went back on b12 sublingually. Felt better. Not back to normal. Just had another attack about 10 days ago. Severe neuropathy. anxiety. extremely soar muscles. Burning. on and on. Cold hands alternating with swollen hands. Dr said it was pernicious anemia. went on B12 injections of methly b12 from *admin edit* because doctor would not prescribed. Felt good yesterday. (better i mean). feeling crappy again today and last nite. Couldn't sleep. Took melatonin. Nope. took quarter of ambien. Nope. Took a clonopin. Slept to 5 hours. Woke up to same thing. slight headache. Forgot to say, went to GNC for methly-folate acid. Took one yesterday and day before. Tested postive for MTHTR (?). have the C677 one. Hetergenous. Am I missing something to get rid of this? I am so frustrated. I hate feeling this way. I think it's a b12 deficiency. could it be something else and I can I get better. If you can give me any suggestions I would be so grateful. I made an appointment with a kineologist this week. I just don't want to take anymore medicine. I take zoloft for the past 17 years and clonopin as needed for anxiety. Which is usually only a couple days a month. Last night I had alot of anxiety. Thank you so much for even listening. Sincerely, Kathleen
age 50. female. if you need to know that.

Has anybody been looking into malabsoprtion syndromes--
 

--most prominently celiac disease?

Many of the symptoms you describe could be from lack of essential nutrients, but if that's the case some thing is likely underlying the inability to absorb or take those in.

Will this neuropathy go away? I made an appointment with a hematologist today to see if the MTHFR mutation is maybe the problem? I will love to feel good again.

Longstanding PN may take a while to heal once the
cause is removed or fixed. If you have hereditary type
That is not reversible (CMT).the longer the PN the longer
The recovery may be. Everyone is different.

Healing depends on diet, lifestyle, avoidance of some drugs
And the body in general.

Thank you Mrs. D for your knowledge. I feel like I'm a tossed salad these days with everything I've been taking. If I think it's going to help, I'll take it.

I read your other posts and I am so grateful for your wisdom. I'll also read your sticky notes. Is the MTHFR the cause of me not getting the b-12 in my system? The MTHFR C677T polymorphism (C/T). My results also say "has a normal or wild-type genotype for MTHFR A1298C".

Should I forget the shots and just do the Vit B12 sublingually on an empty stomach like you said. Does that sound better for treatment? Should I take a vitamin b complex with it? And what about the methyl-folate? Today will be my fourth day taking, it if I do?

One more thing, what should i do when my anxiety is through the roof? Can I take a Klonopin? I could bear with the anxiety if I thought the deficiency problem was going to go away and I would see significant improvement.

:confused: thanks. Kathleen

Long term use of Benzos like Klonopin may cause more PN problems than you think. When that drug wears off, there can be a rush of PN symptoms. This is because the Benzos are mild antiseizure drugs, and suppress pain signals. So those signals will bloom when the drug wears off.

There is a supplement called PharmaGaba made by PharmaGold (I bought mine on Amazon), which is affordable and works nicely but mildly on anxiety. I found for me it doesn't have to be used every day either once your take some for a week or so. I only use one when I need it. This type is better absorbed than other Gaba products. You might look into it.

http://www.nutrigoldinc.com/GABA

It is hard to say about the effects of your specific mutation.
But I do know that the higher your blood levels the more B12 will cross the blood brain barrier and get into the brain. Methyl B12 is used as a cofactor to make melatonin (the sleep hormone) from serotonin there. People with Fibro and MS have been tested and found to have very low B12 levels in the spinal fluid.

Neurological symptoms precede anemia in many people low in B12. It can take a while (several months) to fix damage. If the damage is longstanding, some may be permanent. You will want to take methylfolate too, and when you do-- try to avoid folic acid. Some new papers suggest a competition with both for crossing the blood brain barrier, and mention has been made to avoid folic acid to get the methylfolate to work better.