Tuesday, 29 December 2015

Solving the medical mystery that is my body

Today was my appointment with the endocrinologist. As feared I wasn't able to get much sleep last night, even after the upstairs neighbour stopped stumbling about and jarring me back into wakefulness. With too many thoughts, fears and general terror pervading my mind I didn't sleep until 4 AM or thereabouts. Drifting in and out of sleep, I got maybe 1-2 hours of real sleep.

Regardless, I made it to the clinic without issues. As requested I had not eaten breakfast. After waiting for a short while I had a blood sample taken (two tubes this time instead of four like the last time). The nurse taking the blood sample then told me to wait for the endocrinologist.

Despite all my fears, terrors and apprehension it was a very normal appointment, in the sense that it continued on the same course as last time. Exactly as hoped, basically. The results from the first blood sample test were in as well, which raised some interesting questions.

Three questions, in fact. The first being that at first glance my estradiol levels seemed normal while on the hormone therapy (33 pmol, range 27-100 pmol), yet with the question mark of whether the test used measures the artificial estradiol as well, or only the natural type. Without this info we'll need the second test's results to see whether this shifts the value or not.

If it stays at the same value, then that means that my body indeed produces sufficient estradiol on its own and I can stop the HRT. It then can also mean that I did indeed get too much estradiol into my system with the HRT. Yet if it's far below that value with the second test, then clearly I should stay on the HRT, but more questions are raised.

The second question is about why my FSH/LH levels are so high with the first test, matching perimenopause levels. My endocrinologist had no explanation for this, only suggesting that maybe my body isn't used to higher levels of estradiol and cannot properly deal with it. This still has to be examined further.

The third question relates to the linea nigra line on my abdomen. Depending on the outcome of the first question, a different approach is needed. In the former case of having too much estradiol, the linea nigra is most likely caused by this. In the latter case where no overdose of estradiol exists, other avenues have to be explored, including the possibility of rogue, placenta-like tissue.

Everything taken together, these results are puzzling at best. At this point my endocrinologist will inquire with experts on this matter to find out what these results can mean, while also proceeding with finding a suitable surgeon for me for the reconstructive surgery.

Hormone therapy-wise, the endocrinologist left the choice of what I want to do there to me. Since I reported a decrease in migraines and headaches during these past weeks relative to the preceding months, it seems like an idea to not take hormones and await further results. With so many questions still remaining the only thing I can really do is to take the course which feels the best to me.

Amongst all of this, I do however feel a sense of wonder at being taken seriously by a doctor after so long and with the prospect of a quest which really started over two decades ago finally coming to an end next year. It almost seems inconceivable that such a thing might be possible. I can only feel boundless appreciation and gratefulness at this prospect.


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