Genetic Reenactment #2

 

So how did you get diagnosed with hyperaldosteronism?

I didn't.

Puzzled look.

My blood pressure spiked high out of the blue in a really weird way. Previously, I'd had such low blood pressure, sometimes they couldn't get a reading. Always super low.  Then overnight, bam. High. It felt very hormonal to me and I knew I had an adrenal adenoma plus I'd taken all these premed classes so I knew about hyperaldosteronism. I didn't know about private labs at the time or I would've just done the blood work on my own.

So...no one tested?

No. I was told I was fat and should lose weight. But then I needed more and more medications and my blood pressure wasn't controlled.

Did they test you then?

No. 

Puzzled looks.

What happened was I figured out what meds I needed, which happened to often be prescribed for PCOS, which I had. I went to my dermatologist and asked for the meds using the PCOS diagnosis, and that fixed my blood pressure. So at that point, I went to primary, and we dropped the other meds. Then I started bugging my parent to get tested because they were on even more blood pressure meds than me and totally uncontrolled. They ignored me for ten years, but finally got diagnosed and take the same med as I do and their BP is now perfect. And I'm pretty sure this is what killed my grandparent, by the way.

The doctors are just speechless at this point. (Apparently there aren't a lot of people who game the system like this out there so this kind of blew their minds--one, that I even thought to do it, and two, that I was accurate.)

But...how did you get diagnosed then?

So after they found all the liver tumors, I wasn't taking no for an answer anymore. I went to endocrinology and insisted they test for it. They didn't want to, but...

Wait. They didn't want to test?

No. But I made them and that's how I was diagnosed. Ten years after I knew and 5-6 years after I finagled the correct treatment out of the medical system--there was a period of adrenal insufficiency where I didn't need any meds at all because that dropped my blood pressure on its own.

(And probably I sounded like an insufferable know-it-all, which I kind of am, but I'm aware I really don't know everything. But the stuff I do know I KNOW. Working in industrial chemicals, you have to know your shit or else people die and you poison water and then the government fines the company and you lose your job, so combine that background with all the medical science I've studied and picked up, and I usually have decent judgement and don't go off the rails. 

I can be wrong. I have, in fact, been wrong at times. But not very often.

The other thing, I'm not holding back anymore (at least that's what I tell myself today lol). I'm not pretending to not know. I need doctors who know it's possible for people to be smart and competent and not be scared off by it. Like, I know the general public is insane and would follow Trump over a cliff, I know that's the baseline, the majority, but there are always outliers. I'm a weirdo outlier. I've never been normal. Stop trying to mainstream me.

This isn't a game. It's my life. It's my kid's life. 

I didn't plan it, but this exchange ended up being a good way to evaluate the caliber of the physicians I was working with. They got it. They could see it as I did. Their first instinct wasn't to minimize me or deny my pattern recognition*, which is so often what I experience, particularly with male physicians.)

*I actually get paid good money for that pattern recognition and have created my own, innovative systems in my industry. If I had all the time in the world, given that my health is too difficult and my age too high to ever go into medicine/medical science, I'd actually love to become a futurist. I armchair it now. 

If my life ever slows down maybe I'll set up a Youtube channel or something. There are too many mediocre men** with alt right leanings in the space and almost no women. I just don't have time to really develop my skills with it and do the deep dive data analysis it requires. There are four medical appointments this week alone, some of which take forever because of travel time and lab waits on top of the actual appointment. Plus, I have work, it's not like I don't have a job, and we're still working on the house so...

**I know that's a super fringey left phrase, and I swear I'm more politically moderate than I seem, BUT OMG is there a massive kernel of truth to the stereotype on this one. Sorry, guys. The looney left is right on this one. Most of the futurists are anti-vax super fundies...