Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

The folate trials

with 7 comments

For want of cash, medical resources and obscure genetic knowledge, I’ve been doing methylation experiments on myself for a couple of years now. I spent my house renovation time continuing that. The events described below are a dramatic portrayal not an actual diary, and are based on multiple, repeated experiments.

The quantities described below are all roughly EU RDA amounts – around 200mcg for folate (any more just doubles the symptoms).

Folic Acid

Day 1: This seems to have helped a lot with my brain fog.
Day 2: This stuff is pretty good. I feel on top of the world! Maybe I’m cured!
Day 3: Hmm, I feel pretty awful if I don’t take this stuff.
Day 4: What is with these rashes, insomnia and nightmares? Why do I have brain fog? I took my folic acid! Maybe I need a higher dose today… Yes, I feel a bit better for that.
Day 5: I am totally dependent on this stuff and it’s making me feel rotten. I have had brain fog all day in spite of taking folic acid. I can’t take a higher and higher dose every day to clear my brain fog!

Folinic Acid (5-formyltetrahydrofolate) – unfortunately this supplement also contains an RDA quantity of methylcobalamin, which obscures results somewhat

Day 1: This seems to have helped A LOT with my brain fog!
Day 2: Damn this stuff is amazing! I am going to use this all the time! I feel great! Wheeee!
Day 3: Why have I got the shakes and brain fog? Never mind, I’ll feel better when I’ve taken some folinic acid! Hmm, that didn’t work as well as I’d hoped.
Day 4: I feel like death warmed up. I am walking around like a zombie. I have to stop taking this stuff before it kills me.

Food Folate (5-methyltetrahydrofolate, 5-MTHF) from failsafe food (mixed beans/pulses)

Day 1: I am having minor issues with bean chemicals, but I feel pretty good and clear.
Day 2: More issues, but I feel pretty good and clear. This tinnitus is a pain.
Day 3: Issues are outweighing the good feeling; I may need to take a break soon. I seem to be gaining some weight. I have tinnitus and insomnia now.
Day 4: I still feel good/clear, but the symptoms are becoming a problem.
Day 5: I feel a bit foggy and my skin is not great, I really need a break.

Food Folate (5-methyltetrahydrofolate, 5-MTHF), Betaine and a bit of MeB12 from failsafe food (wheatgerm with milk)

Day 1: I am having minor bloating issues, but I feel pretty good and clear.
Day 2: More bloating issues, but I feel pretty good and clear. I want some more wheatgerm.
Day 3: I may need to take a break soon. I seem to be gaining some weight. I seem to be craving wheatgerm. Gosh it’s making me sleepy.
Day 4: I still feel good/clear, I seem to be gaining some weight. I feel pretty bloated. I can’t be bothered to do anything.
Day 5: I need to take a break before I get fat and lazy.

Food Folate (5-methyltetrahydrofolate, 5-MTHF), B12 and SAMe from NON failsafe food (liver)

Day 1: I am having some issues with chemicals, but I feel pretty good and clear.
Day 2: I seem to be feeling okay today. I am itching though and have some dermatitis.
Day 3: I seem to have a headache and be itchy and my skin looks awful. I don’t feel as clear today.
Day 4: I feel pretty foggy and awful today with the same symptoms as yesterday. Wish I could get rid of this horrendous back pain. This really can’t go on.

Low food folate failsafe diet

Day 1: I feel fine and I’m glad to be off the wheatgerm/beans.
Day 2: I feel much better but I have some wheatgerm cravings.
Day 3: I feel fine.
Day 4: I feel fine.
Day 5: I seem to be a little bit more sensitive than usual.
Day 6: I do seem to be a bit more sensitive than usual.
Day 7: I think I felt marginally better when I was eating wheatgerm.

Methylcobalamin (Methyl-B12, MeB12)

Day 1: This seems to have helped A LOT with my brain fog! Wish I could get to sleep though.
Day 2: Damn this stuff is amazing! I am going to use this all the time! I feel great! Wheeee! I can’t sleep but what the heck! My skin looks better! God I’m happy!
Day 3: Why have I got the shakes and brain fog? Never mind, I’ll feel better when I’ve taken some MeB12! Hmm, that didn’t work as well as I’d hoped. But my skin is still looking great and I feel really positive!
Day 4: I feel better again today. Hurrah. I really need this MeB12 though! Wish I could sort my sleep pattern out. I seem to have insomnia, yet I’m waking up early! I really need some more sleep! It seems to be making me twitchy too. I feel a bit aminey or glutamatey and I have tinnitus!
Day 5: I still feel pretty good but I really need this MeB12, I have shakes and brain fog without it! I have had some strange tingling sensations in my fingers and toes though. Also I still have that insomnia problem and I keep having hypnic jerks! Not sure I like all the weird dreams I’ve been having. Also, why do I keep getting this strange unpleasant trapped nerve sensation in my neck all the time? I hope I’m not wrecking my myelin with this stuff. But I feel really happy-high and I like the way I have stopped putting on weight when I eat bread!
Day 6: Oops I got overconfident with food chemicals because I thought I was cured. Guess strawberries and old meat were a really bad idea. I feel absolutely horrendous.
Day 7: I feel much better again today. Hurrah. I’m cured, I knew I was! I seem to have lost the ability to spell things though!
Day 7-21: Repeat above ad infinitum.
Day 22: Why have I come down with a cold? I never get colds anymore. Hang on, wait a minute, I came down with colds the last two times I supplemented with MeB12 for a while. Maybe I should stop taking it!

Betaine (Trimethylglycine, TMG)

Day 1: I feel pretty good! This stuff is giving me a bit of insomnia though!
Day 2: I still feel good! More insomnia and hypnic jerks though!
Day 3: I don’t feel as great as I do on MeB12.
Day 4: Yep, I’m fine. This stuff seems to contribute to hypnic jerking when I take it with MeB12.
[More experiments are needed to clarify this one as I rarely take it in isolation.]

S-adenosyl-L-methionine (SAMe) and Folapro (supplement form 5MTHF)

I haven’t tested these yet because I can’t afford the $$$ US shipping expenses.

Conclusions

For diagrams of what I’m describing visit this site.

I suspect as I do well on 5MTHF from food sources that I have a MTHFR polymorphism and can’t use synthetic folic/folinic acids in the same way as food source folate.

I do even better on MeB12, which makes sense as it is a form of B12 that has already been methylated by 5MTHF. Unfortunately the side effects from taking MeB12 aren’t very nice, and taking MeB12, whilst it seems to raise my reaction level, still does not protect me. The MeB12 also has some awful negative effects. It seems to make me manic and is probably raising my amine levels, yet also somehow allowing me to deactivate some of those amines – just not as well as I should be able to. Perhaps this is where an MAO-A or a COMT mutation comes in to play. MeB12 can interfere with melatonin levels, and I suspect this is why it gives me insomnia and makes me come down with infections, since melatonin is important for the immune system.

On top of this, it’s as though the other forms of folic acid are being used in other metabolic processes that are making me feel worse. What I don’t understand is why they make me feel ‘amined’, which seems contradictory *if* I have a MTHFR mutation – unless there is something I am missing. Folate also interacts with the glutamatergic system but I am not clear on what it does at what point in the folate cycle. Am I putting pressure on another polymorphism like MTR (methionine synthase) or MTTR (methionine synthase reductase)? Or am I putting pressure on my detox system in some way? PABA, a folic acid precursor is not failsafe and reactive in its own right. Perhaps regular folic acid is simply being degraded and becoming reactive in some way? Or am I using artificial folic acid to make purines? I must admit to feeling ‘gouty’ on rare occasions – aching toe joints and such, but never anything serious.

As you can see I have yet to make a big impact on my food chemical intolerances, and even if I did I wouldn’t be able to ‘cure’ myself, as my methylation enzymes will always be functioning at a slower rate. I have taken very high amounts of MeB12 (1000mcg) in the past and the result has been a very extreme version of the above portrayal. Sure, I felt great for a while but I had severe hypnic jerks and almost gave myself a seizure. I actually felt better when I stopped the supplements.

Update: I’ve now done a food folate trial with a 5-MTHF supplement (FolaPro). It does the same thing to me as folic acid and folinic acid, only it’s less ‘harsh’ than folic acid, and much less ‘harsh’ than folinic acid.

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Written by alienrobotgirl

29 August, 2007 at 12:31 pm

Posted in Methyl Donors

7 Responses

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  1. I get the feeling that even on your basic diet you still have issues with brainfog? That seems to be the only remaining symptom that bothers me. I’ve been eating legumes everyday for the past 3-4 days to avoid meat but i’ve ended up with tinnitus and insomia as well! 🙂 Well I find it amusing…

    Elena

    1 September, 2007 at 10:56 am

  2. LOL!Brain fog was one of the last symptoms to leave me. I was very patchy when I first started the diet. It took a couple of months to be free of it every day. Slight lapses would bring it back.Usually I feel just fine on the diet alone. Milk/wheat make me sleepy and demotivated but don’t give me brain fog. The symptoms I usually get when I cheat are that my skin flares up or I get upper back pain/tension.It is the first ‘morning after’ symptom I get back when I cheat too much though, and that’s when I know I need to stop.I find small amounts of methylcobalamin and TMG help with the brain fog, though too much give me insomnia and make me twitch. I suspect SAMe would help too.I suspect when I cheat I use up my body’s supply of MeB12 very quickly and the brain fog is the result of undermethylation of neurotransmitters.One popular theory of hangover symptoms is that they are caused by a deficiency of B12/folate/SAMe, which fits beautifully.If the genetic tests aren’t an option, it might be worth investing in some 5MTHF, MeB12, TMG and SAMe. You might need a bit of P5P and molybdenum too.Try them very carefully in different combinations and don’t make my mistake and take massive doses! They can make you worse as well as better and it’s hard to tell what you need and what you don’t until it’s too late, that’s why I’m forever telling people to stop taking megadoses — especially in isolation.

    Alien Robot Girl

    1 September, 2007 at 8:49 pm

  3. […] Diary by the witch on May 13th, 2008 You can take your vitamins and throw them down the toilet. Folate makes me manic and gives me eczema. B12 makes me feel a little bit too happy, very intelligent, too awake (great first thing in the […]

  4. […] B12 trials Posted in Vitamins by the witch on June 10th, 2008 Having had some relatively helpful improvements taking methyl-B12, and some fairly awful experiences taking other methyl donors…, especially when trying to come down off them, I’ve been meaning to get round to doing […]

  5. Hi,

    Something that’s been bugging me for a while is you have said a few times that food folate is already methylated… As far as i’m aware, food folate is in THF polyglutamate and is not methylated until its inside the enterocyte. If you have an MTHFR mutation then surely food folate does not help much?

    piratehyde

    16 October, 2008 at 5:40 pm

  6. Hi Elena

    As far as I’m aware food folate is actually MTHFR – methyltetrahydrofolate?

    alienrobotgirl

    10 November, 2008 at 6:54 pm

  7. […] ago, I’m still paying for it with rebound depression and very slow skin healing. Caffeine and folate have the same side […]


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