My Walk Through the Valley of Graves...So FarApril 28, 2010 at 6:34amIs there anyone else in the world who rejoices over jogging three 15 minute miles in a row? Is there anyone who smiles about taking a single flight of stairs without feeling tired and breathless? How about performing a deep - knee bend to reach something in a bottom cupboard? Just bounce down, and bounce back up again? No struggling to pull yourself up by hanging onto the counter, because your legs are too weak for such a simple task?
I'm thinking that it must look a little odd for me to get all excited over such things. I question whether anyone really wants to hear my strange story of finding out I have a rare immune system malfunction. But because I'm walking through Graves Disease, I feel the need to put the journey in writing the best I can, before I forget what it's been like so far.
I have always been strong. As a child, I liked to climb a favorite old cottonwood tree to the highest fork of branch that would hold me, and just stay up there gently swaying with the breeze. I loved racing and tumbling in the grass with my energetic little dog, milking momma goats and bottle feeding babies. One of my favorite memories is walking in the hills around our place on the ranch where dad worked as a hired hand, where there was a fascinating array of wildflowers blooming in the springtime. We acquired a feisty little horse, which I was determined to ride bareback no matter the fact that she had learned to shy with the intent to rid herself of the rider.
When my family moved to town, our goats moved with us and were lodged down at the end of our street in a small barn there. My sister and I did chores every morning before school, tethering out our goats in the pasture on T - posts with long ropes and their own bucket of water. In the springtime, there were lots of tadpoles growing into frogs in ponds around there. That feisty little horse had a feisty baby foal which turned into a rearing stinker of an adult mare. My little sister and I rode her nearly every day, anyway. We both learned to be expert bareback riders.
We moved again and in high school, I played some tennis and continued to enjoy raising animals. I didn't go through gates, just checked to be sure the fence wasn't higher than waist level on me, then jumped over instead. I took steers in 4-H as well as raising and gentling my first riding horse, of my own. I was third fastest sprinter in my P.E. class, even though some of the other girls were in track.
So yeah, I was active growing up. After marrying the love of my life, I was immediately pregnant a month later, and when my oldest son was still 5, our youngest was born. Then we had 4 little ones, so it was pretty busy around the house. Our ranch was busy too, and my husband often needed a hand with something outside. I had my own projects outdoors as well, usually. And the kids have grown up now. My oldest is turning 20 in May. And yes, the youngest will be 15 in December.
I've been having symptoms of hyperthyroid for a couple of years now, improving in the summertime and getting worse in the winter. It seemed to start with a sinus infection two years ago, that's when I first noticed the shaky feelings and weak legs. Of course I had no idea what was happening at the time. I figured that the sinus infection had caused some kind of minor nerve damage that set some muscle groups to shaking. That was my theory, and I thought it would clear up when I got over the sinus trouble. But for the first time in my life, I was unable to do things, like mount my favorite riding horse. It was a completely foreign feeling, I thought I must be badly out of shape or something. Over the summer it seemed to improve, then that winter get worse again. I was developing quite a goiter as well, and I got some iodine supplements at a health food store to see if that would help make it go away.
In January this year I finally decided to go to the doctor and see if they could find out what was wrong, since I strongly suspected that it was thyroid issues of some sort. That blood test came back extremely high thyroid hormones. We're talking off the charts here. It's supposed to be between 80 - 200, and mine is reading 1341. I was definitely not expecting to find anything seriously wrong, maybe just something I needed to change in my diet. But the doctor thought it was probably Graves, with my test results, and she immediately recommended I plan for an radioactive iodine uptake scan of my thyroid, seeing an endocrinologist, and then radioactive iodine ablation, to get rid of most of the thyroid gland altogether. She said that would be the cheapest route to solving the problem. She told me there was "nothing I could do" that would make a difference. She also wouldn't allow my husband in the room with us while she was talking with me, which my husband thought was crazy! So neither of us liked her very well.
I was shocked and trying to absorb all of the information. I just went home and started to research everything I could find about thyroid problems. I bought all kinds of herbal supplements that might help control all the excess hormones that my thyroid was pouring into my system. I got a book on Graves and read it through, it was not easy reading. Parts of it were technical and very boring, and parts of it were disturbing to me because they applied to my own life now. More than once I had to put it down because I found myself in tears. The herbal supplements didn't help me at all. They didn't help bring down my heart rate, it kept climbing, I couldn't sleep, it was scary. They certainly didn't slow down my digestive system, and I was ravenously hungry all the time. I found an online thyroid board with lots of helpful information, which gave me a sense that I was not alone. Others were dealing with similar symptoms.
For six weeks I tried to find some solution on my own to bring things back under control. Then, deciding I needed some medical help, I went back to that same doctor once more, with my husband this time, to see exactly what she was all about. Because of our tax return last year, we were able to qualify for a grant at the local clinic, so medical care there would be much less expensive, another reason to try once more with that doctor. She told us basically the same as she had told me the first appointment, although it was clear that she had done some additional research herself in the six weeks I was trying to find a self-help type of solution to manage things alone. I had to ask to be put on a beta blocker, to control my runaway heart rate, she did not volunteer that, and she would not even consider starting me on anti-thyroid medications.
A week later an endocrinologist office called, the doctor had referred me finally, and I got an appointment there, with another new doctor nobody has ever heard of. New to the clinic, new to the state, and new to the doctor who referred me. It's also 250 miles away from my home, to Billings, and this is the nearest endo to my area. I also was going to have to wait four weeks for the appointment.
So, I asked around for advice about switching doctors and getting a second opinion. That was a good thing to do. My husband went with me for my first appointment with a highly recommended GP, this time both of us came away feeling like we were getting somewhere. He called the endocrinologist that he consults for any of these types of issues in his patients, did some research, and put me on anti-thyroid meds that same day. Seeing that I was way overeating although maintaining weight and not solving my hunger, so told me to order this book by Joel Fuhrman "Eat to Live" and get on that diet, and sent me for an ultrasound of my thyroid. He also ordered labs the specific tests to see if I actually did have Graves, or if it was some other cause of a hyper functioning thyroid.
At that point I canceled my appointment with the incognito endocrinologist 250 miles away, and I'm never going back to that first doctor, grant or none.
My second visit for evaluation of progress and med adjustment if needed, was Wednesday. The appointment went very well, I'm feeling great, and I'm glad the doctor didn't raise my medication dose. They did new labs which came back looking better. My goiter has really improved already, it is not a huge hard angry thing that it was just a month ago, it is soft and has receded. I don't have shakiness, digestive problems, or weakness in my legs. I've been jogging every other day and am able to keep going steady now, about 4 mph, although I still feel short of breath sometimes. It's sure a nice change.
I am a little worried now, about these thyroid hormones dropping too low, after reading some of the problems people have had with that. It seems that after bringing all the hyper hormones under control, the numbers just keep dropping, because we still have that immune system issue that caused all this. So then we get to add replacement therapy to our thyroid suppression therapy. I wonder if my doctor has ever heard of that. He didn't know that iodine ablation aggravates the eye problems in Graves patients. That is a very common complaint on these thyroid boards that I have seen, and there's quite a bit of research to back it up now. The same thyroid stimulating antibodies that attack the thyroid also attack the optic nerve and tissues surrounding the eye. Radiating the thyroid increases those antibodies action on the eye. All that radiation also causes an increase rate of cancer in thyroid patients.
Guess we will cross that bridge when we come to it.
So, that's my story so far. I think I have learned quite a lot from my experiences up to this point. I'm feeling strong today, so today I will roll up my sleeves and get to work. I'm also feeling blessed with a loving, supportive family, genuine friendships, and life. God knows each of the trials I walk through, then He supplies the strength when I need it. So it really is a matter of just taking one day at a time, and trusting that I can really do all things, through Christ who gives me strength. Philippians 4:13
I'm thinking that it must look a little odd for me to get all excited over such things. I question whether anyone really wants to hear my strange story of finding out I have a rare immune system malfunction. But because I'm walking through Graves Disease, I feel the need to put the journey in writing the best I can, before I forget what it's been like so far.
I have always been strong. As a child, I liked to climb a favorite old cottonwood tree to the highest fork of branch that would hold me, and just stay up there gently swaying with the breeze. I loved racing and tumbling in the grass with my energetic little dog, milking momma goats and bottle feeding babies. One of my favorite memories is walking in the hills around our place on the ranch where dad worked as a hired hand, where there was a fascinating array of wildflowers blooming in the springtime. We acquired a feisty little horse, which I was determined to ride bareback no matter the fact that she had learned to shy with the intent to rid herself of the rider.
When my family moved to town, our goats moved with us and were lodged down at the end of our street in a small barn there. My sister and I did chores every morning before school, tethering out our goats in the pasture on T - posts with long ropes and their own bucket of water. In the springtime, there were lots of tadpoles growing into frogs in ponds around there. That feisty little horse had a feisty baby foal which turned into a rearing stinker of an adult mare. My little sister and I rode her nearly every day, anyway. We both learned to be expert bareback riders.
We moved again and in high school, I played some tennis and continued to enjoy raising animals. I didn't go through gates, just checked to be sure the fence wasn't higher than waist level on me, then jumped over instead. I took steers in 4-H as well as raising and gentling my first riding horse, of my own. I was third fastest sprinter in my P.E. class, even though some of the other girls were in track.
So yeah, I was active growing up. After marrying the love of my life, I was immediately pregnant a month later, and when my oldest son was still 5, our youngest was born. Then we had 4 little ones, so it was pretty busy around the house. Our ranch was busy too, and my husband often needed a hand with something outside. I had my own projects outdoors as well, usually. And the kids have grown up now. My oldest is turning 20 in May. And yes, the youngest will be 15 in December.
I've been having symptoms of hyperthyroid for a couple of years now, improving in the summertime and getting worse in the winter. It seemed to start with a sinus infection two years ago, that's when I first noticed the shaky feelings and weak legs. Of course I had no idea what was happening at the time. I figured that the sinus infection had caused some kind of minor nerve damage that set some muscle groups to shaking. That was my theory, and I thought it would clear up when I got over the sinus trouble. But for the first time in my life, I was unable to do things, like mount my favorite riding horse. It was a completely foreign feeling, I thought I must be badly out of shape or something. Over the summer it seemed to improve, then that winter get worse again. I was developing quite a goiter as well, and I got some iodine supplements at a health food store to see if that would help make it go away.
In January this year I finally decided to go to the doctor and see if they could find out what was wrong, since I strongly suspected that it was thyroid issues of some sort. That blood test came back extremely high thyroid hormones. We're talking off the charts here. It's supposed to be between 80 - 200, and mine is reading 1341. I was definitely not expecting to find anything seriously wrong, maybe just something I needed to change in my diet. But the doctor thought it was probably Graves, with my test results, and she immediately recommended I plan for an radioactive iodine uptake scan of my thyroid, seeing an endocrinologist, and then radioactive iodine ablation, to get rid of most of the thyroid gland altogether. She said that would be the cheapest route to solving the problem. She told me there was "nothing I could do" that would make a difference. She also wouldn't allow my husband in the room with us while she was talking with me, which my husband thought was crazy! So neither of us liked her very well.
I was shocked and trying to absorb all of the information. I just went home and started to research everything I could find about thyroid problems. I bought all kinds of herbal supplements that might help control all the excess hormones that my thyroid was pouring into my system. I got a book on Graves and read it through, it was not easy reading. Parts of it were technical and very boring, and parts of it were disturbing to me because they applied to my own life now. More than once I had to put it down because I found myself in tears. The herbal supplements didn't help me at all. They didn't help bring down my heart rate, it kept climbing, I couldn't sleep, it was scary. They certainly didn't slow down my digestive system, and I was ravenously hungry all the time. I found an online thyroid board with lots of helpful information, which gave me a sense that I was not alone. Others were dealing with similar symptoms.
For six weeks I tried to find some solution on my own to bring things back under control. Then, deciding I needed some medical help, I went back to that same doctor once more, with my husband this time, to see exactly what she was all about. Because of our tax return last year, we were able to qualify for a grant at the local clinic, so medical care there would be much less expensive, another reason to try once more with that doctor. She told us basically the same as she had told me the first appointment, although it was clear that she had done some additional research herself in the six weeks I was trying to find a self-help type of solution to manage things alone. I had to ask to be put on a beta blocker, to control my runaway heart rate, she did not volunteer that, and she would not even consider starting me on anti-thyroid medications.
A week later an endocrinologist office called, the doctor had referred me finally, and I got an appointment there, with another new doctor nobody has ever heard of. New to the clinic, new to the state, and new to the doctor who referred me. It's also 250 miles away from my home, to Billings, and this is the nearest endo to my area. I also was going to have to wait four weeks for the appointment.
So, I asked around for advice about switching doctors and getting a second opinion. That was a good thing to do. My husband went with me for my first appointment with a highly recommended GP, this time both of us came away feeling like we were getting somewhere. He called the endocrinologist that he consults for any of these types of issues in his patients, did some research, and put me on anti-thyroid meds that same day. Seeing that I was way overeating although maintaining weight and not solving my hunger, so told me to order this book by Joel Fuhrman "Eat to Live" and get on that diet, and sent me for an ultrasound of my thyroid. He also ordered labs the specific tests to see if I actually did have Graves, or if it was some other cause of a hyper functioning thyroid.
At that point I canceled my appointment with the incognito endocrinologist 250 miles away, and I'm never going back to that first doctor, grant or none.
My second visit for evaluation of progress and med adjustment if needed, was Wednesday. The appointment went very well, I'm feeling great, and I'm glad the doctor didn't raise my medication dose. They did new labs which came back looking better. My goiter has really improved already, it is not a huge hard angry thing that it was just a month ago, it is soft and has receded. I don't have shakiness, digestive problems, or weakness in my legs. I've been jogging every other day and am able to keep going steady now, about 4 mph, although I still feel short of breath sometimes. It's sure a nice change.
I am a little worried now, about these thyroid hormones dropping too low, after reading some of the problems people have had with that. It seems that after bringing all the hyper hormones under control, the numbers just keep dropping, because we still have that immune system issue that caused all this. So then we get to add replacement therapy to our thyroid suppression therapy. I wonder if my doctor has ever heard of that. He didn't know that iodine ablation aggravates the eye problems in Graves patients. That is a very common complaint on these thyroid boards that I have seen, and there's quite a bit of research to back it up now. The same thyroid stimulating antibodies that attack the thyroid also attack the optic nerve and tissues surrounding the eye. Radiating the thyroid increases those antibodies action on the eye. All that radiation also causes an increase rate of cancer in thyroid patients.
Guess we will cross that bridge when we come to it.
So, that's my story so far. I think I have learned quite a lot from my experiences up to this point. I'm feeling strong today, so today I will roll up my sleeves and get to work. I'm also feeling blessed with a loving, supportive family, genuine friendships, and life. God knows each of the trials I walk through, then He supplies the strength when I need it. So it really is a matter of just taking one day at a time, and trusting that I can really do all things, through Christ who gives me strength. Philippians 4:13