So, in March of this year I found out I was had a 6mm pituitary tumor, and life has been weird since. Before I get more in depth, I need to go over some FAQs so people don't get into a panic.
1) Pituitary tumors are very rarely cancerous, so no, I am not dying.
2) Pituitary tumors cause problems with the endocrine system - a.k.a you hormones.
3) 6mm may not seem like anything very large, but considering that your pituitary gland is the size of a pea, it is in did a significantly sized tumor, though still considered a microtumor by definition.
You may be wondering how I found this out. It was simply, really. My reproductive health has always weighed heavily on my mind, however the physicians I was seeing - military doctors, so go figure - wouldn't run any tests, nor answer my questions with anything other than, "It's normal at your age." My symptoms? I hadn't menstruated in four years and was lactating - this was found out through a rather embarrassing even that will not be disclosed. My first, and only, natural menstruation happened when I was fourteen, which is rather late even by most standards. Between that time and the time I moved out from my parents' home about a year after graduating high school, I hadn't had any periods. My gynecologist at the time - and I would like to point out to anyone living in Bellevue, NE that they were at Ehrling Berquist hospital so that if you go there you can pitch a fit if this happens to you - kept telling me that, "Irregularity is normal at your age." I knew she was wrong, but what do you tell a physician when you're still a minor?
After moving to Virginia, I found an OB/GYN that seemed rather knowledgeable. I went for my annual exam, explained what was going on and my concerns about my body, and they drew blood work as well as did the normal tests. Everything came back normal, except the blood work, which never came back. In the mean time I was put on birth control to force menstrual cycles, which worked for about six months. Then I stopped menstruating. Another trip the OB/GYN for more blood work, which came back this time and the results were high prolactin levels. Normal non-pregnant female prolactin is about 30 on the high range, mine came back as 80. An MRI revealed the tumor and I was put on a medication called cabergoline to lower my prolactin.
Now, considering where the tumor is, I became - understandably - concerned with my other endocrine organs. I'd always had weight problems - it being extremely difficult for me to lose weight, and every couple of years packing on fifteen pounds for no known reason - and dry skin among other things, so I was referred to an endocrinologist for more testing.
Now we get into my looks. I've always been shaped oddly for a female, having the hips of a twelve year old boy, slim arms and being rather large chested with somewhat of a tummy. Between my shoulder blades is what's called a buffalo hump, which is basically a lump of fatty tissue. My cheeks have always been very pink - I look like I'm always blushing - since I hit puberty, and I have striae - or what look like stretch marks - on my abdomen though I've not gained a significant amount of weight recently. This kind of appearance is indicative of Cushing's disease, a condition where the body produces too much cortisol - a steroid - so your body packs on the pounds because it is constantly in "fight or flight" mode.
From a physical exam my endocrinologist suspected Cushing's and tested for it twice. Both results came back as normal cortisol levels. My tumor was originally diagnosed as a prolactinoma, though he states that at a 6mm size, my prolactin should be about 200 rather than 80. Thus, I have managed to stump an endocrinologist.
Why is this important? What is the point of me writing about it? I feel it's important to blog about, not for attention, but so that others that may be in the same or similar situation can know that they are not alone. I, for one, find it rather scary to have such a condition and have a very capable physician be unable to determine a correct diagnosis. It is for my own benefit, and the benefit of others to have this out there. Mine, so that if there are others out there that have similar conditions, there is someone to talk to about it. It's frightening and lonely to be so uncontrollably different, especially when no one but yourself, others like you, and your doctor truly understand what it means to have a pituitary tumor. There are so many people in my life that are in a panic because they think I'm dying from this, despite my reassurance that I am not. Every time my family is updated with my test results they are in an uproar, and it's extremely stressful to have to calm them down and re-explain everything. For others out there, I just want you to know that you're not alone. I plan to update new findings in my health, and I hope that at least someone out there can benefit from my journey.
