u/Apart-Development354

We just found overt hypothyroidism finally after it hanging around TSH 4. With other meds and supplements I have to titrate super carefully. I usually do 1/4-1/2 a dose a couple days a week and then build it up over weeks. Idk whether to do that with Levo because it’s a direct hormone my body makes and I obviously need it. I got prescribed 25mcg anyway so it’s low. But should I still titrate? My doc knows nothing about ME

Has anyone noticed SSRIs improving their symptoms? I came off fluoxetine (/prozac) last year and since then (to the month) my symptoms have gotten significantly worse - even tho my daily step count has improved?

TL;DR - For years my dysautonomia symptoms were posture related. Once I sat down, I was fine. For the last year, my ANS loses total control above a certain threshold - once it does, nothing fixes it for hours/days.

Before August/September 2025, most of my symptoms were posture related. I..e I'd stand up and get brain fog and tired and have to sit down. Mostly, it felt like fatigue and a bit of dizziness/lightheadedness and then I'd sit down and feel better (like woah that was a lot, but yey there goes the oxygen to my brain again. Now I'll rest until I have some energy again.) It was draining AF, but situational based.

Since August 2025 that's changed dramatically. Now, it feels like I have a very firm limit in what I can do - both at one time and cumulatively. If I overdo it, i.e. jog for a second or walk carrying something. OR do to much in across the day, it triggers a flare. I feel like I've totally lost control of my ANS. I feel out of control, heart palpitations, breathlessness, adrenaline surges etc. and really shakey. I'm housebound and I can't leave mainly because sitting in the car causes my to lose control like this. I can't cook, showering puts me right up to the edge. I also have for the first time nocturnal symptoms - I flare most nights after 11pm and often have to take sleeping tablets to get any sleep/stop the cascade that starts. This started September 2025 and was so bad I nearly called a ambulance.

For context, I have both M.E. and dysautonomia. Since 2006 I've been ill (likely with just dysautonomia) but been able to live a normal life just a bit miserable and very tired all the time, with a myriad of classic pots/dysautonomia symptoms. My function level stayed the same for years until 2019, when I crashed and developed M.E. At that point my function was able to deteriorate for the first time (and boy did it.)

I finally woke up this year, realised I'd been boom/busting, and started pacing properly in Dec/Jan 2026. Since then, for the first time my daily step count is increasing. For the first time I feel like i'm nailing it and might recover. July 2025 (my lowest) I was at 545 daily steps, Aug 2025 842, sept 1284. I'm now at 2600 average. It's increased really slowly.

But the state of my dysautonomia isn't improving. I still flare easily. Despite my step count being what it was prior to this dysautonomia shift (more, in fact), I'm still in this new reality of dysautonomia. I don't understand what changed?

I started medication in April 2026. Bisoprolol, Pyridistigmine, Midodrine. Prior to that I was bedbound and just standing up would trigger a flare. It helped, but I'm still very disabled.

My few theories are:

1. I overdid it stupidly in April, May and June of 2025 causing a big crash. Has my physiology just changed since then, maybe I crossed a threshold in the diseases.
2. Did the April-June crash cause deconditioning that I just haven't gotten back as I've been pacing since (so even if across the day I'm doing more, I'm doing less at any one time.)
3. I came off fluoxetine (an SSRI) in August 2025. I'd been on it since 2021. Could this have been subtly helping my ANS without me realising, and taking it away removed a crutch by accident?

I'd be confused if it were 1 or 2 because surely it would have hit worse during July when I was at my lowest in terms of PEM etc. I also am pretty sure I'm doing so much more overall that I've probably got some of the conditioning back by now, but symptoms aren't better at all. I just don't know enough to know if 3 is even possible.

Any help would be amazing, I'm totally lost and so frustrated that I thought I had it all figured out this year and this came out of nowhere.