WHY I HARDLY EVER POST ANYMORE

I haven't been posting much because I really haven't been feeling well. Its been almost two years now that I've been dealing with out of whack hormones. It seems like every three or four months I have some new difficulty. It started in the spring of 2006 when I began having migraine headaches and my period started coming every three weeks. I've had a pituitary tumor removed in the past. Since the pituitary is the master gland located in your head and attached to your brain, it can cause some hormonal problems. Among other things, these hormone troubles can mess up your period. I was worried in 2006 that it had come back (50% of pituitary tumors grow back after surgery).



I went to an endocrinologist to find out if it had grown back. She ran some blood tests and had an MRI done. While I was there she looked at my neck and felt it. She found a thyroid nodule that needed to be checked out with an ultrasound and then a fine needle biopsy. She also had some blood work done for possible thyroid disease.

My follow-up visit was filled with bad news. I had a mass on my pituitary and I had an under active thyroid caused by Hashimoto's disease. Hashimoto's disease is an autoimmune disease where my own body is destroying my thyroid. I've been trying to control my thyroid hormone levels ever since. Its bounced between under active and overactive. Mostly just under active and slowly getting worse. Each time my blood work shows numbers that are out of the normal range I feel crummy. It takes several weeks for me to feel better from a new dose of medicine. I recently started taking a higher dose 5 days ago. One of the signals that something is not right is that I get migraines. I also have major brain fog. I also feel exhausted and often times fall asleep during the day. There are other symptoms that I get but those are the worse to deal with.

The mass on my pituitary was not definitively found to be a tumor. However, one of the signs that it is a tumor is that the level of your hormone prolactin is elevated. Mine has been going up and down for the past two years. We figured out that when it goes up it causes me some of the same symptoms as the thyroid does. Mainly, migraine headaches and brain fog. In November we decided to start treating it and with medication we've lowered it into the normal range. In the first six months after finding the pituitary mass, it did not grow. I will be having another MRI in March to see what it looks like now. I've taken to calling it "the tumor" instead of "the mass". I really hope it hasn't grown. It's 1.1 cm, anything over a cm is considered a macro tumor as opposed to a micro tumor.

Since it takes me weeks to recover from either my thyroid hormone being off or my prolactin level being off, I spend much of my time not feeling really well. I know that it could be worse but another symptom is feeling down in the dumps. I think a lot of it is hormonal but there's also the fact that I'm just plain sick of all of this. Whenever I get another migraine, I just think "not again."

Note: I've read this over but I don't have the mental fortitude to try to make sure it makes complete sense.

UPDATE MAY 29, 2008: I spoke to my neurosurgeon and he is almost 100% sure that the mass on my pituitary is not a tumor. Possibly just scar tissue. He had said this before but I was worried because of my elevated prolactin. He said that my prolactin level is not really high enough to be indicative of a tumor. He said it would be at least 75 - mine's always less than 50 but more than 30 - it bounces all over the place. I really trust him and believe that he is right. So now I call it "the blob" on my pituitary. Actually its really adjacent to the pituitary. After feeling really sick and having side effects that I am pretty sure were because of the cabergoline, I decided to stop taking it. A lot of those side effects have gone away although I am still feeling badly.

I am seeing a new endocrinologist soon because I am sick of feeling lousy. I'm hoping a new doctor with more experience will be able to help me. He is around 2 1/2 hours away in Philadelphia but I've read a lot of great recommendations on him. I'm hoping it will be worth the trip and I will feel better. I'm hoping a switch in thyroid medication will help me. I am filled with hope...I feel like I've lost these past two years of my life.