Other Mthfr & autism also...

[CrossingMyLine]

Good evening, peeps. I FINALLY had a formal psych eval and I’m still kind of reeling from the results. Even though I’d been dx bipolar, it never seemed “right”. I came to understand that I had C-PTSD & I suspected ADHD-C. I just got my eval... he believes that I have PTSD/GAD, ADHD-C, MTHFR A1298C polymorphism (can’t demethylate folic acid & someone turned my reactivity & intensity up to 11), and autism. They all feel “right”, but it’s still pretty life-redefining. I always knew that I was socially awkward and that when I get stressed my executive functions tank and I can’t function, but I’ve always been fairly high functioning, so while autism does explain a lot, I am having a hard time coming to terms with it/accepting it. Can anyone relate in any way?!

 

[EveHarrington]

Did you take the genetic test that determines if you have the MTHFR mutation?

 

[shatter eyes]

Are u working with a genetic counselor?

I heard about the gene too

 

[CrossingMyLine]

Good morning! I just realized that I used “demethylate” when I think I mean methylate. At any rate, I only found out about the MTHFR about a week ago and I just received his “official report” yesterday, so... no. I have not sought genetic counseling yet. He actually “discouraged” me from associating my official records with this disorder due to a lack of understanding it and it’s nuances. He has had experience with insurance companies doing unsavory things to people who pursue official diagnosis - including trying to find a way to classify it as a pre-existing condition = we don’t pay for sh*t. Apparently some doctors don’t believe it affects people at all and they blow it off (sound familiar?!?!). I’m weighing my options tho, cuz I would like confirmation through testing and some guidance on lifestyle changes to make.

Are u working with a genetic counselor?

No(t yet?).

I heard about the gene too

Hi, would you mind telling me what you heard about it - assuming you heard about it (not just of it). Thanks!

 

[EveHarrington]

Before starting on methylfolate, get the test done! The supplements are not cheap! One of the reasons I haven’t started taking it yet... it’ll be a part of my next amazon order!

 

[CrossingMyLine]

Before starting on methylfolate, get the test done! The supplements are not cheap! One of the rea...

Thank you! I had noticed the rather high prices! Were you ever warned against being formally diagnosed? I was told that insurance companies frown upon treating “questionable” disorders and are prone to labeling anything they can get away with as “pre-existing” to justify non-coverage. And doctors can be an issue?! Have you gotten tested?

 

[EveHarrington]

Well with Obamacare the pre-existing stuff was supposed to disappear....across the board, for everyone.

No, I have not been warned against having this done and having the results held against me. Even if they had, knowing what I know now, I’d still get it done as the genetic test also tells you what meds will possibly work best for you. I had the test done and the very first med I chose from the list of meds that were most compatible based on my genetic profile was a knock it out of the park winner. No genetic test? It may have taken me YEARS to find the right med. I have a friend who is going through this now and he is miserable.

If you’re in the states I’d say that your doc is scaring you unnecessarily.

This test is VERY new!

Other than definitely affecting the absorption of folate, the connection to other disorders is just a guess! There is a correlation to anxiety and depression, but having the gene doesn’t mean you will have anxiety and depression.

Nothing has been proven in terms of having the MTHFR gene means you WILL have a particular disorder. Not depression or anxiety or whatever other disorder it’s suspected of being linked to.

That is, the level of certainty that the MTHFR gene causes _____ is nowhere near the level of other genes such as the breast cancer gene.

I wouldn’t worry.....I definitely recommend getting the test done.

How would an insurance company see having this gene as being a questionable disorder?

 

[shatter eyes]

Good morning! I just realized that I used “demethylate” when I think I mean methylate. At...

I just read about it as I also had a genetic profile done. It can be very interesting and entertaining too but i agree that lack of understanding can send me into a rabbit hole run.

The MTFHR was in my report too. Currently i am fascinated with RS4680 the Worrier VS Warrior gene considered to be the resilience gene.

My friend is a researcher and she told me to consult with a genetics counselor that can clarify everything.

Sorry i could not add much info on MTFHR

 

[CrossingMyLine]

I’ll look into genetics counseling, thanks!

I’d not heard of RS 4680; it does sound fascinating and I’m interested in looking into it. Got any reputable sources of information you can/will share?

Well with Obamacare the pre-existing stuff was supposed to disappear....across the board, for eve...

It’s too bad that the execution of the ACA was not done as thoughtfully and collaboratively as the writing of it was. I’m all for improvement in our health system - IDGAF about Party on that!

Thanks for the input! I’m definitely going to start looking for reputable places to get genetic counseling. I’m even more motivated about the optimization of my medications/supplements! I can definitely see the brilliance in that. G’day!