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Sharing my experience concerning MTHFR mutation and ADHD

Wasted71years profile image
6 Replies

I only discovered that I had ADHD a couple of years ago, late in life, and get substantial help from medication (Vyvanse) as well as strategies and self awareness learned once I understand how ADHD impacts me.

I have just discovered that a have a genetic mutation that slashes the effectiveness of a metabolic process that among other things produces both neurotransmitters and their reuptake mechanisms. There is a strong correlation between the mutation and ADHD apparently.

Recently I did some genetic testing for Pharmacogenetics, to determine how my particular genome is likely to interact with many medications. Among the medications they cover were ADHD meds. Since my general practitioner is not well dialed into ADHD and averse to a lot of experimenting, I was luck to find something that works decently for me in the few attempts I could wrest out of him.

I know that I need to find a different doctor but being on Medicare complicates the issue in a world that already gives people challenges getting adequate care. I did the testing to see if I should be pushing to try alternatives. The report identified that I would likely get less satisfactory results with methylphenidate simulants but also less effective results with most of the non-stimulants. The class that was expected to work best were the amphetamines, so I guess I was lucky that we tried Vyvanse first. Some of the reason we tried that first was because of the severe shortages at the time, where Vyvanse seemed to be the most likely to be in stock, as well as the reported gentler behavior as it wore off, but that is just an example of real luck.

The MTHFR mutation c.667-T is the one that I have, two copies, which cuts the metabolic processes down to under 30% of normal. This converts vitamins like B12, B6 and Folic Acid into the forms that work in the body, but the mutation means that you have a vitamin deficiency even though you take the RDA of the vitamins. It is very complicated and I won't go over any more about the this except to say that it effects something called methylation.

To treat this, there are versions of the B vitamins that are already methylated, thus bypassing the impaired process. I began taking the doses of methylated B12, B6 and folic acid (B9) plus a methyl donor enzyme SAM-e, which are the recommended therapies when the double mutation version is producing problems; it is controversial whether there is any benefit taking them if you are not dealing with hyperhomocysteinemia or other problems and simply have the genetic mutations.

These have zero effect on my ADHD when taken on drug holidays, but when I take them along with my Vyvanse I definitely feel good effects. They 'smooth out' the feeling of the stimulant. It is hard for me to explain the difference. Without the supplements I find there is a kind of sharpness to my focus, a very slight overdrive kind of feeling, but I am just 'all there', alert and able to process when I combine the supplements with Vyvanse.

Everybody is different and nobody should be doing anything new based on my report. There are a lot of supplement pedaling operations pushing the supplements so I was very wary going into this. Don't get stampeded into something by the many YouTube videos.

I am sharing my experience as just one more datapoint in the diverse experiences and situations that we with ADHD find ourselves. Maybe the mutation drove the development of ADHD when I was born. Might just be a bit of double bad luck - ADHD and MTHFR double mutation.

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Wasted71years
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6 Replies
GatsbyCat profile image
GatsbyCat

Thank you for sharing. Sounds like you already know what your direction will be.Good luck on this journal called life.

Best regards

Gatsby the Cat 🐈

Tormented555 profile image
Tormented555

Interesting, thanks for posting. I wonder if I have that.. I feel like I have more than just ADD. What are the symptoms and how does one get tested for it? Thanks

Burhanerdem profile image
Burhanerdem

Thank you for sharing your story, I did not know a person can have a ADHD when you turn over sixty years old. I think the best way to help yourself, try to meditate and make sure you have body mind bond together as well.

Wasted71years profile image
Wasted71years in reply to Burhanerdem

ADHD is a developmental issue and is lifelong - you have it from childhood until the end of your life.

Stress and conditions that come up in life can make the impact of ADHD more obvious or overwhelm coping mechanisms that previously were sufficient - job, marriage, child related issues often result in a more obvious trail of destruction from ADHD, leading some to mid or late life diagnoses.

Burhanerdem profile image
Burhanerdem

Thank you for the information. I think, stress has so many side effects in our life and the best way to reduce the stress is lowering social media using time, and also, having some daily quite time.

BridgetBaker profile image
BridgetBaker

thank you for sharing

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