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.

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