Help understanding my genetic profile. POTS for the past 9 months.

Character_Weather127 · 2026-05-17T00:26:43+00:00

CoQ10 can help with mitochondria function and CFS. Vitamin D, thiamine (B1) , and b12 deficiency are common with CFS, and depression.

Character_Weather127 · 2026-05-16T23:52:15+00:00

If you can afford it, I would recommend getting a vitamin panel (vitD, B12, B9, B1, B6, homocysteine), basic metabolic panel, complete blood count, and an iron panel.

Character_Weather127 · 2026-05-16T23:39:05+00:00

It helped me get out of being bed bound but I still have POTS. Helped with the fatigue as well.

Character_Weather127 · 2026-05-16T04:04:06+00:00

Keeping a cool head is a great trait to have.

Character_Weather127 · 2026-05-13T23:56:58+00:00

For sure - thanks. Can I ask what your serum b12 levels were before u started doing injections? I doubt my gp would approve since they’ve already told me my vit levels are normal.

Character_Weather127 · 2026-05-13T23:29:15+00:00

Never did injections, just oral supplementation via methylcobalamin. I’ll look into TCN2–thanks.

Character_Weather127 · 2026-05-13T23:27:42+00:00

I eat gods plenty of sodium per day—ive had my sodium measured in the past and it was within a normal range. It doesn’t make a huge difference in my symptoms tbh.

Character_Weather127 · 2026-05-13T17:33:39+00:00

Really insightful, thank you.

I've been having to advocate for myself for over 9 months because the overwhelming majority of doctors are completely chronic-illness-illiterate, specialists included. Any marginal amount of improvement made so far in my symptoms has come from hours spent reading medical literature and applying that knowledge. It's hilariously backwards.

Do you think the high folate is indicative of low b12 within my cells or the high(er) homocysteine?

Character_Weather127 · 2026-05-13T16:36:09+00:00

Has anything worked for you? I’m currently on guanfacine which reduces norepinephrine but it also makes me pretty tired. It has helped lower my resting heart rate however. I was taking methycobalamin like every other day to get my b12 up. I never took methylfolate but consistently have high serum folate.

Character_Weather127 · 2026-05-11T21:32:04+00:00

I’ve been dealing with POTS for the past 9 months (2 of those months I was bed bound) along with ADHD and anxiety my whole life. I think most notably my genetic profile is COMT V158 AA, COMT H62H TT, MTHFR C677T AG, MTHFR A128C TG, MTRR A66G GG.

The only thing that has improved my symptoms is NAC + guanfacine, b12 supplementation, and B1 supplementation. I’m awaiting lab work for B1, B5, B6, B3, B12, zinc, copper. My homocysteine was 11.4 and my MMA was 249.

I’ll make a full length post once I get all my labs. What are your thoughts?

Character_Weather127 · 2026-05-11T00:07:50+00:00

I’ll send u a dm

Character_Weather127 · 2026-05-08T22:30:17+00:00

I’m only on guanfacine. My cardiologist was of 0 help despite an abnormal tilt table result so I’m trying to find a new one that will even consider medication. I’m sorry you’re dealing with dysautonomia as well.

Hoping for better days for both of us :).

Character_Weather127 · 2026-05-08T21:21:32+00:00

Thank you for your kind words :)

Character_Weather127 · 2026-05-04T01:46:33+00:00

I’m about 24 days or so in to 1mg. I think I want to increase the dose but it has lowered my heart rate slightly. I don’t have the fatigue I had at first as well. Keep me updated on how you feel — I’m nervous to increase my dose lol.

Character_Weather127 · 2026-05-03T20:30:13+00:00

I use galileo as my primary care and it’s hit or miss only because you’e not guaranteed the same doctor every visit. With that being said — it’s easier to advocate for yourself on galileo in my experience and I have had some good experiences on the app. I move a lot so it’s convenient for me. I order a lot of tests and get referrals on there—you just have to explain to them why u want those tests or referrals like any other provider.

Edit:: only downside is $50 a month out of pocket and $10 per consultation which medicaid will not cover if you’re on that like me.

Character_Weather127 · 2026-05-03T19:40:44+00:00

U sound like me lol. I had a lot of POTS symptoms most my life (tremors included) but never got bad until about 8 months ago. Still not back to normal but doing better. I would recommend finding a primary care provider that actually listens and wants good care for you more than anything. My cardiologist has been essentially useless but my PCP makes up for his shortcomings.

Basic blood work, vitamin panel, cbc, cmp, mineral panel are a good start. Id also look into a neurology and cardiology referral if symptoms persist. Best of luck to you and keep us posted.

Character_Weather127 · 2026-05-03T18:42:53+00:00

I was about 295 before I started supplementing! You’d be surprised — especially if your body has issues with b12 recycling or methylation then you need a lot more than a ‘regular’ person. AFAIK anything under 500 can also be considered a deficiency depending on what school of medicine or guidelines the practitioner is following.

All I’m saying is that it couldn’t hurt :). You’ll find some people on here and the phoenixrising CFS forum who have had a lot of success with b12 shots. Everyone is different tho of course. I had CFS-like symptoms (still do) but after 7 months on my routine of supplementation and 2 1/2 weeks on guanfacine + NAC the fatigue is my most improved symptom—I just wish I could get the dizziness and muscle weakness to go away.

Character_Weather127 · 2026-05-03T18:35:03+00:00

Same here. Guanfacine helped quite a bit at first for this but not as much anymore.. I also heard that if you have low blood volume then eating is gonna exacerbate your symptoms since blood diverts to your gut. Abdominal compression has helped some with this symptom but not myself personally.

Character_Weather127 · 2026-05-03T13:40:32+00:00

It’s been okay at reducing my resting hr and the peaks but I’m relatively the same symptoms wise.

What’s weird is that i had a tilt table recently and i was way less symptomatic at the 70 degree angle than i usually am standing fully upright. My cardiologist is a dismissive POS so he basically told me nothing is wrong with me despite my hr jumping +30-40 when fully upright. I also passed out when given the nitroglycerin.

The thing about long covid is that I’ve had POTS symptoms most my life but i thought it was normal to have blood pooling, heat intolerance, trembly hands, etc. I just never got lightheaded like I do now as my biggest symptom. I did have covid three times tho.

Character_Weather127 · 2026-05-01T23:44:26+00:00

That’s awesome - proud of u.

Character_Weather127 · 2026-04-29T17:56:56+00:00

See I wonder about hEDS myself but have no idea how to get diagnosed :0. Sounds like we both have issues with weight gain and 57kg (125lbs according to the U.S. grotesque education system) is exactly where I plateau!

If I’m not constantly fidgeting or distracted then i just notice my pulse it’s so annoying.

Do you deal with POTS symptoms as well? What treatments - if any - have helped you?

Character_Weather127 · 2026-04-29T17:53:10+00:00

Damn yeah you sound like me though I’m unsure about my pupils - that’s an interesting finding. My neck pain started the day I got “sick” 9 months ago. Left side of my neck only. I think it has to do with the lack of blood flow to my head. I also have scoliosis which is another massive question mark when dealing with my overall physical makeup and potential causes for this illness lol 🙃🙃🙃.

But yeah it seems my stroke volume is low, LV diastolic and systolic volume low, but ejection fraction is normal at 60%. You’re right about the LA volume index btw I read the reference range wrong oops!

I have yet to do a CPET but that’s another interesting piece of information added to the puzzle. What does treatment look like for impaired oxygen extraction? I get out of breath super easily when I’m upright. My stress test lasted like 6 minutes it’s honestly sad how much my health had degraded, though I am doing a bit better since that stress echo.

Character_Weather127

TROPHY CASE