• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

B Complex issues (irritability)

Messages
8
I've been having a lot of trouble finding information on an issue like mine.

So basically in the past year I found out that I have the homozygous C677T mutation. I was prescribed Deplin 15mg. This seemed find for a few weeks and then within a month of taking Deplin I had headaches daily that disappeared within 24 hours of going off of Deplin. I should also note that after being diagnosed I stopped eating enriched foods, in fact currently 90% of my foods are homemade.

Anyways, eventually I was told to take 1mg 5-MTHF (Thorne) from another doctor. This has been fine, no problems when I take it, but it seems like I get headaches if I don't take it. I also think that the dose is probably to low.

So now to my current issue. From research and reading I came into the belief that I should be taking other B vitamins, particularly B12. I got a Complex B Multivitamin (Megafood), but the thing is it seems like every day that I take it, I become very irritable and everything sets me off.

I am a 23 year old male, skinny, and seem to be having a lot of trouble fixing my issues. Since childhood I was diagnosed with depression and anxiety, both which have gotten much better in the past year, but I feel that I have uncovered many other issues as well. In fact, I found out about my mutation when trying to fix a different issue, digestive issues, reflux, etc (still no fix). I think I'm on the right track, but I'm just not there yet.
I have become very overwhelmed and I no longer know what I should be doing.

Any help is very appreciated :)
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
for digestion stop eating all gluten now, and get on a gut healing diet, also some strong probiotics with multiple strains and some fermented foods. The issues you talk about are very common and usually happen from over methylation. Taking too much Methyl b12 and Methyl Folate together can cause all kinds of really weird side effects. To mitigate it take niacan 10 mg 5 times a day and get some transdermal magnesium, as well as potassium. Magnesium is 1000mg a day for optimal healing and with no ill effect, given there are no other underlying medical conditions. Your potassium intake should be meeting the RDV of 4000mg a day. If you cannot get it through diet then supplement with a powder form but never take more then 1000mg at one time. Make sure you are getting 1000mg of calcium a day as well, and that your zinc and copper levels are good. Also most people are deficient in vitamin D due to the bacteria that absorbed it in our skin being depleted, as well as holes in the ozone layer. I would try 5000icu a day with doctors approval of course. Never take b6 in any form besides P5P and never more then 10mg a day, very high doses, or supplemented form in high ish doses can result in some damage over time to the nervous system. Also get tested for a blood condition called Pyroluria a simple blood test but if you have it important to treat it correctly, has correlations with anxiety and depression as a physiological cause.
 
Messages
8
Is gluten really that bad? I have had a blood test done in the past that was negative for celiac, and more recently I had an intolerance test done. The intolerance test only showed that I have issue with fruit, which I have stopped eating.

Huh, didn't realize that the two could have issues with eachother (b12 and folate). People tend to think B vitamins are easy because you get rid of excess (granted I have heard too much B6 can be bad). For the niacan, is there any way to know how much is too much or too little? I can look into the magnesium and calcium. I'm in another state for college and only have access to ER and EC, so I may be unable to do the vitamin D or get the Pyroluria test until I visit home :/.

Thanks a lot for the info!
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@Mr Christopher Gluten is really that bad! And it might not show up on lab tests. And, it might not be only gluten foods, but also gluten cross-reacitve foods. I had no clue gluten was underlying many of my life-long ailments. My nervous system was out of control when I started gluten and dairy free diet, GAPS. Within 3 days it calmed enough to make life bearable. It would take another year and a half until I was calm, and my life-long insomnia gone.

During this time I had to uncover my histamine and sulfur intolerances, get onto high B12/folate, and clear my adrenals through detox. Oddly, this last, adrenal clearing, led to an even deeper relief from lifelong tendency to irritability, agitation, low tolerance of frustration.

Linking some gluten info. Also a pyroluria questionnaire. I never tested for pyroluria, but after the questionnaire results, began supplementing. this, after removing gluten, was the next huge shift in my inner state. There's a doc linked to my signature w/ info re Freddd's Protocol. At the end you'll find some pyroluria references/further info. Good luck to you.:hug:

http://www.hputest.nl/evraag.htm Online questionnaire to suspect pyroluria
http://www.glutensensitivity.net/index.html
http://www.glutensensitivity.net/index.html

http://blog.primohealthcoach.com/blog/bid/79586/18-Gluten-Cross-Reactive-Foods

http://www.thepaleomom.com/2013/03/...re-eating-gluten-even-after-giving-it-up.html

http://aiplifestyle.com/what-is-autoimmune-protocol-diet/
 
Messages
8
@ahmo I'll go through your links and read up on them. While I do believe gluten is terrible for some people, I'm still not convinced its terrible for everyone. Granted I've done no serious reading or research on it, I'll be sure to read what you have in your links. Probably part of the reason why I'm a skeptic is because I did go a month on a strict diet without gluten, as well as foods that I though may be contaminated (this was several months ago, before my intolerance test). For that month I noticed no notable change, granted I could have other issues that may mask any potential improvement that I could have been having.

You mentioned issues with your adrenals, which I find interesting. Recently I was given a supplement pill for adrenals, they believe that mine are damaged. Anyways, week two of taking that I noticed a significant change in my energy level, I simply felt good (apart from reflux). Sadly I have run out and have not been able to get more yet, but this is something I had never thought of and yet it seemed like it had a large positive impact on me.

Overall I'm pretty interested in fixing my methylation issue at the moment since it is something I notice fairly easily, and it doesn't require a diet overhaul. I'd love to figure out my whole C677T issue and get my vitamin B levels normal. I'm actively looking into my other issues as well though, but some of the testing will most likely have to wait until I visit home to see doctors/specialists.

I'll look into everything that people mention here and try supplementation if it appears to be fairly easy/safe. I do want to try only adding one new supplement/method at a time though, so that I can keep track of it and be certain what is causing changes.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
@Mr Christopher B12 and folate need each other to work effectively. It's difficult to tell whether you truly weren't tolerating the high dose of Methylfolate (the Deplin) or whether the depletion of co factors is what led to the headaches. It is never recommended to supplement folate without also supplementing B12 because it can mask a deficiency.

I'm not familiar with the B complex that you are taking, but when I googled Megafood B Complex the one I found had B12 grown in yeast, and the amount was 125mcg. I don't know if this is the one you're taking. I don't know anything about that process of making B12 but I do know that is a tiny dose, especially compared to the dose of folate you were taking.
 

taroki

Senior Member
Messages
132
Location
Ontario, Canada
@Mr Christopher

You likely have h.pylori with your digestive issues, reflux, etc. Have you tried Yasko's protocol? Also look into atlas subluxation and sphenobasilar joint dysfunction. I had the same issues since childhood and recently found out about those. Good luck!
 
Messages
8
@Sea I actually didn't have B12 while on the Deplin. I took the Balanced B Complex while taking the 1mg dose. The Balanced B Complex does have just 125 mcg of B-12. Is there any general ratio I should shoot for between Folate to B12? When I don't take the Balanced B Complex, I'm only taking 1mg of Folate, which I doubt is enough in the first place.

@taroki I've actually wondered about the h.pylori thing, a professor of mine mentioned that he had symptoms similar to mine when he had it years ago. I guess the doctors just gave him antibiotics and he got better. My doctor gave me a ppi and that did not help, digestion became terrible (been off of it for a while now). Overall I don't know much about h.pylori, is there any simple test for something like that? Also, I'll look up the Yasko's protocol, its new to me. The problem I've been having is that my symptoms fall under dozens of conditions :/

I've never heard of atlas subluxation or sphenobasilar joint dysfunciton before. I'll look more into them, however I have doubts it is the main cause of my issues, most of these other things are on the newer side. I am curious though, how did you find out that you had these issues?
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@Mr Christopher You can find some info re B12/folate ratios towards the beginning of the doc in my signature. It's in bold, 'ratios'.

And here's another article re gluten Someone shared this w/ me, I don't know anything about the author. but I find it an interesting slant on the issue.
http://owndoc.com/diet/bread-our-daily-poison-gluten-sensitivity-mistaken-candida/
It turns out that Celiac disease is not a disease at all, but a well-functioning early warning system. In addition to the innate immune response to wheat that we all have, Celiacs have an additional, genetically determined, adaptive response. Whereas non-Celiacs go on consuming wheat and develop cancer, MS and a plethora of other very serious illnesses, Celiacs simply avoid gluten and stay healthy. Celiacs don’t have a faulty immune system, non-Celiacs do. When people started to eat wheat as a matter of increasing necessity, only those with genetically suppressed adaptive responses to gluten remained alive to procreate. But those individuals only have debilitated immune systems. They are not at all impervious to gluten’s damaging properties.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
@Sea I actually didn't have B12 while on the Deplin. I took the Balanced B Complex while taking the 1mg dose. The Balanced B Complex does have just 125 mcg of B-12. Is there any general ratio I should shoot for between Folate to B12? When I don't take the Balanced B Complex, I'm only taking 1mg of Folate, which I doubt is enough in the first place.

That's what I am saying. It could well be that you became depleted in B12 while on the Deplin. It doesn't happen straight away. Unlike some vitamins we have B12 stores our body can use if daily intake is not enough, but over time that becomes depleted.

Your digestive issues and the ppi treatment all add to the likelihood of a B12 deficiency. A well working digestive system is necessary to absorb and utilise B12. A good amount of stomach acid is necessary to separate the B12 from the protein it comes bound to and healthy intestinal function is necessary for B12 transport and absorption.

Only from memory so please search further, I think the ratio of B12 to folate should be around 3:1 for the lower doses of folate. I don't know whether that ratio is still used with high doses of folate like Deplin though. Searching this site for B12 protocol should give you some information. There are differences in the type and amount of B12 that different people tolerate, which some people believe is related to an individual's genetics. With poor digestion you would be recommended to try B12 injections or sublingual tablets to ensure absorption.

I had the same irritable reaction that you describe when I was taking a supplement with B12 in the form of cyanocobalamin, but I don't get it from the methylcobalamin form. I also would get a headache on the days I forgot a dose of methylfolate when I was taking a lower dose.

I am not of the opinion that gluten is a terrible evil that everyone needs to avoid, but it is true that it is a factor for many people. A gluten free trial of only a month is probably not long enough to determine if it is a problem for you.
 
Messages
8
@ahmo I have been reading through the document which has lead me to read many similar posts around this forum about methylfolate, b12, and Freddd. It seems very interesting, but its taking time for me to understand all of the intricacies. As for gluten, it does seem pretty nasty and I'll continue to keep an eye on it, but I'm afraid of spreading myself thin and making too many changes at once.

@taroki So I looked a little bit into Dr. Yasko and there seems to be a lot of controversy around her and her work. I'm not so sure I trust the methods that she is involved in.

@Sea I misunderstood you, but what you are saying makes a lot of sense. I believe the form of B12 I was taking was cyanocobalamin as well. I'm interested in adding some sublingual B12, but as I was reading through some of Freddd's work I am becoming a little concerned. I had not done anything prior to starting my methylfolate as is suggested (ensuring many other vitamins are at good levels). This concerns me the most because I may be dealing with many deficiencies, in addition to possible gut issues. However, there could be a link between my gut problems, deficiencies, etc. but it seems very hard to tell which issue is holding the other back. I have become even more confused in the fact that my reflux/gut issues started before even learning about my homozygous c677t mutation or taking methylfolate (methylfolate only could give headaches, b12 irritation and cramps). Granted, it was my complaints about health issues that lead to getting my gene test in the first place.

Before moving forward would it be best to wait to see a GI about any issues that I could potentially have? Alternatively, would a set of blood tests be worth looking at first? In the past my blood tests had always looked good, but that is when I was eating enriched food and we did not realize that I can hardly even process folic acid, so they thought a high level was fine... This concerns me that other issues may be masked by not having enough B12, or a similar situation.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
It is certainly worth consulting a GI to rule in or out any conditions that they know about. Sometimes though there are no answers to be found in routine tests.

There are blood tests available for many vitamins, but they do not tell the full picture. Just like your folic acid test was high because you're not actually processing it well, other high results are not necessarily an indication that everything is fine. Most doctors who understand this would recommend a trial of B12 as it is very safe and usually easy to tell if it is making a difference.

To look for a B12 deficiency some of the helpful tests include MCV, MCH and homocysteine levels. The problem is that these often return to normal when supplementing folate but do not correct the deficiency and so damage from the deficiency continues. That is what it means when it is said that folate supplementation 'masks' a B12 deficiency.

As you've probably read, it is important to have a balance of B vitamins. They do work together and a deficiency in one can affect the overall picture. Unfortunately it can take a bit of trial and error to determine what is most helpful for any individual. Most doctors who advocate for B12 supplementation would also suggest taking a B complex.
 
Messages
8
@ahmo That's what I've begun doing, my brain needs time for everything to sink in as well! I'm beginning to think I'm having the issue of balancing the b12 with folate. Tests showed my magnesium and potassium levels are fine, so that puts more emphasis on an issue between the other two. I'm guessing I should start taking some b12 (MeCbl).