I have some posts that should have been written and published recently, but my brain just won’t have it. I’ve been trying to follow the methylation protocol recommended for people with the MTHFR mutation that I have, and it has been rough. When your body hasn’t been getting enough folate to fuel the methylation cycle, you see, toxins that your liver should be filtering out get stored inside you – toxins like heavy metals (lead, mercury, cadmium) and even the synthetic folic acid added to our foods that many of us cannot metabolize. When you start giving your body the bioavailable form of the folate it needs for methylation, all of those toxins start coming out so they can be processed.
And they wreak havoc on your body in the meantime. I’ve had some excruciating muscle pain that has driven me to take more than one Epsom salt bath in a day for relief. But the cognitive effects are just as disabling. I’ve always had trouble with my mental focus, but I’ve been so scattered and unfocused that I can forget what I’m doing in the middle of a task. I’ve sat down to write blog posts and been completely paralyzed by a loss for words that make sense when strung together. And the confusion – oh, the confusion. I’m an intelligent woman, but some of the simplest things can baffle me lately. I have to read things four or five times before they make sense. And when we went for our usual weekly grocery shopping trip on Saturday, the overstimulation of the “OMG we’re getting a snowstorm” crowd was enough to leave me feeling a discomforting vagueness and detachment from myself and my surroundings.
It got bad enough that I sent Tom to buy me the form of niacin known as nicotinic acid, which soaks up the extra methyl groups floating around in the case of overmethylation. I popped these suckers like candy that night. It stopped the reaction, but came with its own (thankfully temporary) side effects – flushing and itching. My face was bright pink, and my usually benign rash flared up and itched like crazy. Neither effect lasted longer than an hour, and I had relief from my side effects of jump starting the methylation process.
But I’m going to go against the “go low and slow” crowd that suggests stopping the methylation protocol completely, resetting with niacin whenever you face symptoms, and starting over at an even lower dose once you’re symptom-free again. I’ve been talking with a woman who has the same homozygous MTHFR A1298C mutation I have who just pushed through the first two months of methylation hell, and four months later says it was so worth it because of how much better she feels. Her baseline CFS symptoms were even more extreme than mine, not even having sensation in her fingertips. Now she has feeling back in her extremities, and both the pain and fatigue has all but vanished for her.
I want to be well again. I haven’t been well for a very long time. But I now have hope that I might be able to go to next year’s conferences without carrying a cane for support. I have hope that maybe I won’t need to medicate myself to the gills just to get a good night’s sleep. I have hope that I may even be able to reduce the dosage of my psychiatric meds, if not come off them completely. I just have to suffer for it first.
I don’t do suffering well. I whine and moan and complain. I have low tolerance for pain and discomfort. But I have to do this.
I’ve started back on the methylfolate and methyl B-12 today. Get the process started again. Next Monday, I will dose myself heavily with nicotonic acid so I’ll be functional for Christmas Eve and Christmas Day, and then I’ll get back on the methylation protocol afterward. I will suffer as much as I can tolerate, and if I have to go and be out in the world, I will utilize the temporary escape offered by the niacin for a day or two before getting back to the suffering. And then one day, maybe in March or April, I won’t be suffering so much anymore. And then, maybe, I won’t be suffering at all. I can have some semblance of the normal life I haven’t had in years.
It will be a miracle. Is it too much to hope for? Possibly. But I have to try.
Read my Big Fat Medical Update for more details.
53 thoughts on “The Past Few Weeks of Overmethylation Hell”
How is your progress now? Have things got better?
Please let us know,
Things have gotten much better. I’ll be writing a follow-up post at some point in the near future, but the short version is this: I’m now taking my folate and B-12 without further overmethylation effects. I feel better in general, though I’m still a long way from “healthy.”
How did you determine your routine for supplementation?
It seems like since everyone’s results will vary everyone’s routine would vary.
I am having trouble determining what i should be taking based off my results. I can read about one mutation at a time but seeing the bigger pictures and how each affects each other is proving to be quite difficult.
Any suggestions can you provide would be greatly appreciated,
Trial and error. I started at a dose of methylfolate that a lot of people said was way too high. And considering my symptoms, I tended to agree. However, it wasn’t practical for me to by gelatin capsules to repackage the methylfolate into smaller doses than what you can buy, so I just decreased the frequency in which I took it until it was tolerable. Now I take 1000 mg daily without any side effects, along with the B-12.
There are still other mutations I haven’t addressed nutritionally, but I have noticed general improvement in my health and well-being with this to start. I have a CBS mutation that would suggest I should avoid sulfates, but the fact that Epsom salt baths help me and don’t bother me shows that this mutation is not expressing itself, so isn’t something I have to worry about at this time.
Your mileage may vary. 🙂 The best you can do is try and see what seems to work for you, and run it by your doctor to make sure you’re not overtaxing your body with too much at once.
“I have a CBS mutation that would suggest I should avoid sulfates”.
You should avoid Sulfites and high-Sulfur Foods because your body has a hard time converting Sulfur (and Sulfites) in to the good Sulfates.
In other words, your Body needs and wants Sulfates because Sulfation in comprised.
I am just wondering exactly how much b3 you took? I began treatment for pernicious anemia and on Wednesday of last week, I started having severe depression and anxiety. I wondered if it could be due to the methyl in the methyl cobalamine I was taking. I have taken 50 mg at 1030 this morning and again at 1130. I had a small flush but nothing too bad. I am feeling better, but still not great. Is there any way to know forsue that I am over methylated? I hope you can reply quickly, feel free to contact me directly.
I’m not sure if there’s a “for sure” way to know if you’re overmethylated. I never really recorded how much B3 I took, but I kept taking one more every 30-60 minutes until I felt like my symptoms were tolerable.
I was once trying to figure out if I was overmethylated myself, and came across a “test” using your flushing reaction to 50 mg of niacin. Just be careful you’re not taking other supplements that reduce your flushing reaction (I believe inositol does) or that you’re not using “non-flushing niacin”) Here’s the link: http://mthfr.net/mthfr-and-xyz-cancer-is-it-related/2012/03/12/
I hope that helps you!
It made me have depression and anxiety really bad
I suggest you get your Doc to order a “whole blood histamine” blood test ASAP. Unless you know your current methylation status, you could really cause yourself some problems, in terms of feeling much WORSE. I am getting mine next week. It should show you your status… BTW: low histamine = overmethylation, high is opposite.
I believe, from the descriptions of symptoms, that I am “over-methylated”. If I followed the usual protocols for “under-methylation”, I would really feel bad… much worse than I already do. Overmethylators taking TMG, SAM-e, and other stuff recommended for increased methylation will get a bad result.
OK…want to hear stupid? I was recently diagnosed with this MTHFR A1298C homogenous thing, and was given MethylAssist to help me with all the problems that come from it. Although the label says ONE pill per day…my thinking: if one is good then hey, FOUR must be great. Let me tell you…around three in the morning I thought I was going to die. Not being melodramatic here…seriously. And I didn’t realize until I stumbled across your article how I’ve released the all these toxins too rapidly and really hurt my body. I’m going to resume the detox because I really want to begin to heal…but think it might be wise to wait until tomorrow before ingesting my next pill. Aargh!
I’ve had the same experience! I was overmethylated many times and I was so insanely hyped up with chest and neck pain that I couldn’t sleep. This occured over months and months. I went to my doctor and got some blood tests done. I was low in many essential hormones, white blood cells, and thyroid because I was constantly stressed and lacked quality sleep. We thought it was so many other things before I finally learned about methylation. I am getting genetic testing through 23andme.com to see what I need to watch for.
According to Dr. Ben Lynch, a foremost expert on methylation with many good YouTube videos, says to get your B12 and folate from actual foods. Leafy greens have methylfolate. Meat and fish have B12 in the usable form. If you feel sluggish, use a very small amount of the supplements and have a small dose of niacin handy to calm yourself if need be. I also discovered that Taurine is an endproduct of the methylation pathway and is often depleted in people like us. I started taking it and felt amazing. Little to no side effects, and doesn’t seem to push me to either over or under-methylation.
Good luck and remember, food is best and balance is king!
Your comment was most helpful to me. I have had insomnia issues for over 20 years, although it has gotten somewhat better. My doctor has prescribed 1000 mg of mythylfolate and 1000 of B-12, although not for insomnia. I’ve noticed I feel better when I take these two supplements, however, if I take these more than two days in a row, my insomnia problem is worse – I’m up almost all night. I suppose it is a delicate balance, but I’m still searching for it. I’ve taken less of what my doctor recommended, and still have the same reaction of feeling better when I take it, but if I take it for more than two days, I’m up most of the night. Your comment reassured me I’m on the right track. I, too, want to get the 23 and Me test.
Thanks for your post – it was really great and helpful. I’m another homozygous A1298C and have just been going on treatment for about 5 months. I’m only taking B12 at the moment and I have huge insomnia !!! I’ve swapped B12, which helped for a while but now it’s back. I feel so unbelievably wired. Am not functioning. It was really helpful for me to read your experience and also to know that pushing through this is an option and one I’ll try to do as much as possible. Right now I think I’ll just head to the pharmacy and get some niacin.
Hope you’re well on the way to being fully mended. My hat is off to you, girl. I’m sure you’re totally rocking it.
At what time of day are you taking your B12? I found that when I forget my folate and B12 during the day and try taking it at night to make up for it, I just can’t fall asleep. I try to make sure I take it by 3:00pm each day, or else I don’t take it at all.
I have experienced the same result with B-12 injections. Much better when administered before lunch!
I couldn’t find a post about your fast & furious approach, wondering what your results have been… thanks!
My results have been somewhat complicated by other health matters, but now that the overmethylation symptoms have gone away, there’s a definite improvement in my energy levels. I’ll have to write a followup post sometime when all of my unrelated symptoms have calmed down!
Hi.I’m gene mutation Homozygous MTHFR A1298C too. Just found out. No wonder have had cfs and fibro for 19 years. Taking B complex and methylfolate 400. Really reacting yet have to push through. On the couch. Muscles ache with acid feeling,tears,lonely, exhausted.Teens don’t seem to care or try to understand. Poor hubby just thinking I’m always sick. My 11 yr old darling girl my only sweetness in this mess. Want to be normal. Want to be well 🙁
Any updates on this ? I am hetero 677t? I have had cfs for 20 years. I started out with taking 400mcg like many experts said to but not much happened, I tried 800 then and not much, took a break for a few months after sort of giving up, but then decided to ramp up dose after reading some people need more, so now I am taking 2,500mcg per dose and feel very noticeable effect of calmness and peace that I have never felt before, i take this dose twice a day, so that is 5,000mcg. A day and feeling good. I am glad I tried a higher dose but it was probably good that I started out slow in the beginning.
I was on the same boat as you. I found out I was over-compensating with niacin, which had me swinging back and forth between overmethylation and undermethylation. I came across several different doctors recommending to only do 50mg of Nicotinc Acid or Niacin (not niacinamide) at a time (http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/). A doctor was saying one could take 50mg of niacin every hour until symptoms improve (http://www.methyl-life.com/dosage.html). I hope this helps someone as much as it helped me!
It’s great to hear you’re doing better!
Similar to you, I struggle w/ adrenal fatigue, depression, anxiety, brain fog, and low energy. I am heterozygous for 1298, along with several other MTHFR mutations that affect how 1298 work, which makes it more “iffy” about whether I benefit from B12 and Folate or not. Ever since I started B12 w/Folate I could feel SO much better in all areas (like I was a complete person again), but only for about a day, before overmethylation symptoms began (mainly anxiety and brain fog). Because these symptoms are so similar to the original issues, I struggle with identify wether I need more Niacin or increase my Folate. Often, though, they get better with Niacin. However, I got to the point where I was taking about 800 mg of Niacin everyday just to barely stay afloat. This was when I was on about 800 mcg of Folate. So, I’ve since reduced to 200 mcg (only been a couple of days, so not sure how much I will overmethylate), but it doesn’t seem nearly as beneficial either. So it seems like a lose/lose situation until I stop overmethylating. I used to be on Lamictal for medication-resistant depression, and when I weaned off it was when the severe anxiety started (especially high 1st thing in the morning). After several months, I got on a low dose of Effexor for the anxiety, which helped, but also took away my energy and personality, so I weaned off it about 5 months ago. I wan’t to stay off medications, but I’m getting desperate enough to considering getting back on it.
I would love to find out how you handled the overmethylation issues. I mean, did you really stay sway from Niacin altogether, except just a few times a month? How long did it take you to stop overmethylating? Maybe if I can see the light at the end of the tunnel, I can take the leap.
I don’t have the money for a doctor that knows what they’re doing with MTHFR defects, so I’m on my own, and it’s become overwhelming, scary, and hopeless.
I’m exhausted and desperate… Any clue you can give me would be appreciated!
Thank you so much,
It took about two months before I got over the overmethylation side effects. Unfortunately, I’m going through it again because I failed to replenish my supplements when they ran out after my dad died in June. I haven’t been able to push through it this time, because I’ve had too many things going on that I have to be whole and present for. What I’m doing this time is taking the folate and B12 only a few days a week to build my levels back up slowly, and once I get through the end of October, I’ll ramp it up and push through the rest of it so I can feel better again.
What was your starting folate dose? How do you know how low to start your folate and B12, and how fast to increase it? Do your overmethylation symptoms include anxiety ? And, you don’t use ANY Niacin at all in spite of the symptoms?
I couldn’t find folate in a lower dose than 1000 mcg. It’s recommended that you start much lower than that, but I didn’t have it in me to crush my pills and redistribute them in gel capsules. It was easier for me to start taking them 1 day on, 2 days off; then 1 day on, 1 day off; and finally 1 daily. I took the equivalent amount (and timing) of the B12.
The “low and slow” method recommends not increasing your dosage until you stop having symptoms at your current level, and to scale back again if you start experiencing symptoms at the increased amount. I tried doing it this way but got too frustrated and decided to just stick it out.
I can’t say for sure if my overmethylation symptoms included anxiety, because I’ve had an anxiety disorder for years.
I have used niacin. When it got too bad, I popped it like candy until the pain subsided. I’m actually getting back into the regimen now after lapsing for a few months. (Replacing my pills once they ran out after my dad died just didn’t seem important at the time.) The overmethylation isn’t as bad as the first time, but it’s still unpleasant. I swallowed a whole lot of niacin after the first two days of getting back into it. I’ve found it can help it take potassium when starting folate and B12, as recommended to me on Phoenix Rising, because your body starts using more of it when it’s methylating properly.
Sorry to keep bothering you, Christina. I’ll try to make these my last questions. When you stopped having overmethylation symptoms, do you feel the Folate significantly and consistently helped with anxiety and depression? Or was it addressing other issues for you?
The people at phoenix rising have this “Paradoxical healing /donut hole deficiency” theory, which is interesting but intimidating to me. The approach is to keep increasing Folate exponentially every time you start overmethylating. But, I wonder if it would ever stop increasing or just always increasing because they were referring to increasing already huge amounts (over 30,000 mcg). I imagine that , if that approach didn’t work, it would take weeks on a steady dose of niacin to get back to functional. Not to mention how expensive constantly increasing would get.
Thank you again,
The whole ‘paradoxical healing/donut hole deficiency’ theory is just that — a THEORY. And it’s nonsense. Just doesn’t make any sense at all. Fred Davis, who is the only person promoting that paradoxical stuff, keeps getting worsening and worsening symptoms, which he has finally realized probably came from taking too much zinc for years. This depleted his copper levels and caused many of his worsening symptoms.
Read Mara’s comment above. She is correct.
Have you tried to take the natural lithium. The lithum orotate with nac+ and folate – a little goes a long way. Good luck
More food for thought… Because you’re all talking about anxiety and depression, sleeplessness, and rashes I wonder if your histamine levels are being impacted by the detox process with methylafolate. The usually benign rash mentioned could be a histamine rash. Histamine is very complicated and some what confusing. Depression and anxiety are related to histamine levels in the brain. Low histamine levels are linked to depression and abnormally high brain histamine is linked to anxiety. There’s the understanding that low brain histamine might create a desire to binge drink because alcohol raises histamine in the brain. Unfortunately, after binge drinking you tumble back to a state of low histamine and depression. This explains the yo-yoing between depression and anxiety that drinkers experience.
I really wonder if certain subsets of the population have genetically low histamine that make them susceptible to alcoholism and depression, and if this relates to methylation. Low brain histamine can bring on depression, there are more suicides during allergy season, presumably because anti-histamines lower histamine availability in the brain to such low levels that someone may experience suicidal tendencies. Again, abnormally high brain histamine can bring on anxiety.
It sounds to me like, when you start detoxifying with folate your histamine levels start spiraling out of control. The rash could indicate a histamine reaction, either apart from or in connection to the niacin. The amount of normal histamine in your body and your ability to detoxify it may be impacting the correct dosage of folate needed to control the degree of adverse reactions you’re experiencing. Certain foods can impact your histamine levels; high histamine foods are packaged meats and cheeses, packaged bakery goods, gluten, chocolate, beer and alcohol. The DAO enzyme helps you detox histamine. Some foods that help detox histamine are fennel, arugula, peppermint lemon, chamomile, quercetin and bio-flavinoids. Maybe you can tweak your diet a little to help you deal with the strong side effects you’re experiencing when starting the methylfolate.
Histamine impacts your sleep/awake sensors in your hypothalamus, low histamine people sleep a lot and high histamine people tend to stay awake a lot. It’s thought that out-of-control histamine levels could be a factor with manic- depression. It’s also believed that high histamine levels are connected to black outs while drinking; high histamine levels keeps you awake when you should be passed out, yet your reasoning is impacted and the next day you have zero recall. The same pathway that detoxes histamine detoxes acetaldehyde from alcohol. does this happen in the methylation cycle?
It’s also understood that if someone has intestinal permeability, histamine from foods can leach out of the gut and into the bloodstream and the brain and cause rashes and brain fog as well as inflammation. High oxalic acid foods opens the tight junction in the colon wall and allows histamine and other dangerous compounds to filter from the colon into the bloodstream You may want to stay away from high oxalic foods while detoxing and see if this reduces your symptoms.
Reading your posts I wonder if the genetic tests tell you what your histamine levels are to begin with and if your DAO enzyme is functioning. Did you get any info on this? Does any of this make sense? Do you think there may be a connection?
This is very interesting to follow. Dr. Bill Walsh has videos on methylation and histamine on You Tube. The Low Histamine Chef on Facebook posts helpful information. It seems to me that methylation, histamine, leaky gut and candida are all intertwined. I wish you all well in your journey to better health.
Nancy, you’ve given me something else to bring to my doctors. Histamine levels are something I’ve thought about before, and it would be worth further investigation.
I’ve wondered about histamine too. Not sure if my genetic testing says anything about histamine, but it wouldn’t show current levels… is there any way to test for current levels?
Have you supplmented with potassium and magnesium during your trials? According to some sources on the Internet (Dr. Lynch), both get depleted very fast at the beginning. I would add P5P and activated charckcoal. Turmeric and coffe enemas might be beneficial as well.
Once I added potassium, it did help. My daily Epsom salt baths help with my magnesium levels, too.
My personal experience also showed that NAC (combined with molybdenum and selenium) was also a must. Another good reason to use NAC is that it also acts on the intestinal biofilms which makes candida and other pathogenic organism easier to eliminate… There is a lot of info on the Internet about it. If I remember correctly there was even a medication for methylation which combines NAC, methylfolate and methylcobalamin. Regarding methylation issues I would directly go to Dr. Lynch, Dr. Rosenberg(he has nice presentations on Utube) or Shawn Bean and not guess and do my own research which will take eventually more money and time. As I am living on another continent doing that is impossible ,so trial and error is big part of my regimen : )
I am another homozygous 1298, and have had lots of mercury fillings in my childhood. I am 39, female, and have had them removed over the years and have been mercury free for about 8 years, but I am sure it has done plenty of damage. I, like the others who have commented here, have lots of things wrong with my health…thyroid low, adrenals low, neuropathy, migraines, brain fog, sex hormone problems, fatigue, digestion issues, slow transit…there is plenty more. When I took methyl folate and methyl B12, I did ok for about a month but was slowly sinking innto a dark depressive mode that got worse an worse. Then I started to have very bad headaches, and when I tried to increase the dose, a day or two later I had an episode where it was as if someone had smacked me in the back of the head with a bat, an instantaneous frightening moment and I then felt like I was falling. It was so scary, obviously a neurological based symptom. I couldnt talk or think, was shaking, I thought I was having a stroke. I am afraid to go back on it until I do 23 and me. I just wanted to comment as a fellow homozygous 1298, and wish we 1298 ers had a way to be in touch and learn from each other. Thanks for posting your story!
I don’t know if you have had any help, since it has been a long time since you posted this, but I had similar episodes to yours, and I found that increasing my potassium, calcium, and magnesium greatly improved the headaches, shaking, weakness, and black out episodes I had, I don’t know if this will help, but thought I would at least mention it just incase
Check out this link on lithium and methylation problems. It has helped me. I was very low in lithium according to a hair analysis and had the same trouble with overmethylation. It helped. I have not tried the niacin yet though.
Hope this helps.
Hey There – I’m coming on to this thread late, but I have something to add and I think it’s valuable. 🙂
A book was published last year, called Nutrient Power, by Bill Walsh (Nancy mentioned his YouTube videos.) In it, he goes into detail about over and under-methylation, plus other disorders like Pyrroles and copper overload. These are bio-types underlying many neurological issues (he actually addresses them from a mental health perspective, rather than CFS, but I think CFS is just a different manifestation of the same underlying issues.)
The book is seriously worth it. I’ve also been working with Samantha Gilbert at http://www.samanthagilbert.com (a huge shout-out here, and this is not an affiliate promotion). She’s a nutritionist who works with Dr. Walsh’s protocols, including the methylation issues. She does functional testing, instead of genetic testing. FT measures the state you are in right now, instead of the genetic testing, which only shows your potential issues.
Thanks so much for sharing your journey!
Did you experience depression with overmethylation?
Unfortunately, depression was a pre-existing condition for me, so it would be hard to tell if my level of depression was directly related to overmethylation or only indirect because of the addition physical suffering I experienced.
I am so thankful I found your blog. I recently took a genesight test through my psychiatrist because I felt as though my antidepressant, Pristiq and adhd medication, adderrall were no longer working. My Pdr told me I did not metabolize folic acid, that came back on this test, and to take a folic acid supplement.
Then I started new antidepressant Viibryd, the antidepressant from hell and I started to research furiously what to do. After experiencing horrific side effects insomnia, memory loss, fatigue, lethargy, sleep paralysis, brain fog, slurred speech and excrutiating back pain I started to do more research on how to get my health back.
My prior medications kept me stable but I had ongoing fatigue. Discovering what my under methylation means has started my journey to better health. I had been taking folic acid but realize after researching for the best folic acid that I need a methyfolate. I had previously ordered magnesium oil and plan to lube up every day and will now order some of that nicotinic acid.
I am a criminal attorney so I need to be able to function better than I have been. I was mortified today when I was told by opposing attorney that I was slurring my words and had a complete brain fart at the bench. I need to keep it together as I start to heal.
What kind of doctor is the best to see about this condition? I dont think my Pdr has a clue. I was thinking a naturopath. I was reading the post about histamines and that was a huge revelation. I taking benadryl likes some people eat tic tacs. I have allergies year round and break out in hives regularly but I cannot identify a cause. Benadryl not make me drowsy. Probably my adhd. None of the allergy meds work for me anymore. Thank you for sharing your journey it is immensely informative and inspiring. I hope you are doing much better.
Hi Christine, I know its been awhile since you.posted but I have a question for you and I hope you can answer it. I am mercury toxic and have been working through this tough time. I took a b complex vitamin which I only licked a few seconds I didnt swallow it and it has caused major detox and dumping. I dont know exactly what you went through but its day 3 and I cant stop this. I havent taken anything but whenever I eat, drink water, or use the bathroom there is an immediate mobilizing or dump again. Does anyone have ideas as to slow this process. im sensitive to a lot of supplements so dont want to risk a reaction but I dont know what to do.
I’m not a doctor, but it’s probably a doctor’s advice you’ll need to help you with this. Your doc can get you set up with chelation for mercury toxicity. It sounds like your problem is more serious than over-the-counter treatments can address.
Look into Andy Cutler’s Frequent Low Dose Chelation protocol.
Thanks Christine. Ive been getting good advice on support groups and they mention the possible B vitamin reactions with mercury. I have been recommended niacinamide which I may try.
Christine, did you end up trying a low histamine diet, did it help? Thank you for your helpful posts.
No, I’d never heard of a low histamine diet before this.
Are you under the guidance of any specialists holistic or otherwise? Genetics are not to be taken lightly. Different genes have different SNP’s and may be treated differently than someone else’s genes. You should not be going through any hell if the person treating you knows what they are doing, NOW, some supplements can have side effects hell, and Methylation Complete Neurobiologix is one of them. There are other supplements that are supposed to be taken with it if you do go through hell with it. The right Holistic practitioner knows how to put you on the CORRECT supplements and amount according to YOUR genes. I felt better quickly, and the brain fog comes when I’m off the Autoimmune diet (it happens). Your diet plays a HUGE part in how u feel. Good luck
Try to find an integrative practice that takes insurance. Sometimes they have wait lists so it’s best to start looking.
I’m compound heterozygous (I have both mutations yay me lol). My “only” symptoms thus far at age 45 is anxiety. If the anxiety goes un-treated or under treated, I get depression.
I don’t have answers for anyone as I’m still waiting on my integrative med appts (end of Oct 2016) but I have been researching. I had a rotten reaction to Deplin after psych prescribed it after finding MTHFR from a gene test I did through practice (I was on 10mg viibryd and 25 mg Lamictal for anxiety/depression & I was ok for the year or so on it but was starting to get anxiety again and derealization & downer moods, hence the gene test. I thought the test was just going to tell what medications my body metabolizes. Little did I know it was going to open a can of worms with MTHFR rabbit hole, doh)!
Anyway, after 3 days of Deplin, I had hideous anxiety & adrenaline like I’d never had. Deplin is 15mg l-methyfolate! I now know that’s entirely too much. Some ppl get anxiety on just 400 micrograms!
Bc of that, it gave me too much serotonin and they stopped the viibryd cold turkey. I was only on 10mg & was hoping to just get through withdraw & address nutrition.
That didn’t work so well. My withdraw symptoms plus over-worrying about MTHFR and I got into a pit w/anxiety & depression, paranoia, etc. nothing is ever dealt with! (I’d also never stopped an AD cold turkey/or stopped one and these symptoms are not uncommon for withdraw).
I’m now on 20mg Cymbalta & 10mg Nortriptyline for 2.5 weeks. Having better days but not where I want to be yet.
I digress-for any of us with MTHFR, stop consuming folic acid. It is synthetic folate & we do not metabolize it properly. In 1998, the US Gov started enriching our breads, riced etc with crappy folic acid.
Try & find an integrative or functional med practice. Do a 23&Me & get it analyzed. You can do that online with Sterling App, Livewello etc.
I hope y’all will update your stories and let us know how you are. This mutation has been around since the beginning of time and one in two of us have some variation.
Dr Ben Lynch, Amy Yaskow and many others have good websites with good info.
It’s easy to lock onto just one polymorphism and try to just fix that. We are complex systems that interconnect and a specific symptom can be expressed by different polymorphisms.
To help me and my husband understand mine methylation and detoxification pathways, I printed a methylation flow diagram and used colored pencils to highlight the areas affected. This really helped me get a grasp on what was downstream that could be affected.
I’ve suffered with CFS as a result of endocrinologists only testing TSH, FT4 and FT3. Roughly 80% of T4 is converted to T3 in the liver. I’m missing the GSTT1 gene. Getting supplemental T3 has made a world of difference in my energy levels and took my chronic fatigue to just being a minor level of tired. My search to understand why my body couldn’t convert T4 to T3, why I was developing chemical sensitivities, as well as, trying to figure out why my parents had chronic health issues, led me to 23andme and finding out I’m homo A1298C and have 4 other homo polymorphisms and 9 hetero all in the methylation pathway.
BTW, I only have a sliver of thyroid left. Always tested negative for Hashimoto’s. The endocrinologist suspects it was an auto-immune response when I was eating gluten. He was the first endocrinologist in 20 years to do an ultrasound!
To help my body detox, I use a decaf coffee – sugar &/or salt – coconut oil DIY body scrub. Then use a small brush to do circles coming from my extremities to my lymph nodes. Follow up by drinking LOTS of water.
A friend of mine suffers muscle cramps if her electrolyte level is off. She uses LyteShow – just a few drops in water, not the full dose.
The good news in figuring all of this out is…I’m not crazy! Ok, maybe just a little bit 😉 And to know I’m not alone. HUGS!
Hi, i’m new and completely clueless about MTHFR. All i know is i have both mutations but the doctor said i guess it affects me more in the brain with my neurotransmitter. He started me on Deplin 15 mg but to be honest i’m feeling beyond hungry just craving everything and very moody, angry feeling..i just feel numb like i have no emotions as if i was on an antidepressant ? does anyone have any clue what’s going on?? Is there something better i could be taking? I heard about something called methyl guard plus does anyone know anything about this or could recommend something for me to try? Not to mention my anxiety before taking it and after it seems worse, im very tired and cant seem to function. Feeling hopeless? also have hypothyroidism and am on nature throid and have hoshimots, ever since getting on it as well i havent been the best been very tired. Help if someone can. Thanks!!
William Walsh is the foremost (living) researcher on methylation–his podcasts are very informative. The Walsh Institute also has a list of medical doctors trained in methylation matters. There is over- and undermethylation, or neither. It is very possible to have a false positive on a gene mutation test. If you look at Walsh’s list of traits maybe you can see which group you’re in, in case you suspect a false positive.
Overmethylators do not do well on methyl donors, i.e., methylb12, SAM e, Dmg, TMT, etc, also there is no test for overmethylation, but there is one for undermethylation. 35-45% of bipolar and schizophrenia patients are overmethylators. 95-98% autism are undermethylators. Anthony William also has very good info on thyroid issues in his books and podcasts. Good luck!
How are you doing now? I didn’t see a follow up post and am very curious how things have progressed. Thanks!