As 2009 progresses I am wondering if this will be the year that I'll get my life back. I spent much I 2008 mired in all my health issues. I would wake up thinking about how awful I felt and go to sleep thinking how awful I felt. I was constantly wondering what was wrong with me and what would make me better. I can remember being in the midst of everything thinking that it had literally hijacked my life.
Somewhere along the way I realized that there wasn't going to be a magic pill to make me feel better. I think this realization happened gradually over the course of several months. I can't say that this realization was what made me stop thinking about my health constantly. What has really done that, is the fact that I do indeed feel better than I did for most of 2008. I am wary of this new found health. On the one hand I appreciate feeling better and on the other hand I wonder how long it will last. When will I be thrown back into the grip of sickness. Grip is the perfect word for how I felt. I wanted it to let go, but it seemed to be holding too tight.
I am not taking this time for granted. I appreciate my health for what it is. Not perfect but better. I have hope for the New Year.
Showing posts with label Thyroid/Pituitary/Migraines. Show all posts
Showing posts with label Thyroid/Pituitary/Migraines. Show all posts
Sunday, January 18, 2009
Monday, December 01, 2008
MIGRAINE NEWS
On September 30th I went on an anti seizure medication to try and control my migraines. I did not have any migraines in the month of October. In November I had three. Every time I get another migraine I get a depressed sort of feeling. I had a lot of hope for this new medicine. The first two migraines came close together and I thought maybe it was a fluke. Then I got that third one.
Even with these migraines I feel that there are a lot of good things about this medicine. As soon as I went on it I started to feel different. My brain seemed to be working better. The only time my brain hasn't been working better was during the days following my three migraines. A lot of my other weird symptoms have gotten quite a bit better. Again, they seemed to only flare up during my migraine episodes.
I go back to see the neurologist in the middle of December. I want to be migraine free but at this point I am not sure if that is possible. I'm also a little scared that if I switch medications my brain will stop being okay. I can't explain to you how frustrating it was to lose that mental function. Its as if I went to from being a relatively smart person to a relatively stupid person. I have never been able to explain this fully to anyone. The only people who truly understand are my husband and my three kids. They witnessed it first hand. They understand what I mean when I say I was out of it. I tried to explain this to the neurologist when I saw him but I don't think he got it. I will try to explain it to him again because I think it is so important, since this medicine has made such a difference.
I think I've gotten pretty much all of my brain back - except for those migraine moments or when I am tired. Now that I've gotten it back I realize how much I was missing. I've recently started reading a Stephen King novel and realized that I hadn't been reading adult books anymore. Last year I started to read the same books that my 8th grade daughter was reading. Although I could follow the adult books, it was just too exhausting and it sucked all the fun out of it. Another thing that I've started doing again is learning to play the keyboard. Last year I had started to teach myself how to play. I have always wanted to learn to play piano and the keyboard is the next best thing. I don't know quite when I stopped but things like that had just fallen by the wayside. I just didn't have the mental ability or energy to do them anymore. I am still lacking in the energy department but have enough to do nonphysical things like playing the keyboard. The bit of physical energy that has returned is generally used up on housework. I'm okay with that, its nice to have my house somewhat organized.
If I look at things in terms of the last 10 months I see a big difference in my health. I think that I have been slowly getting better with occasional setbacks. I am leery of saying that I am truly getting better because it seems that the bad spells that I have come out of nowhere. I can't rule out the possibility that tomorrow I will suddenly have a terrible month that leaves me in bed for days at a time with my brain spinning with chaos. Sounds oh so dramatic but that is what happened to me in February/March. I try to stay positive but its been difficult. Its awful living this way, not knowing when these episodes will strike. Its awful wondering if this is what my life will always be like. Is this something that I will have to accept as the norm for me?
I usually try to end my posts with a sentence that wraps everything up into some sort of conclusion. It seems that this time I can't really do that. My migraine news seems sort of open ended so this is how I will leave it.
Even with these migraines I feel that there are a lot of good things about this medicine. As soon as I went on it I started to feel different. My brain seemed to be working better. The only time my brain hasn't been working better was during the days following my three migraines. A lot of my other weird symptoms have gotten quite a bit better. Again, they seemed to only flare up during my migraine episodes.
I go back to see the neurologist in the middle of December. I want to be migraine free but at this point I am not sure if that is possible. I'm also a little scared that if I switch medications my brain will stop being okay. I can't explain to you how frustrating it was to lose that mental function. Its as if I went to from being a relatively smart person to a relatively stupid person. I have never been able to explain this fully to anyone. The only people who truly understand are my husband and my three kids. They witnessed it first hand. They understand what I mean when I say I was out of it. I tried to explain this to the neurologist when I saw him but I don't think he got it. I will try to explain it to him again because I think it is so important, since this medicine has made such a difference.
I think I've gotten pretty much all of my brain back - except for those migraine moments or when I am tired. Now that I've gotten it back I realize how much I was missing. I've recently started reading a Stephen King novel and realized that I hadn't been reading adult books anymore. Last year I started to read the same books that my 8th grade daughter was reading. Although I could follow the adult books, it was just too exhausting and it sucked all the fun out of it. Another thing that I've started doing again is learning to play the keyboard. Last year I had started to teach myself how to play. I have always wanted to learn to play piano and the keyboard is the next best thing. I don't know quite when I stopped but things like that had just fallen by the wayside. I just didn't have the mental ability or energy to do them anymore. I am still lacking in the energy department but have enough to do nonphysical things like playing the keyboard. The bit of physical energy that has returned is generally used up on housework. I'm okay with that, its nice to have my house somewhat organized.
If I look at things in terms of the last 10 months I see a big difference in my health. I think that I have been slowly getting better with occasional setbacks. I am leery of saying that I am truly getting better because it seems that the bad spells that I have come out of nowhere. I can't rule out the possibility that tomorrow I will suddenly have a terrible month that leaves me in bed for days at a time with my brain spinning with chaos. Sounds oh so dramatic but that is what happened to me in February/March. I try to stay positive but its been difficult. Its awful living this way, not knowing when these episodes will strike. Its awful wondering if this is what my life will always be like. Is this something that I will have to accept as the norm for me?
I usually try to end my posts with a sentence that wraps everything up into some sort of conclusion. It seems that this time I can't really do that. My migraine news seems sort of open ended so this is how I will leave it.
Monday, October 06, 2008
SO MUCH HAS HAPPENED
So much has happened since the last time I have posted. The people who read my blog before were a very small group and I'm sure now those few have even stopped coming - including my husband. He was my number one fan but I doubt that he stops by anymore. He knows I have been feeling so lousy that I don't have the energy to post.
Well, so much has happened since I posted in April. I went to a new endocrinologist at the beginning of June. He discovered that I had low iron and put me on Slow Fe. It has taken a long time, however, slowly but surely it has seemed to help at least with some of my symptoms. I no longer huff and puff from just normal everyday activity. I would still say that I have some symptoms of low iron although I am sure that my lab numbers will show that I am well within range. I've decided that for me, I am going to not go by my lab numbers but just by how I am feeling. I am not worried about having too much iron because I am no where near the upper end of normal.
At the end of August I came down with Shingles! Talk about kicking someone when they are down! The worst of it was over in 4 weeks but I still have some slight itching and some numbness on my back where the rash was. For me the pain was not agonizing but really maddening. I had the pain first and then it was replaced by itching. For about a week or so I had both pain and itching and could not even slightly scratch it because it hurt so much even to rub my fingers over it. The doctor that diagnosed it recommended that I get a complete physical because shingles is usually seen in the elderly or people with compromised immune systems. I felt she was insinuating that I could have cancer when she recommended a mammogram. I figured it would be a good idea to get a physical and went to see an internist (not the same doctor). He listened to my long drawn out story of fatigue, migraines, under active thyroid, shingles, etc and seemed to be undecided whether I was crazy or I actually had something wrong with me. In the end he ran a bunch of tests just to be sure. I am still waiting for those results. If everything comes back negative he can jump onto the bandwagon that says I'm crazy.
During all of this I was still getting many migraines so I decided to keep my appointment that I had at the Jefferson Headache Center in Philadelphia. My visit there on September 30th went well. I had to take a personality test (370 questions) as well as speak to a psychologist to actually see if I am crazy! In reality, they are just seeing how stress may play a role in your headaches. They made sure I realized that they weren't saying that stress is causing my headaches but they were trying to see if the headaches may be exacerbated by stress. In the end the psychologist was actually impressed that I was so emotionally sound considering my not so lovely childhood. She gave me a card in case I want to try acupuncture and a book mark that says "Falun Dafa" on it. Its an ancient spiritual practice. I guess just using this book mark is supposed to relieve any stress I may experience. Hmmm.
My time with the nurse and neurologist was much more fruitful. I came away with a couple of new medications to take. He gave me something to replace the Imitrex I take when I actually get a migraine. Its Imitrex plus Aleve. More importantly, he gave me a prescription for an anti seizure medication that will hopefully prevent my migraines. Its called Lamictal and works to balance the neurotransmitters in the brain. Migraines have to do with the neurotransmitters firing out of control in the brain so it makes sense to try this medicine. He says that this particular medicine seems to be especially effective in migraines with aura. Since I always get the aura and sometimes I only get the aura without the headache, it should work well. Hopefully. If not there is always the book mark!
I try this medication for two and a half months and go back to see him. If it seems to be working, I will then stay on it for eight months. If it controls the headaches for that long I will then be weaned off from it. I can not take a full dose right away but will take a month to build up to the full dose. He said something about how this will help to avoid some sort of lethal rash you can get as a dangerous side effect...hee hee. Seriously, the rash thing is real but I really doubt I will have that problem. After all, I'm an optimist! So far I have been on the lowest dose for one week. My initial reaction is that it may already be helping a little bit. One week is too early to tell how much it may help me but I am hopeful for the first time in months.
I realize that this blog may not really explain all I've been through in the past two years regarding my health. I'm sure it doesn't portray how much I have lost of myself. I have become the sick person and I don't like that. I wish I was my old self but at this point I still feel far away from the old Elise. I know that in the past few months I have learned to ignore many of my problems and continue living my life. Because of this I'm not sure if the medicines are helping or if its just a case of mind over matter.
One of my hopes is that I can start to post a bit more here without always talking about my poor health. The best way to do that would be to start feeling more healthy! Well, if that is not possible then I would still like to find something more positive to write about. Regardless of audience size, I like to write about my everyday happenings.
Well, so much has happened since I posted in April. I went to a new endocrinologist at the beginning of June. He discovered that I had low iron and put me on Slow Fe. It has taken a long time, however, slowly but surely it has seemed to help at least with some of my symptoms. I no longer huff and puff from just normal everyday activity. I would still say that I have some symptoms of low iron although I am sure that my lab numbers will show that I am well within range. I've decided that for me, I am going to not go by my lab numbers but just by how I am feeling. I am not worried about having too much iron because I am no where near the upper end of normal.
At the end of August I came down with Shingles! Talk about kicking someone when they are down! The worst of it was over in 4 weeks but I still have some slight itching and some numbness on my back where the rash was. For me the pain was not agonizing but really maddening. I had the pain first and then it was replaced by itching. For about a week or so I had both pain and itching and could not even slightly scratch it because it hurt so much even to rub my fingers over it. The doctor that diagnosed it recommended that I get a complete physical because shingles is usually seen in the elderly or people with compromised immune systems. I felt she was insinuating that I could have cancer when she recommended a mammogram. I figured it would be a good idea to get a physical and went to see an internist (not the same doctor). He listened to my long drawn out story of fatigue, migraines, under active thyroid, shingles, etc and seemed to be undecided whether I was crazy or I actually had something wrong with me. In the end he ran a bunch of tests just to be sure. I am still waiting for those results. If everything comes back negative he can jump onto the bandwagon that says I'm crazy.
During all of this I was still getting many migraines so I decided to keep my appointment that I had at the Jefferson Headache Center in Philadelphia. My visit there on September 30th went well. I had to take a personality test (370 questions) as well as speak to a psychologist to actually see if I am crazy! In reality, they are just seeing how stress may play a role in your headaches. They made sure I realized that they weren't saying that stress is causing my headaches but they were trying to see if the headaches may be exacerbated by stress. In the end the psychologist was actually impressed that I was so emotionally sound considering my not so lovely childhood. She gave me a card in case I want to try acupuncture and a book mark that says "Falun Dafa" on it. Its an ancient spiritual practice. I guess just using this book mark is supposed to relieve any stress I may experience. Hmmm.
My time with the nurse and neurologist was much more fruitful. I came away with a couple of new medications to take. He gave me something to replace the Imitrex I take when I actually get a migraine. Its Imitrex plus Aleve. More importantly, he gave me a prescription for an anti seizure medication that will hopefully prevent my migraines. Its called Lamictal and works to balance the neurotransmitters in the brain. Migraines have to do with the neurotransmitters firing out of control in the brain so it makes sense to try this medicine. He says that this particular medicine seems to be especially effective in migraines with aura. Since I always get the aura and sometimes I only get the aura without the headache, it should work well. Hopefully. If not there is always the book mark!
I try this medication for two and a half months and go back to see him. If it seems to be working, I will then stay on it for eight months. If it controls the headaches for that long I will then be weaned off from it. I can not take a full dose right away but will take a month to build up to the full dose. He said something about how this will help to avoid some sort of lethal rash you can get as a dangerous side effect...hee hee. Seriously, the rash thing is real but I really doubt I will have that problem. After all, I'm an optimist! So far I have been on the lowest dose for one week. My initial reaction is that it may already be helping a little bit. One week is too early to tell how much it may help me but I am hopeful for the first time in months.
I realize that this blog may not really explain all I've been through in the past two years regarding my health. I'm sure it doesn't portray how much I have lost of myself. I have become the sick person and I don't like that. I wish I was my old self but at this point I still feel far away from the old Elise. I know that in the past few months I have learned to ignore many of my problems and continue living my life. Because of this I'm not sure if the medicines are helping or if its just a case of mind over matter.
One of my hopes is that I can start to post a bit more here without always talking about my poor health. The best way to do that would be to start feeling more healthy! Well, if that is not possible then I would still like to find something more positive to write about. Regardless of audience size, I like to write about my everyday happenings.
Tuesday, April 01, 2008
FEELING BETTER.....I HOPE
My first migraine of this last bunch of migraines was on February 21, 2008. It was followed by five more migraines early in march for a total of six migraines, ending with the last two on March 12, 2008. During the entire time of getting and recovering from the migraines I have a major brain fog. The migraines were followed by over a week of dizzy spells. This was followed by a period of just feeling out of it. I really didn't start to feel significantly better until late last week. I still have moments where I feel odd as if I may get another migraine at any moment. So five weeks of my life gone. Right now I am able to pretty much function but I am pampering myself a bit in order to make sure the migraines don't return.
I have been reading a lot about migraines and have confirmed the connection that I suspected between my under active thyroid and the migraines. It gives me hope that once I FINALLY have my thyroid under control I will not get all these crazy migraines!
A side note, Sarah's numb feet (while running in gym) are a bit better but it's still happening.
UPDATE MAY 29,2008:
I ended up having 10 migraines in April. Eight of those were in one six day period. That was the week that I decided to stop taking my cabergoline. My last two migraines were on April 30, 2008. I am still feeling pretty crummy but have a renewed hope. I have an appointment with a new endocrinologist on June 3, 2008. My hope is he can stabilize my thyroid and I will get rid of these migraines. I have an appointment with Jefferson Headache Center in Philadelphia for September 30, 2008 just in case. I'm hoping by then I can cancel it because I am feeling better.
In the meantime I am tired, have hardly any stamina, my eyes keep twitching and I'm still seeing sort of funny. I hope no more migraines.
I have been reading a lot about migraines and have confirmed the connection that I suspected between my under active thyroid and the migraines. It gives me hope that once I FINALLY have my thyroid under control I will not get all these crazy migraines!
A side note, Sarah's numb feet (while running in gym) are a bit better but it's still happening.
UPDATE MAY 29,2008:
I ended up having 10 migraines in April. Eight of those were in one six day period. That was the week that I decided to stop taking my cabergoline. My last two migraines were on April 30, 2008. I am still feeling pretty crummy but have a renewed hope. I have an appointment with a new endocrinologist on June 3, 2008. My hope is he can stabilize my thyroid and I will get rid of these migraines. I have an appointment with Jefferson Headache Center in Philadelphia for September 30, 2008 just in case. I'm hoping by then I can cancel it because I am feeling better.
In the meantime I am tired, have hardly any stamina, my eyes keep twitching and I'm still seeing sort of funny. I hope no more migraines.
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.
Sunday, January 06, 2008
FEELING BETTER
I have been feeling better for awhile now but haven't posted because I have been busy with the holidays. The new medication I was on made me get more migraines for the first week but now I have been migraine free since. It took awhile but most of my energy has come back also. I once again have a zest for life. I don't know if I'd call myself a dynamo, but at least I have enough energy to accomplish some things.
Thanksgiving was spent at home. I cooked a turkey with all the usual fixings. Christmas was also spent at home. I kept feeling thankful that I was doing so much better and realizing that I couldn't have survived all the shopping and preparing if I didn't feel so good. It really made me appreciate my health. I happily spent the last few days before Christmas sewing pajamas for the three kids to wear on Christmas Eve. I really love sewing. I was disappointed however, that my sewing kept getting interrupted by phone calls bringing bad news! I guess I was being selfish when I got to the point of wishing people would stop calling. I felt that now that I was finally feeling better, I didn't like hearing all this depressing stuff! I just wanted to enjoy the holidays. I did try to be a good person and give these people time to vent. Things seem to be calmed down now so I think I will get some peace.
Thanksgiving was spent at home. I cooked a turkey with all the usual fixings. Christmas was also spent at home. I kept feeling thankful that I was doing so much better and realizing that I couldn't have survived all the shopping and preparing if I didn't feel so good. It really made me appreciate my health. I happily spent the last few days before Christmas sewing pajamas for the three kids to wear on Christmas Eve. I really love sewing. I was disappointed however, that my sewing kept getting interrupted by phone calls bringing bad news! I guess I was being selfish when I got to the point of wishing people would stop calling. I felt that now that I was finally feeling better, I didn't like hearing all this depressing stuff! I just wanted to enjoy the holidays. I did try to be a good person and give these people time to vent. Things seem to be calmed down now so I think I will get some peace.
Sunday, November 11, 2007
NOT FEELING WELL AND WHINING ABOUT IT
I don't know what it is lately with Oprah but she is apparently on some sort of health kick. I'm sick of Dr. Oz. I don't watch Oprah all the time but it seems that every time I do its Dr. Oz! I guess maybe I'm just experiencing some sour grapes. I have not been healthy lately and no matter what I eat I'm not going to get better. No, even if I drink some green drink made out of celery, cucumbers and spinach I am not going to suddenly feel great. I guess I resent someone telling me that I can "change my genes" if I just do what they recommend. I swear, I heard them say that you can change your genes by following his program.
From what I heard, Oprah shares a problem with me. She has a thyroid problem and went on vacation for a month to help her feel better. Hopefully she is also taking medication for it like I am. The medication keeps me alive! I guess it also makes me feel better but lately I have been having a new problem and don't feel well so I can't really tell.
My problem du jour involves a lot of migraines. Three weeks ago I got the first of seven migraines. Writing it here makes it seem so much better than it actually was. Seven migraines in three weeks, piece of cake. If a person who suffers from migraines reads this, they won't think its a piece of cake. I'm not talking about a person who thinks they suffer from migraines when they really don't. A migraine makes it impossible for me to function. I now have Imitrex to treat the migraines. The Imitrex makes the worse pain go away as long as I don't have to do anything and can spend the day resting. But life goes on and its difficult to just rest for 7 days out of three weeks! Migraines are also exhausting and leave me feeling tired for a day or two so I've pretty much spent the past three weeks barely surviving.
So now I'm trying to figure out why I've been getting migraines. I went back to my Endocrinologist and had more blood work done. I found out that my prolactin (hormone) level is up...again. This could be a possible cause of the headaches. We are treating it with a medication that lists one of the side effects as headaches! Sigh. I also read that you shouldn't take migraine medications at the same time as this new medicine so now I have been battling the migraines without meds. Another sigh.
Did I mention this is all making me grumpy?!?!
I am leaving this alone for now and may post again with a more detailed account of what's going on, you know just for posterity!
From what I heard, Oprah shares a problem with me. She has a thyroid problem and went on vacation for a month to help her feel better. Hopefully she is also taking medication for it like I am. The medication keeps me alive! I guess it also makes me feel better but lately I have been having a new problem and don't feel well so I can't really tell.
My problem du jour involves a lot of migraines. Three weeks ago I got the first of seven migraines. Writing it here makes it seem so much better than it actually was. Seven migraines in three weeks, piece of cake. If a person who suffers from migraines reads this, they won't think its a piece of cake. I'm not talking about a person who thinks they suffer from migraines when they really don't. A migraine makes it impossible for me to function. I now have Imitrex to treat the migraines. The Imitrex makes the worse pain go away as long as I don't have to do anything and can spend the day resting. But life goes on and its difficult to just rest for 7 days out of three weeks! Migraines are also exhausting and leave me feeling tired for a day or two so I've pretty much spent the past three weeks barely surviving.
So now I'm trying to figure out why I've been getting migraines. I went back to my Endocrinologist and had more blood work done. I found out that my prolactin (hormone) level is up...again. This could be a possible cause of the headaches. We are treating it with a medication that lists one of the side effects as headaches! Sigh. I also read that you shouldn't take migraine medications at the same time as this new medicine so now I have been battling the migraines without meds. Another sigh.
Did I mention this is all making me grumpy?!?!
I am leaving this alone for now and may post again with a more detailed account of what's going on, you know just for posterity!
Tuesday, April 24, 2007
SICK OF BEING SICK
I'm not exactly sick but it does seem like I have a lot of things wrong with me. I rarely write about medical issues on this blog. Mostly because I'm sick of thinking about them. Its giving me a low grade depressed feeling. Today I am in the mood for writing a summary of my problems. I'm not sure why but I've decided to go with my flow.
About 15 years ago I wanted to have children but was not getting my period at all. A work-up by my ob-gyn revealed that 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 it by taking medication for the rest of my life. This was supposed to shrink the tumor and regulate the hormones that it (the tumor) was giving off. I immediately (within a month of starting medication) got pregnant and during the pregnancy could not stay on the medication. 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 now.
Last spring I started having 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 the tumors come 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 gynocologist who gave me an exam. He found a fibroid tumor in my uterus but told me to see an endocrinologist about my pituitary. The ultrasound I had done of the fibroid tumor 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 the 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 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 was also high. The thyroid hormone levels indicated that I had an underactive thyroid and would need to be on medication 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 and an appointment with my neurosurgeon to have him check out this "soft tissue mass" on my pituitary MRI.
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.
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 seperate 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, we will have to do the needle biopsy again.
In the meantime I have gone on thyroid replacement hormone for the underactive thyroid. That has not been very smooth. I started them in August 2006 and still am trying to get the right dosage. It seemed to be the right level after the first blood test check. Then a couple months later it was making me go OVER active so we lowered the dose. Then it ended up back to underactive (even worse then before) so we increased the dose. I will have another blood test next month to see how its going. All these up and down hormones are affecting my mood.
So on April 23rd I had my follow-up MRI and should find out soon what the neurosurgeon thinks. On May 1st I am scheduled for my second needle biopsy. The endocrinologist feels confident that this time she will get a better sample.
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 have really horrible veins for giving blood and for the injections they need to give me for the MRIs. I have plenty of bad stories about mess-ups and the pain involved. I am not a wimp when it comes to enduring pain, but at this point I am getting a bit down about dealing with it. Like I said in the title - I am sick of being sick. I don't want to make another appointment, I don't want to be poked with a needle again, I don't want to hear any more bad news. I know this sounds like a pity party and usually when I get low like this, something or someone comes along who is much worse off and snaps me out of it. I realize that on the grand scale of things, my problems are minute, but that fact will not make that needle biopsy feel any better.
About 15 years ago I wanted to have children but was not getting my period at all. A work-up by my ob-gyn revealed that 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 it by taking medication for the rest of my life. This was supposed to shrink the tumor and regulate the hormones that it (the tumor) was giving off. I immediately (within a month of starting medication) got pregnant and during the pregnancy could not stay on the medication. 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 now.
Last spring I started having 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 the tumors come 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 gynocologist who gave me an exam. He found a fibroid tumor in my uterus but told me to see an endocrinologist about my pituitary. The ultrasound I had done of the fibroid tumor 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 the 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 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 was also high. The thyroid hormone levels indicated that I had an underactive thyroid and would need to be on medication 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 and an appointment with my neurosurgeon to have him check out this "soft tissue mass" on my pituitary MRI.
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.
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 seperate 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, we will have to do the needle biopsy again.
In the meantime I have gone on thyroid replacement hormone for the underactive thyroid. That has not been very smooth. I started them in August 2006 and still am trying to get the right dosage. It seemed to be the right level after the first blood test check. Then a couple months later it was making me go OVER active so we lowered the dose. Then it ended up back to underactive (even worse then before) so we increased the dose. I will have another blood test next month to see how its going. All these up and down hormones are affecting my mood.
So on April 23rd I had my follow-up MRI and should find out soon what the neurosurgeon thinks. On May 1st I am scheduled for my second needle biopsy. The endocrinologist feels confident that this time she will get a better sample.
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 have really horrible veins for giving blood and for the injections they need to give me for the MRIs. I have plenty of bad stories about mess-ups and the pain involved. I am not a wimp when it comes to enduring pain, but at this point I am getting a bit down about dealing with it. Like I said in the title - I am sick of being sick. I don't want to make another appointment, I don't want to be poked with a needle again, I don't want to hear any more bad news. I know this sounds like a pity party and usually when I get low like this, something or someone comes along who is much worse off and snaps me out of it. I realize that on the grand scale of things, my problems are minute, but that fact will not make that needle biopsy feel any better.
Sunday, September 10, 2006
FINALLY SOME GOOD NEWS
Friday I went to see my neurosurgeon about my pituitary tumor. I got copies of my MRI films, the written report and all the blood tests I had done. I walked into his office and just after I sat down, he said "so I have your MRI and it looks like everything is okay". Now, what was I supposed to say to someone who thinks its okay to have a tumor? I said "Well, I wouldn't say everything is okay when there is a tumor there." He then proceeded to explain to me that the "soft tissue mass" that shows up on the MRI is "more than likely not a tumor". Probably just scar tissue but from the previous surgery. The only way of telling for sure is to do another MRI in six months. He said the first thing for me to do is to stop worrying. When I had first read the MRI report, I had thought the radiologist was being wishy washy when he used words like "appears" and "may be". I have never met the radiologist but have the utmost trust in my neurosurgeon. He spent time to review the films with me, point out how perfect my pituitary gland was looking. How the spot where the old tumor was located was still free from tumor. He also showed me the mass that the radiologist was referring to. Its "adjacent" to the pituitary and doesn't look like a tumor to me, and apparently it doesn't look like a tumor to the neurosurgeon. The only wee little worry is "what the heck is it then". I trust my neurosurgeon enough, that I know that if it looked suspicious he would be alerted. Instead of worrying, I'm going to follow his advice and just stop worrying!
Sunday, September 03, 2006
SHOCKED
I've been living in shock for almost a week now. I've been going to doctors and getting tested for this and that. When I found out that I had a fibroid tumor I was surprised but not really worried. Then during a visit last week with my new endocrinologist I found out that the pituitary tumor I had removed 12 years ago has come back. I have an appointment with the neurosurgeon who removed the first pituitary tumor this friday. We will discuss what can be done about it this time. On that same day I found out that my thyroid is underactive and I will need to take medication for the rest of my life. They will do a needle biopsy of the nodule that is on my thyroid in order to rule out anything serious.
Do you know what's really funny? I feel fine. I have all this bad stuff wrong with me, and I feel fine! DO YOU HEAR ME...I FEEL FINE!!!! It must all be a dream. WAKE UP ELISE, WAKE UP!!!
As far as how serious all this is, it could be worse. The operation for the tumor is pretty delicate, but I have a really good surgeon. They go in through your nose. Pretty interesting.
Do you know what's really funny? I feel fine. I have all this bad stuff wrong with me, and I feel fine! DO YOU HEAR ME...I FEEL FINE!!!! It must all be a dream. WAKE UP ELISE, WAKE UP!!!
As far as how serious all this is, it could be worse. The operation for the tumor is pretty delicate, but I have a really good surgeon. They go in through your nose. Pretty interesting.
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