This phrase, "There really are zebras in Philadelphia," is commonly used by doctors to mean that not everything fits into the normal box of results. Of course, if you are in Philadelphia and you hear hooves, you will normally think "horse." Horses are common in Philadelphia. But, you cannot exclude that occasionally it may be a zebra, although rare, still possible.
This is how James' treatment has been all his life. He RARELY fits into what is common and normal. For example, when one gets an infection, their white blood cell count will rise, an indication of fighting an infection. But, for James, his actually goes down, a result of damage to his bone marrow from chemo, thus causing it to not be able to keep up with the production of white cells.
Several months ago, I was sure that James had hypothyroidism. He has all the tell-tale signs. But, when I took him to the endocrinologist, his thyroid tests were normal, so they wouldn't treat him. As I watched James continue to be lethargic, gain weight quickly, and have red skin, I was sure that something needed done. So, I took him back to the endocrinologist and asked if she would just give the treatment a try, which she did. They waited 6 weeks and tested James again. In that time, his weight gain stopped, but he did not lose any weight and he is still lethargic and has red skin. I was sure that the doctor would see that, although we seem to have started to solve the problem, it isn't solved yet. But, again, his levels were fine and she did not want to change his dose.
I didn't know why James' levels were fine yet he clearly had signs of hypothyroidism, but I figured it had something to do with the fact that James rarely fits into the "normal" category.
But, yesterday I figured out the answer. It came from my sister's sister-in-law, thank you Christa! Are you ready?
When ones thyroid is not functioning right, the pituitary gland increases its production of TSH to stimulate the thyroid to work. The pituitary gland is located near the hypothalamus, which controls the pituitary gland. So, when the thyroid levels drop, the TSH levels rise. When this happens, it indicates hypothryoidism. James' TSH levels are not elevated, in fact they are somewhat low. So, the doctor did not want to treat hypothyroidism.
But, if you take into consideration that James' tumor is IN the hypothalamus and that James just had surgery last summer that would have damaged the hypothalamus as well as the pituitary gland, you would realize that the normal process is not going to happen for him.
So, James' thyroid levels are low (1.1 with the normal being between 4.5-12.5) and his TSH levels are also low. A clear indication that he DOES have hypothyroidism, but that his pituitary gland is damaged.
With this information, I am taking him back to the endocrinologist today to hopefully get his Synthroid increased. The other question that we will have to address is this damage to the pituitary gland. The pituitary gland doesn't just control the thryoid, but also controls other organs, including the adrenal gland. James' labs do indicate that his adrenal gland is also not working properly, so the ultimate answer for him may be that he will need treatment for the damaged pituitary gland. We will see what the endocrinologist says today.
But, a reminder (should there be anyone reading that cares), There really are zebras in Philadelphia, RARE, but they are there.
Friday, October 02, 2009
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