Tuesday, June 30, 2015

endoskeptic

There is still a whole lot of skepticism in the world of endocrinology, about some of what's being attributed to hormones like somatropin, cortisol, and oxytocin.  Among medical practitioners in general, and in turn, the general population.  This is because so much of this information is very new, and still inconclusive.  There is very strong evidence that hormones do a lot more than is well understood, but they've still got a ways to go before that makes it into textbooks.

Oxytocin, for example.  If you look it up, you will find some claiming all sorts of nutty sounding things on one side, and some very dry established science, on the other.  The truth is most likely somewhere in between.  Oxytocin requires the pituitary gland to cross into the brain, and I have to ask, if it doesn't have any function in the brain, why does it have such a distinct process for getting there?  For its textbook functions, it doesn't need to get there  at all.

I've learned that it's also common for endocrinologists to be trained to treat symptoms, rather than risk screwing with the endocrine system itself.  In part, because it can have all sorts of unforeseen results.  Supplement one hormone, and another spikes, too.  There is an unpredictability to it, highly indicative that they still have a hell of a lot left to learn.

Incidentally, this could even be yet another explanation for be why I've been feeling bad- my dosage just went up, and that might be throwing off something else.  If my doctor actually gave a fuck, she'd be testing me for that sort of thing, but she doesn't seem terribly thrilled to be treating me at all.

She's just getting through her fellowship, following the lead of the head endocrinologist, though.  He told me that he doesn't like treating the deficiency, because of how expensive it is, and what a pain in the ass insurance companies are about it.  He prefers to treat symptoms as they arise, caused by the deficiency.  It's much more straight forward ..and affordable.

I have a few issues with that. In many of these instances, hormones are like nutrients.  They don't just cause physiological change.  They can be more like conduits to healthy functionality.  In their deficiency, in anyone, various systems begin to deteriorate.  When you supplement the deficiency, you don't cure those symptoms, so much as prevent further deterioration.  This, in turn, gives the body (or mind) a chance to recover.

He'd prefer to let the deterioration keep going, and just keep patching me up, as I fall apart.  Uh yeah, I'd kind of prefer not to be falling apart in the first place, if at all possible.  My doctor is basically telling me that he prefers to wait for deterioration to occur, becoming obvious and problematic enough to treat.

As for mental health type symptoms, they never really reach that point, and the jury is still out on whether hormones impact anything like that at all, so doctors often err on the side of what the textbooks say, with a big pinch of personal bias, regarding how they feel about mental health in general.

This is still new science, really and this makes it all so complicated.  Some of it a decade or two old, in terms of when they started doing the research, but that research and figuring out what to do with the data still seems to be ongoing.

Monday, June 29, 2015

lint deficiency

This weekend was really bad.  I'm aware that most people have no idea what that means, and how hyperbolic it sounds to try to explain it.  Manipulative, even.  I get so tired of trying to explain how dangerously wrong that is.  Hah, "dangerous?"  There I go again, right?  It's not like mental illness has ever actually killed anyone, right?

So anyhow, as usual, I'm trying to figure out why.  What was different.  What did I do differently.  What has made this month different.  Why do I feel better, today.  Even when I went for a run, I had more stamina than I've had in weeks.  Stopped at my usual two miles, but could probably have gone for three, and I wasn't even pacing myself well.

I can see why people come up with all sorts of superstitions, trying to figure out why things go well one day, and not another.  Maybe I was wearing the right pair of socks, and I should start calling them my lucky socks, or something.  Doesn't seem that much crazier than what I am considering.

My doctor suggested taking vitamin D3, so I started that a month ago.  While I'm at it, why don't I take a multivitamin, too, I figured.  And a B-complex.  Sure as hell don't expect that to hurt.. but I Googled it, and there are some supplements that have been linked to aggravating depression.  Folate, for example.  So, I stopped taking the B and the multi, to see if that helps.  Seems like a long shot, it's not like I'm taking megadoses of anything.. but hmm.  Need to see how temporary this improvement is.

It was also grey and rainy this weekend, but nice and sunny today.  Come to think of it, it's been a very rainy month.  I like the rain, but maybe that has something to do with it.  Who the hell knows.

Just seems insane to me that piddling crap like this would matter all that much.  I have this very clear physiological deficiency and getting treated for it should trump all of this other nonsense.  It seems impossible to keep track of all the conditions that people think might cause depression.  You can Google almost anything, and someone somewhere claims it causes depression.

There are probably studies showing a correlation between depression and pocket lint.  I'm so sick of worrying about this shit.

Sunday, June 28, 2015

falling apart

i've spent a huge amount of time in my life, trying to figure things out.  some might question why i do this, some might see it as excuses, this stems from an egregious misjudgement of my condition.  just do it, right?

often i'll refer to my efforts as a means to assess the problem, so that it might be fixed, but the flipside of that is trying to discern if its a problem that cant be fixed.  people think this is defeatist, and seem to prefer sticking to all their awful advice, none of which has ever done anything but make everything worse.  this is not terribly surprising given how obvious it is that they have no clue what i'm going through.  like giving a paraplegic stretching advice, because your legs get stiff sometimes too.

if this is a problem that cant be fixed, its gravely important to understand that.  dragging myself through hell, for a goal that isn't attainable isn't going to make me a better person, it just makes me hate life even more.  forcing myself to be around people, if i have a concrete deficiency in my capacity to socialize isn't going to help me.  there's nothing to learn or get used to.  its just torture.

they say that the longer a person goes without somatropin, the more Quality of Life tends to decline, and the longer they're going to have to be back on it to see any improvement.  it might be difficult for me to dig up a citation though, because everything i've found about this illness has been so sparse.  a comment here, an obscure study there.  all i know is that i'be been on this for months now, and this past month, i've been as miserable as ever.

still running every other day, but that's about it.  i cant deal with anything else.

now i'm going on about oxytocin, instead of somatropin, because it seems a piece of the puzzle is still missing, after all.  a different facet of the same hypopituitarism, but still, feels a lot like grasping at straws.  everyone else just thinks i need to pull harder on my bootstraps, i guess?  maybe it seems crazy that i'm guessing what everyone else thinks, but nobody fucking tells me what they think, nobody knows what to say, so i have little to go on but what's been said in the past.

seems to be a pretty safe bet that when people don't voice their opinions, they either have an offensive opinion better left unsaid, or they don't care enough to have an opinion.  its weird how everyone seemed to forget i existed, while i spent the last 20 years curled up in a fetal position.  only now that i've been thrust back here, is any of this an issue again.  doesn't seem all that crazy to assume nobody fucking cares.

"surround yourself with people who make you feel good about yourself," says a meme on my facebook feed, but for me, there is no such thing.

Friday, June 26, 2015

the trust hormone

"In mammals, many mysteries remain. Oxytocin is difficult to measure reliably in the brain, making it hard to know exactly where, when and how much is normally released; nor do scientists understand precisely how it works to alter behaviour."



This could mean only the most overt deficiency can be measured.  If hypopituitarism is interfering with oxytocin getting into the brain, this can't be measured, because it's actually produced by the hypothalamus, and may be at normal levels in the bloodstream, regardless.  This also means that supplementing oxytocin will have no effect, because this gets it into the bloodstream, but still needs to get across the blood brain barrier to actually do anything there.

This may be why studies on the impact of inhaling oxytocin have been less than conclusive.  It doesn't necessarily get where it needs to go, especially in someone with a condition which might be the result of that very issue.
"The hormone does not act alone. In 2013, neuroscientist Robert Malenka at Stanford University in California and his colleagues showed that oxytocin works together with the neurotransmitter serotonin to reduce the excitability of neurons in the nucleus accumbens, a brain region involved in reward."
The reward of social interaction would be undermined on two different levels, then.  The reward of everything else, possibly diminished, as well.  I imagine this might be a little depressing,  and demotivating, not to mention all the anxiety of distrusting everyone.


I don't know what's wrong with me, but I am so tired of this.  I'm so tired of everyone thinking I'm wrestling with imaginary demons, here.

Wait, who is "everyone?"  Is that unfair?  Do you think I should trust people more?

Friday, June 12, 2015

nothing works

I hate being back here.  Somehow managed to feel like I was almost succeeding at being an odd person, flawed like anyone else, albeit in some eccentric ways.  Counter-culture, really.  Being "normal" seems awfully overrated anyhow.  It seemed like a healthy enough attitude to have about it all.

That was when I had a place to live.  As long as I could feed myself, I was good.  Even that's been a problem in the past, but I'm well past that.  I'd even go so far as to say that I've gotten pretty good at feeding myself.

Now, I can't come shambling across the threshold of my sanctuary anymore.  To breathe a sigh of relief, safe from the outside world.  I'm never safe.  Secure.  Stable.  This is shelter, but this is not home.  It's horrible, and I can't do anything about it.  I'm too damn "eccentric" to even function.

Back to thinking of myself as sick.  Damaged.  In need of some kind of repair.  This situation has driven me to get treated for my hypopituitarism and that's a good thing, I guess, but if it's doing anything, it's not enough.  I'm still completely stuck.  So, I do all these things people say I should do.  I take everyone's crappy advice.  I'm trying everything, but none of it changes the fact that I am stuck.  

I just want a fucking place to live.

Thursday, June 11, 2015

lilliputian

One of the lessons I learned from doing hallucinogens has to do with just how profound a shift in perception can be.  How the exact same words can have very a different meaning, given a different frame of mind.

So much of what we take for granted as real is built upon layers of assumptions and correlations, personal experiences, cultural norms and judgements.  So much of that can change, with a mere shift in neurochemistry, and reality becomes something else entirely.

Sunlight can be harsh to someone who's too sensitive.  The darkness others fear, a comforting reprieve.  A positive thought, a ray of sunshine, or a triviality.  The negative, dismissed as hysterical hyperbole, or taken seriously, as the brutal honest truth.  We can nudge things one way or another, but I think a whole lot of it is bound to these chemical processes, our pathways developing the way they have, tuned to the chemistry of it, as it happens along the way.

For this nudging to have a chance of doing any serious good, I suspect that it has to be very persistent, it needs to be long term.  It needs to be a viable lifestyle change.  Not little steps taken here or there, but something to commit to, everyday.  Something worth committing to.

I have no idea how to make that happen.  I'm barely hanging on,
as it is.

Wednesday, June 10, 2015

psychopharmacosis

I've tried lots of SSRIs over the years.  As far as I'm concerned, they're all crap.  That's been my experience, and there's a substantial amount of evidence indicating that for most people[1], they don't do any good, while for almost everyone, they do some degree of harm.  Also known as
side-effects.

What the mental health industry peddles isn't any sort of actual treatment, so much as hope for the desperate.  We have no idea what's wrong with you, we have no idea how to help, we don't even really know a damn thing about how the brain works, but here, take this neurotoxin, it might fix everything.  You never know, and what have you got to lose?

Nothing.  I'm trying Zoloft again.  Maybe if this doesn't work, I'll look into getting a lobotomy, next.

Friday, June 5, 2015

endocrinological mumbo-jumbo

The last time I saw my endocrinologist, I was thinking about how my current dosage was so difficult to wrestle from insurance, how expensive it is, how much better it is than nothing.  I was thinking about how much it's helped.  How maybe it's enough.  We stayed at that dosage for another
few months.

It's really low, though.  I've been connecting with other GH deficient people over a facebook group, where they talk about their symptoms, their dosages, etc.  Nobody takes 0.3, except as a starter - some people do have adverse reactions, so they start really low, to be on the safe side.  They start at 0.2 mg.  It's like injecting about 2 droplets.

The lowest I've seen was one person complaining about a side effect, after an increase to 0.6mg.  Another was just commenting on getting prescribed 1.6mg, asking if anyone else takes that much.  No one replied, so I think that might be a lot.

At the very least, I'm ready to try 0.4, though.  I've been doing lots of reading about all the different systems somatropin impacts.  This article seems to be a great compilation of known effects, and what replacement can help with.  I was ready to recite as much of it as I could.  In case I was asked where I read all that.  I made sure I knew the very legit sounding name of my source.

The Journal of Clinical Endocrinology and Metabolism.

I also had it open, on my phone.

Never had to get into any of that, though.  My doctor was wrapping up the appointment, with a little spiel about how 0.3 seemed to be a good dose-

I told her about how I'd been interacting with people online, and knew that 0.3 was a really low dose.

"Well, you're not that deficient," she said, "so a low dose might be all you need."

I'm pretty sure this is just flat-out wrong, but I struggled with how to explain that.  I go through this with her, almost every time.  "How do we know, without doing stimulation testing?  When I've had it in the past, I don't remember the numbers, but as it was explained to me, even with stimulation, I wasn't producing any- I mean, maybe trace amounts, but way below normal.  Not just a little low.  Wouldn't it be kind of miraculous if that's changed?"

"What do you mean," she asked, looking blank.

This seems basic to me. It's physiologically impossible that I'd just be mildly deficient.  "I mean, why would I be producing more, now?  The pituitary doesn't usually heal like that, or anything, right?"

"Oh," she said, realizing I was actually making sense. "Right, not usually, no.. most adult cases involve people who have only lost pituitary function as adults ..but, your IGF-1 levels are only a little low.  Within the normal range now-"

But, wait, "IGF levels can be unreliable, can't they?"

"Well, it is pulsatile," she conceded, checking the computer for what they tested at, last time. They were significantly higher, even though I'm on the exact same dosage as I was then.  Even though levels being higher would suggest less deficiency, it helped make my point really well.  IGF-1 levels fluctuate quite a bit.

It's an indirect measure, a byproduct of somatropin being in the system.  IGF-1 levels can also be impacted by other factors.  We didn't get into that, though.  I don't actually know what those factors are, but that's what I read on the internet.  I guess it's probably for the best that the conversation didn't go that way.  Instead, she seemed to be focusing on why I wanted more.  What symptoms I was worried about.

I find it difficult to answer, now that I am feeling better.
Am I all-the-way better?  I don't know- I kinda hope not.  I just know that I'm better than I have been, for most of my adult life.  It's difficult to spin that as a complaint, so I started telling her about how it's not just about my symptoms.

I've read that it can be important for all these different systems, as I went over the checklist in my head.  Cardiovascular health, bone density, muscle growth and recovery, metabolizing proteins, fats, and carbohydrates.  Skin collagen.  Even mental health.  Studies, where, "Decreased psychological well-being has been reported in hypopituitary adults despite replacement of all hormone deficiencies with the exception of GH" and "all showed significant improvements in subjective well-being and QoL after 6 months of GH replacement."

..but, she didn't ask for specifics.  She basically just agreed, it affects stuff, and asked if I'd mind giving her some time to consult with her colleagues.  She left the room, two student doctors in tow, who'd just watched all this.  I wonder if they learned anything.  Her Fellowship is about up, too.  I wonder if she learned anything.

She came back without them, having consulted an elder, and said we could try increasing my dosage to 0.4.  Her rationale seemed to be along the lines of "Why not?  I guess it couldn't hurt."

Fine, I'll take it.

Thursday, June 4, 2015

sowing disbelief

Over the years, one particular theme I've hit on periodically is the process of belief.  It's where I want to talk frankly about something, in a way that some might find offensive.  I want to state something up front, before getting into particulars.  Something which honestly goes without much need to question.

People make shit up.  I'm not talking about the petty lies of individual narratives, but entire belief systems, predicated on make believe.  Somewhere along the line, stories were told, and they were believed, and the more people who believed, the more momentum this fantasy gained.  An ever growing gigantic snowballing mountain of bullshit.

We're implored to respect each other's right to believe what we want to believe, but what happens if I start making shit up, and expecting people to respect it?  No, it has to have precedent, consensus, a history of gullibility, and somehow, this makes it more respectable.  Fuck that.  It's intellectually dishonest to claim we respect each other's beliefs regardless of how nonsensical they are.  You people have rules about the sort of beliefs you respect, and the sort you don't, and those rules are predicated on self-serving make-believe bullshit, too.

That brings this around to why it matters.  Our beliefs shape the way we treat people, the way we treat the world around us, how we approach problems, how likely we are to do some good, or some real damage.  I guess I'm just kind of partial to the idea that in order to most effectively solve a problem, you first and foremost need to know what the problem is.  If you make shit up, and act on that instead, the results aren't as likely to be positive.

So, when it comes to the process of belief, what are we really dealing with, here?  What is the true nature of the problem?  Why do people do it?  Where does it start?

I remember telling stories to my friends, when I was a kid.  Sometimes stretching the truth, maybe adding a fantastical detail here or there.  If I could get someone else to believe it, it felt like maybe I could believe it, too.  It seemed to start not with my own belief, but in that desire to tell a believable story.  I didn't think about whether it was true or not, I didn't think about it as lying.  An act of creativity, untethered by self-awareness or judgement, that I eventually outgrew.

It is not surprising that this sort of process has produced a lot that's been quite beautiful.  I can understand wanting to hold onto that, to embrace it.  Is rationality really so much better?  Why should  necessarily logic trump art, anyhow?

I think this depends on whether or not you're getting the ugly end of said beliefs.  Even a plutocratic monarchy that oppresses millions can be romanticized to look beautiful, especially from the distances of class, history, or geography.

Beautiful or not, beliefs have consequences.  Whether we're talking about The Heritage Foundation, al-Qaeda, or whoever came up with the source material, so many centuries ago.  The people who propagate these beliefs tend to be manipulative narcissists. A lot of their allure is smoke and mirrors, brilliantly crafted, hiding what benefit there was to telling such lies to begin with.  Hiding why they continue to be perpetuated so fiercely.

This is not a grand conspiracy, but of human nature, and those who discover that they have the means to take advantage of it.  Those with the luck and ability to pull it off.  It can be awe inspiring.  That's part of why it works so well, but that which intentionally obscures the truth is rarely a good thing.

Tuesday, June 2, 2015

random seeds

I like the idea of procedurally generated content.  That is, media created through systematic process, incorporating randomization at some level, to result in an infinite array of possibilities.  Replay value.  Also, the way nature works.

Every tree, every fingerprint, every neuron, the outcome of a procedural process initiated by our DNA.  Much of what we are, the branches that develop one way or another, depending on the precise chemistry that seeds that process.

(Apathy and pituitary disease)