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B12 causing restlessness, anhedonia and sexual dysfunction

Messages
20
Hi!
I made a post a while ago about reaction to B12. I still keep reacting badly. I dont understand what is happening and How.

I keep getting restless and have bad sleep. Also get bad brain fog, concentration and anhedonia.
The new symtom is sexual dysfunction.

I had taken small doses B12 because of deficiency, and decided to try a larger dose again. Took it in the evening and woke up with numbness in my genitals and a shrunk clitoris (sorry NSFW).
The numbness has spread to my whole skin and body, and everything is less sensitive. Cant orgasm.

I also developed extreme anhedonia. Cant Feel anything and my body seems dead.
My cognitive function has never been so bad. I am confused most of the time, have very little thougts and struggle to speak.

This time i also got anxiety and restlessness.
It feels like someone evicted me from my body. I literally have no emotions and feelings in it. Cant even Feel tired when i work out. I have to physically tell myself to stop based on my muscle hurting because i literally Feel nothing in my body

I am sorry, but How on earth can B12 cause anhedonia, reduced cognitive function and sexual dysfunction/body numbness.

Does it cause depletion of dopamine somehow? I Feel like there is no dopamine in my body.

How does it affect the brain? I dont know if methylation is the cause or what. Seems like some extreme dopamine deficiency almost.

My GP wants me to take 1000 mcg injections because my deficinecy is so bad. But i am sort of scared.

Could my symtoms just be a coincidence
 

Wishful

Senior Member
Messages
5,852
Location
Alberta
It would be really useful if there was an up-to-date list of all known functions of each vitamin, amino acid, mineral, etc. Maybe that wouldn't be helpful, because there are just too many functions for each one.

Some people might take B12 because they read about some specific gene which causes a symptom they have, and which has a recommendation for a specific form of B12 and folic acid and whatever else. Maybe they try it and do feel a reduction in the symptom. However, that doesn't prove that it has anything to do with that gene or methylation; it could be affecting one of B12's many other functions. I recently came across mention of B12 being a catalyst for propionate metabolism, which in turn affects many other function in the body.

Trying to figure out which functions are being affected by your B12 injections might be a lengthy or effectively impossible task. Instead, you might experiment with different forms of B12 to see if there's one that solves your deficiency with minimal unpleasant side effects. You can also experiment with cofactors, diet, time of day, or whatever else might have an influence. If you identify enough of these other factors, you might have a chance of figuring out which metabolic functions are involved, which could then point to some more things to try.
 

helen1

Senior Member
Messages
1,033
Location
Canada
@sofa
Which type of B12 are you taking? There are 4 types and the most commonly used in supplements, cyanocobalamin, is the one that can cause problems like you describe.

Another possibility is that you’re starting methylation quickly and so depleting potassium especially. That seems less likely though as it doesn’t sound like you’re taking b12 cofactors, right?

And then there’s the interaction of the B vitamins. If you supplement for example B12 without the other Bs, this will sooner or later lead to at least B2 depletion, since B2 is needed to process the other B vitamins. So with supplementation of other Bs, B2 gets used up unless it’s supplemented also.
 

caledonia

Senior Member
Dr. Ben Lynch has done a lot of work on methylation, including B12. This Facebook post has a lot of good info on troubleshooting B12 issues. He's saying #1 to take electrolytes.

https://www.facebook.com/drbenjamin...ill-tell-you-something-key-/2627969830565167/

I found in my methylation documents a reference to dopamine levels. Some very low dose lithium could be helpful. Lithium helps transport B12 into the cells. It also helps dopamine levels, and some other important stuff. I saw that someone also mentioned lithium in the comments to Ben Lynch's post.

I suggest following your intuition and not doing a B12 shot until you work out which co-factors you're deficient in, and start supplementation for those.

ps. I take a couple of supplements from Ben Lynch's company Seeking Health, and they're high quality supplements. It's a reliable company to purchase from.
 
Messages
20
@sofa
Which type of B12 are you taking? There are 4 types and the most commonly used in supplements, cyanocobalamin, is the one that can cause problems like you describe.

Another possibility is that you’re starting methylation quickly and so depleting potassium especially. That seems less likely though as it doesn’t sound like you’re taking b12 cofactors, right?

And then there’s the interaction of the B vitamins. If you supplement for example B12 without the other Bs, this will sooner or later lead to at least B2 depletion, since B2 is needed to process the other B vitamins. So with supplementation of other Bs, B2 gets used up unless it’s supplemented also.

I am taking 1000 mcg cyanocobalamin orally. Can I Ask How it can cause problems?
Can i also Ask what it means to start methylation too quickly?

Sorry if i sound like a nervous wreck, but i read B12 can cause permanent epigenetic changes due to methylation, and i am scared of permanent symptoms as they are so bad.

I need to treat the deficiency, but dont know How and dont know How B12 can cause such symptoms. Is it changes in brain or body nerves?


I am also taking 400 B9
 
Messages
20
Dr. Ben Lynch has done a lot of work on methylation, including B12. This Facebook post has a lot of good info on troubleshooting B12 issues. He's saying #1 to take electrolytes.

https://www.facebook.com/drbenjamin...ill-tell-you-something-key-/2627969830565167/

I found in my methylation documents a reference to dopamine levels. Some very low dose lithium could be helpful. Lithium helps transport B12 into the cells. It also helps dopamine levels, and some other important stuff. I saw that someone also mentioned lithium in the comments to Ben Lynch's post.

I suggest following your intuition and not doing a B12 shot until you work out which co-factors you're deficient in, and start supplementation for those.

ps. I take a couple of supplements from Ben Lynch's company Seeking Health, and they're high quality supplements. It's a reliable company to purchase from.

Sorry, i do not understand, what is causing my issues? Is it lack of co-factors? Or is the actual B12 changing things in my brain?
What is methylation? Does it cause permanent damage?
 

caledonia

Senior Member
Sorry, i do not understand, what is causing my issues? Is it lack of co-factors? Or is the actual B12 changing things in my brain?
What is methylation? Does it cause permanent damage?

Methylation is one of several cycles in your body that operate things all over the body. It happens thousands of times a second in all your cells. Methylation uses B12 and folate in its cycle. So if you're taking B12, you're increasing the rate of methylation, assuming there is enough folate present to go with the increased B12.

The body is very complex. I don't think B12 would change things in your brain in and of itself. It would most likely be a downstream side effect - changing dopamine levels, or whatever is going on.

What you're experiencing is a temporary situation.

I think that yes, you are lacking one or more co-factors and/or taking a form of B12 that just doesn't sit well with you. People with ME can be randomly sensitive to all sorts of things. I can't tell you how many supplements I've bought and tried and had to throw out for this reason.

So the solution would be to discontinue B12 for now. Then try tiny amounts of the various co-factors one at a time so you know what is doing what - see anything helps clear up your symptoms. If so, then you could retry B12 again, but only take a tiny amount. This will reduce the intensity of any side effects.

Then gradually increase the B12 and/or co-factors if it's well tolerated.

If the co-factors help, but the B12 seems to be a culprit, try the various other forms of B12. Sometimes even just switching brands, or switching from oral to sublingual, etc. can help.

It would be good to keep a symptom journal of what you're trying and your symptoms while you're doing this, to help keep track. Otherwise it's easy to forget what you're doing and get lost in the weeds.
 
Messages
20
Methylation is one of several cycles in your body that operate things all over the body. It happens thousands of times a second in all your cells. Methylation uses B12 and folate in its cycle. So if you're taking B12, you're increasing the rate of methylation, assuming there is enough folate present to go with the increased B12.

The body is very complex. I don't think B12 would change things in your brain in and of itself. It would most likely be a downstream side effect - changing dopamine levels, or whatever is going on.

What you're experiencing is a temporary situation.

I think that yes, you are lacking one or more co-factors and/or taking a form of B12 that just doesn't sit well with you. People with ME can be randomly sensitive to all sorts of things. I can't tell you how many supplements I've bought and tried and had to throw out for this reason.

So the solution would be to discontinue B12 for now. Then try tiny amounts of the various co-factors one at a time so you know what is doing what - see anything helps clear up your symptoms. If so, then you could retry B12 again, but only take a tiny amount. This will reduce the intensity of any side effects.

Then gradually increase the B12 and/or co-factors if it's well tolerated.

If the co-factors help, but the B12 seems to be a culprit, try the various other forms of B12. Sometimes even just switching brands, or switching from oral to sublingual, etc. can help.

It would be good to keep a symptom journal of what you're trying and your symptoms while you're doing this, to help keep track. Otherwise it's easy to forget what you're doing and get lost in the weeds.

How does B12 affect dopamine? Does it cause a lack of it?

I have ADD, and right now it feels like have zero dopamine in my brain. The boredome is profound and it is a constant chase.
It is exhausting.

What are important co-factors?
 

Wishful

Senior Member
Messages
5,852
Location
Alberta
So if you're taking B12, you're increasing the rate of methylation, assuming there is enough folate present to go with the increased B12.

I expect that methylation is not linearly determined by B12 intake. I assume there are systems in place that regulate the amount of B12 in the serum, since we don't get drastic changes from eating or avoiding some meat for a few days or weeks or months. Likewise, there are probably other factors than folate availability that determine methylation rates.

Is there any reliable evidence that taking a B12 supplement does drastically affect methylation rates?
 

JES

Senior Member
Messages
1,335
How did your doctor determine you are deficient? Did your blood test show a clearly below threshold value? Most younger people are not B12 deficient unless they have limited B12 from diet or have pernicious anemia. Depending on the doctor and scale used, "deficient" can be anything from under 300 to under 160 pg/mL.

If you experience this many side effects, you would probably be better off stop taking B12 and talk with your doctor. I think it's quite likely most of your symptoms will improve not that long after you stop.

Generally speaking, if you have ME/CFS, then it's not exactly rare or surprising to react negatively to B12. Many people here react negatively to almost every supplement, even common kitchen spices. I have a problem taking any larger amounts of vitamin C, which is probably due to screwed up metabolic pathways from this disease. 1000 mcg B12, while it's not a huge dose, is still about 200 times higher than what you'd normally get from diet and it's also in a form that is not normally present in food (cyanocobalamin).
 

helen1

Senior Member
Messages
1,033
Location
Canada
I am taking 1000 mcg cyanocobalamin orally. Can I Ask How it can cause problems?
Can i also Ask what it means to start methylation too quickly?

Sorry if i sound like a nervous wreck, but i read B12 can cause permanent epigenetic changes due to methylation, and i am scared of permanent symptoms as they are so bad.

I need to treat the deficiency, but dont know How and dont know How B12 can cause such symptoms. Is it changes in brain or body nerves?


I am also taking 400 B9
@sofa
Cyanocobalamin can cause problems because it requires quite a few enzymes to convert it to the form your cells can use (methylcobalamin or adenosylcobalamin).

Some people don’t have enough of those enzymes so the cyanob12 sits on the b12 receptors, blocking any methylb12 or adenosylb12 you’ve ingested from food from getting into your cells.

In effect, cyanob12 will cause b12 deficiency when this happens. It sounds like that’s what might be happening to you.
 
Messages
20
@sofa
Cyanocobalamin can cause problems because it requires quite a few enzymes to convert it to the form your cells can use (methylcobalamin or adenosylcobalamin).

Some people don’t have enough of those enzymes so the cyanob12 sits on the b12 receptors, blocking any methylb12 or adenosylb12 you’ve ingested from food from getting into your cells.

In effect, cyanob12 will cause b12 deficiency when this happens. It sounds like that’s what might be happening to you.

How long until my body tolerates B12 again?
Do you know why B12 caused restlessness and insomnia?
 

caledonia

Senior Member
I expect that methylation is not linearly determined by B12 intake. I assume there are systems in place that regulate the amount of B12 in the serum, since we don't get drastic changes from eating or avoiding some meat for a few days or weeks or months. Likewise, there are probably other factors than folate availability that determine methylation rates.

Is there any reliable evidence that taking a B12 supplement does drastically affect methylation rates?

Just read any of the number of posts on this website where people are posting in panic because they got overmethylated. Usually it takes B12 + folate supplements. Those two work together to create methyl groups. The doses are usually way higher than what you get from food, so it creates excess methyl groups, and voila, you feel horrible.
 
Last edited:

caledonia

Senior Member
I am taking 1000 mcg cyanocobalamin orally. Can I Ask How it can cause problems?
Can i also Ask what it means to start methylation too quickly?

Sorry if i sound like a nervous wreck, but i read B12 can cause permanent epigenetic changes due to methylation, and i am scared of permanent symptoms as they are so bad.

I need to treat the deficiency, but dont know How and dont know How B12 can cause such symptoms. Is it changes in brain or body nerves?


I am also taking 400 B9

Ok, so there is the smoking gun. B9 = folate (aka folic acid).

You are taking 1000mcg of cyanocobalamin (B12) and 400mcg of B9 (folate - form unknown)

I would guess that there is a high chance that you have become overmethylated. Your restlessness and anxiety symptoms also match with being overmethylated.

In that case, your issue is not with the B12, it's with taking both B12 and folate together.

No you do not have permanent symptoms. I've inadvertently done the same thing, as have many people on here. You will get better. It's just a matter of how quickly. If you just stop the supplements and do nothing else, your methylation symptoms will eventually go away, but it may be days, weeks, or months. Or you can do it the quick way.

Here is what I suggest:

1) Stop taking both B12 and B9.

2) Take a small amount of the nicotinic acid form of niacin (just regular niacin, aka B3, nothing fancy). Small is 50 to 100mg. It will not hurt to try this whether it helps you or not.

Note: If you take too much, you may get the infamous "niacin flush". It will feel like a sunburn on your arms and legs. If that happens, it's harmless and will go away in about 30 minutes. The next time, try a smaller dose, so you don't flush.

3) Notice if you feel any relief. If so, keep taking the niacin every 4 hours or even sooner than that. Take it when you notice the overmethylation symptoms returning. When this happened to me I had to do this for about 5 days.

4) Reply back as to what happened.
 
Last edited:

helen1

Senior Member
Messages
1,033
Location
Canada
How long until my body tolerates B12 again?
Do you know why B12 caused restlessness and insomnia?
@sofa
I think you’ve misunderstood me. Cyanocobalin causes B12 deficiency in some people (see my post above) so what you may be experiencing are B12 deficiency symptoms. Insomnia and anxiety are definitely two of the many B12 deficiency symptoms. You might want to stop taking the cyanoB12 and start eating B12 rich foods.

I’m sorry you’re having such a hard time. It can be very frightening to feel so awful.
 
Messages
20
Ok, so there is the smoking gun. B9 = folate (aka folic acid).

You are taking 1000mcg of cyanocobalamin (B12) and 400mcg of B9 (folate - form unknown)

I would guess that there is a high chance that you have become overmethylated. Your restlessness and anxiety symptoms also match with being overmethylated.

In that case, your issue is not with the B12, it's with taking both B12 and folate together.

No you do not have permanent symptoms. I've inadvertently done the same thing, as have many people on here. You will get better. It's just a matter of how quickly. If you just stop the supplements and do nothing else, your methylation symptoms will eventually go away, but it may be days, weeks, or months. Or you can do it the quick way.

Here is what I suggest:

1) Stop taking both B12 and B9.

2) Take a small amount of the nicotinic acid form of niacin (just regular niacin, aka B3, nothing fancy). Small is 50 to 100mg. It will not hurt to try this whether it helps you or not.

Note: If you take too much, you may get the infamous "niacin flush". It will feel like a sunburn on your arms and legs. If that happens, it's harmless and will go away in about 30 minutes. The next time, try a smaller dose, so you don't flush.

3) Notice if you feel any relief. If so, keep taking the niacin every 4 hours or even sooner than that. Take it when you notice the overmethylation symptoms returning. When this happened to me I had to do this for about 5 days.

4) Reply back as to what happened.
@sofa
I think you’ve misunderstood me. Cyanocobalin causes B12 deficiency in some people (see my post above) so what you may be experiencing are B12 deficiency symptoms. Insomnia and anxiety are definitely two of the many B12 deficiency symptoms. You might want to stop taking the cyanoB12 and start eating B12 rich foods.

I’m sorry you’re having such a hard time. It can be very frightening to feel so awful.

Hi!
Sorry again, but i am really confused.
Is it overmethylation or cyanocobalamin that is my issue?

Many people take cyanocobalamin and have no issue with it causing exess deficiency. So why is it causing deficinecy in me?

Also what do these methylation groups do that causes such effects in the body? I just dont understand.

I also have cognitive issues i Did not have before i started B12, and anhedonia. How does B12 cause anhedonia and loss of emotions? My whole skin is also less sensitive after the B12.

How long does the effects of methylation and cyanocobalamin last?

Does cyanocobalamin affect dopamine or other neurotransmitters in any way? As i get anhedonia, dissociation and reduced cognitive function?


I need to treat the deficiency as i have neurological symptoms i dont want to stay permanent. Wha
 
Messages
20
I think had a bad reaction to Vit. B12. Almost like an adverse reaction to an antidepressant.

Instant genital shrinking and total body numbness, as well as loss of emotions and bad anhedonia and dissociation.

Do you Anyone else experince somethng similar? To other drugs or supplements and got better again?

I had taken antidepressants before so Maybe i was more susceptable to the B12.
 

Wishful

Senior Member
Messages
5,852
Location
Alberta
How does B12 cause anhedonia and loss of emotions?

I think you're unlikely to find an answer to that. The human body, and especially the brain, is composed of a vast number of interacting reactions, and those vary between individuals. That's why one person with ME benefits from some substance, and another PWME might have the opposite response. I usually try to figure out why something has a certain effect on my ME, but all too often I just accept that "this messes up something that's too complex to figure out". What's important for you is knowing that that specific form of B12 at that dosage gives you a bad reaction, so you should avoid that. Try different forms, or experiment with cofactors, to hopefully find something that does provide a benefit without unpleasant side-effects. This is probably one of those situations where no one else, even the world's top experts, can figure out in advance what treatment is correct for you. You'll have to self-experiment to find which one works best for you. That's what the rest of us are doing with our ME. :meh:
 

helen1

Senior Member
Messages
1,033
Location
Canada
@sofa
Sorry about the confusion. I saw @Caledonia’s answer after reposting so didn’t clarify our different ideas.
Both our theories about what might be happening to you are quite possible.

Caledonia thinks you’ve increased methylation too quickly. The increased methylation can be slowed back down with niacin as she said.

Increased methylation will often cause a big drop in potassium so the other thing people do if they react badly to B12 and folate (major methyl donors which can increase methylation) is to increase their potassium intake.

My theory was quite different. Cyanocobalamin requires a lot of conversions in the body before it can be used. Some people are unable to convert cyanoB12 into the useable forms. Meanwhile, the cyano blocks the B12 receptors from accepting useable B12 from food you’ve eaten. In these people, cyanoB12 causes temporary B12 deficiency.

If you do retry B12, definitely dont use the cyano form. Use the forms that are immediately useable by your cells, methylcobalamin and/or adenosylcobalamin. They’re available as supplements or transdermal oils.
Also be sure to have supplemental potassium on hand.

It’s hard to know without testing what’s going on with you. From experience, your symptoms sound more like b12 deficiency than increased methylation (which is mostly sudden potassium drop).

Hope that clarifies things a bit. Let us know what you decide to do.
 

caledonia

Senior Member
There are several hypotheses that are plausible. What I'm suggesting is an orderly set of trials to help rule things in or out, so you can hopefully figure out what the issue is.

If you try niacin and it helps, that would confirm overmethylation.
If not, then you can try electrolytes or other things. (potassium is an electrolyte)
I agree, cyanocobalamin isn't the best form of B12, and that could be causing issues too.

Like I said before, I suggest discontinuing B12 and B9 and trying niacin first. The reason is that if your issue is overmethylation, it could drag on for quite a long time without intervention. It won't hurt to try niacin either way.

Then report back what happens. Then we can help from there if you need more help.
 
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