The first migraine I remember getting was almost thirty years ago when I was a teenager. I can remember I was in Home Ec class and we were making pizza that day. I was sent with another student to the cafeteria to get milk. It was unheard of to have soda in school in those days. On the way to the cafeteria I can remember having something weird happen to my vision and feeling a bit funny. After eating the pizza I began to get a headache and felt sick to my stomach. I went to the nurses office and they called my father to come pick me up. I really felt awful or I wouldn't have had them call my father. I knew he'd be very angry that he had to leave work and he would think I was faking it, although I had never faked illness before. I made it home and as soon as I went upstairs to my bedroom I had to rush to the bathroom to throw up. I pulled the shades and laid down in my bed and tried to keep my head still as I struggled to fall asleep.
A couple hours later I woke up and felt wiped out but I wasn't sick anymore. Being so young I never questioned what had happened and why my vision had whacked out. I just went on living. A while later my cousin told me she got migraines and described them to me. A light bulb went off! That's what I had!
Over the following years I would get one once year or if I was lucky every two years. Nothing worth going to the doctors for. I just suffered through them without any medication. Over the counter stuff never worked for me. Although some of my migraines seemed to come out of the blue, I learned that I had a few triggers that in combination would set off a migraine. I would make sure that I always got enough sleep and on the occasions that I didn't get enough sleep I would stay away from too much caffeine and make sure I ate well.
Then when I was 42 years old things changed. My periods started to come every three weeks and most of the time I would start them off with a migraine. So now instead of once a year I was getting migraines once a month. For those of you who get migraines daily, this may not seem like much but it was very upsetting for me. Over the next two and a half years my migraines became erratic and they increased in frequency. It was not unusual for me to have a two week period where I would get 4 or 5 migraines. I had one especially bad spell where I had eight migraines in a matter of six days.
I often questioned why this was happening to me. What had changed in my body that suddenly caused me to get more migraines? Was it my newly diagnosed under active thyroid or maybe the low iron level? Maybe I'm in perimenopause and the changing hormones have set them off. Maybe its a combination of all those things. My neurologist tells me that in most cases they never figure out what sets them off. They just treat the migraines and try to get rid of them.
A few months ago I had an appointment with Dr. Young at the Jefferson Headache Center in Philadelphia. The visit was a positive one and I will eventually write a separate post about it. Currently I am in the mode of trying preventative medication and I'm hoping that we can get these migraines under control. Even though its been 3.5 months I'm still unsure how much this medication is helping. I've discovered a new found patience when it comes to my health. Only time will tell where I'm headed. I hope I am headed back to where I came from....active, happy and relatively migraine free.
Tuesday, January 20, 2009
Saturday, January 17, 2009
FINE NEEDLE BIOPSY OF MY THYROID
THIS IS A POST THAT I WROTE FOR MY OTHER BLOG JUSTME64. AT THE END I'VE INCLUDED LINK WHERE YOU CAN GO TO JUSTME64 TO READ ALL THE COMMENTS. IF YOU ARE PLANNING ON HAVING A BIOPSY DONE I WOULD HIGHLY RECOMMEND THAT YOU GO THERE AND READ THE COMMENTS. THERE ARE MANY POSITIVE EXPERIENCES AS WELL AS SOME NEGATIVE.
I've decided to describe what it felt like for me to have a needle biopsy done on my thyroid nodule. Before I had it done, I had looked to find out how much pain was involved and most sites downplayed how much it would hurt. I've come to understand that for some people it hurts a lot and for some people it barely hurts at all. So here is a narrative of MY experience.
I enter the darkened room, lit only by a recessed light shining down on the exam table. I am asked to sign a couple of forms. At that time I notice that my hand is a bit shaky. Remember, I've had this done before and I am aware of the pain involved. I'm told to lay down on the table and they comment that I've worn the perfect shirt, a v-neck. I joke and say that I wore it on purpose. They drape one of those paper "cloths" over my shirt leaving my neck exposed. There are two people in the room. The Ultrasound Technician and the Endocrinologist. The Ultrasound Technician gels up my neck and places the ultrasound thingy on the left side of my neck. She says she's just locating the nodule and having a look to see its size and placement. Then the Endocrinologist sprays something from an aerosol can onto my neck. Its cold and burns a bit but is not really painful. This is supposed to numb the skin of my neck by making it really cold. It helps for the first two or three pokes.
I don't look at the needle that she uses because I've been known to get a bit woozy from the thought of needles (I also pass out at the sight of my blood). The first time I had the needle biopsy done I was a bit worried that I would pass out just from the creepiness of having a needle stuck into my neck. I was not worried about that this time because I knew that focusing on the pain would divert all my attention away from the creepy factor.
I already know from the last time I had a biopsy that she wants me to slightly arch my neck so she can work more easily. The Ultrasound Technician places the ultrasound thing on my neck and the Endocrinologist pushes the needle in. As far as the surface of my skin, the pain feels like any other needle that would poke into you. I have never found the pain of needles that bad. She slowly works her way into the nodule, guided by the ultrasound. The first poke goes smoothly. She gets the needle into the nodule with ease. The pain is bearable. Its an inside pressure, an achy sort of feeling. If you've ever had a dentist inject Novocaine a little too fast you may know the kind of feeling. In order to get the sample she needs to move the needle in and out. She does this more slowly than last time, I assume because the last needle biopsy revealed that the samples were inadequate. On the surface of the skin, moving the needle in and out doesn't hurt at all, I only feel the touch of her fingers. Inside the pain is no different. The achy pressure is constant. She takes two more samples and the pain is at a similar level. My hopes are raised that this time will be different. I may walk out of here with the minimal pain she had described.
During the fourth sample the pain began to increase. She had explained to me that the neck has a lot of nerves in it and she may hit one. I'm sure this is true because the pain is in my teeth of my left jaw. Just like last time. She says that some people feel a pain in their ears. I can tell this is true since I can feel my ear too but it is definitely focused in my molars. That throbbing kind of pain. Each sample probably takes less than a minute so although the pain is quite high, I'm able to bear it. Once the needle is out the throbbing subsides but there is now a soreness that doesn't go away.
I ask how many samples she plans to take and she tells me only one more. Generally she takes three good samples for a biopsy. The focus is on the word good because last time she felt that the third sample was not good and she went in for a fourth. This time she had planned on five since the last biopsy came back "undiagnosable". Meaning she didn't get enough cells. I asked her how this had happened last time and she said that sometimes a nodule is very vascular and when the needle goes in it can hit a blood vessel and come back with only blood in it. Looking at a sample with the naked eye, you can not tell if it is good or not. The only way to guarantee that you are getting good samples, would be to do it in the hospital with a pathologist standing by with a microscope.
The fifth sample she takes from a difficult angle and seems to poke around quite a bit before the Ultrasound Technician says she's into the nodule. With the needle in my neck my teeth are throbbing once more and ironically I think I am gritting my teeth waiting for it to be over. After they are done, I'm glad that the Ultrasound Technician is taking a few moments wiping my neck and opening a band aid to put on the tiny holes. I am afraid that if I get up to soon, I may get dizzy.
I am only in the room about 15 minutes altogether. As I said before, I would guess that each sample takes less than a minute. Setting up and cleaning up only take a few minutes. There's a couple minutes in between each sample in order to prepare it to be sent out for analysis.
I'm now ready to leave. My teeth are still quite sore and I take three ibuprofen (Advil) while I wait to check out. It hurts to swallow. My neck is sore. It feels like I slept on it wrong and I have a stiff neck. I feel like I want to wrap it up in warmth. I have brought my hooded sweatshirt on purpose even though the day is pretty warm. I put it on and pull it up close to my neck. Once I start driving home I realize that the skin is also sore, probably from the spray. I want to get the band aid off because the skin on the neck is delicate and its pulling and pinching. I yank it off. I'm one of those people who believe in one quick pull when it comes to band aids! It takes about an hour for the ibuprofen to calm down my teeth and make the neck feel a bit better. It doesn't help the pain with swallowing so I plan on a light supper. The pain after the procedure is bearable. My home is 45 minutes away but I have no trouble driving myself. I was able to stop at the store on the way home to pick up a couple of things. However, I mostly felt that I just wanted to get home and lie in bed and watch TV. Before my first biopsy the doctor had told me that there would be some pain but not very much. This had made me think that I could attend my kids cross country running meet directly after the biopsy. This turned out to be a mistake that I obviously remedied this time around. I knew that I would need time just to lay down and let things calm down. This was an even more fortunate choice since I began to get a stress induced migraine after stopping at the store.
I came home and took migraine medicine and laid down. After about an hour, I got up and looked at my neck. The skin was red and I could see tiny little spots where the needle had gone in. It was also a bit swollen with a visible lump. The morning after, my teeth felt fine but there was still a little stiffness in my neck and swallowing was still hard.
Now I wait for the results. I had the test done Tuesday and she said if I don't hear from her by Monday to give her a call. From what I've read it is quite common to have trouble getting enough cells to diagnose the nodule so I am hoping she got enough this time. She felt that there was a 98% chance that she would get a good sample this time. I also understand that there are a significant number of biopsies where they can not tell if its benign or cancerous (even though they get enough cells). Also, if I remember right, its not out of the question to come back as a false positive. Showing that its cancer but upon removal finding out it was actually benign. In researching this I was quite surprised to find out there are so many things that can go wrong with these thyroid nodule biopsy results. I am in a low risk category so I am not wringing my hands in anticipation of bad news. I just hope that they can read the sample and I can be done with these needle biopsies!
Overall the amount of pain would not be a deal breaker. I still feel that a needle biopsy is a relatively easy procedure to undergo but I think that they purposely downplay the amount of pain. It can hurt quite a bit. I am not trying to scare anyone away from having one done. If I had only needed to have three samples taken the pain would have been minimal. I think that people should be aware of the possible pain and brace themselves for it but not let it influence them in their decision to have a needle biopsy. The information that they get from a biopsy is invaluable. Its great that they don't have to put you to sleep and cut you open.
THIS IS THE LINK TO BE ABLE TO VIEW ALL THE ORIGINAL COMMENTS:
http://justme64.blogspot.com/2007/05/needle-biopsy-of-my-thyroid-nodule.html
I AM NOT ALLOWING COMMENTS TO BE MADE HERE, PLEASE COMMENT AT THE OTHER BLOG BY CLICKING ON THE LINK ABOVE - IT GETS TOO CONFUSING TO HAVE COMMENTS AT BOTH PLACES!!
I've decided to describe what it felt like for me to have a needle biopsy done on my thyroid nodule. Before I had it done, I had looked to find out how much pain was involved and most sites downplayed how much it would hurt. I've come to understand that for some people it hurts a lot and for some people it barely hurts at all. So here is a narrative of MY experience.
I enter the darkened room, lit only by a recessed light shining down on the exam table. I am asked to sign a couple of forms. At that time I notice that my hand is a bit shaky. Remember, I've had this done before and I am aware of the pain involved. I'm told to lay down on the table and they comment that I've worn the perfect shirt, a v-neck. I joke and say that I wore it on purpose. They drape one of those paper "cloths" over my shirt leaving my neck exposed. There are two people in the room. The Ultrasound Technician and the Endocrinologist. The Ultrasound Technician gels up my neck and places the ultrasound thingy on the left side of my neck. She says she's just locating the nodule and having a look to see its size and placement. Then the Endocrinologist sprays something from an aerosol can onto my neck. Its cold and burns a bit but is not really painful. This is supposed to numb the skin of my neck by making it really cold. It helps for the first two or three pokes.
I don't look at the needle that she uses because I've been known to get a bit woozy from the thought of needles (I also pass out at the sight of my blood). The first time I had the needle biopsy done I was a bit worried that I would pass out just from the creepiness of having a needle stuck into my neck. I was not worried about that this time because I knew that focusing on the pain would divert all my attention away from the creepy factor.
I already know from the last time I had a biopsy that she wants me to slightly arch my neck so she can work more easily. The Ultrasound Technician places the ultrasound thing on my neck and the Endocrinologist pushes the needle in. As far as the surface of my skin, the pain feels like any other needle that would poke into you. I have never found the pain of needles that bad. She slowly works her way into the nodule, guided by the ultrasound. The first poke goes smoothly. She gets the needle into the nodule with ease. The pain is bearable. Its an inside pressure, an achy sort of feeling. If you've ever had a dentist inject Novocaine a little too fast you may know the kind of feeling. In order to get the sample she needs to move the needle in and out. She does this more slowly than last time, I assume because the last needle biopsy revealed that the samples were inadequate. On the surface of the skin, moving the needle in and out doesn't hurt at all, I only feel the touch of her fingers. Inside the pain is no different. The achy pressure is constant. She takes two more samples and the pain is at a similar level. My hopes are raised that this time will be different. I may walk out of here with the minimal pain she had described.
During the fourth sample the pain began to increase. She had explained to me that the neck has a lot of nerves in it and she may hit one. I'm sure this is true because the pain is in my teeth of my left jaw. Just like last time. She says that some people feel a pain in their ears. I can tell this is true since I can feel my ear too but it is definitely focused in my molars. That throbbing kind of pain. Each sample probably takes less than a minute so although the pain is quite high, I'm able to bear it. Once the needle is out the throbbing subsides but there is now a soreness that doesn't go away.
I ask how many samples she plans to take and she tells me only one more. Generally she takes three good samples for a biopsy. The focus is on the word good because last time she felt that the third sample was not good and she went in for a fourth. This time she had planned on five since the last biopsy came back "undiagnosable". Meaning she didn't get enough cells. I asked her how this had happened last time and she said that sometimes a nodule is very vascular and when the needle goes in it can hit a blood vessel and come back with only blood in it. Looking at a sample with the naked eye, you can not tell if it is good or not. The only way to guarantee that you are getting good samples, would be to do it in the hospital with a pathologist standing by with a microscope.
The fifth sample she takes from a difficult angle and seems to poke around quite a bit before the Ultrasound Technician says she's into the nodule. With the needle in my neck my teeth are throbbing once more and ironically I think I am gritting my teeth waiting for it to be over. After they are done, I'm glad that the Ultrasound Technician is taking a few moments wiping my neck and opening a band aid to put on the tiny holes. I am afraid that if I get up to soon, I may get dizzy.
I am only in the room about 15 minutes altogether. As I said before, I would guess that each sample takes less than a minute. Setting up and cleaning up only take a few minutes. There's a couple minutes in between each sample in order to prepare it to be sent out for analysis.
I'm now ready to leave. My teeth are still quite sore and I take three ibuprofen (Advil) while I wait to check out. It hurts to swallow. My neck is sore. It feels like I slept on it wrong and I have a stiff neck. I feel like I want to wrap it up in warmth. I have brought my hooded sweatshirt on purpose even though the day is pretty warm. I put it on and pull it up close to my neck. Once I start driving home I realize that the skin is also sore, probably from the spray. I want to get the band aid off because the skin on the neck is delicate and its pulling and pinching. I yank it off. I'm one of those people who believe in one quick pull when it comes to band aids! It takes about an hour for the ibuprofen to calm down my teeth and make the neck feel a bit better. It doesn't help the pain with swallowing so I plan on a light supper. The pain after the procedure is bearable. My home is 45 minutes away but I have no trouble driving myself. I was able to stop at the store on the way home to pick up a couple of things. However, I mostly felt that I just wanted to get home and lie in bed and watch TV. Before my first biopsy the doctor had told me that there would be some pain but not very much. This had made me think that I could attend my kids cross country running meet directly after the biopsy. This turned out to be a mistake that I obviously remedied this time around. I knew that I would need time just to lay down and let things calm down. This was an even more fortunate choice since I began to get a stress induced migraine after stopping at the store.
I came home and took migraine medicine and laid down. After about an hour, I got up and looked at my neck. The skin was red and I could see tiny little spots where the needle had gone in. It was also a bit swollen with a visible lump. The morning after, my teeth felt fine but there was still a little stiffness in my neck and swallowing was still hard.
Now I wait for the results. I had the test done Tuesday and she said if I don't hear from her by Monday to give her a call. From what I've read it is quite common to have trouble getting enough cells to diagnose the nodule so I am hoping she got enough this time. She felt that there was a 98% chance that she would get a good sample this time. I also understand that there are a significant number of biopsies where they can not tell if its benign or cancerous (even though they get enough cells). Also, if I remember right, its not out of the question to come back as a false positive. Showing that its cancer but upon removal finding out it was actually benign. In researching this I was quite surprised to find out there are so many things that can go wrong with these thyroid nodule biopsy results. I am in a low risk category so I am not wringing my hands in anticipation of bad news. I just hope that they can read the sample and I can be done with these needle biopsies!
Overall the amount of pain would not be a deal breaker. I still feel that a needle biopsy is a relatively easy procedure to undergo but I think that they purposely downplay the amount of pain. It can hurt quite a bit. I am not trying to scare anyone away from having one done. If I had only needed to have three samples taken the pain would have been minimal. I think that people should be aware of the possible pain and brace themselves for it but not let it influence them in their decision to have a needle biopsy. The information that they get from a biopsy is invaluable. Its great that they don't have to put you to sleep and cut you open.
THIS IS THE LINK TO BE ABLE TO VIEW ALL THE ORIGINAL COMMENTS:
http://justme64.blogspot.com/2007/05/needle-biopsy-of-my-thyroid-nodule.html
I AM NOT ALLOWING COMMENTS TO BE MADE HERE, PLEASE COMMENT AT THE OTHER BLOG BY CLICKING ON THE LINK ABOVE - IT GETS TOO CONFUSING TO HAVE COMMENTS AT BOTH PLACES!!
LOW IRON SYMPTOMS AND A MIGRAINE CONNECTION
Its been a long time since I've posted but I've decided to go through my "drafts" and post on at least one topic. I picked this one because I am having some luck with raising my iron levels.
When I first switched endocrinologists it was because I was not really feeling better even though my old endocrinologist was getting my thyroid issues under control. I was still often feeling tired and my migraines were getting worse instead of better. My new endocrinologist had more experience and ran some blood tests for a variety of things. It was then that he discovered that my iron was low. It is important to point out that the only thing that came up out of range on my blood test results was the % iron saturation. It was slightly low. Other than that, everything seemingly looked fine. My endocrinologist however, did not think everything looked fine. Since then, I've learned that one of the important numbers he looks at is the Ferritin level (storage iron). Although the range is 10 to 282, my doctor has told me he likes to see it between 60 and 80. Mine was 17 and although I was never considered anemic, I was suffering from the symptoms. When I walked up even one set of stairs I was so out of breath that I could not talk. While gardening I had to bring a lawn chair for my frequent rests, it eventually got to the point where I was shoveling from a sitting position. I had developed a few vertical lines in my fingernails and didn't know why (a symptom of low iron). My heart would often pound for no apparent reason.
I find it interesting that I had so many symptoms when my blood tests were "fine". Fortunately, I was seeing a doctor who knew better. He told me to start taking a supplement called Slo-Fe. I took one a day and my iron level went up to around 40. It seemed to stabilize at that number and I was still having symptoms so I began to take 2 pills. It didn't seem to want to go up anymore so I started to try to take 3 pills a day but it was difficult because when I did, it tended to upset my stomach, making me more prone to heartburn. I also started to try to pay attention to eating foods that were high in iron. I bought a cast iron frying pan and cooked myself scrambled eggs in it. I ate liver cooked in my new frying pan, liver is something that I do not hate but I do not love it either. Some other things I ate that were high in iron were raisins, peanut butter and spinach. I'm not a big meat eater but tried to make sure I had either meat or eggs everyday. I learned that iron from meat or eggs is called heme iron and other iron is called non heme iron. If you eat non heme iron with heme iron it is more readily absorbed. I tried to take my iron pills when I ate meat. Eventually, my level went up to almost 60 but still I felt some symptoms.
My last blood test showed that my level is up to 87. Hooray, but I'm still taking at least one iron pill a day and trying to pay attention to what I eat. I don't want to slack off and have it go back down. I obviously am a long way from overdosing on iron so I don't have to worry about that!
Are my symptoms gone? Its hard to tell because the symptoms of hypothyroidism are often similar. Recently, I have had to increase my dose of thyroid hormone and had been having some symptoms. I was feeling very tired, a bit out of breath, had more headaches (not migraine) and had some heart palpitations. I'm assuming since my thyroid numbers were off and my iron numbers were better than ever, these symptoms were due to the thyroid. The lines in my fingernails are still there but it may take time for them to grow out.
An important point is that I am beginning to think that there is a significant connection between my low iron and my migraine headaches. As my iron level has increased, the migraines have decreased. This may be a coincidence but I can definitely see a correlation between them. My problem began in 2006 when my periods became a bit heavier and more frequent. More than likely this was due to my undiagnosed hypothyroidism. At that time I was getting a migraine with almost every period. I would assume that my iron would be lowest at the time of my period. In the fall of 2007 I began to have more and more symptoms of low iron but thought this was due to my hypothyroidism. In reality, my heavier periods were slowly but surely depleting my iron levels. Through the rest of 2007 and first half of 2008 I felt worse and worse and it was during this time I had the most migraines. Finally in June of 2008 I switched to my new endocrinologist and he discovered the iron problem. It's taken over a year to raise my iron level but as it has increased, my migraines have decreased.
My neurologist has told me that migraines can be episodic so it is possible that I will have another bad episode even with my increased iron level. Only time will tell. One thing that this entire phase has taught me is patience. I have some fear that I will suddenly be plunged into another period just as bad as the 2007/2008 time but I also have hope that maintaining my iron level will be the key to healthy living. Chances are it will not be as simple as that but I will definitely pay attention. My neurologist has told me that most times they are unable to find the exact cause of migraines but can only treat the headache. I've always been a person who asks "why". I would love to know why I suddenly started to get all these migraines.
When I first switched endocrinologists it was because I was not really feeling better even though my old endocrinologist was getting my thyroid issues under control. I was still often feeling tired and my migraines were getting worse instead of better. My new endocrinologist had more experience and ran some blood tests for a variety of things. It was then that he discovered that my iron was low. It is important to point out that the only thing that came up out of range on my blood test results was the % iron saturation. It was slightly low. Other than that, everything seemingly looked fine. My endocrinologist however, did not think everything looked fine. Since then, I've learned that one of the important numbers he looks at is the Ferritin level (storage iron). Although the range is 10 to 282, my doctor has told me he likes to see it between 60 and 80. Mine was 17 and although I was never considered anemic, I was suffering from the symptoms. When I walked up even one set of stairs I was so out of breath that I could not talk. While gardening I had to bring a lawn chair for my frequent rests, it eventually got to the point where I was shoveling from a sitting position. I had developed a few vertical lines in my fingernails and didn't know why (a symptom of low iron). My heart would often pound for no apparent reason.
I find it interesting that I had so many symptoms when my blood tests were "fine". Fortunately, I was seeing a doctor who knew better. He told me to start taking a supplement called Slo-Fe. I took one a day and my iron level went up to around 40. It seemed to stabilize at that number and I was still having symptoms so I began to take 2 pills. It didn't seem to want to go up anymore so I started to try to take 3 pills a day but it was difficult because when I did, it tended to upset my stomach, making me more prone to heartburn. I also started to try to pay attention to eating foods that were high in iron. I bought a cast iron frying pan and cooked myself scrambled eggs in it. I ate liver cooked in my new frying pan, liver is something that I do not hate but I do not love it either. Some other things I ate that were high in iron were raisins, peanut butter and spinach. I'm not a big meat eater but tried to make sure I had either meat or eggs everyday. I learned that iron from meat or eggs is called heme iron and other iron is called non heme iron. If you eat non heme iron with heme iron it is more readily absorbed. I tried to take my iron pills when I ate meat. Eventually, my level went up to almost 60 but still I felt some symptoms.
My last blood test showed that my level is up to 87. Hooray, but I'm still taking at least one iron pill a day and trying to pay attention to what I eat. I don't want to slack off and have it go back down. I obviously am a long way from overdosing on iron so I don't have to worry about that!
Are my symptoms gone? Its hard to tell because the symptoms of hypothyroidism are often similar. Recently, I have had to increase my dose of thyroid hormone and had been having some symptoms. I was feeling very tired, a bit out of breath, had more headaches (not migraine) and had some heart palpitations. I'm assuming since my thyroid numbers were off and my iron numbers were better than ever, these symptoms were due to the thyroid. The lines in my fingernails are still there but it may take time for them to grow out.
An important point is that I am beginning to think that there is a significant connection between my low iron and my migraine headaches. As my iron level has increased, the migraines have decreased. This may be a coincidence but I can definitely see a correlation between them. My problem began in 2006 when my periods became a bit heavier and more frequent. More than likely this was due to my undiagnosed hypothyroidism. At that time I was getting a migraine with almost every period. I would assume that my iron would be lowest at the time of my period. In the fall of 2007 I began to have more and more symptoms of low iron but thought this was due to my hypothyroidism. In reality, my heavier periods were slowly but surely depleting my iron levels. Through the rest of 2007 and first half of 2008 I felt worse and worse and it was during this time I had the most migraines. Finally in June of 2008 I switched to my new endocrinologist and he discovered the iron problem. It's taken over a year to raise my iron level but as it has increased, my migraines have decreased.
My neurologist has told me that migraines can be episodic so it is possible that I will have another bad episode even with my increased iron level. Only time will tell. One thing that this entire phase has taught me is patience. I have some fear that I will suddenly be plunged into another period just as bad as the 2007/2008 time but I also have hope that maintaining my iron level will be the key to healthy living. Chances are it will not be as simple as that but I will definitely pay attention. My neurologist has told me that most times they are unable to find the exact cause of migraines but can only treat the headache. I've always been a person who asks "why". I would love to know why I suddenly started to get all these migraines.
Friday, January 16, 2009
LOOKING AT THE SUN
Yesterday I dropped my son's solar filter for his telescope. After it fell and I realized what I had done I suddenly had a flash of the $98 price tag! My system had that shocked feeling you get when something startles you. Then as my son was looking for something bright to shine through the filter to look for pinholes, I glanced at the sun thinking that was certainly something bright. Now, besides having that shocked feeling I was also seeing spots in front of my eyes. The combination sent me into a panic that I may be getting a migraine. Fortunately, after I closed my eyes for a few minutes my body calmed down and my vision cleared. Phew! Such a nice feeling to NOT get a migraine after worrying that your were getting a migraine!
Thursday, January 15, 2009
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.
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.
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