In the future, this will be a post about how Sarah's feet went numb anytime she ran. Hopefully, by the time I get around to actually writing it, I will have the good news that the problem was resolved. I think we may almost be there.
Another reason why I haven't posted....this blog could easily turn into one depressing post after another!
Monday, March 03, 2008
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.
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.
SARAH'S EAR TUBE MAKES HER HEARING EXTRA SENSITIVE
Well, Sarah had her tube put in on January 7, 2008. She was mostly worried about not eating and not sleeping well and having it cause her a migraine headache. This did not happen. We arrived at the hospital at the scheduled time and then had to wait in the waiting area for a half hour. We got called back to the surgery area and asked a few questions. She had to put on her hospital Johnny and then was put into a bed to wait some more. It wasn't long before the Anesthesiologist came by and told us he was going to insert the IV before he put her to sleep. When Erin had had tubes put in (twice) they had put her to sleep with gas and then inserted the IV. I had told Sarah that this was what would happen so we were both quite surprised. He felt her arm and told us that she had a good vein. OOPS he missed it. Things went down hill from there. Sarah's eyes were bugged out of her head as he tried to do it again into her hand. I was holding the other hand and felt it go from warm to cold and knew that they wouldn't have much luck. Her veins had collapsed in her panic. She didn't cry but she did feel feint. Then she felt sick to her stomach. Finally, they decided to put her to sleep with gas and then put it in. Both hands were really bruised up and stayed that way for weeks. They must have hit some nerves because she had some weird numbness in her pinkies for a least a month following.
The news from the actual surgery was better. No tumor blocking the Eustachian tube. No fluid in the other ear. Just the one tube and it went in fine.
Things were quite sore afterwards. She had quite a bit of hearing loss beforehand so things seemed quite loud to her after the tube was put in. I knew that when a tube is put in your ear there can be hypersensitivity in your hearing so it was no surprised. I knew that she would have trouble at school, especially in the lunch room. I wanted to make arrangements for her to eat some place else until her hearing was less sensitive. When the nurse from the hospital called I asked her if she knew how long things would seem extra loud for Sarah. She didn't know and recommended that I send Sarah to school with cotton to stuff in her ear. I then called the doctors office and spoke to the nurse there. She not only didn't know, she was amazed that this was happening. I also checked out the internet and was surprised I couldn't find out a lot of information about it. This is surprising because I know it must happen quite frequently. My husband had tubes when he was a kid and he can remember that his hearing was so sensitive that it actually hurt his ears. I finally gave up and figured we would just deal with however long it took. I want to write what happened in regards to this so that if someone else out there ends up at this website they will know how long to expect things to seem loud. During the first day Sarah's hearing was so sensitive that it did indeed hurt. I had to whisper everything. The sensitivity seemed to ebb and flow a bit, probably due to the fact that there may have been some fluid or blood building up and draining. In turn that would block and unblock the hearing. At least that is my guess. The next day she didn't complain about pain from noise although things were still sore in general. We still were talking quietly to her but not keeping things super quiet. She stayed home from school the second day but went back on the third. I arranged for her to eat in a room next to the nurses room (yes, germ heaven). The fourth day she decided on her own to eat in the lunch room Things still seemed a bit loud to her but she knew that she could plug her ear if it got to be too much. I would say that in about a week her hearing seemed normal to her.
The news from the actual surgery was better. No tumor blocking the Eustachian tube. No fluid in the other ear. Just the one tube and it went in fine.
Things were quite sore afterwards. She had quite a bit of hearing loss beforehand so things seemed quite loud to her after the tube was put in. I knew that when a tube is put in your ear there can be hypersensitivity in your hearing so it was no surprised. I knew that she would have trouble at school, especially in the lunch room. I wanted to make arrangements for her to eat some place else until her hearing was less sensitive. When the nurse from the hospital called I asked her if she knew how long things would seem extra loud for Sarah. She didn't know and recommended that I send Sarah to school with cotton to stuff in her ear. I then called the doctors office and spoke to the nurse there. She not only didn't know, she was amazed that this was happening. I also checked out the internet and was surprised I couldn't find out a lot of information about it. This is surprising because I know it must happen quite frequently. My husband had tubes when he was a kid and he can remember that his hearing was so sensitive that it actually hurt his ears. I finally gave up and figured we would just deal with however long it took. I want to write what happened in regards to this so that if someone else out there ends up at this website they will know how long to expect things to seem loud. During the first day Sarah's hearing was so sensitive that it did indeed hurt. I had to whisper everything. The sensitivity seemed to ebb and flow a bit, probably due to the fact that there may have been some fluid or blood building up and draining. In turn that would block and unblock the hearing. At least that is my guess. The next day she didn't complain about pain from noise although things were still sore in general. We still were talking quietly to her but not keeping things super quiet. She stayed home from school the second day but went back on the third. I arranged for her to eat in a room next to the nurses room (yes, germ heaven). The fourth day she decided on her own to eat in the lunch room Things still seemed a bit loud to her but she knew that she could plug her ear if it got to be too much. I would say that in about a week her hearing seemed normal to her.
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