Why are B12 supplements making my symptoms so much worse?

[sofa]

Hi,
I just wondered if anyone knew why B12 greatly worsened my symptoms?

I had an adverse reaction to an antidepressant in January, and since I have been struggling with various symptoms. I had covid in march, which made it all worse and I have struggled with fatigue and bad brain fog, depression and there things since.

I took 1000 mcg cyanocobalamin as prescribed by my doctor for my B12 deficiency (my B12 level is 154). I took it for five days, and noticed a worsening of my symptoms straight away.
I quit two weeks ago, but after I quit, I have continued getting worse. Now my condition is really bad.

I have gotten insane anhedonia and total loss of emotions. I cant feel emotions in my body or mind. I can force myself to cry, but I dont feel it, and there is no release. I am just stuck in either this insane dull mode or depression. Its hell. I cant get out. I cant feel any interest, motivation, pleasure, happiness, joy, sadness, anger. I am just stuck in this strange mode.

At one point it felt like my soul just left my body, and it feel so strange now. My sense of touch is greatly diminished and my body almost feels a little numb. When I take a shower it is like I cant feel the warmth properly and it does not make me feel anything good. It is like my presence left. My feet are constantly cold and feel strange, especially under my feet the sensitivity feels less.

It is so strange this disconnection from my body. When i touch my leg it feels dead and not like my leg. All my senses are off.

My arm fell asleep because i was laying on it too long, but it did not prickle as bad as it used to. It probably did, but the feeling was dull and more distant, like i could not reach it properly. Like it was happening in some other strange arm. I also struggled to understand what the feeling was and i could not recognize it at first.
This happened before as well. I had pain in my stomach. The pain was dull and strange and i Did not understand what it was, but then i thought it was a period cramp!

I have many sensations in my body, but now i cant figure out what they are.

After I took the B12 I also got more nerve pain and burning in mye legs that was not there before. I also got a bout of bad akathisia and I still have bad insomnia. I also have bad fatigue.

I am stuck in a state of restlessness. I cant calm down. My body cant feel comfort or calm. I cant calm myself down because my brain does not react to any stimulus that might be calming. I feel trapped. My body does not get tired either, even though I am in a constant restless state with no escape. I have tried blankets, hot bottles and everything. My body does not react to it and I get no emotions and just stay restless.

My smell is gone, and the few things I can smell makes me feel nothing. It is the same with taste.
Basically all senses are dulled and makes me feel no emotions.

My memory is also really bad. My head is a mush and I cant think clearly. I have trouble accessing my toughts and my memories. Sometimes I actually feel like I have dementia. I have lost ability to visualize images in my head, and imagine touch, smell and tase.
I have this bad pressure at weird places in my head. Mostly the back of my head and the palate and nose.

My sexual function has also decreased, and my orgasms are way more muted.

Has anyone experienced this taking B12 supplements when deficient?

What is the mechanism? I keep getting worse after quitting two weeks ago, I dont understand that.

Can this get better and how long will it take?

I also need the B12 for my deficiency. It is to bad to correct by food. What should I do to prevent this from happening again? Is it better with B-complex? Are there other things I need to think about?

 

[Pyrrhus]

I took 1000 mcg cyanocobalamin as prescribed by my doctor for my B12 deficiency (my B12 level is 154). I took it for five days, and noticed a worsening of my symptoms straight away.
I quit two weeks ago, but after I quit, I have continued getting worse.

This is a common experience with some people. I can not tolerate more than 250 mcg B12 per week. And it takes me 2-3 days to recover from a single 250mcg dose. For some people, these start-up symptoms go away after a month or two. Some people have to slowly phase-in the B vitamins in order to just be able to tolerate the start-up symptoms.

Here are some basic tips that have personally helped me tolerate the start-up effects of B vitamins:

1. As a general rule "start low and go slow", which means start with a low dose and very slowly increase the dose until the start-up effects go away.
2. Before tackling folate or B12 supplements, first try taking a simple B vitamin supplement without any folate or B12, such as the B multivitamin called "B minus" from the company Seeking Health. This multivitamin includes all the B vitamins in relatively reasonable quantities, but without any folate or B12, allowing you to separately decide upon your own folate or B12 dosages. https://www.seekinghealth.com/products/b-minus-100-capsules
3. Once you can tolerate the B vitamin supplement well, try adding 400mcg methyl-folate. Start with one dose, wait a couple days until the effects wear off, and then try the second dose. If you experience unusual muscle cramps, try taking low doses of potassium as many people find that a bit of potassium helps to lessen the start-up effects.
4. Once you can tolerate 400mcg methyl-folate daily, try adding very small doses of hydroxy-B12. Again- start low and go slow. Different people can have very different reactions to B12. If you experience unusual muscle cramps, try taking low doses of potassium as many people find that a bit of potassium helps to lessen the start-up effects.

Hope this helps.

Here are some related discussions:

B12: a simple 5-second poll for everyone
https://forums.phoenixrising.me/threads/b12-a-simple-5-second-poll-for-everyone.80150/

What is your understanding of the methylation cycle trap or blockage?
https://forums.phoenixrising.me/thr...the-methylation-cycle-trap-or-blockage.83459/

 

[helen1]

@sofa
The form of B12 you took (cyanocobalamin) is problematic for those of us who can’t convert it to the active useable forms (methylcobalamin & adenosylcobalamin).

The problem with cyanoB12 is that it attaches to B12 receptors thereby blocking the useable forms from accessing them. When you don’t have the required enzymes to convert the cyano, it sits there blocking useable B12.

The result: B12 deficiency. Some of the symptoms you’ve described are textbook B12 deficiency symptoms, notably nerve pain, fatigue, insomnia, low mood, low cognition, so maybe that’s what happened.

You might want to consider getting yourself some methylB12 or adenosylB12, or both, or eat some high B12 food (clams, liver, oysters, mussels etc).

 

[perchance dreamer]

I agree with @helen1. You might be having trouble with the form of B12. I have to take just certain forms of B12, or I don't absorb it and get problems such as insomnia and agitation. I need both methyl B12 and hydroxy B12 forms.

I can suggest a couple of products you might look at. This first one is a topical, which allows flexibility of dosing so you can experiment. When I used to take it, I learned that one pump when I woke up and 1/4 pump later in the day worked best for me.

https://www.neurobiologix.com/Neuro-Immune-Stabilizer-B12-B6-Vitamin-D-Cream-p/46.htm

Another I used to take is this sublingual. I like this formula because it doesn't have a high dose of methylfolate, which can be too stimulating and insomnia inducing for me. Some formulas have much higher levels of methylfolate, which is great for some people, but definitely not everyone.

https://www.amazon.com/Progressive-...ix=progressive+labs+methyl+b12,aps,138&sr=8-5

 

[sofa]

@sofa
The form of B12 you took (cyanocobalamin) is problematic for those of us who can’t convert it to the active useable forms (methylcobalamin & adenosylcobalamin).

The problem with cyanoB12 is that it attaches to B12 receptors thereby blocking the useable forms from accessing them. When you don’t have the required enzymes to convert the cyano, it sits there blocking useable B12.

The result: B12 deficiency. Some of the symptoms you’ve described are textbook B12 deficiency symptoms, notably nerve pain, fatigue, insomnia, low mood, low cognition, so maybe that’s what happened.

You might want to consider getting yourself some methylB12 or adenosylB12, or both, or eat some high B12 food (clams, liver, oysters, mussels etc).

Will the cyanocobalamin leave the receptors eventually, or are they ruined forever?

I quit two weeks ago and I still feel worse every day. Do you know why that might be? I have tried eating food that has more B12.

How can I test if I cant covert it?

 

[caledonia]

Just popping in so you can see my signature link. I have extensive info on methylation supplements and how to handle taking them.

 

[helen1]

Will the cyanocobalamin leave the receptors eventually, or are they ruined forever?

I quit two weeks ago and I still feel worse every day. Do you know why that might be? I have tried eating food that has more B12.

How can I test if I cant covert it?

@sofa I don’t now how long the cyano will hang around but its definitely not permanent. I don’t know why you would feel worse every day. I bet @Freddd would know though.

 

[Pyrrhus]

How can I test if I cant covert it?

Unfortunately, there's no simple test to see if you have low glutathione.

Since glutathione is required to convert cyano-B12 to hydroxy-B12, people who have low glutathione may have problems converting cyano-B12 to hydroxy-B12, which is the main circulating form of B12 in the body.[1] But I personally wouldn't worry about the cyano-B12 hanging around in the body for too long if you only took it for 5 days, two weeks ago.

If you're interested in the science: glutathione can attach to B12 when B12 enters the cell and it may even be necessary for B12 to be optimally utilized inside the cell.[1] This glutathionyl-B12 may be converted to methyl-B12 (or adenosyl-B12) during the actual enzymatic use of B12.[2][3] (I'm skipping a lot of details.)

A problem with people who have low glutathione is that blood tests can theoretically show normal, or even excessive B12 levels despite the presence of symptoms of B12 deficiency. This is because the B12 in the blood might not be fully utilized by the cells lacking glutathione. There is also the possibility of B12 deficiency in the brain, but with normal B12 levels in the blood.[4] (This has been mostly talked about in autism, but may apply equally to ME patients.)

Note that methyl-folate (vitamin B9) is often recommended to be taken with B12, as the two vitamins work together. The standard daily dose of methylfolate is 400mcg (micrograms, not milligrams). Also commonly recommended are the other B vitamins, especially vitamin B6 (pyridoxal-5-phosphate, not pyridoxine). Vitamin B6 also works somewhat closely with methylfolate (vitamin B9) and B12.

Long story short: It is perfectly natural for an ME patient to have dramatic, sometimes intolerable, start-up effects when starting B12 or folate. Rest assured that these are start-up effects, not permanent side effects. As with many supplements that turn out to be helpful, people often recommend that you "start low and go slow".

If you're interested in the science, here is a related discussion:

Low glutathione in ME/CFS brain: a pilot magnetic resonance spectroscopy study at 7 Tesla (Godlewska et al., 2021)
https://forums.phoenixrising.me/thr...-study-at-7-tesla-godlewska-et-al-2021.85779/

I hope this helps.

References:
[1] https://www.ncbi.nlm.nih.gov/pubmed/2357215
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5312744/pdf/42-49.pdf
[3] https://ghr.nlm.nih.gov/gene/MMACHC
[4] https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0146797&type=printable

 

[sofa]

This is a common experience with some people. I can not tolerate more than 250 mcg B12 per week. And it takes me 2-3 days to recover from a single 250mcg dose. For some people, these start-up symptoms go away after a month or two. Some people have to slowly phase-in the B vitamins in order to just be able to tolerate the start-up symptoms.

I took 9 mcg yesterday to start low, but I still got extremely restless and today my head feels worse than ever.
The problem is I just seem to get worse, and then I dont get good again after.

It is two weeks since the last 1000 mcg cyanocobalamin, and I still feel extremely bad from that one. Is it the cyanocobalamin then or is it something else that is making me so bad?

 

[sofa]

@sofa I don’t now how long the cyano will hang around but its definitely not permanent. I don’t know why you would feel worse every day. I bet @Freddd would know though.

So feeling worse every day is not normal?

 

[Judee]

There's a doctor on YouTube who said to get things like SIBO under control first. He said the bacteria utilize methylation too so taking those supplements first just fertilizes the bad guys.

I think that's why a lot of us test for or have nutritional deficiencies. The pathogens are using those things up before our bodies can.

Since I've been treating for possible Lyme co-infections, my hair is getting thick for the first time in my life. I've had ME for most of it.

???

Anyway hope you can figure out what's happening in your case.

 

[Pyrrhus]

I took 9 mcg yesterday to start low, but I still got extremely restless and today my head feels worse than ever.
The problem is I just seem to get worse, and then I dont get good again after.

Everyone reacts differently to B vitamins. And 2 weeks may not be enough time to recover, as some start-up effects can last 8 weeks.

As others have recommended, perhaps consider first trying methyl-folate (vitamin B9) and vitamin B6 (pyridoxal-5-phosphate, not pyridoxine) before trying hydroxy-cobalamin or methyl-cobalamin (vitamin B12). This might help to reduce the start-up effects from B12.

It is possible that there may also be some negative start-up effects with folate (B9) or B6 as well, but these start-up effects seem to be much more tolerable than the start-up effects from B12. For example, you could start with only one dose per week and, over 7 weeks, slowly work up to one dose every day.

Once you can take folate (B9) or B6 on a regular basis without any negative start-up effects, then you might be ready for B12. Again, everyone can react differently, so it is often recommended to listen to your body, start with one dose, and be patient until you are ready for the next dose.

It is two weeks since the last 1000 mcg cyanocobalamin, and I still feel extremely bad from that one. Is it the cyanocobalamin then or is it something else that is making me so bad?

I don't think it's possible to know for sure, but to me, it sounds more like start-up effects. According to our poll, approximately 9% of people with ME get these negative start-up effects the first time that they try B12. (I'm one of that 9%.)

I think that's why a lot of us test for or have nutritional deficiencies. The pathogens are using those things up before our bodies can.

Or more specifically, the inflammation from pathogens can use up these nutrients, as chronic inflammation uses up some nutrients faster than they are normally replenished by the diet...

 

[sofa]

Everyone reacts differently to B vitamins. And 2 weeks may not be enough time to recover, as some start-up effects can last 8 weeks.

Do you know why the symptoms can last for up to eight weeks? Do you know the mechanism?
Does B12 affect dopamine or serotonin? Since it drastically worsened my anhedonia?

The anhedonia has been getting progressively worse since I took cyanocobalamin two weeks ago.

 

[Pyrrhus]

Do you know why the symptoms can last for up to eight weeks? Do you know the mechanism?

That's a good question. Unfortunately, I don't think anyone knows for sure why some people get such dramatic start-up effects from vitamin B12.

 

[caledonia]

Assuming you cranked up methylation, once it gets going, it can take quite awhile (weeks or months) for it to slow back down on its own. The methylation cycle and all the other cycles it affects are very complex, and over cranking one part of it can have many effects downstream.

Plus many of the people on here have messed up methylation cycles as well as other cycles and enzyme pathways all over the body. Overloading one part of a pathway may have negative consequences if there is a partial block somewhere downstream, or a deficiency of a co-factor needed to handle something.

1000mcg is a lot to start with. There have been reports on here of people needing to go to the ER because of methylation startup. There are some things you can try to feel better.

I suggest the following documents -

1. Start Low and Go Slow - How To Be Safe On A Methylation Protocol
2. Roadblocks to Successful Methylation Treatment

 

[sofa]

That's a good question. Unfortunately, I don't think anyone knows for sure why some people get such dramatic start-up effects from vitamin B12.

Will the start-up symptoms last that long even if I have quit the medication?

 

[caledonia]

Will the start-up symptoms last that long even if I have quit the medication?

Yes, it's possible.

 

[YippeeKi YOW !!]

Everyone reacts differently to B vitamins. And 2 weeks may not be enough time to recover, as some start-up effects can last 8 weeks.

I apologize up front for being the bearer of bummer news, but it's not as bad as it could be. It just might take longer than you, or any other rational human, would expect.

Early on, I gradually developed bad reactions to almost everything from supps and herbs to basic foods. Pretty much anything I put in my mouth and/or body, and they were things that I'd taken without issue for practically my whole life.

And I think one of the first things that I realized I was suddenly sensitive to was B-comp ..... I say "I think" because so much went wrong so fast, including memory and cognition, that it's hard to remember the exact sequence.

The short version is that it took several years before I could tolerate any of it again, but I was reactive to soooooo much more than just the B-12 that I dont think you'll be facing the same thing. I also didnt have access yet to Phoenix Rising, I didnt even know it existed, so I had no helpful input about what was happening to me or how to deal with it.

You might be facing more than a couple of days or a couple of weeks, but I can almost certainly promise you that it wont be measured in years. Keep reading these threads, re-read some of what was posted here by @Judee , @Pyrrhus , @helen1 , @perchance dreamer, and the links to info that @caledonia posted for you, because it's really solid, good information and might turn the tide for you.

Most of all, don't give in to panic, don't beat yourself up over this, and don't give up !!! A surprizingly large number of members here have faced the same thing with B-12, and B vitamins in general, and we all survived. Some of us did better than just survivie it.

Soooooo ..... onward and upward !!!!

 

[YippeeKi YOW !!]

@caledonia
As a quick aside, I've wanted to tell you for the longest time that it was your posts and @PatJ 's that finally convinced me to join PR, which I'm pretty sure saved my life ....

So thank you for that !!!!

 

[JES]

Do you know why the symptoms can last for up to eight weeks? Do you know the mechanism?
Does B12 affect dopamine or serotonin? Since it drastically worsened my anhedonia?

The anhedonia has been getting progressively worse since I took cyanocobalamin two weeks ago.

B12 can store in the liver unlike most other vitamins. Allegedly, the average person has enough B12 stores to make up for even three to five years after they stop consuming B12. Having said that, a three ounce serving of beef contains about 7 micrograms and average dietary intake is probably around 3 micrograms per day, so you will always get a certain amount from diet as well.

I noticed very negative effects from all kinds of B12 as well, but eventually, things got back to normal. Wish you the best.