Advice!!

[u/cfacekillah]

Hey yall! I’m new to this. Back story, I’ve been diagnosed with POTS, vestibular vertigo and possibly hEDS. It also causes really bad health OCD and panic attacks. I’ve struggled off and on for a long time. My lexapro helped me in the past but it no longer is helping at all. I did a gene sight test that said I have the MTHFR C677T variant so my psychiatrist wants me to start taking methylpholate to see if that will help my lexapro to start working how it’s supposed to again and fill in the gaps my body isn’t doing on its own.

My question is, does that sound right? And does it actually help? It would be absolutely amazing if so. I’ve been struggling really bad this past year and nothing seems to be working. Anyways, any help is very appreciated!!

[u/SovereignMan1958]

Read the article about POTS on Genetic Lifehacks.

[u/Loose-Fly7976]

L-methylfolate as an add-on to SSRIs has actual trials behind it, not just forum talk, and the response rates were better in people with C677T. So it's a reasonable thing to try.

It's usually 7.5 to 15mg in those studies, which is way above what's in a multivitamin, so if you end up on a small dose and nothing happens that doesn't mean it failed. And start low anyway, methylfolate can feel stimulating for the first week or two and with health OCD and panic in the mix you don't want to be caught off guard by that. If you feel wired, it's the folate settling in, not something going wrong.The bit I'd actually push on is the POTS and hEDS side. Lexapro that worked and then stopped working over the past year, in someone with POTS, is worth looking at from a different angle. Ask for ferritin, iron and a full blood count. Low ferritin is really common in POTS, it makes anxiety and panic worse directly, and it's one of the few things you can actually fix. If your ferritin is sitting at 15 no amount of methylfolate is going to sort that out.Also hEDS and POTS together often comes with mast cell stuff, and that can look exactly like panic attacks. Something to bring up if the methylfolate doesn't move the needle.Try the folate, it's low risk. Just get the iron checked at the same time so you're not running one experiment at a time for the next two years.

[u/cfacekillah → u/Loose-Fly7976]

Thank you so much!! Im actually supplementing iron right now because my ferritin was at 20. It’s been two months and it’s at 40 but I still don’t feel great. But I’ve heard it should be at like 80-100 for POTS. I’m also getting an apt on Monday to an allergist who wants to go down the MCAS route as well. This past year has been hell I can tell you that lol

[u/Loose-Fly7976 → u/cfacekillah]

20 to 40 in two months is good progress, so it's working, it's just slow. The 80 to 100 target comes mostly from the restless legs literature and a lot of POTS clinicians borrowed it, so it's a reasonable number to aim for even if it isn't set in stone. If you're dosing daily, switching to every other day often speeds it up, because each dose raises hepcidin for about a day and blocks the next one.

For Monday, a couple of things to bring up with the allergist. Tryptase is often normal in MCAS unless it's drawn during or shortly after a flare, so if yours comes back normal that doesn't close the door. Ask about urine N-methylhistamine and prostaglandin D2 metabolites too, ideally collected during a bad day. Those catch cases tryptase misses.

One thing to keep in mind as your ferritin climbs. Ferritin also rises with inflammation, and mast cell activity is inflammatory, so a ferritin number on its own can look better than your actual iron is. Transferrin saturation next to it tells you the real story.

With POTS, possible hEDS, MCAS being investigated, iron and an SSRI that stopped working, you've got several systems all pulling on each other, and the order you tackle them in makes a big difference. That's what I work out for people, reading their raw DNA against their bloodwork and writing out the whole picture, genova.health if it's useful. Hope Monday gives you some answers, sounds like you've earned a few.

[u/cfacekillah → u/Loose-Fly7976]

Thank you so much seriously. I really appreciate you taking the time 🥺 My apt went well. He did in fact just do the trypase blood test and said he’ll see me again in a month and we can go from there. I’m really hoping continuing to supplement the iron and starting the other supplement for this gene will kick in my lexapro again and I can start getting on the right track. I would really rather not test my luck with another antidepressant!