MY HEALTH HISTORY

This is a summary of my health history. I've included the problems that I've had with my pituitary, thyroid, iron level and migraines. I tried to keep it as short as I can.

In the late 1980's when I was in my 20's my period started to become irregular. Doctors told me not to worry, that it was normal. Then about 15 years ago I wanted to have children but by then I was not getting my period at all. A work-up by my ob-gyn revealed that my prolactin level was high and I had a pituitary tumor. The pituitary gland is in the center of your head. The tumor was releasing a hormone called prolactin. This is the hormone that makes a woman produce breast milk. We all know that when a woman breastfeeds, sometimes she doesn't get her period. I was told that I could manage the tumor by taking medication for the rest of my life. This medication was supposed to shrink the tumor and regulate the hormones that the tumor was giving off. I immediately (within a month of starting medication) got pregnant. During the pregnancy I could not stay on the medication, so whenever I was pregnant I would go off the medication and back on when I gave birth.

Two kids later, the medicine was not shrinking the tumor, instead the tumor started to grow. Since it had already filled all the available space and I would be in danger of losing my vision, I needed to have it surgically removed. So 12 years ago my very talented neurosurgeon removed the tumor and I haven't been bothered by it for since. Well, until 2006.

In the spring of 2006 I started having more migraines and my period started coming every three weeks. My first thought was of the tumor. Last time it had made my period stop, but could it have the reverse effect and make it come more often? I've always gotten migraines but very rarely. Was the tumor back and causing these headaches? When I had it removed I was told that 50% of pituitary tumors grow back. By the end of the summer I realized that I would have to find out what was wrong. My first appointment was with my gynecologist who gave me an exam. He found a fibroid tumor in my uterus but told me to see an endocrinologist about my pituitary. I had an ultrasound done of the fibroid tumor and it showed it is not super large. It is not serious and unless it causes me a lot of pain we leave it alone.

I saw an endocrinologist who ordered an MRI to check for the pituitary tumor. Since she is an endocrinologist she was unable to keep her hands off my thyroid! She felt my neck and said "you have a thyroid nodule" and we need to check it using an ultrasound. She also ran blood work to check thyroid hormone levels as well as some other levels which would indicate the pituitary tumor was back and giving off more hormones.

My follow-up visit was loaded with bad news. A soft tissue mass had shown up on the MRI of my pituitary. The hormone associated with the pituitary tumor (prolactin) was also high. The thyroid hormone levels indicated that I had an under active thyroid and would need to be on replacement hormone for the rest of my life. The ultrasound of the thyroid nodule showed that it was large enough to warrant a needle biopsy to check for cancer. I scheduled the biopsy of my thyroid nodule and got a prescription for synthroid to treat the thyroid problem.

I made an appointment with my neurosurgeon to have him check out this "soft tissue mass" on my pituitary. Finally some good news, when I went to see my neurosurgeon he felt that it was "unlikely the the soft tissue mass is a new tumor". Maybe its scar tissue but he ordered another MRI be done in six months to check it again. All follow-up MRIs since then have shown that the mass is stable and a second opinion by a neurologist indicates that although they do not know what it is, it is not a tumor.

Not long after that I had the needle biopsy done. She told me it would hurt some and I would feel pressure. Well, I think she hit a nerve because it hurt so bad that my teeth were throbbing. She had to take four separate samples (going in four times). She sent them off to be analyzed and the results came back "unable to diagnose" because there were not enough cells. Apparently there was too much blood and not enough nodule cells. So as painful as it was I had to have it done again. The second time she only got a few cells but none were cancerous.

I have gone on thyroid replacement hormone for the under active thyroid. Things have not gone smoothly. After being on the medication for a couple of months the blood tests showed that it seemed to be at the right level. Then a couple months later it was making me go OVER active so we lowered the dose. Then it ended up back to under active (even worse then before) so we increased the dose. This was the story of my life for awhile. That seems to be the nature of the thyroid disease I have called Hashimotos. Hashimotos is an autoimmune disease where your own body attacks your thyroid and destroys it.

Some where along the way I saw an opthamologist to check my vision since the pituitary is very close to the optic nerve there's a chance that a tumor can cause vision problems. I was not worried very much about the tumor causing me vision problems, but the way things have been going for me, I was a bit worried he would find some unrelated problem. Fortunately, I am still visually normal!

I continued to have problems with migraines. In the fall of 2007 I started to have even more migraines. The endocrinologist told me it could be because of my high prolactin level. We decided that I should go on another medication to lower that level. Initially, it seemed to make the migraines worse and then after a week or so it seemed to help them. Although I didn't feel 100% well, I seemed to be okay until February of 2008.


In February, my migraines came back with a vengeance. Not only was I getting tons of migraines, my brain seemed to be in chaos. Not in the sense that I was mentally disturbed, but in the sense that my mental functioning was not the same. Its a hard thing to explain and will eventually write a separate post on this. I would call the endocrinologist and she just didn't seem to understand what I was going through and seemed unable to help me. That was when I decided I needed to see another endocrinologist.


I researched to find one that had more experience and had a better chance of helping me. At the beginning of June 2008 I drove three hours to Philadelphia to see my new endocrinologist. He also has an office in Cherry Hill, NJ and that is where I see him now. He did a couple things for me. He found I have a low iron level and put me on an iron supplement (Slow FE). He also let me switch from Synthroid to Armour Thyroid. It's a slow road but these two things seem to be helping.


I was still plagued with migraines so I ended up going to Jefferson Headache Center also in Philadelphia. I had to wait four months for my September 30th appointment. I think that it was worth the wait. I think a lot of my tiredness and lowered mental functioning is due to the migraines. I was put on Lamictal, an anti seizure medication that's also used to treat migraines. I was still getting migraines so at a follow-up visit in December my dose was increased and I was also told to take magnesium. So far the increased dose of Lamictal seems to help but my digestive system seems unable to handle the magnesium.


The saga continues. I will be writing more posts to elaborate on things I've written here.