I am the kind of person that needs to know why. This is why I have thought a lot about the cause of my migraines. Part of me wants to know so that I can stop them and part of me wants to know just because!
One of my theories is that initially my thyroid started to fail. Then as a result of that, my periods started to come every three weeks and were a bit heavier. That resulted in my body slowly being depleted of iron. The combination of my body being under stress from the thyroid failing as well as the low iron caused my brain to not function properly and also caused my migraines to increase dramatically.
Once I found out that my iron was low I researched what symptoms were caused by low iron . Some of the symptoms that I experienced were tiredness, being out of breath during slight physical exertion, feeling as if I couldn't get a deep enough breath even while sitting, very obvious vertical lines/ridges in my fingernails, night sweats, not sleeping well, lowered mental functioning and heart palpitations. I've learned that heart palpitations are NOT your heart beating irregularly but it IS a sense that you are feeling your heartbeat more strongly. The problems that I had with physical activity became pretty severe. I like to garden and I eventually started to do things while sitting in a lawn chair. Pretty humorous to shovel dirt while sitting! I've written before that going up one flight of stairs required me to spend a few minutes catching my breath. As indicated by the title of this blog, I also experienced headaches, migraines to be exact.
I've read many times that low iron can cause headaches. I've also read occasionally that low iron can cause migraines. I've also read that iron plays many roles in your body. This includes a role in making your brain function properly. Recently doctors have realized that during migraines the neurons in your brain fire out of control. Obviously a sign that your brain is certainly NOT functioning properly!
One of the interesting things is that my iron was not extremely low. Initially when I was diagnosed with low iron the only number that was out of range was my iron saturation. It was 12% and the acceptable range is 15%-50%. I was not considered anemic although those numbers were on the lower end of the range. The ferritin is the number that the doctor seems to watch. My ferritin was 17 and the acceptable range is 10-232. I've heard of many people with a much lower number. My doctor told me that he would like to see this number between 60 and 80. After starting to take iron, in two months my ferritin went up to 40. I was happy but felt that it would continue to rise. Its been six more months and my ferritin has not gone up, it still hovers around 40.
Although a lot of my symptoms have subsided to some degree I am not 100% back to where I was before all this started. Some of my symptoms are still totally with me like the ridges in my fingernails. I look at them all the time and wonder if they are getting just a bit better. Somehow, they seem to be the thing that I watch as my indication that my body still is not right. I feel that when they are gone I will be better. I would love to see my ferritin increase to at least 60. I think I would feel even better than I do now. Its hard to judge just how good I feel because I felt so poorly for so long that I appreciate these recent improvements immensely. I do not remember how normal felt.
My brain and migraines seem to be slowly getting under control with my medication. I worry about when the doctor will try to wean me off the medication. If my ferritin is still on the low side, will the migraines just come back? Since I am not sure how much my low iron played a role in my migraines, I am not sure what will happen.
NOTE: I purposely try not to sound like an expert, I am NOT an expert. I do not want someone to happen upon this and feel as if anything I've written is undisputable fact. I've researched a lot and I try hard to decide if what I've read is true. I also try to understand my own experience. Understanding is the key to getting well.
Thursday, November 19, 2009
Tuesday, April 28, 2009
PARLODEL AND DOSTINEX/CABERGOLINE
When I first found out I had a pituitary tumor way back in 1991 I was told that I could possibly shrink it by taking the medication, Parlodel. I was told that I would need to slowly work my way up to my full dose. This was so many years ago I can't remember what my full dose was. I do remember that when I first started to take it, I woke up with a horrible headache. The endocrinologist that I was seeing back then had a horrible personality. When I called him, upset that the Parlodel had made me feel so awful, he snapped off a reply to my concerns. "Well, I hope that you are able to tolerate it because its the only medicine that is available for you." That was the extent of his comfort and understanding. My body did eventually become used to it and I was able to take it. At the time I did not realize that the congestion in my nose was a side effect of the Parlodel. It did really well at controlling my prolactin level but it did nothing to shrink my tumor. As a matter of fact I eventually had to have the tumor surgically removed because it was growing slightly.
When I went through my first two pregnancies I went off the Parlodel and back on in between pregnancies. I figured out that going off the prolactin gave me the same headache that going on it did.
At the time that I was taking the Parlodel, I felt that this side effect was quite horrible. Then in the future when I went on Cabergoline (Dostinex) I changed my tune.
Fast forward to the 21st century. In 2006 I had found out that I was hypothyroid, I had a mass near my pituitary that could possibly be a tumor and that my prolactin was slightly elevated. I was having more and more migraines and my endocrinologist seemed to believe that it was due to the elevated prolactin. I had opted to forgo medication because my neurosurgeon did not believe that the mass was a tumor and my prolactin was never above 50. I did not like the side effects of Parlodel and was worried that I would have similar side effects from Dostinex. As my migraines increased I finally relented and let my endocrinologist give me a prescription for generic Dostinex (Cabergoline). I started taking it at the end of November 2007. At first it seemed that it made my migraines worse. I had a rough first week but then things started to get better. I figured that the increase in migraines had been due to my body adjusting to the medication. I began to believe that the Dostinex would actually help me. I did have some nasal congestion and it seemed to bother the circulation in my hands and feet but I figured this was a small price to pay if it helped with my migraines.
In February things suddenly went down hill. I got the first of a series of horrible migraines. I was really out of it and my vision began to get whacky. Many days I was unable to leave my bed. At first I did not associate my new troubles with the Dostinex. After all, I had a month and a half where I felt okay. Then I started to remember how my body had reacted when I initially went on the medication. I was now feeling the same way only worse. I then started thinking how the Dostinex has a long half life and that it takes quite a while before it builds up in your blood enough to do its job of lowering your prolactin level. If it takes that long to build up to work its magic, maybe it takes just as long to build up and wreak havoc.
I decided that I would stop taking the Dostinex. When I called the endocrinologist she did not think that the Dostinex could be causing my new problems but I told her it didn't matter. I had started taking the Dostinex to help alleviate my migraines and it certainly wasn't helping!
When I stopped taking the Dostinex there was not an immediate relief from my symptoms. As I said there is a long half life and it stays in your system for quite awhile. Over the following months I did many more things to try to improve my health so I will never be able to say for sure that the Dostinex caused me to get more migraines and have all the brain wackiness but I do believe that its quite possible that it played a role.
So many things have happened to me over the past three years that I may never know why any of them have been happening to me. Maybe some day I will be able to look back on these times and know what has happened but for now I can only record my experience. It has been a conglomeration of symptoms, diagnoses and medication and its possible that the intertwinings will never be unravelled.
When I went through my first two pregnancies I went off the Parlodel and back on in between pregnancies. I figured out that going off the prolactin gave me the same headache that going on it did.
At the time that I was taking the Parlodel, I felt that this side effect was quite horrible. Then in the future when I went on Cabergoline (Dostinex) I changed my tune.
Fast forward to the 21st century. In 2006 I had found out that I was hypothyroid, I had a mass near my pituitary that could possibly be a tumor and that my prolactin was slightly elevated. I was having more and more migraines and my endocrinologist seemed to believe that it was due to the elevated prolactin. I had opted to forgo medication because my neurosurgeon did not believe that the mass was a tumor and my prolactin was never above 50. I did not like the side effects of Parlodel and was worried that I would have similar side effects from Dostinex. As my migraines increased I finally relented and let my endocrinologist give me a prescription for generic Dostinex (Cabergoline). I started taking it at the end of November 2007. At first it seemed that it made my migraines worse. I had a rough first week but then things started to get better. I figured that the increase in migraines had been due to my body adjusting to the medication. I began to believe that the Dostinex would actually help me. I did have some nasal congestion and it seemed to bother the circulation in my hands and feet but I figured this was a small price to pay if it helped with my migraines.
In February things suddenly went down hill. I got the first of a series of horrible migraines. I was really out of it and my vision began to get whacky. Many days I was unable to leave my bed. At first I did not associate my new troubles with the Dostinex. After all, I had a month and a half where I felt okay. Then I started to remember how my body had reacted when I initially went on the medication. I was now feeling the same way only worse. I then started thinking how the Dostinex has a long half life and that it takes quite a while before it builds up in your blood enough to do its job of lowering your prolactin level. If it takes that long to build up to work its magic, maybe it takes just as long to build up and wreak havoc.
I decided that I would stop taking the Dostinex. When I called the endocrinologist she did not think that the Dostinex could be causing my new problems but I told her it didn't matter. I had started taking the Dostinex to help alleviate my migraines and it certainly wasn't helping!
When I stopped taking the Dostinex there was not an immediate relief from my symptoms. As I said there is a long half life and it stays in your system for quite awhile. Over the following months I did many more things to try to improve my health so I will never be able to say for sure that the Dostinex caused me to get more migraines and have all the brain wackiness but I do believe that its quite possible that it played a role.
So many things have happened to me over the past three years that I may never know why any of them have been happening to me. Maybe some day I will be able to look back on these times and know what has happened but for now I can only record my experience. It has been a conglomeration of symptoms, diagnoses and medication and its possible that the intertwinings will never be unravelled.
Friday, April 17, 2009
VISUAL CHANGES
Last night I had a dream that I had a spot in my vision that was speckled. It was sort of like when someone takes a picture and they do some sort of weird computer altering of it and make it into a piece of artwork. I've had other times where I've dreamed of aura and then gotten a migraine in the next day or two. I can't believe that I've actually caused myself to get a migraine but I do believe that my body may be unconsciously aware that I will soon get one.
For me "visual disturbances" have become very prevalent. These visual disturbances do not just occur during an aura but seem to happen to me at any time. I've mentioned before that I get into a "migraine mode" where the frequency of my migraines increases. These are the periods where these visual disturbances come about.
I've suffered two episodes of all out vertigo. One was followed by a migraine and one was not. I've also had many times where I felt somewhat dizzy and off balance. During these times was when I experienced problems with the windshield in my car. If you look through your windshield, you will notice that where the edge of the windshield curves, it makes things look a bit distorted. The average person can see this (I asked my son) but for me during one of my bad times, it becomes very pronounced. It makes me feel slightly dizzy, not enough to affect my driving, but enough to be maddening! Lately, I haven't noticed the edges of the windshield but I have noticed that in general things look different through the windshield than through a more flat side window.
Along with the dizziness there also comes a problem being in a store or crowded place. Its as if my brain can not handle all the stimulation and my perception of things is off. I can only imagine that this is what would be experienced by someone on a drug. I would not say that I am totally out of it, its just that things feel a bit weird. Its more of a visual experience than a psychological one. My brain is thinking properly but its not controlling my vision properly. I don't think that I could ever fully explain this to make someone understand but if someone has had this experience they would light up and say "I know exactly what you mean!!"
I have many things that happen that seem to be related to my retina not working the way it should. Bright lights don't just affect me during a migraine, they affect me during my migraine modes as well. If someone shines a light into my eyes I get upset with them. They don't understand that it takes my eyes especially long to recover from this. While I'm having spots in front of my eyes I'm worried that they won't go away but instead they will be the start of a migraine. I have to say that I never remember one of these times turning into a migraine - I don't think bright lights are a trigger for me. I've had times where I've looked away or closed my eyes for a picture because I know that the flash is going to drive me crazy. I guess in a related vein is my "shadow" experience. If a normal person stares at a picture on the wall for a long time and then moves their gaze to a blank area, they will see an outline of the picture. I've had times where this effect is so strong that I could literally drag an outline image away from something after only looking at it for a spit second.
The last thing that I can think of is that I had a weird problem looking at the computer screen. You know how sometimes when you see a computer screen on TV and its flickering? Well, I would have this effect while looking at my own computer screen. White backgrounds were the worse. At first I just thought that the computer was actually flickering until I asked my family and they didn't know what I was talking about. For awhile this was happening all they time. If I was about to have a migraine it got worse. Then I started to realize that there were other problems with the computer. Depending on the colors of the writing versus the background it would either bother me or feel okay. White writing on a black background is the worse, I refuse to read anything with that combination. I tried to set up this blog using colors that would be "pleasing to the eye".
I've tried to cover all the visual disturbances that I have or have had but I could be missing something. Its hard because most of them have gotten better. I do not have much problem with the windshield in the car. I credit the fact that my dizziness has gotten better. I rarely feel badly in a store. The computer hasn't flickered for months although certain color combinations still bother me. My sensitivity to light is still quite a problem, as is the shadowing problem, although I can no longer drag an image away from something.
In the late winter early spring of 2008 I was having a particularly bad time. I had an entire week where I got one or sometimes two migraines a day. Surrounding that week was a month and a half of rough times. During this time I had ALL the visual disturbances to an extreme. They were there at all times, during a migraine as well as between migraines. You can imagine how whacked out I felt. I cried out of frustration and fear that this was now my life. I couldn't really function at all. I could not traverse life seeing things through my eyes. My body was failing me and my brain was failing me. This was before I had my appointment at the Jefferson Headache Center. It was during this episode that I called to set up and appointment and had to wait for months to get in. Obviously, there are many people who are suffering as well. It was well worth the wait.
My doctor at the headache center put me on the anti seizure medication Lamictal. I credit this medication with helping my brain better control my vision. Of course it has not been a miracle cure but it has helped immensly. I still get some migraines with aura, I still get some visual problems in between migraines but I've come along way from that bad spell in 2008. My quest for good health is not over but I have to remind myself of my progress.
For me "visual disturbances" have become very prevalent. These visual disturbances do not just occur during an aura but seem to happen to me at any time. I've mentioned before that I get into a "migraine mode" where the frequency of my migraines increases. These are the periods where these visual disturbances come about.
I've suffered two episodes of all out vertigo. One was followed by a migraine and one was not. I've also had many times where I felt somewhat dizzy and off balance. During these times was when I experienced problems with the windshield in my car. If you look through your windshield, you will notice that where the edge of the windshield curves, it makes things look a bit distorted. The average person can see this (I asked my son) but for me during one of my bad times, it becomes very pronounced. It makes me feel slightly dizzy, not enough to affect my driving, but enough to be maddening! Lately, I haven't noticed the edges of the windshield but I have noticed that in general things look different through the windshield than through a more flat side window.
Along with the dizziness there also comes a problem being in a store or crowded place. Its as if my brain can not handle all the stimulation and my perception of things is off. I can only imagine that this is what would be experienced by someone on a drug. I would not say that I am totally out of it, its just that things feel a bit weird. Its more of a visual experience than a psychological one. My brain is thinking properly but its not controlling my vision properly. I don't think that I could ever fully explain this to make someone understand but if someone has had this experience they would light up and say "I know exactly what you mean!!"
I have many things that happen that seem to be related to my retina not working the way it should. Bright lights don't just affect me during a migraine, they affect me during my migraine modes as well. If someone shines a light into my eyes I get upset with them. They don't understand that it takes my eyes especially long to recover from this. While I'm having spots in front of my eyes I'm worried that they won't go away but instead they will be the start of a migraine. I have to say that I never remember one of these times turning into a migraine - I don't think bright lights are a trigger for me. I've had times where I've looked away or closed my eyes for a picture because I know that the flash is going to drive me crazy. I guess in a related vein is my "shadow" experience. If a normal person stares at a picture on the wall for a long time and then moves their gaze to a blank area, they will see an outline of the picture. I've had times where this effect is so strong that I could literally drag an outline image away from something after only looking at it for a spit second.
The last thing that I can think of is that I had a weird problem looking at the computer screen. You know how sometimes when you see a computer screen on TV and its flickering? Well, I would have this effect while looking at my own computer screen. White backgrounds were the worse. At first I just thought that the computer was actually flickering until I asked my family and they didn't know what I was talking about. For awhile this was happening all they time. If I was about to have a migraine it got worse. Then I started to realize that there were other problems with the computer. Depending on the colors of the writing versus the background it would either bother me or feel okay. White writing on a black background is the worse, I refuse to read anything with that combination. I tried to set up this blog using colors that would be "pleasing to the eye".
I've tried to cover all the visual disturbances that I have or have had but I could be missing something. Its hard because most of them have gotten better. I do not have much problem with the windshield in the car. I credit the fact that my dizziness has gotten better. I rarely feel badly in a store. The computer hasn't flickered for months although certain color combinations still bother me. My sensitivity to light is still quite a problem, as is the shadowing problem, although I can no longer drag an image away from something.
In the late winter early spring of 2008 I was having a particularly bad time. I had an entire week where I got one or sometimes two migraines a day. Surrounding that week was a month and a half of rough times. During this time I had ALL the visual disturbances to an extreme. They were there at all times, during a migraine as well as between migraines. You can imagine how whacked out I felt. I cried out of frustration and fear that this was now my life. I couldn't really function at all. I could not traverse life seeing things through my eyes. My body was failing me and my brain was failing me. This was before I had my appointment at the Jefferson Headache Center. It was during this episode that I called to set up and appointment and had to wait for months to get in. Obviously, there are many people who are suffering as well. It was well worth the wait.
My doctor at the headache center put me on the anti seizure medication Lamictal. I credit this medication with helping my brain better control my vision. Of course it has not been a miracle cure but it has helped immensly. I still get some migraines with aura, I still get some visual problems in between migraines but I've come along way from that bad spell in 2008. My quest for good health is not over but I have to remind myself of my progress.
Saturday, March 28, 2009
EMOTIONAL SUPPORT FROM OTHERS
Anyone who has a chronic or long term illness eventually discovers that over time friends and family lose their sympathy and compassion. They find it hard to understand how one person can feel badly for so long. I myself have been in situations where it has become tedious and draining to deal with someone who has continuous health problems. I try to remember this when I find that people sometimes say hurtful and uncaring things to me.
I find more and more I am sharing less and less with other people. I think one of the worse feelings for me is when I feel judged. By judged, I mean when people seem to think that in some way I've either caused my problems or made them worse. If only..... If only I would do such and such I would feel better. If only I would eat such and such my body would be healthier. If only I had talked to the doctor in a different way, asked better questions. Then I would get better.
It has become apparent to me that some people think that I have become too preoccupied with my health. On the contrary, I feel as if I am becoming very good at ignoring my issues. Somewhere along the way I decided that its quite possible that I will never truly feel well. Even if I do eventual feel better it will probably be a long time coming. I've already had three years of feeling lousy much of the time. Regardless of the outcome I've decided that I must do the best that I can in living my life to the fullest. Now the only time I hold back in my activities is when I feel that doing too much is going to make things worse in the long run.
My family spent this past Thanksgiving at my sister-in-law's house with my husband's family. On the way there I got a migraine. I took one of my migraine pills, closed my eyes and waited for my aura to pass. As we pulled up to her house they came out to greet us. As I got out of the van I could see but my peripheral vision was still flickering a bit. I was still in that foggy period where my perception of everything is off. Since I've had so many problems my sister-in-law's immediate question was "how have you been feeling". I think my answer was something like "eh, not so great". I decided not to mention the fact that I was currently totally whacked out and so foggy that I couldn't think straight. I'm pretty sure that she could tell that I was not feeling right. I am fortunate that the Treximet that I take relieves the pain that I experience but it still leaves me with the brain fog. It took a while, but once I pulled myself together I sat and played cards with my bored 16 year old son. I chose not to tell the family about my migraine so I wouldn't be the focus of attention. Towards the end of the day I had a private conversation with my other sister-in-law who was concerned about me and I eventually told her that I had been dealing with a migraine.
In some ways I do understand how people could get sick of my health problems....I'M sick of my problems! Then on the other hand, there are days that I desperately need the support. It's usually on those days when I've suddenly gotten another migraine after thinking that I'm finally getting better. Those are my most depressing days. Yesterday was one of those days. As I was writing this post, I got a migraine. I had finally gotten my migraines down to about once a month and this last one had been followed by one that I got a week ago. So much for once a month! I should have known it was coming, I haven't felt right for quite awhile now. It was quite depressing. I'm still not feeling right so I'm expecting that I will probably get more. Sigh.
How did this post get to be about my latest troubles. It was supposed to be about emotional support. I guess its all related because I didn't talk much about this last migraine. I didn't tell anyone the day I had it, not even my husband. It's not that I am trying to keep a secret, its just that it was so upsetting that I didn't even want to talk about it. At least I know that he would support me emotionally. Some people don't even have a spouse that's understanding.
So my wish for everyone is that they get the emotional support that they need.
I find more and more I am sharing less and less with other people. I think one of the worse feelings for me is when I feel judged. By judged, I mean when people seem to think that in some way I've either caused my problems or made them worse. If only..... If only I would do such and such I would feel better. If only I would eat such and such my body would be healthier. If only I had talked to the doctor in a different way, asked better questions. Then I would get better.
It has become apparent to me that some people think that I have become too preoccupied with my health. On the contrary, I feel as if I am becoming very good at ignoring my issues. Somewhere along the way I decided that its quite possible that I will never truly feel well. Even if I do eventual feel better it will probably be a long time coming. I've already had three years of feeling lousy much of the time. Regardless of the outcome I've decided that I must do the best that I can in living my life to the fullest. Now the only time I hold back in my activities is when I feel that doing too much is going to make things worse in the long run.
My family spent this past Thanksgiving at my sister-in-law's house with my husband's family. On the way there I got a migraine. I took one of my migraine pills, closed my eyes and waited for my aura to pass. As we pulled up to her house they came out to greet us. As I got out of the van I could see but my peripheral vision was still flickering a bit. I was still in that foggy period where my perception of everything is off. Since I've had so many problems my sister-in-law's immediate question was "how have you been feeling". I think my answer was something like "eh, not so great". I decided not to mention the fact that I was currently totally whacked out and so foggy that I couldn't think straight. I'm pretty sure that she could tell that I was not feeling right. I am fortunate that the Treximet that I take relieves the pain that I experience but it still leaves me with the brain fog. It took a while, but once I pulled myself together I sat and played cards with my bored 16 year old son. I chose not to tell the family about my migraine so I wouldn't be the focus of attention. Towards the end of the day I had a private conversation with my other sister-in-law who was concerned about me and I eventually told her that I had been dealing with a migraine.
In some ways I do understand how people could get sick of my health problems....I'M sick of my problems! Then on the other hand, there are days that I desperately need the support. It's usually on those days when I've suddenly gotten another migraine after thinking that I'm finally getting better. Those are my most depressing days. Yesterday was one of those days. As I was writing this post, I got a migraine. I had finally gotten my migraines down to about once a month and this last one had been followed by one that I got a week ago. So much for once a month! I should have known it was coming, I haven't felt right for quite awhile now. It was quite depressing. I'm still not feeling right so I'm expecting that I will probably get more. Sigh.
How did this post get to be about my latest troubles. It was supposed to be about emotional support. I guess its all related because I didn't talk much about this last migraine. I didn't tell anyone the day I had it, not even my husband. It's not that I am trying to keep a secret, its just that it was so upsetting that I didn't even want to talk about it. At least I know that he would support me emotionally. Some people don't even have a spouse that's understanding.
So my wish for everyone is that they get the emotional support that they need.
Saturday, February 7, 2009
YOU CANNOT CONVINCE YOUR BODY TO ABORT A MIGRAINE
It almost seems like I've tried everything to control my migraines. Some people believe that stress plays a large roll in migraines. This indicates that there is a psychological factor to them. That maybe, just maybe we have some control over our migraines.
I have never believed that stress, emotions or psychological factors has played any role in my migraines. This did not stop me from trying to control them with the power of suggestion. One day as the telltale sign floated into my vision I got angry! I'm going to WILL this migraine to stop! This is my body and I should be able to control it. I laid down in my bed, closed my eyes and thought about clear vision. This was not happening, I can make my vision clear. If I can just make myself see without hindrance I can stop this migraine. I calmed myself and just focused on stopping this migraine......
Didn't work.
I have never believed that stress, emotions or psychological factors has played any role in my migraines. This did not stop me from trying to control them with the power of suggestion. One day as the telltale sign floated into my vision I got angry! I'm going to WILL this migraine to stop! This is my body and I should be able to control it. I laid down in my bed, closed my eyes and thought about clear vision. This was not happening, I can make my vision clear. If I can just make myself see without hindrance I can stop this migraine. I calmed myself and just focused on stopping this migraine......
Didn't work.
WHAT'S GOING ON RIGHT NOW
I haven't written all the posts that I want to about my experience but the following is a summary of where I am right now.
I went to see the endocrinologist, Dr. Jennings, recently. Basically he just took blood and asked me how I was doing. Of course I knew he was going to ask me this so on the very long trip down there I thought about that question. I do have a problem saying to him "I'm feeling much better" since I think saying that was one of my big problems with my last endocrinologist. She would only hear that part, not the part that I was still not feeling 100%. She would just assume that I was on the right path and that she could send me off and see me in 6 or 9 months. Also, the way things go for me I can be feeling pretty good and then suddenly be thrown into another round of migraines and feeling lousy.
So as I thought about it I realized just how much better I feel. I thought about my first visit to him at the beginning of June and how badly I was feeling then. I thought about how I had to have Tom drive me because I knew that I would not be able to do it on my own. I remember that I was very overwhelmed and had that whacked out feeling that I can only try to describe to you. Its sort of like I'm on some sort of drug or something. I can remember leaving that visit and walking out into the streets of Philadelphia and being in a complete fog. At that visit I had been so overwhelmed that I almost passed out when he took my blood - I have that tendency but now have it under control because I know all I have to do is look away and it doesn't bother me a bit (except that day). I thought I was babbling but Tom said I wasn't. My mental functioning was just so far gone that I had just stopped doing anything complicated.
Back then, anything would overwhelm me. I remember I avoided anything upsetting because I knew my body could not physically handle it. I had decided that I wanted to go back to work when Sarah entered high school and realized that I would not be able to handle that in my current state. The thought of a job interview was petrifying. I couldn't even handle a visit to the mall sometimes. When I was visiting my brother in Georgia we went to the zoo. I almost couldn't make it - as we were walking in I started to feel weird and thought I would get a migraine. I went back to the van, let my body calm down and went in anyways.
I was huffing and puffing so much that I couldn't go up the stairs in our house even one time without being out of breath. I remember once I walked up and tried to talk to Sarah at the top and had to wait because I couldn't speak...that's pretty bad. Obviously, physical activity was out of the question.
There are many little things that have gotten better as well. The computer screen has not been flickering for about a month now (only flickered for me...I've asked others "is it flickering"). Another thing: I'm not sure what they are called but when you stare at something for a long time and then look away a rough outline/image seems to linger in your vision. That would happen to me after looking at things for a couple of seconds. At my worst I could visually drag a "ghost" of something away from it. It's is much better but not 100%. Back then I seemed to have so many weird things like that happening to me that I couldn't even tell the doctors all the things without sounding crazy or taking up hours of their time.
November of 2005 was probably the last time I felt normal.
So I decided to tell the doctor how I'm looking at things in the big picture. I've been going to him for about 8 months and over that time I am much better but the progress is slow going. I told him that I'm in the phase where I realize I am better but extremely leery that I could get worse again. I told him back in June I was looking for a magic pill that would make me better in 2 weeks. Now I am realizing that its not just one thing that is making me better. It's all the things I'm doing. its switching to Armour Thyroid, taking the iron and taking the migraine medication. He said, even if you find a magic pill in endocrinology, it takes weeks to work. He did not throw me out into the world and deem me cured. He wants to see me in 4 months which is good. My old doctor would have probably said 9 months. I was constantly calling her to move my appointments up and ended up seeing her every two months - still without ever really getting better.
So as I was leaving he said "it was good to see you". To which I answered "it was good to see YOU". To which he answered "Its good to see you feeling so much better!" I started to feel like we were going back and forth with "I love you"..."I love you more!"...."No, I love YOU more!" HA HA HA!! Seriously, I do really like him. It has taken me awhile to really feel good about him just because I am now so jaded and cynical. He's just such a calming kind of guy. He never acts rushed like he's behind schedule and trying to get on to the next patient. He acts like you are the only patient he needs to see that day. At the end he walks you out and actually makes your next appointment himself. This takes only a minute but you just don't see doctors doing that. Most importantly, he's making me better and he cares about making me better.
So since I am feeling better and better I am able to look at things differently. I've decided to embrace the fact that today I feel pretty good and I'm trying not to worry about how I'll feel tomorrow. Now I sound like an alcoholic on the 12 step program. One Day At A Time. I told the doctor that my plan is to see if I go a couple months without migraines and slowly start to add in physical activity. I will probably start to walk a bit even now. At least that way I won't be starting at zero. I've done a couple physical things - hiking while geocaching and shoveling snow off the lake while ice skating. I did not get a migraine either time so that made me hopeful.
So that is where I am at right now. More hopeful than I've been in a long time. However, I'm still not sure if I will ever be physically back to what I was in 2005. I'm not that hopeful but still emotionally feeling pretty good.
I went to see the endocrinologist, Dr. Jennings, recently. Basically he just took blood and asked me how I was doing. Of course I knew he was going to ask me this so on the very long trip down there I thought about that question. I do have a problem saying to him "I'm feeling much better" since I think saying that was one of my big problems with my last endocrinologist. She would only hear that part, not the part that I was still not feeling 100%. She would just assume that I was on the right path and that she could send me off and see me in 6 or 9 months. Also, the way things go for me I can be feeling pretty good and then suddenly be thrown into another round of migraines and feeling lousy.
So as I thought about it I realized just how much better I feel. I thought about my first visit to him at the beginning of June and how badly I was feeling then. I thought about how I had to have Tom drive me because I knew that I would not be able to do it on my own. I remember that I was very overwhelmed and had that whacked out feeling that I can only try to describe to you. Its sort of like I'm on some sort of drug or something. I can remember leaving that visit and walking out into the streets of Philadelphia and being in a complete fog. At that visit I had been so overwhelmed that I almost passed out when he took my blood - I have that tendency but now have it under control because I know all I have to do is look away and it doesn't bother me a bit (except that day). I thought I was babbling but Tom said I wasn't. My mental functioning was just so far gone that I had just stopped doing anything complicated.
Back then, anything would overwhelm me. I remember I avoided anything upsetting because I knew my body could not physically handle it. I had decided that I wanted to go back to work when Sarah entered high school and realized that I would not be able to handle that in my current state. The thought of a job interview was petrifying. I couldn't even handle a visit to the mall sometimes. When I was visiting my brother in Georgia we went to the zoo. I almost couldn't make it - as we were walking in I started to feel weird and thought I would get a migraine. I went back to the van, let my body calm down and went in anyways.
I was huffing and puffing so much that I couldn't go up the stairs in our house even one time without being out of breath. I remember once I walked up and tried to talk to Sarah at the top and had to wait because I couldn't speak...that's pretty bad. Obviously, physical activity was out of the question.
There are many little things that have gotten better as well. The computer screen has not been flickering for about a month now (only flickered for me...I've asked others "is it flickering"). Another thing: I'm not sure what they are called but when you stare at something for a long time and then look away a rough outline/image seems to linger in your vision. That would happen to me after looking at things for a couple of seconds. At my worst I could visually drag a "ghost" of something away from it. It's is much better but not 100%. Back then I seemed to have so many weird things like that happening to me that I couldn't even tell the doctors all the things without sounding crazy or taking up hours of their time.
November of 2005 was probably the last time I felt normal.
So I decided to tell the doctor how I'm looking at things in the big picture. I've been going to him for about 8 months and over that time I am much better but the progress is slow going. I told him that I'm in the phase where I realize I am better but extremely leery that I could get worse again. I told him back in June I was looking for a magic pill that would make me better in 2 weeks. Now I am realizing that its not just one thing that is making me better. It's all the things I'm doing. its switching to Armour Thyroid, taking the iron and taking the migraine medication. He said, even if you find a magic pill in endocrinology, it takes weeks to work. He did not throw me out into the world and deem me cured. He wants to see me in 4 months which is good. My old doctor would have probably said 9 months. I was constantly calling her to move my appointments up and ended up seeing her every two months - still without ever really getting better.
So as I was leaving he said "it was good to see you". To which I answered "it was good to see YOU". To which he answered "Its good to see you feeling so much better!" I started to feel like we were going back and forth with "I love you"..."I love you more!"...."No, I love YOU more!" HA HA HA!! Seriously, I do really like him. It has taken me awhile to really feel good about him just because I am now so jaded and cynical. He's just such a calming kind of guy. He never acts rushed like he's behind schedule and trying to get on to the next patient. He acts like you are the only patient he needs to see that day. At the end he walks you out and actually makes your next appointment himself. This takes only a minute but you just don't see doctors doing that. Most importantly, he's making me better and he cares about making me better.
So since I am feeling better and better I am able to look at things differently. I've decided to embrace the fact that today I feel pretty good and I'm trying not to worry about how I'll feel tomorrow. Now I sound like an alcoholic on the 12 step program. One Day At A Time. I told the doctor that my plan is to see if I go a couple months without migraines and slowly start to add in physical activity. I will probably start to walk a bit even now. At least that way I won't be starting at zero. I've done a couple physical things - hiking while geocaching and shoveling snow off the lake while ice skating. I did not get a migraine either time so that made me hopeful.
So that is where I am at right now. More hopeful than I've been in a long time. However, I'm still not sure if I will ever be physically back to what I was in 2005. I'm not that hopeful but still emotionally feeling pretty good.
Tuesday, February 3, 2009
MY KIDS GET MIGRAINES
I am sad to say that I have passed on the curse of migraines to all three of my kids. My oldest, Thomas, was the first to get a migraine. I think he was in 4th grade. Its sort of funny because when he told me he had a really bad headache, I suspected right away it was a migraine. He had told me many times before that he had a headache or didn't feel well but that time it was different. I guess maybe the suddenness of it. There was no lead up to it. He just suddenly had a really bad headache. Then I asked him if he had been seeing funny before he got the headache and he told me yes. He had been watching TV and it was hard to see part of the screen.
My youngest, Sarah, was the next to get a migraine. She was in 3rd grade. I went to pick her up from school and she came out complaining that she had suddenly gotten a really bad headache. Again, I just knew. I asked about her vision and she said yes, she had trouble seeing the music in orchestra.
My middle child, Erin, took awhile longer to get a migraine. She was in 8th grade when I got a call from the nurse. Erin knew it was a migraine because she also had the visual aura. She said she had all sorts of "pretty" and colorful lights. Pretty until they were followed by the pain!
I don't know if I would be able to tell if they were migraines if they hadn't gotten the visual aura. Thomas and Sarah will throw up with their migraines. Erin has only gotten two migraines and she felt nauseous with them but did not throw up. So far they only get them infrequently and it helps that we make sure that they get enough rest and eat well.
I feel very bad that I have passed this on to them and I often wonder if they will continue to follow in my footsteps. Will they end up in the same sort of nightmare as me later on in their life? If that happens to any of them, maybe they will be able to learn from my experience and it will help them in dealing with this disease.
My youngest, Sarah, was the next to get a migraine. She was in 3rd grade. I went to pick her up from school and she came out complaining that she had suddenly gotten a really bad headache. Again, I just knew. I asked about her vision and she said yes, she had trouble seeing the music in orchestra.
My middle child, Erin, took awhile longer to get a migraine. She was in 8th grade when I got a call from the nurse. Erin knew it was a migraine because she also had the visual aura. She said she had all sorts of "pretty" and colorful lights. Pretty until they were followed by the pain!
I don't know if I would be able to tell if they were migraines if they hadn't gotten the visual aura. Thomas and Sarah will throw up with their migraines. Erin has only gotten two migraines and she felt nauseous with them but did not throw up. So far they only get them infrequently and it helps that we make sure that they get enough rest and eat well.
I feel very bad that I have passed this on to them and I often wonder if they will continue to follow in my footsteps. Will they end up in the same sort of nightmare as me later on in their life? If that happens to any of them, maybe they will be able to learn from my experience and it will help them in dealing with this disease.
ANATOMY OF MY MIGRAINES
When I first started getting migraines they were very predictable. I would only get them once a year or once every two years. I would start out be having trouble with my vision. It would appear as if there were wavy lines that looked like heat waves in front of my vision. This would last approximately 45 minutes. During this time I would not experience any pain. After my vision cleared, the headache would begin. It would build slowly until it was really painful. I'm not sure if it hurt more on one side than the other because it was so painful I could not tell. Not long after the headache pain peaked I would feel nauseous. Nine times out of ten I would throw up. It was one of those things that I wouldn't want to do because the violence of it would initially make me feel worse but then when I was done I felt just a bit of relief.
I would have an extreme sensitivity to light so as soon as I knew a headache was coming I would get blankets to cover my windows. I would also be sensitive to sound so I would have the family walk on eggshells throughout the house. I swear I could hear every footstep even when they quietly walked across the floor downstairs. My skin also seemed to be sensitive. It would feel as if it had been rubbed raw. I would get into the loosest pajamas I could find. Laying my head on the pillow, it felt as if someone was pushing it down really hard.
I would carefully roll around for awhile trying to find the least painful position. Then I would pray that I would fall asleep. This would usually take at least an hour. I would sleep between two and four hours and wake up with a migraine hangover. You know, like a Mack truck hit you! I would still be happy though. Feeling like that was so much better than that god awful pain.
For me the entire migraine experience is surreal. In recent years as I've gotten more and more migraines the weirdness has just increased. Actually the weirdness has become more of a problem for me than the pain.
In 2006 my migraines started coming every three weeks with the onset of my periods. Since they had been so infrequent before this was alarming to me. I know I wouldn't get much sympathy from people who get migraines every day but for me it was a big problem. Initially they had most of the same characteristics of my previous migraines. The only thing that was different was that the visual aura now was a circular pattern of back and forth lines. It now had colors to it. It would start out really small and slowly expand until it was just a waviness on the edge of my vision. It would be gone in about 20 minutes. Over the next couple of years the rest of the characteristics also changed .
After awhile the migraines did not seem to be totally related to my periods. They would mostly come in bunches where I would have a rough two weeks or so. I've been told by my neurologist that migraines with aura tend to be this way. When I'm have an episode like this, I say I'm in migraine mode. I began to feel weird at all times during my migraine episodes, even on the days that I didn't get a headache. All sorts of weird things began to happen. I began to have funny visual changes. My mental capacity dramatically declined. At the peak of my problems I was in bed for a week with one or two migraines everyday. I was in such a fog that it was as if I had taken some sort of drug and was having a bad trip. Eventually some of these things were happening to me all the time, even when I wasn't in migraine mode. It was depressing to me that this was what my life had become. I was no longer the same person I had always been. It consumed my life.
Eventually, I discovered that most of the time I would not get the horrible pain after my aura. This may seem like a blessing to some but the fact that I had so many other problems that were affecting my everyday functioning it didn't really matter. If I didn't have enough brain to carry on with life, it didn't matter that I wasn't feeling pain.
When it got to this point I realized that my current doctor was not making me well. I decided to switch endocrinologists (I was being treated for under active thyroid and thought the migraines were related to that) and I also went to a headache center and saw a neurologist. It seems as if I am finally on the mend after so many years of getting worse and worse. I am still feeling leery that this is actually a new beginning for me. I live my life feeling as if any moment I could be thrown back under the bus. Am I really getting better? Only time will tell.
I would have an extreme sensitivity to light so as soon as I knew a headache was coming I would get blankets to cover my windows. I would also be sensitive to sound so I would have the family walk on eggshells throughout the house. I swear I could hear every footstep even when they quietly walked across the floor downstairs. My skin also seemed to be sensitive. It would feel as if it had been rubbed raw. I would get into the loosest pajamas I could find. Laying my head on the pillow, it felt as if someone was pushing it down really hard.
I would carefully roll around for awhile trying to find the least painful position. Then I would pray that I would fall asleep. This would usually take at least an hour. I would sleep between two and four hours and wake up with a migraine hangover. You know, like a Mack truck hit you! I would still be happy though. Feeling like that was so much better than that god awful pain.
For me the entire migraine experience is surreal. In recent years as I've gotten more and more migraines the weirdness has just increased. Actually the weirdness has become more of a problem for me than the pain.
In 2006 my migraines started coming every three weeks with the onset of my periods. Since they had been so infrequent before this was alarming to me. I know I wouldn't get much sympathy from people who get migraines every day but for me it was a big problem. Initially they had most of the same characteristics of my previous migraines. The only thing that was different was that the visual aura now was a circular pattern of back and forth lines. It now had colors to it. It would start out really small and slowly expand until it was just a waviness on the edge of my vision. It would be gone in about 20 minutes. Over the next couple of years the rest of the characteristics also changed .
After awhile the migraines did not seem to be totally related to my periods. They would mostly come in bunches where I would have a rough two weeks or so. I've been told by my neurologist that migraines with aura tend to be this way. When I'm have an episode like this, I say I'm in migraine mode. I began to feel weird at all times during my migraine episodes, even on the days that I didn't get a headache. All sorts of weird things began to happen. I began to have funny visual changes. My mental capacity dramatically declined. At the peak of my problems I was in bed for a week with one or two migraines everyday. I was in such a fog that it was as if I had taken some sort of drug and was having a bad trip. Eventually some of these things were happening to me all the time, even when I wasn't in migraine mode. It was depressing to me that this was what my life had become. I was no longer the same person I had always been. It consumed my life.
Eventually, I discovered that most of the time I would not get the horrible pain after my aura. This may seem like a blessing to some but the fact that I had so many other problems that were affecting my everyday functioning it didn't really matter. If I didn't have enough brain to carry on with life, it didn't matter that I wasn't feeling pain.
When it got to this point I realized that my current doctor was not making me well. I decided to switch endocrinologists (I was being treated for under active thyroid and thought the migraines were related to that) and I also went to a headache center and saw a neurologist. It seems as if I am finally on the mend after so many years of getting worse and worse. I am still feeling leery that this is actually a new beginning for me. I live my life feeling as if any moment I could be thrown back under the bus. Am I really getting better? Only time will tell.
Tuesday, January 20, 2009
THE HISTORY OF HOW MY MIGRAINES HAVE CHANGED OVER THE YEARS
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.
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.
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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