Started Methylation Supplements, Ended Up In The ER - And Symptoms Still Persist

[krzysiek.s]

Hi Team,

Until a couple of months ago, I was not even aware that methylation was a "thing". I only found out about it after doing a 23andme test, which I started to explore further, and found out it could give me a lot more data than I originally thought.

This is when I found out I could take the data, upload to genetic genie, and find any mutations relevant to the methylation cycle. From there I must have spent 15 hours reading this forum and some other resources on methylation.

My homozygous mutations are:

MTR A2756G
MTRR A66G
MTRR A664A
BHMT-02
BHMT-08

My heterozygous mutations are:

MTHFR C677T
VDR Bsm
VDR Taq
AHCY-01
AHCY-19
CBS A360A

From my research on the above mutations (and trying to understand how they all might interact together), I essentially came to the conclusion that I am likely to be deficient in (or have an increased need for) B12 and folate.

So, I purchased methyl-B12, methyl-folate, TMG, D-ribose, potassium gluconate, adeno-B12, hydroxy-B12.

Then when they arrived, I wanted to individually test the supplements one by one to see if there was any acute reaction to them individually (before combining them all together and not being able to know what is to blame if there was a bad reaction).

I started off with TMG one day, D-ribose the next, and 1mg methyl-B12 the next.

Nothing acute, both positive or negative, so then I decided to ramp things up. This is where the fun began, so I will start it as "Day 1".

Day 1: I took 5mg methyl-B12
Day 2: I took 5mg methyl-B12 + 800mcg methyl-folate
Day 3: I took 5mg methyl-B12 + 800mcg methyl-folate
Day 4: I took 5mg methyl-B12 + 800mcg methyl-folate

On the 4th day, at night time, while driving I experienced heart palpitations and a rapid heart beat. I freaked out and pulled over, thinking I am going to have a heart attack. Called my friend and got them to drive me to the ER.

In the ER, they did a bunch of tests. Blood tests, x-ray of heart, ultrasound, physical exam and EKG. All turned out OK.

Then, on my way out of the ER, as I was trying to piece this all together, I realised this was likely to be due to methylation. It made sense, since I have never had a problem like this before, and since I only just recently started the methylation supplementation.

In hindsight, I then realised I should have been taking in more potassium. I did not expect the methylation to kick in so quick, but apparently it did. My blood tests showed a potassium level of 3.5 which is right on the bottom end of the scale (this was taken the first time in the ER).

Anyway, I STOPPED all supplementation since then. I have taken zero methylation support since May 13th, 2017.

Since then I have noticed that I have a couple of things still going on:

1) I feel that I have an increased need to sleep (usually 7.5-8 hours was enough for me to 'function', these days I am finding 9 hours won't satisfy me). It is hard to be objective with this, so maybe it is a non-issue.

2) The BIGGER thing is that I seem to have developed anxiety out of all of this. This is where my main concern is. I would say that previous to this, I probably had some situational anxiety but nothing extreme.

However, since this time, I have felt quite panicked and anxious. I seem to have developed a general sense of anxiety, and sometimes, acutely, quite a severe anxiety. In one instance (May 20, 2017) I had a panic attack where my HR jumped up to 150 and I called an ambulance to take me to the ER again. They did more tests, but same thing - they say all is OK.

Anyway, I still have a sense of anxiety with me. It is much better now than on May 13th. Probably because I have had a bunch of tests done to show my heart / body is OK. But there is still a lingering feeling of anxiety, which at times feels like it is building up to a panic attack, but I have not had a 2nd one yet (and I don't intend to!).

I am posting here to see if anyone can help me find out whether or not this anxiety can be the cause of something I have done. ie: did my supplementation possibly turn on/off certain genes, where now I have anxiety? Is that even possible? For methylation supplementation to do something like that?

Or is this all likely in my head, in response to the 'traumatic' events that occurred?

I am thinking it is all in my head, but part of me does feel there is a chance that the doses I took have changed something in my body where now I am experiencing this anxiety. I hope that is not even possible, or the case, but I am posting here to get input.

Like I said, all supplementation has stopped since May 13 and I am worried to try anything else until I get my head around what could have happened here. Is it possible for the methylation supplements to cause these effects, from 4 days of supplementation, and then complete cessation?

I have been drinking coconut water every day since, to increase my potassium. I would say I get about 2000mg of additional potassium every day since May 13 from coconut water.

Thanks a lot for reading, would love to hear from you!

 

[krzysiek.s]

It looks like I couldn't edit this thread, but to summarize some of what I have experienced since:

- I am more tired (require more time sleeping)
- Lower libido (wasn't that high before but feels lower now_
- General anxiety (had 1 panic attack)
- Cold hands and feet (it's winter here, this isn't entirely abnormal for me but I feel hands are colder much easier than before)
- Stool seems to be softer, diarrhoea at times too

 

[Eastman]

5 mg of methylB12 is a high amount to start with. I got overstimulated with a much lower dose.

Ben Lynch has some great articles on "Methylfolate Side Effects" and "Preventing Methylfolate Side Effects".

In my case, I stopped B12 supplementation until the symptoms disappeared (took several weeks), then restarted at a much lower dose. Haven't had the overstimulation symptoms since. So you may have to be patient.

 

[krzysiek.s]

@Eastman thanks for your reply, hearing that from you gives me some comfort that my situation is not "uniquely messed up".

When you say you got overstimulated with a lower dose, what was the dose and how many times / days did you take it for?

What were some of the symptoms of overstimulation that you had?

Were you supplementing with potassium even when you stopped B12 but still had the overstimulation?

Did you try something like niacin to bring down the overstimulation sooner?

I have read both articles from Dr. Lynch but am not sure what more to do, given I've stopped all supplementation already.

 

[Sushi]

5mg methyl-B12 + 800mcg methyl-folate

That might be okay as a starting dose for some, but I took a fraction of that and got very sick. I had to stop for about a week and start over with "tooth pick" doses and then slowly work up to 1 mg B12 (I take hydrox) and 800 mcg methylfolate.

 

[krzysiek.s]

@Sushi thanks for that! When you say you got very sick, do you mean you had symptoms of overmethylation?

 

[Sushi]

When you say you got very sick, do you mean you had symptoms of overmethylation?

For me, it just made all my ME/CFS symptoms worse and I was bed-bound and felt like I had a bad flu for a week. I learned my lesson. I never had a problem again when I started with micro doses.

 

[krzysiek.s]

@Sushi thank you I have learned my lesson too. I took what others were saying a little too lightly and clearly started off too strong, and was under prepared in many ways. I've taken supplements before, but usually when you stop any side effects also stop. This is the first time I've taken something, where side effects appear to be on going even after stopping.

I'm going down to my local pharmacy and picking up some nicotinic acid (niacin) and going to see how that effects me in small doses of about 25mg. It's been about 3 weeks since I experienced first symptoms and they are with me to some degree still: some days they are still there, some days they are not.

 

[picante]

How would you describe the anxiety? Is it at particular times of day? (For example, I was having dread, and it was worst in the middle of the night.)

The anxiety could be a neurotransmitter imbalance resulting from taking MeB12 + Mefolate without knowing which co-factors you need. Could someone please post a link to the recommended co-factors? I've lost it, and there are a lot of them. It's a good idea to start the co-factors before the methylation supps themselves.

When supplementing potassium (it sure sounds like you depleted it), you may need zinc and/or sodium to balance it. Thiamine is the biggie, though. That was the one I unknowingly tanked by taking loads of potassium while on the methylation supps. It took me months to pin down the problem:

It is obvious that if potassium supplements are given, it is very important that the vitamin B-1 intake must be adequate at the same time, and one third of heart disease patients are deficient in thiamin.”

“The reverse is also the case. Vitamin B-1 supplements should be dangerous for people with low potassium. Since cell potassium is always low in rheumatoid arthritis [30], such people should not take vitamin B-1 without potassium.”

Most of the heart disease in western societies is probably either caused by or is greatly enhanced by a potassium deficiency. However it is possible for a dangerous imbalance with respect to thiamine (vitamin B-1) can arise from potassium supplements if animal experiments are an indication. […] During a vitamin B1 deficiency, the heart loses potassium.

Even if the patient is eating foods fairly adequate in vitamin B-1, the patient could still possibly have a problem with vitamin B-1 deficiency if also eating foods that have sulfites in them since sulfites degrade vitamin B-1 in the intestines. Such foods are wine, vinegar, pickles, olives, salad dressing, fresh, frozen, canned, or dried shrimp, gelatin, pectin jelling agents, shredded coconut, canned vegetables (including potatoes), pickled vegetables (including sauerkraut), maple syrup, bottled lemon juice, some baked goods, some dried fruits, and some meat in dog and cat food. [I deleted much of this list.]

Also, the symptoms of a vitamin B-1 deficiency can materialize even if vitamin B-1 is adequate if magnesium is deficient, say from Crohn’s disease. A folate deficiency prevents thiamin absorption in rats. Folate is the most common B vitamin deficiency in the world.”

Ammonium is even synthesized by the kidneys during a potassium deficiency from glutamine, and this is probably a strategy of the body, the purpose of which is to prevent potassium loss. Eating glutamine increases ammonia excretion and decreases potassium excretion.”
http://charles_w.tripod.com/kandthiamin.html

 

[picante]

- I am more tired (require more time sleeping)
- Lower libido (wasn't that high before but feels lower now_
- General anxiety (had 1 panic attack)
- Cold hands and feet (it's winter here, this isn't entirely abnormal for me but I feel hands are colder much easier than before)
- Stool seems to be softer, diarrhoea at times too

These are all symptoms I've had from low thyroid and/or low cortisol. Have you had any thyroid tests?

 

[picante]

This is when I found out I could take the data, upload to genetic genie, and find any mutations relevant to the methylation cycle. From there I must have spent 15 hours reading this forum and some other resources on methylation.

Genetic Genie has a very limited list of snps, I'm afraid. You'll get a lot more information from Sterling's app, which you can find at https://mthfrsupport.com/

And unfortunately, you can't get a coherent background on methylation by reading discussion threads for 15 hours, but you can get a bad case of information overload!

I know there are some good synopses on PR. Have you run across any of them? I've lost the links, but maybe someone else can supply them.

 

[krzysiek.s]

@picante

How would you describe the anxiety? Is it at particular times of day? (For example, I was having dread, and it was worst in the middle of the night.)

The anxiety could be a neurotransmitter imbalance resulting from taking MeB12 + Mefolate without knowing which co-factors you need. Could someone please post a link to the recommended co-factors? I've lost it, and there are a lot of them. It's a good idea to start the co-factors before the methylation supps themselves.

When supplementing potassium (it sure sounds like you depleted it), you may need zinc and/or sodium to balance it. Thiamine is the biggie, though. That was the one I unknowingly tanked by taking loads of potassium while on the methylation supps. It took me months to pin down the problem:

That's an interesting question in regards to particular times of day.

What I am finding is that some days (for a day or two) I seem to have returned back to normal baseline, no anxiety. Then out of no where, my general anxiety levels creeps back up. This has happened maybe 2 or 3 times now. It's like a swing, some days I am almost normal / normal, and some days the anxiety is there.

And in my life, any environmental / work / life stresses are fairly constant, so I do not understand this swing of events.

I am worried and not very keen on taking any other supplements at this stage. I am just trying to take a break from it all to get back to normal baseline. From there I will *slowly* experiment again, but for now, the bigger deal is getting back to normal, so I do not really want to take anything else.

I have for a long time and still continue to take Vitamin D, magnesium (500mg) and now I take in about 1500-2000mg of potassium daily too through coconut water (which also contains some other electrolytes).

These are all symptoms I've had from low thyroid and/or low cortisol. Have you had any thyroid tests?

I have had a thyroid test done for TSH. They were done about 1 week apart, once quite late in the day (around 12AM) and once during the morning. The night reading was 0.70 and the one in the morning was 1.3. These are within range and I know TSH can vary throughout the day and should be measured in the morning, the morning reading of 1.3 is quite good from what I have read.

I know there are some good synopses on PR. Have you run across any of them? I've lost the links, but maybe someone else can supply them.

I am not sure what you mean here?

 

[Oberon]

@krzysiek.s

I'm very sorry to hear about your negative methylation experience and thank you for sharing your story. I see you posted in my experience thread, but all your details are here so it's easier to follow up here.

There are a few things I would do in your circumstances, but I am not a doctor so please proceed with caution and do your own research.

Step One - Take A Break
Do not take any more Methylated B-Vitamins for a little while. While I myself have never fully recovered from the damage methylation has done, I have read hours upon hours of information from other people's accounts and the vast majority fully recover after a few week to a few months.

You have already started getting better, things have already begun settling down, yes you have a few frustrating symptoms left but there is a very good chance they will dissipate within the next few weeks. Time is your best friend right now. In my case it took me a few months before all the anxiety and depression disappeared it was more the physical symptoms that were left behind.

I'm not sure if you have CFS or not, but if you do not have CFS you are even more likely to recover back to a normal baseline.

Step Two - Electrolytes
Based on your borderline low potassium level there is a decent chance you will recover from maintaining a higher intake of electrolytes. With that said be mindful of the following:

1. Coconut Water
If this is a new thing for you judge your reaction after you drink it. Myself and a few others (*when I say this I say based off other postings I've read on PR*) do not tolerate coconut water very well. I spent several days of suffering drinking coconut water in desperation of getting better with more potassium that I did not realize I was sensitive to it and it was giving me acidosis making everything worse. (I had a high anion gap which is not the best method of detecting acidosis but a lot of my symptoms lined up with acidosis.)

2. Supplemental Potassium
I do not know if you are taking this right now but contrary to what many other postings have on this forum you need to be proceed with caution when consuming potassium in supplemental form. Yes, most people with healthy kidneys will be able to process excess. I have healthy kidneys but supplemental potassium has also given many many headaches. Start with low doses and move up based off of your reaction. Also note that not everyone reacts well to the same forms. I found after many many trials I need to avoid Gluconate and take the Chloride form when I need Potassium.

3. Electrolytes Need to Be Balanced
This is the one that really did me in. I looked at the symptoms list actively posted on this forum for Hypokalemia type symptoms from methylation and blamed everything on Potassium.

Well you know what actually relieved my anxiety? If you guessed Sodium you guessed correctly.

You know what was aggravating my muscle stiffness, tingling legs, acidosis type symptoms, stomach pain, dysphagia, etc. If you guessed Potassium you deserve to win a prize but I'll leave that to someone more generous to send your way .

I'm not saying that you don't need potassium, but electrolytes need to be balanced. I will no longer take potassium without also taking sodium. I also won't take bicarbonate without also having chloride.

There is a big difference in what your kidney's have to deal with when you derive electrolytes from food and electrolytes from supplements. I do not personally know why but I can drink high potassium beverages in food form without issue, but in supplement form I can get some serious problems.

My kidneys have been checked and they are back to normal after some elevated numbers at the ER after taking tons of potassium. I can tell you they didn't appreciate the pain I put them through when taking too much supplemental potassium.

Step Three - If You Don't Get Better
Please give yourself at least a few more weeks before proceeding with this step. There is a good chance you will return back to normal with time and throwing more supplements at the problem may not be the most intelligent idea.

You started way too many supplements way too quickly. Next time instead of starting D-Ribose than TMG the next day, then B12 and Methylfolate the next day, start each one for at least a few weeks to gauge your reaction.

Do not be afraid to start with low doses. Now every time I trial a new supplement I will always take a much lower dose and build up to gauge my reaction.

Below is a list of items I would try and the logic behind it

1. Multi-Mineral
It's possible that you are low in a mineral and by pushing the methylation cycle you have depleted it further leading to your continuing issues. A likely one is Zinc, but it could also be Manganese, Copper, Molybdenum, Iodine, Selenium, Boron, etc. One of the most challenging parts of methylation is figuring out what you may have become deficient in.

A multi-mineral should provide a little bit of everything and if you get a well balanced higher quality one it may help bring you back to normal. You may also want to try individual minerals to see if any of them help. It will probably take a few days to see any major effect, but some people can see it within hours including myself after certain minerals.

2. L-Tryptophan and L-Tyrosine
Methylation has a major impact on your neurotransmitters. I don't pretend to be a biochemist or even understand the science behind it, but you may have depleted some neurotransmitter precursors and supplementing them up may help. I would start with low dose L-Tryptophan; not the higher doses you read about on the internet. Remember you can always move up later.

A case of L-Tryptophan helping for depression post-methylation can be found here: https://forums.phoenixrising.me/ind...sed-by-dq-supps.1871/&page=1#blogcomment-7633

L-Tyrosine in my case is one of the only things that helped calm my racing seriously depressed thoughts after re-trialing methylation another time after my first mess. (Yes, I know I can do very stupid things sometimes.)

3. Trial Important Co-Factors
Again, I do not pretend to understand the science, but from what I've read Methylation can cause an initial depletion of Glutathione which can impact you negatively. NAC is one worth trying but others argue vehemently against it. I personally reacted poorly to NAC but I've read other accounts where it has been a great supplement for people, it really depends on your genetics.

Other ways to boost your Glutathione are Vitamin C and Vitamin E, along with their various other benefits.

If I were in your shoes I would probably start with Vitamin C first and then add a mixed tocopherol Vitamin E supplement in. I would then try adding in Fish Oil to ensure you have enough EFA's for healthy cells. You can also try adding in sunflower lecithin for the choline and serine. There are many and I mean many things to try but these are the ones I would go to first. Also remember it is possible you will react negatively to everyone of these things so please be careful and gauge your reactions. You learned the hard way that supplements are not harmless and the last thing you want to do is learn it the hard way a second time.

If those do not help then you can try Vitamin A, Vitamin K, etc. You could also try taking a multi-vitamin without B-Vitamins that would cover both vitamins and minerals but this really depends on your individual sensitivity levels and if you can even find one.

You may also want to trial Magnesium Glycinate if you are not taking this already as Glycine can be used up by the methylation cycle and can help with overmethylation.

4. Re-Introduce B-Vitamins
This will probably be one of the scariest things you have to try which is why I've left it for last. The reason it's scary is if you react as strongly as I have you could experience some very negative reactions. Nevertheless this may be the one out of everything that's most likely to help if nothing else works.

It's possible by taking high doses of B12 you have thrown other B-Vitamins out of whack in your body.

You have two options here:
1. Buy a Bioavailable B-Complex
This is the riskier option of the two as it will include B12 and Methylfolate. Nevertheless it's possible in the right ratio they won't have such a major impact on you and taking a b-complex will help rebalance everything. If I were to pursue methylation a second time around the first thing I would do is get myself stable on a B-Complex and then move on to B12+Methylfolate versus the other way around. I would also take a multi-mineral along with Vitamin C, E, etc. for several weeks prior to starting B12 + Methylfolate.

2. Buy Individual B-Vitamins
If you take this approach then you can trial B-Vitamins one at a time and see if they help. In my opinion the three most likely to help are B1, B2 and B6. B1 because all that potassium you've been taking can deplete your levels of thiamin. B2 because your body needs B2 to process folate correctly although it can give you depression if you're prone to it. P5P/B6 because it's used quite extensively on the right side of the methylation cycle and is needed for neurotransmitter function.

Be very, and I mean very careful with re-introducing B-Vitamins if you are sensitive to them which I am. B2 makes me very depressed nowadays and B6 makes me very foggy. B1 I can generally tolerate but I can also get brain fog from it.

3. Trial More Methylfolate
Please leave this as your last step if all else fails and again give yourself at least a few weeks before trialing this. I have recently begun adding back in lower doses of methylfolate and I believe it is helping me a little bit. One of my theories on why is I was taking high doses of B12 which depleted my methylfolate reserves. My blood test for Folate is very high though so I'm not sure the validity of this. There is also Fredd's theory of paradoxical folate deficiency which at this stage I am not sure whether I believe in.

Note I am taking methylfolate without B12. Anytime I take even a micro dose of B12 now it floors me, makes me weak for days and gives me gout. I have been taking methylfolate at 400mg for a week now and believe it's helping with my depression issues along with some of the muscle stiffness and pain.

4. Trial L-Methionine or SAM-E
This is one I learned from Dr. Lynch. Getting the methylation cycle running without adequate L-Methionine (precursor to SAM-E) or SAM-E on board can lead to some very negative symptoms. http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/

The below is quoted form his website to specifically point out the histamine issue. If you find you are having histamine reactions more often or reacting to more foods than taking methionine or consuming more meat is definitely worth a trial.

"Why does one get side effects from methylfolate when methionine is low? In short, because methylfolate may make your methionine levels lower over time if you are not consuming enough protein. This gets complicated quickly and I am going to refrain from getting into it here. It will just lead to confusion.

What are the side effects from giving methylfolate when methionine is low?Histamine may increase. Histamine leads to running noses, itchy, skin disorders, tight chest (asthma or just difficulty breathing)."
_____________________________________________________________

I have to state one more time that I am not a doctor nor do I even really understand the science behind the methylation cycle. All the advice given is from either my own experience or other case studies read throughout this forum. Please take everything I've said with caution and do your own research before proceeding with anything (except for the take a break part, that one's pretty safe to try.)

I can't make any promises on whether any of this will help. The honest answer is in my case most if this has not helped except for a few of the above items and really the number one helper of most of my issues has been time. The reason I wrote what I did is because I believe the above is at least worth trying only if you find yourself not recovering after some time.

Good luck and I hope you get well soon.

 

[Learner1]

Cofactors are B6 and B2.

We are all individuals. We have different genes and different environmental factors that affect how our genes are expressed.

So, even though your genes say you might need more B12 and folate than most people, your bad genes may be behaving better than expected or they may be being counterbalanced by other genes helping mitigate the badness.

One big environmental factors toxicity, which everuonechas to some degree. Methylation helps you to detoxify...it can help mobilize toxins which need to keep going through other processes to leave your body through sweat, urine, or feces.

If you don't have enough of all the cofactors you need for all of these processes, you might either partway mobilize something nasty or you could reabsorb it. In either case, you'll feel sick.

Guessing is like throwing darts at a dartboard... You may hit the bullseye, but most people miss. I can tell if I need more folate or B12, etc., but I've had years of good labeork and supplementation and have learned how my body feels in various nutrient states.

Since you're starting out, it'd be very wise to get a Genova Diagnostics NutrEval test done, so you can see what your needs actually are and adjust. They even give you a little recipe of what to supplement. I take it with a grain if salt, but it gives you an idea.

Watch Ben Lynch's videos. Google Dr RObert's Heartfixer and read his guide to methylation. I learned a lot from Amy Yasko's Pathways to Autism, though some if it is out of date. It helped me understand how the cycles fit together.

You might also start optimizing your diet and digestion, then adding transsulfuration pathway nutrients - B1, molybdenum, taurine, ensure you have enough amino, then add B12, B2, B6, and magnesium. Then add s little 5-MTHF, not a lot. And s little potassium. But testing is best.

You also might want to do a heavy metals test to see what you might be mobilizing.

 

[krzysiek.s]

@lakesarecool thanks very much for your super in depth reply. I really appreciate you taking the time out for me here and helping out. Going through this has been a little scary to be honest (mostly at the start when I had no idea what was happening, less so now) so I honestly appreciate your post and help.

Step 1:

I have stopped all methylation supplementation since May 13th and I don't really have any intention to re-start any of it until all of this blows over, which will take time from what I can see.

Step 2:

My last blood tests showed my electrolytes to be all within range and in check. My potassium reading which was initially 3.5 when I went to the ER improved (with increased potassium intake) to about 4.3 a few days later when I went to my local GP and did more bloods.

One thing I have not consciously been thinking about is throwing off the sodium balance. I do supplement magnesium 500mg per day and have been doing so at this dose for years. So I have kept this dose constant, but I have increased my potassium intake significantly over the last 2-3 weeks (by probably 2000mg extra potassium per day on average) but I have not made any effort to increase sodium with that.

My sodium blood tests were within range both times, in the ER and at the GP, but I am not sure if this is always telling the full story.

I am supplementing potassium from natural sources only. I have potassium gluconate, but do not want to take that as I prefer smashing coconut water instead and eating some fruits (like raspberries or kiwis).

Step 3:

Thanks for this very comprehensive breakdown. I am scared of trying anything else right now, to be honest, so I will 100% agree with your remarks and stick it out a few more weeks and see how things go before experimenting further.

Currently:

Currently my only issue with what has happened is that, there are times (a day or two consecutively) where I am good / mostly back to normal, then days/times where I have anxiety. It's like my body is operating on some sort of cycle. I am not sure, but the anxiety bothers me at at times pulls me out of the present moment and half way through a conversation I may be instead focusing on some bodily sensation that's happening.

As of today, my most current knowledge/plan:

1) Try supplementing sodium along with potassium to see if that helps to remove anxiety
2) If the above does not work, I will try nicotinic acid (which I now have on hand) in small doses. I will try 10-20mg to begin with, based on my reaction, I will ramp it up using small doses but a few times a day to see if soaking up any methyl groups gives me the relief that I want / need.

@lakesarecool:

When you say sodium helped to remove your anxiety:

1) How much potassium were you taking in every day? ie: Through coconut water and otherwise?
2) How much sodium did you add into your diet (in addition to normal foods etc) before the anxiety went away? What doses? Over how many days? Was there a complete dissipation of anxiety?

3) What are your remaining symptoms and what is your plan going forward? Do you plan on restarting anything with methylation?

 

[krzysiek.s]

@lakesarecool in re-reading your post in case I missed anything, I saw the part about coconut water warning again.

Can you tell me, how did you know you were reacting badly to it?

I have been drinking it since like May 13th daily (about 1L or 32oz) per day. I don't feel like I react poorly to it, but I don't know for sure. It tastes nice when I drink it, if that means anything haha.

I just checked most recent blood tests from a couple of weeks back and anion gap was 15 nmol/L which is near the upper range of 16. How does this have anything to do with the coconut water consumption though?

EDIT: I can see anion gap is related to potassium, sodium, chloride, etc. To get my extra sodium in, I am supplementing sodium chloride which is 60% chloride and 40% sodium approx. Will this help me keep the anion gap in the right intervals?

 

[krzysiek.s]

Cofactors are B6 and B2.

We are all individuals. We have different genes and different environmental factors that affect how our genes are expressed.

So, even though your genes say you might need more B12 and folate than most people, your bad genes may be behaving better than expected or they may be being counterbalanced by other genes helping mitigate the badness.

One big environmental factors toxicity, which everuonechas to some degree. Methylation helps you to detoxify...it can help mobilize toxins which need to keep going through other processes to leave your body through sweat, urine, or feces.

If you don't have enough of all the cofactors you need for all of these processes, you might either partway mobilize something nasty or you could reabsorb it. In either case, you'll feel sick.

Guessing is like throwing darts at a dartboard... You may hit the bullseye, but most people miss. I can tell if I need more folate or B12, etc., but I've had years of good labeork and supplementation and have learned how my body feels in various nutrient states.

Since you're starting out, it'd be very wise to get a Genova Diagnostics NutrEval test done, so you can see what your needs actually are and adjust. They even give you a little recipe of what to supplement. I take it with a grain if salt, but it gives you an idea.

Watch Ben Lynch's videos. Google Dr RObert's Heartfixer and read his guide to methylation. I learned a lot from Amy Yasko's Pathways to Autism, though some if it is out of date. It helped me understand how the cycles fit together.

You might also start optimizing your diet and digestion, then adding transsulfuration pathway nutrients - B1, molybdenum, taurine, ensure you have enough amino, then add B12, B2, B6, and magnesium. Then add s little 5-MTHF, not a lot. And s little potassium. But testing is best.

You also might want to do a heavy metals test to see what you might be mobilizing.

Thanks for your help! I have looked at the heartfixer guide when I was analysing my own mutations, which was a very good resource.

For the time being I want to chill out and not do any more supplementation as I am worried. I just want all of this to go back to normal, so that when I experiment next time, I start slow with 1 thing at a time over a period of a few weeks so I can isolate properly. I have learned my lesson!

 

[krzysiek.s]

@lakesarecool when you said this:

" You know what was aggravating my muscle stiffness, tingling legs, acidosis type symptoms, stomach pain, dysphagia, etc. If you guessed Potassium you deserve to win a prize but I'll leave that to someone more generous to send your way . "

Did you mean Sodium helped with all of that? Or did you actually mean potassium? Because I think you were making a point of sodium being important, maybe you made a typo?

 

[Eastman]

@Eastman thanks for your reply, hearing that from you gives me some comfort that my situation is not "uniquely messed up".

When you say you got overstimulated with a lower dose, what was the dose and how many times / days did you take it for?

I was taking about 180 mcg of mB12 daily applied to the skin after being dissolved in body lotion.

What were some of the symptoms of overstimulation that you had?

I experienced difficulty in falling asleep. I would get by with just a few hours of sleep at night and be fully alert the next day.

Were you supplementing with potassium even when you stopped B12 but still had the overstimulation?

I took very little potassium supplements while on the mB12 and none when not taking mB12.

Did you try something like niacin to bring down the overstimulation sooner?

I never took niacin other than what was in the B-right complex that I used, usually at 1/3 capsule a day.

I have read both articles from Dr. Lynch but am not sure what more to do, given I've stopped all supplementation already.

You already have several suggestions from others. I'd just add that maybe consider vitamin B1 deficiency as picante suggested since you've already ruled out thyroid and you already take magnesium.

 

[Oberon]

@lakesarecool thanks very much for your super in depth reply. I really appreciate you taking the time out for me here and helping out. Going through this has been a little scary to be honest (mostly at the start when I had no idea what was happening, less so now) so I honestly appreciate your post and help.

Currently:

Currently my only issue with what has happened is that, there are times (a day or two consecutively) where I am good / mostly back to normal, then days/times where I have anxiety. It's like my body is operating on some sort of cycle. I am not sure, but the anxiety bothers me at at times pulls me out of the present moment and half way through a conversation I may be instead focusing on some bodily sensation that's happening.

As of today, my most current knowledge/plan:

1) Try supplementing sodium along with potassium to see if that helps to remove anxiety
2) If the above does not work, I will try nicotinic acid (which I now have on hand) in small doses. I will try 10-20mg to begin with, based on my reaction, I will ramp it up using small doses but a few times a day to see if soaking up any methyl groups gives me the relief that I want / need.
Both of these are logical things to try. Sodium is especially important if you have weak adrenals.
Nicotinic acid can swing you too far in the other direction of the methylation cycle in larger doses, so keep to small doses for a little bit and gauge your reaction. The key with everything you try is always start with small doses. Try taking the nicotinic acid when you're experiencing anxiety to see if it helps.

@lakesarecool:

When you say sodium helped to remove your anxiety:

1) How much potassium were you taking in every day? ie: Through coconut water and otherwise? When I was listening to Hypokalemia advice on this forum around 1200mg a day. I find even now if my body doesn't need the potassium at low doses of 200mg I can react badly to it. I may just be hypersensitive to supplemental potassium. Dietary potassium doesn't bother me at all.

2) How much sodium did you add into your diet (in addition to normal foods etc) before the anxiety went away? What doses? Over how many days? Was there a complete dissipation of anxiety? For me it was within minutes. My sodium blood tests came back normal but closer to the lower end of the range which may have been a factor. I would take 200mg of potassium and water and the elevated heart rate, blood pressure, and extreme anxiety would disappear.

See this thread for another example: http://forums.phoenixrising.me/index.php?threads/extremly-bad-reaction-to-b12-please-help.36411/. I think this is less likely to occur form Coconut Water as it does have sodium in it to balance out the Potassium. Still, you may want to start scaling back a bit on the Coconut Water to see if it helps your anxiety.

3) What are your remaining symptoms and what is your plan going forward? Do you plan on restarting anything with methylation?
I've copied over my symptoms list from my thread to comment.
Increased general anxiety and insomnia ---> Gone completely.
Depression and Anhedonia ---> Depression still lingers but not the severe depression I get from methylation supplements. More mild and it's something I've had my whole life so it could be unrelated.
Constant wired but tired feeling ---> Gone completely.
Dysphagia and regurgitation ---> This one has stuck with me.
Stiff Muscles ---> This one has stuck with me but has improved a bit over time.
Acid Reflux ---> This one has stuck with me but has improved over time.
Constipation ---> Gone completely.
Gastroparesis ---> This one has stuck with me.
Brain Fog ---> No more than pre-methylation at this point.
Increased overall pain and inflammation ---> This has stayed.
Much lower energy levels ---> This has stayed. Methylation made me go from Mild CFS and working full time with no social life to Moderate CFS and working 0-3 days a week depending on the week and how much I can handle.

@Learner1 had some really good advice which I plan on listening to. I'm booked to see a Naturopath and a functional medicine doctor and I'm hoping to get a Nutreval and have the appropriate guidance before I pursue any more major changes.

If you can afford a Nutreval it is better than what I recommended because like Learner said with what I suggested your throwing darts at a dartboard hoping one will hit the bullseye.I still think you will find within a few more weeks all your symptoms will dissipate anyways and that is your best approach right now.

I have recently readded methylfolate by itself and have found it's been overall helpful in lower doses.
I've also recently readded B12 with seriously disastrous consequences and we are talking low doses here (I took a few crumbs of a 1mg pill for a few days).

It made me extremely depressed, tingling legs, extremely weak, difficulty walking, etc so I won't be trialing that again without a doctor. Methylfolate is what I believe helped me get out of my recent B12 slump which is why I recommended giving it a try without B12 if all else fails.

Most of what I wrote for you are things I have tried or am actively trying but this time around I hope to do it with something like a Nutreval to guide me and medical supervision because I've become hypersensitive to supplements.

@lakesarecool in re-reading your post in case I missed anything, I saw the part about coconut water warning again.

Can you tell me, how did you know you were reacting badly to it?

I have been drinking it since like May 13th daily (about 1L or 32oz) per day. I don't feel like I react poorly to it, but I don't know for sure. It tastes nice when I drink it, if that means anything haha. You're fine with it. For me it would aggravate my tingling legs, give me brain fog, a headache, gastritis, etc. I think I'm sensitive to all coconut products in general so I avoid them now. Coconut water is in my opinion a better approach than potassium supplements if you tolerate it. It's high in sugar though so you don't want to overdo it.

I just checked most recent blood tests from a couple of weeks back and anion gap was 15 nmol/L which is near the upper range of 16. How does this have anything to do with the coconut water consumption though? Nothing in your case. In my case I believe it caused gastritis and reflux and the added acidity worsened acidosis symptoms. Your anion gap is within range, you tolerate it fine and you don't sound like you've had acidosis symptoms.

EDIT: I can see anion gap is related to potassium, sodium, chloride, etc. To get my extra sodium in, I am supplementing sodium chloride which is 60% chloride and 40% sodium approx. Will this help me keep the anion gap in the right intervals? I wouldn't worry so much about the anion gap being in the correct intervals. It's more of an indication of acidosis which I don't believe you have.

Serum electrolyte levels can rapidly change. You will need to gauge how you feel. I.e. when you get anxiety putting in a 1/8 teaspoon of sodium in a bottle of water and sip it slowly over the next hour.

If the salt in the water tastes more delicious than usual and the anxiety starts to fade then you probably just needed some sodium (note you may need to add a bit of sugar to increase sodium absorption but I would try without first.

@lakesarecool when you said this:

" You know what was aggravating my muscle stiffness, tingling legs, acidosis type symptoms, stomach pain, dysphagia, etc. If you guessed Potassium you deserve to win a prize but I'll leave that to someone more generous to send your way . "

Did you mean Sodium helped with all of that? Or did you actually mean potassium? Because I think you were making a point of sodium being important, maybe you made a typo? Sorry I was trying to stress a point but I see it didn't come across entirely clearly. It was Sodium that helped. I took too much potassium and it was throwing my sodium levels out of whack. A lot of people on this forum recommend adding high levels of Potassium when they pursue methylation and it has worked really well for many many people here. There are however the exceptions including myself who do not react well to potassium, especially when it's not in balance with sodium.