POTS and serotonin

I’ve been totally preoccupied with medical crap the last 2 weeks. My PCP started testing me for carcinoid syndrome because I reportedly turn red when I’m about to fall over, and the 5-HIAA level was like 20 times the normal level, so she did blood work. On that my plasma serotonin was really high but chromogranin A was normal, so the endocrinologist says it’s probably NOT carcinoid but rather some exogenous Thing increasing my serotonin. I did find 5-HTP in a supplement recommended by my naturopath so I’ve stopped that and we will repeat labs here in a bit.

PCP also wondered whether my worsening symptoms in the last week are actually serotonin syndrome, and that’s a good theory but there’s no way to find out. My bad symptoms (tachycardia, brain fog, etc) qualify for both serotonin syndrome and dysautonomia; I do think it would be odd to attribute tachycardia to serotonin syndrome rather than POTS since it happens only when I’m upright. I would think with serotonin syndrome my heart rate would not be 60 all night long while I’m lying down. But really I have no idea, and neither do my doctors.

So I’m wondering if this high serotonin thing is just another jacked-up dysautonomia thing. I found one resource saying that people with autonomic dysfunction have problems metabolizing serotonin, but I can’t find any actual medical research to support that. I found another resource saying that there is a strong correlation between dysautonomia and MTHFR/methylation issues, which I also have, but it can’t be very strong because I can’t find much about it.

On a related note I have to wonder about my mood and the serotonin. I weaned myself off all psych meds as of 4 months ago (except, I suppose, for the 5-HTP supplement thingy) and overall my depression has been much better. I’m guessing that had anyone checked my serotonin while I was taking Prozac, Abilify, etc., it would have been a lot higher. It seems that with all that serotonin I should be a very happy person! But no. I can’t sort this all out. I feel sad and hopeless still, but I also have a pretty new chronic illness diagnosis and lifestyle-limiting symptoms, so to me it would actually be kind of weird if I DIDN’T have some reaction to that.

On meds: I tried clonidine for a couple of days and it put me into a HYPERtensive crisis. I can’t figure that out by any means. Except, again, it’s just some weird shit with my body that I can add to the already-large category of weird shit with my body. My blood pressure is not really high OR low on its own, but it is stuck at a low pulse pressure which I believe relates to a lot of my symptoms. My diastolic is a BIT high and my systolic is a BIT low, but apparently I should stop monkeying with either my heart rate or my blood pressure because doing so has in every case worsened my symptoms.

Finally, I am utterly exhausted from monitoring myself and my symptoms. But I currently believe that monitoring my symptoms is the only way to go; sometimes they correlate with weird vital signs and sometimes they don’t, so paying attention to symptoms and triggers is about the only reasonable way I see to approach an even remotely normal lifestyle. Falling all the time is not a normal lifestyle, and the only way to avoid that is to constantly monitor how I’m feeling. And all that physical introspection is just wearing. I don’t know how to fix that. I just hope that I’ll get used to all of this and the monitoring will become more automatic, that this will become just part of my life and not my whole life.

Can’t work this week

I’m feeling shitty because after feeling pretty horrible for the last 2 weeks, but managing to go to work, I now feel so horrible that I couldn’t work yesterday and have had to call in again today. Fucking POTS and/or carcinoid and/or whatever else is conspiring to steal my life. Dizziness is so severe I can barely just walk around in my house, and I have a TINY, tiny house. Brain fog is so horrible I can’t even read a book.

It sounds like it would be nice to have an excuse to take off work, but in reality the suck factor is fairly severe. I can’t do anything. I’m tired but can’t sleep all the time and don’t particularly want to sleep my life away anyway. I’m too dizzy to even sit up for very long, and having to lie down when you’re not sleeping is a paramount example of boredom. I’m so pissed at my body. I mean just get up and DO something, for crying out loud.

Is this what chronic illness does to you? Just steals away your life, a little bit every day? I’m railing against just being unable to do things I feel like I should be able to do.

On the carcinoid front, I had more labs drawn yesterday so just more waiting on those results. My PCP sent a referral over to the nearest Big Medical Center to see if someone there has any ideas. I did finally get a glimpse of my own “flushing,” which until then I’ve just heard about. I felt like I was about to fall over and felt hot, but was safely seated, so I took a selfie and sent it off to a coworker. She said yes, that is what people are talking about. I thought my whole head must be red, but it just looks like my cheekbones and chin are stained red. It does look pretty weird. I’m a very pale person normally. But it really doesn’t look all that dramatic to me compared with what I was imagining when they described it.

So here I am, awake and with nowhere to go and an empty day facing me.

Freaking out…carcinoid?

I got a call yesterday on a test I forgot I had, a 24-hour urine test for 5-HIAA. My doctor ordered it after she found out I turn bright red before I fall over. It came back high, but I’m waiting to TALK to the doctor about WTF that means and what to do now. The Internet reveals that this is a pretty sensitive and specific test for cancer so I’m really anxious. And of course it’s a weird and exotic rare cancer, my specialty.

Of course I called everyone I knew so they could commiserate with me, and I discovered that this turning red thing is a known thing to everyone but me: I obviously am never looking at myself when I start to pass out. My coworkers were all like oh yeah, your ears get red and then your cheekbones turn red and if you still don’t sit down you turn pale as a ghost. Well…good to know, I guess. I did ask if they had any OTHER helpful information for me. (No.)

I feel tortured waiting to hear from my doctor about this.