Wednesday, April 23, 2014

Sustainable and Improving

So, for those who don't know... My wife has been posting a bunch of stuff on facebook about thyroid, pituitary and adrenal stuff, medications, diet, how I could have died etc...

Here's why:

A few weeks ago, after months of getting sicker and sicker without realizing that was what was going on (we thought it was just cumulative  exhaustion and burnout from overwork, overstress, traveling,  not sleeping for months, and having had severe pneumonia for six weeks)...

...I spent about a week and a half going in and out of a shallow coma.

It turns out this was because the medications which are supposed to keep my hormones regulated post endocrine cancer, were not working at all (and were in fact having adverse effects and interactions).

I became acutely and critically deficient in several substances necessary to regulate my metabolism and brain function, and my body basically started to shut itself down for 18 to 20 hours at a time.

Because I was on these medications... Very large doses of them in fact.. The cause of the problem, and thus the treatment, were unclear. It seemed impossible that the cause of the problem could be what we eventually found it to be.

I came very close to going into systemic shock, a deeper coma, possibly even brain damage or death.

The thing is, with endocrine issues, sometimes, for some people, the medications that work for everyone else, don't work for them...

Worse, the tests don't necessarily show that the meds aren't working until you reach a critical state.

This is complicated in that endocrine illnesses often present similarly to other problems, or present symptoms which mask real problems, as was happening here.

In fact, in my condition, the primary medication I was taking such a high dosage of, was actually making the problem worse.

Eventually, symptomology made it clear that my medications could not be working, no matter the dosage or what the tests might say.

We have temporarily switched to another primary medication, which has helped immensely. I am no longer close to a coma, and after an initial big improvement, I am recovering gradually.

However, this other medication is very difficult to dose consistently, and has some unpleasant side effects (which is why it is largely no longer used).

Essentially, I roller coaster from moderately too little, to moderately too much of the hormones I need, plus a big dose of stuff I don't want or need (and the somewhat to severely unpleasant side effects thereof), just to ensure that I have at least the minimum amount no matter what, while not having far too much (which can kill me just as easy as not having enough).

There are other options which we will be investigating as we are able to do so, but right now we have no medical insurance and can't afford the extensive testing necessary to find the right drugs and the right dosages; nor can we afford those drugs (they are much more expensive than those I was taking, or have now switched to).

For now... I'm OK but not great... I'm in a sustainable and improving, not deteriorating state. And that's better than I have been for quite some time.