First of all know that I am not a doctor. The only training I have in the medical field is that I am a Certified Nursing Assistant. I only took that training to be able to care for my parents when they were ill. I won’t pretend to know all there is to know about Graves’ Disease. This is my story about what I went through in the worse years of my Graves’ Disease. It is also about a few things a learned along the way. Things I did to make my life easier. I was so frustrated at times and felt so helpless. I had no control over my emotions. This is the loneliest feeling in the world. You can not explain it to anybody, because you can not understand it yourself.
After I started to feel better I decided to look over the notes in my journal since I first found out I had Graves’ Disease. I cried over what I was reading. I realized after researching and reading post by others with Graves’ Disease that it was important for families and friends to understand how hard this is for us to live with. It was also important for those that have Graves’ Disease to know that they are not alone. That there are others with this disease that feel the lost helpless feeling. People may think we act crazy at times, we may seem to just be complaining and feeling sorry for ourselves. This is not always the case.
I raised five children and held a full time job. I was a member of three organizations at the same time. I lived a very active life and loved it. Than along came Graves’ Disease. Things changed. I changed. I was so tired I could not even do the dishes after dinner. I have been known to take long naps and still able to go to bed early. Yet my sleep was not a good restful sleep. How do you explain that to someone? How could I change so much in such a short time?
This is my journey with Graves’ Disease. Some of you may relate to things that happen to me. Those that don’t have this disease may be able to better understand what it is like for us that do have Graves’ Disease. It may not be the worse disease in the world, but for us it is. It is not easy to try to be and act normal when your insides are upside down and you don’t know what normal is any more.
Graves’ Disease! What is Graves’ Disease? That is the question I asked my doctor when he told me I had Graves’ Disease. He told me it had to do with the thyroid gland in my neck. The thyroid gland was enlarged and releasing to much thyroid hormone. I was hyperthyroid he said. I was diagnosed one week after my birthday. Nice birthday present. I did not have a clue as to what this was. I never heard of Graves’ Disease. Was I going to die? What was going to happen to me? Would I end up in the hospital? I had so many questions and no answers.
I had heard that people with a thyroid condition often got fat, but I was losing weight. Goiters were mentioned briefly. My great grandmother had a goiter. But, that had nothing to do with me, or so I thought at the time. Years later I was to find out how much I had in common with my great grandmother and how much it did have to do with me.
I later found out that Graves’ Disease is an autoimmune disease. I had never heard of that before. I ended up being hyperthyroid for three years. I lost weight, which was a good thing. But, I paid for that dearly. I was depressed, had tremors in my hands, had terrible mood swings and my heart raced like I had been running hard. These are just a few of the many symptoms I had. Than one day I had a goiter. I had noticed a tightness in my throat. It seemed to have grown over night. Or maybe I did not want to acknowledge it. It grew to the size of a tennis ball. That was a wake up call. The first thing that came to mind was my great grandmother and her goiter. I guess that is way I wanted to ignore it. I had always thought she was so mean and she looked like she had a frog neck. After some research I found out Graves’ Disease can be hereditary or it can be caused by stress or even a traumatic event in your life.
It is very hard to write about my grandmother. I think it is important for me to put this down here. Maybe there is someone in your family that you have disregarded because you did not understand them. We need to comfort this if we want to be understood ourselves. I did not think this subject of my grandmother would bother me as much as it did.
After some family research , I found out my grandmother and her two sisters all had Graves’ Disease or TED. We don’t talk much about my grandmother in the family. When she is mentioned by those of us that remember her, it is not good. We do not have very good memories of her. It is very sad.
It must have been terrible for her and my grandfather. When I was young they lived in a large house. They had divided the house in half. She lived in one half and he on the other. We all thought it was because she was so mean. but now I think it was their way of living with her Graves’ Disease.
My grandfather was a quite kind man. I remember him always telling us to be kind and patient with our grandmother. He always took care of her and defended her. He must have loved her very much. He told us she loved us and we did not believe him. I remember them sitting under the tree in the back yard. I also remember her getting mad and telling us to go away. That is when he would sit on the front porch with us and tell us stories and peel oranges for us kids. My grandmother frowned a lot and seemed like such an unhappy person. I guess I did not like her very much or maybe I was afraid of her. Now I am her. Now I know how helpless she must have felt. How misunderstood she was.
I also understand better what my own family has had to deal with. I have tried so hard not to make them feel like my grandmother made me feel. I also am trying to make them understand what this disease has done to me and I don’t always mean to act the way I do. I never want my children or grandchildren to feel the way I did about my grandmother then feel guilty years later for not understanding. I do not want to be remembered as the mean grandmother.
Back to my goiter. My doctor decided to do a biopsy on my goiter. While doing a scan he had found a small black spot as big as a dime. This doctor never fully explained to me what he found. But, because of the results we talked about my taking a radiation pill to kill the thyroid and get rid of the goiter. I decided to take the pill. My mother had radiation treatments for her cancer, but this was different. I was to take a large radiation pill that was delivered to the hospital in a metal container. I was to stay away from people for a few days, especially children and babies.
I could have had surgery to remove the thyroid, but I am not good at having surgery. I get panic attacks when it comes to surgery. Yet I ended up having nine eye surgeries on my eyes later on. There are choices a person can make. This happen to be the choice that I made. Remember you have to choice what is right for you. Only you know what that choice is. Do research and find out what treatments there are and what you will be comfortable doing. There are pros and cons about RAI. It seems to be the first choice of doctors in the United States. I for one am satisfied with the choice I made. It may not be the right choice for you and your situation.
Shortly after taking the RAI I became hypothyroid. This is when the hormones are in short supply. A person may feel sluggish, have a slow heart beat or feel depressed. It may take awhile to get your medicine at the right dose to make you level and feel normal again. Be patient sometimes it takes time. It does not happen over night.
Some say I exchanged one thing for another, I was still sick. Some say I could have taken pills and maybe gone into remission instead of killing a perfectly good thyroid, a part of my body. I felt my thyroid was already damaged and not doing me any good. I most likely had cancer in it. I had to get rid of it. I looked at it this way. When you have a bad appendix you have to have it taken our. It maybe part of your body , but it may also kill you. It would have been nice to try to go into remission. In my case I don’t think that would have been possible.
Those of us with Graves’ Disease are all different. We all have our reason for choosing the path we do with Graves’ Disease. That does not mean it is the wrong one, just different. Remission was just not in the cards for me. Beside, even if I could have taken the pills to go for remission, it still was not the path for me. I am not very good at taking pills at a set time, or dividing my dose as some do. I would have never made it to remission, in my mind. I would have been sicker, just for the fact that I don’t feel like I am disciplined enough to go the pill route. You may be the one that can do that. You may want to try for remission. If that is your choice, by all means try it.
TED AND I
When did it start? I am not really sure. My sight has never been real bad. I have worn glass’s for years with little change. When I was diagnosed with Graves’ Disease, thyroid eye disease was never mentioned. That is not that unusual, as not everyone that gets Graves’ Disease gets thyroid eye disease.
Looking back on things there were signs that I did not pay attention to. I was so concerned with my Graves’ Disease that I did not pay much attention to what was going on with my eyes. My eyes were itchy and watered a lot. I live in a large city and passed this off as the pollution. I barely noticed wearing my sunglass’s more than usual. I wore them in doors when there were bright lights. The sunlight and bright lights actually hurt my eyes. Then I was having a hard time focusing on things. My eyes were crossing a lot and taking longer to get straight. Never knew what “Cock-Eyed” really was till TED came into my life.
One Sunday my husband and I were at our club watching the football game. I could not keep the television in focus for long. I also had double vision. The television was not side by side but one television next to and above the other. It was a strange kind of double vision. I would shake my head and rub my eyes nothing helped for long. It was like my eyes were just floating around. I had only one beer that day. I was actually a little scared. I would close one eye than the other. It was like I looked up with one eye than down with the other. My husband asked me if I was alright and I just told him I didn’t feel right and was a little dizzy.
Things like this happened more and more often. For awhile I passed it off as being extra tired , as I had not been sleeping well for weeks. One day my granddaughter told me one eye looked bigger than the other. By now I had headaches and got use to using one eye at a time. With in two weeks I was at the eye doctors to check my eyes. I thought I just needed new and stronger glass’s. My eye doctor checked my eyes than asked me if I had Graves’ Disease. Well, as a matter of fact I did have Graves’ Disease. More test were done on my eyes and my eyes were measured. They did test that I never had done before. The eye doctor prescribed prism for me. The bad news I had to change them a few months later. My eyes were also now bulging out very noticeably.
I was sent to an Oculoplastic surgeon. Over the next five years I would see him often. In the beginning he told me I would just need to wait till my eyes settled down and went into the cold stage. Than he could tell me what if anything would have to be done with my eyes. He did warn my that I may need to have surgery on my eyes at some time because they had bulged out so much. By the time my eyes got to the cold stage my doctor told me I would need to have decompression eye surgery. I asked him what the heck did that mean? He explained that my optic nerve was in danger of being damaged because of the bulging of my eyes. If it got to bad I could go blind. The fluid around my eye had to be removed. In order to do this he would have to do surgery which was called decompression eye surgery. The bones on the bottom of my eyes had to be broken in order for this to be done. To say I was scared to death is an understatement. As I stated earlier, I get bad panic attacks when it comes to any kind of surgery. And now I was told I needed eye surgery on both eyes. How could I do that? What was I going to do? What I did was cry and ask why me?
Well, I had no choice in the matter. I told myself it was surgery or my sight. That was all there was to it. I chose my sight. Going for that first eye surgery was one of the hardest things I ever had to do in my life. Some people have had more surgery than I have some have needed less and some not at all. So, there we go again. “Different strokes for different folks”. There is also the fact that not everyone that gets Graves’ Disease will get Thyroid eye disease. With Graves’ Disease you may get the itchy watery eyes, but not necessarily the thyroid eye disease. I know there are people that are concerned about this. Just have your eyes checked often.
The best thing you can do is stay away from stress as much as possible and please STOP smoking, if you do. Smoking is not good for your health any way, but if it increases your chances of getting TED, quit. Your eye sight is more important than a cigarette any day. I know I use to be a smoker. I did not want to give up smoking. One day I told myself “Do you want a cigarette or your sight? Is that cigarette more important to me than seeing my kids and grandchildren. NO, NO and NO!!!!
Over the next five years I had upper eye lid retraction. Because of my eyes being so bulgy that after the decompression eye surgery I had a lot of extra skin over my eyes. The upper eye lid was cut and some skin removed. It was than stitched. I had to be awake for the last half of this surgery. I thought I was scared for the decompression. I could not even imagine being awake for an eye surgery. The reason they told me was so they can tell me to move my eye up and down and side ways to see if it was just right. If it was not they could adjust it.
I begged my granddaughter and my husband the night before to not make me do this. How pitiful is that? Well, I did go. The doctor did wake me up half way into the surgery. I have to tell you , I did NOT feel any pain. There was some slight pulling and a feeling like something like a speck of dust was in my eye. The most I felt was brain freeze from the ice pack put on my eyes after the surgery. I am often asked if I saw any blood or anything. The answer is “No”. I just saw gray. Like when you are awake with your eyes closed. Nothing.
For the next upper muscle retraction surgery, I stayed awake and talked to my doctor the whole time. The next two eye surgeries were lower muscle retraction. These two also went off with no pain. I did have some pain after the surgeries, but the pain pills took care of it. I did have some nice black eyes. All and all I think the worst part of these surgeries was the IV. I have even learned to make that easier. If you warm up your arm a bit and flex your arm before it is put in it makes it go in smoother.
After all this I needed cataract eye surgery. I breezed through those two. This was another simple eye surgery that I was terrified of having done. Now that it is all over, I wonder what it was that I was so afraid of. I owe it to a good doctor and his team for one thing. They were very helpful in getting me to relax and reassuring me. Confidence in your doctor is very important.
I have heard stories of a bad experience with doctors. I don’t think there are bad doctors. I do believe that some do not know enough about this disease to properly treat a person with Graves’ Disease or a thyroid disease. In my own experience, I had doctors that did not explain a lot to me. I did not feel like I had the information I needed. I have walked out of a doctors office crying more than once. I did not know what was happening to me. I felt like I was going crazy and I am sure there were people around me that thought the same thing. I was very moody and very depressed. My world was upside down. I had mood swings that I had no control over. To make me even more depressed, I was gaining weight. As my husband told me to eat more because I was eating like a bird, I was gaining. This was not right. Was I really going crazy?
People would tell me just eat less and move more. Well, excuse me. Why did I not think of that? I had cut down on what I ate, I ate healthy and I exercised as much as I could. My legs hurt so bad and I had fallen down more than once. My husband finely got me a cane. There was also the exhaustion. I was so tired all the time. Just doing dish’s was not only painful from standing , but tiring. Walking to the mail box was a chore. I cried so many times because I could not seem to do everyday tasks.
I looked in the mirror one day and just cried. Who was that women looking back at mea? I was not me any more. Who was I? I had to resign my job because I could not drive or walk very far any more. My doctor told me to stop driving in my early years of Graves’ Disease. I had also given up all my organizations that I volunteered in. I hardly ever went out any more. I could not even go to the grocery store. I was getting panic attacks being around too many people. I was afraid of falling, I was embarrassed about my weight and my face was deformed after getting TED.
I was making my husband and my family miserable and I was miserable. My husband had to take over the shopping for me. I did not understand what was happening to me . How could he? But, I was lucky. He hung in there and tried to learn along side me about this disease. It has taken us a long time to understand . I have to say we still don’t understand. The more we learn the more there is to learn.
From researching I found there were many people all over the United States and the world with a thyroid condition, with Graves’ Disease. I now have a very good support group of men and women all over the world that I can talk to and compare research notes with. We all have Graves’ Disease or are a family member who is looking for answers. I have learned a lot over the years with Graves’ Disease. Now I feel I am informed enough to ask my doctor important questions and that I am a working partner in my treatment.
You can live with this disease. But, first and for most, adequate health care is a MUST. Select your doctor with care. Find one that you feel listens to you. One that you can communicate with. One that will take your symptoms and the lab work both into consideration. Sometimes your lab work will tell the doctor you are in the right range and doing good. Yet you know something is wrong and you do not feel good. Your body is telling you something is off. You must work as a team to find the right solution for you. Speak up and tell your doctor what you are feeling. Your doctor is not a mind reader. Also do not wait till the doctor is walking out the door and say “By the way….”. Write down symptoms you are having and tell the doctor as soon as you see him.
Some of have been known to down play our own symptoms. Why do we do this? Maybe we don’t want to be seen as a complainer. This disease has so many twist and turns it is hard to find what is real and what is not. Not everything has to do with Graves’ Disease in our life. But, we still have to cover all the bases. Go over your list before you go to the doctor. I am sure there are things you will take off of it.
If you have a significant other they should be the most important supporter for you. Sometimes you also need the support of others in your situation that understand exactly how you feel. I was lucky enough to find people that understood me. Other people just look at me like I am talking in another language.. By the time I found them I was on my way to leveling out with my Graves’ Disease. They gave me information and support I did not have in my family. My family did give me a lot of support but there were situations with me that they just did not know how to handle. You never have enough support.
Graves’ Disease has been called the silent disease by some. I can understand why. You don’t always look like you are ill. If you don’t have the eye problems it can be even less noticeable to others. Outsiders can not tell you have an illness by just looking at you. People that don’t know you will assume that this is the way you look and act all the time. Some may think you are drunk or on drugs. Some may just think you have a very short fuse. Don’t be surprised if your own family and friends start to think this about you. They may not even think that you are really ill. They will tell you that you just complain to much or that you whine. This happen to me. My falling down at odd times was no help.
It is imperative that your family understands this disease as much as possible. Just as it is important for you to understand it. The more you understand the easier it will be for you and them. Let your family know what is happening with you and how you feel. Sometimes it helps if you work out something to do to avoid a bad situation. If they start to see your mood changing for the worse, maybe they can just make themselves scarce. They can leave you alone while you calm down. Maybe you can just go to your room and lay down for awhile. It is best if they do not even try to argue with you when you have a bad mood swing.
It is not always easy to live with someone with Graves’ Disease. Sometimes we can not even stand ourselves. I remember how scared and isolated I felt. I kept things to myself. I did not want anyone to think I was complaining all the time. I did not want to seem weak. Looking back, I went from being a very confident person to a person afraid to leave the house. One day I woke up and decided I wanted my life back. Hope, confidence and a good sense of humor was my key. I didn’t give up. I took my life back. I have Graves’ Disease….It does not have me.”