Saturday, June 19, 2010

Self-Treatment and Secondary Hypogonadism

I was writing a letter to a friend, when for some reason this topic just leapt onto the page.

The worst part of self-treatment is that even with a mountain of medical documents, lab tests, doctor's opinions (signed and certified) all of the conjecture that we mere mortals can apply to the awesome field of medicine pertaining to ourselves is casually dismissed by every single Doctor we have to talk to. And do we get a fair hearing? Never. It takes upwards of 5 hours to go through the documentation and present all of the lab tests, the chronological order, the reasoning, the other doctors' opinions supporting the prognosis, and then yet one more Doctor will calmly admit, "Hey this is a really complex case." Like no shit, really? What usually happens is that the Doctor doesn't have those 5 hours, and it takes months (...years) for Doctor A to talk to Doctor B, C, D, E, F, G, and H in order to ascertain if I can be believed when I say this is a tad complex and I need more than 15 minutes of your time to discuss treatment options for secondary hypo-everything.

Basically, simplisticly, the human body is like a binary feedback system; It functions like a state machine or a computer, if you will. A computer has chips called ALU's which do simplistic mathematical functions like, voltage high + voltage high is 1+1... The body does this too, and one of those sub-components is the Hypothalamus (a tiny organ in the base of the brain, next to the Pituitary Gland. For example, when a individuals Testosterone level is high, the feedback circuit sends a positive signal to the hypothalamus which then stops pushing out pre-hormone signals to the Pituitary Gland for Luteinizing Hormone, a precursor for the production of Testosterone, to stop the Adrenal Glands or the male testes making more Testosterone. Which is all good and wonderful when it works properly.

In pursuit of my personal medical problems, I have had to work through the pathways of mostly non-standard practices to fit together some semblance of a plan. Most of the knowledge we and the Medical Establishment has at this time is sketchy at best. Really we know very little more today, than Doctor's knew 200 years ago about how the functioning of the human body really works. Just because the body has several mechanisms which act sort of like a state machine doesn't mean the results of the whole system are that simple. Mix into this mess, Klinefelter's Syndrome and its a real mess. Or perhaps I should say, add Secondary Hypogonadism to Klinefelter's Syndrome and its far more complex than just "unknown". Thats why they call Klinefelter's Syndrome a syndrome, we do not know what causes it; The same with Hypogonadism, we can only say, "Odd, it doesn't work right."

So thats where I am... a pituitary/hypothalamus gland that produces the same level of pre-cursor hormones all the time. When I physically push hard my levels of some hormones do not rise like a normal person's does, instead I fatigue quickly and take hours or days to recover what takes everyone else seconds or minutes.
(borrowed from:, the information is still good, if not perfectly formatted for my issue, I'm sure there are better references)

Hormones made by the pituitary gland include:

  • Prolactin: A hormone that causes a woman's breasts to make milk during and after pregnancy.
  • Adrenocorticotropic hormone (ACTH): A hormone that causes the adrenal glands to make a hormone called cortisol. Cortisol helps control the use of sugar, protein, and fats in the body and helps the body deal with stress.
  • Growth hormone: A hormone that helps control body growth and the use of sugar and fat in the body. Growth hormone is also called somatotropin.
  • Thyroid-stimulating hormone: A hormone that causes the thyroid gland to make other hormones that control growth, body temperature, and heart rate. Thyroid-stimulating hormone is also called thyrotropin.
  • Luteinizing hormone (LH) and follicle-stimulating hormone (FSH): Hormones that control the menstrual cycle in women and the making of sperm in men.
In the past I have used progesterone to attain some semblance of managed treatment (self-treating still) for the lack of effects of all of these hormone pre-cursors. Even though it is clear that having some, if not all, of these effects occur resulted in a healthier (we're not sure) and happier me. I cannot stress enough, that no where have I found documentation to suggest anyone else has ever tried to treat this problem, and certainly not with Klinefelter's Syndrome also. And I chose to use Estradiol as my sex-hormone of choice, since that aligns with my personal views more correctly than Testosterone does.

About a year ago, I stopped using progesterone to do some tests... and then forgot all about the tests, and the intersex community, and a number of other things. The lack of progesterone had a significant and clear impact on my ability to function intellectually, and still does. I'm trying to work through, it is painful and hard to remember enough to manage this, if I should beware or take progesterone again. I mean, I must have decided to stop progesterone for a good reason. And a few days ago I finally put the whole puzzle together again, no progesterone is an unhappy Onnineko. I had wanted Doctor's to do an ACTH test for the pituitary system for testing for possible complications of CAH, and the Doctor's then refused to do the test. And I forgot about a great deal of what was short term memory. Bastards! This is the best treatment I can buy, and its barely adequate for 2-3x the cost the average corporate American pays for health care. Have I ever mentioned how distasteful it is to work with the Eugenicists in the American Medical establishment? They take our money and then give nothing in return because its against their ethics to treat people who are considered less than perfectly normal. Grrr!

I self-treat, there are no choices it is self-treat or die of neglect.

What to do .. What to do .. The US medical establishment is hopeless and becoming less competent every year. Progesterone would and has in the past had a strong positive impact on my life. And despite the Doom and Gloom cast by the doctors, I'm still here. Quite possibly because I choose to self-treat. They (the Doctor's) have been counting down my end of life for decades, and they're still wrong. I have some questions, such as:
  • Would attaining a diagnosis for Secondary Hypogonadism change anything in my ability to continue self-treatment?
  • Would attaining a diagnosis for Secondary Hypogonadism change treatment, at all?
  • What exactly am I trying to do with treatment? (live 1000 years of course. :)
  • Everything I have points to using progesterone is a definite positive.
  • So why am I waiting?
Another simplistic view is that Secondary Hypogonadism is like CAH, there are similarities because neither the person with CAH, nor the person with Secondary Hypogonadism is getting enough cortisol. At first I thought my case might have something to do with this, and I eventually found a Doctor willing to test and eliminate this possibility, not that I could get the Doctor to help in any other way! He was willing to listen though, and willing to do a few basic tests to rule out this quite obvious question. I, just like someone with CAH, do not get enough cortisol, however taking progesterone does appear to help correct this issue. We cannot say what the long term effects are though.

I'm still mostly an overweight 5'10" androgyne at 250lbs an apple of desire :)... losing weight would be nice, I'll guess my average weight is probably around 140-155 lbs. This isn't a good snapshot of who I am though. I work out, can do 30 pushups, more situps, and practice martial arts. I walk, running hasn't worked too well, but I can walk for hours and go miles. I live on a limited diet, and really wouldn't know what to do with 2000 calories its hard to eat so much. My weight is an extension of a medical condition, not my lifestyle.

1 comment:

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