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.

Got the blues

I felt shitty Thursday and Friday with POTS symptoms, then Saturday I woke up with normal vital signs but feeling like arse. I felt like fire was running through my veins. Everything hurt except my hands and feet, which I could barely feel at all; also my vision had gone funny and my muscles were weak, kept dropping stuff. My PCP told me to go the ER, which I did, although I don’t know why because the same thing happened that always happens. I’m pretty sure if I went to an ER already dead, they would still say it was just psychological. As a bonus, this doctor was a sarcastic bitch.

I’ve been in bed pretty much all weekend feeling like I’ve got the flu but without the fever or cough. I don’t have any theories for why I hurt all over and feel so weak (I can feel my hands and feet again). I’m so gloomy. Is this my life now? Feeling terrible a lot of the time with no reason behind it? I’m glad that POTS explains a good portion of what ails me, at least.

This ER doctor pissed me off by asking (sarcastically of course) what my internet search told me I had. Easy for her to be glib, but it’s pretty apparent to me that unless I have a pretty good idea what’s wrong with me and what might help it, I might as well save my money. I told her I didn’t need the internet to be concerned about strange neurological signs, but otherwise I was too tired and swamp-brained to argue much about it.

My lab results were all normal except for LOW BUN and creatinine, which I’ve neither heard of nor seen before. Her explanation was it could be liver or pancreatic disease, but since I didn’t have any signs of those there was no need to worry. How would she know? I got out less than one sentence about why I was there, she took no history, never asked what meds I was on, anything. Earlier today I tried to figure out what low BUN and creatinine could indicate, but other than the possibilities she mentioned there isn’t much out there. It’s when they are high that obvious things are wrong. Logical processing makes me wonder if it’s from drinking too much water, but I lack the necessary medical degree to figure that out. My lytes were all dead normal.

I hope there isn’t anything much wrong with me. What I dread is the story I’ve heard over and over: “I kept telling doctors x and y, but they kept telling me I was just fine and should relax more, and here I am with this horrible illness that should have been caught earlier.” Happens ALL the time. I just feel like something ain’t right, like badly not right.