I haven’t had to go Hypo since my first RAI treatment. It was hell. I did take cytomel during my 2 weeks off synthroid, but little did I know if was like taking a shot of espresso every time I popped a pill! No wonder I still couldn’t sleep. I didn’t experience too much of a ‘down’ due to the cytomel. But I felt so out of it and crazy. Between that and the diet, I lost it a few times.
A year later, when Dr. Wolf told me I would be able to take thyrogen injections and stay on my meds, I cried tears of joy! I was so upset/happy/relieved, I couldn’t hold it in. Most of the time I don’t think my doctors understand what I’m going through in dealing with this disease, but at that moment, my face said it all.
I’ve now had thyrogen injections two years in a row. I am able to do the RAI testing with little interruption to my life besides the “stupid diet”.
I cannot imagine not having health insurance and being diagnosed with Thyroid Cancer. These shots alone cost $2,000, not to mention having to get RAI and a whole body scan.
Young adults are the most underinsured group in the US, and cancer is killing us. Can you imagine not being able to afford to get the care you desperately need?
Wednesday, April 21, 2010
The Stupid Diet
What is the Low Iodine “Stupid Diet”
Well, for us lucky enough to prep our bodies for Radioactive Iodine Treatment (RAI), we have to get ready by starving our bodies/thyroid cells of iodine for 2 whole weeks. By doing so, when you take the radioactive iodine pill, your body is ready and willing to accept it. The next day, we go to the nuclear therapy lab and get a whole body scan. If there are any thyroid cells, they will ‘light up’ due to the radioactive iodine. This first dose in not dangerous, nor require seclusion due to being ‘radioactive’. But if you are positive for thyroid activity, you will continue the diet and return to take a higher dose, requiring seclusion.
Why seclusion? Well if you have a healthy thyroid, it can be damaged by radioactive activity, so stay away!
Here are some tips I like to make the Low-Iodine diet bearable. Let’s admit, it sucks. Especially if you hate to cook, like me! I eat out numerous times a week, so this diet sure puts a damper on my culinary enjoyment.
A few things that get me through the day.
Oatmeal with brown sugar and strawberries.
Licorice and Jelly Bellys.
Mike’s Hard Lemonade
Great Harvest Cinnamon Raisin bread, toasted with margarine
Fruit smoothies. Frozen fruit (costco) with egg white protein or Hemp Milk, banana
Pasta with Low Sodium sauce (Whole Foods) and ground beef
Grilled Steak and Sweet Potatoe with brown sugar or roasted potatoes (sprinkled with non-iodized salt, pepper, and olive oil.
Grilled Sweet Corn
I have somehow found a way to actually gain weight during the Low Iodine diet. Must be all the carbs I have discovered, that make me oh so happy.
If you do love to cook, don't forget to download the Low Iodine cookbook from thyca.org!
Well, for us lucky enough to prep our bodies for Radioactive Iodine Treatment (RAI), we have to get ready by starving our bodies/thyroid cells of iodine for 2 whole weeks. By doing so, when you take the radioactive iodine pill, your body is ready and willing to accept it. The next day, we go to the nuclear therapy lab and get a whole body scan. If there are any thyroid cells, they will ‘light up’ due to the radioactive iodine. This first dose in not dangerous, nor require seclusion due to being ‘radioactive’. But if you are positive for thyroid activity, you will continue the diet and return to take a higher dose, requiring seclusion.
Why seclusion? Well if you have a healthy thyroid, it can be damaged by radioactive activity, so stay away!
Here are some tips I like to make the Low-Iodine diet bearable. Let’s admit, it sucks. Especially if you hate to cook, like me! I eat out numerous times a week, so this diet sure puts a damper on my culinary enjoyment.
A few things that get me through the day.
Oatmeal with brown sugar and strawberries.
Licorice and Jelly Bellys.
Mike’s Hard Lemonade
Great Harvest Cinnamon Raisin bread, toasted with margarine
Fruit smoothies. Frozen fruit (costco) with egg white protein or Hemp Milk, banana
Pasta with Low Sodium sauce (Whole Foods) and ground beef
Grilled Steak and Sweet Potatoe with brown sugar or roasted potatoes (sprinkled with non-iodized salt, pepper, and olive oil.
Grilled Sweet Corn
I have somehow found a way to actually gain weight during the Low Iodine diet. Must be all the carbs I have discovered, that make me oh so happy.
If you do love to cook, don't forget to download the Low Iodine cookbook from thyca.org!
Tuesday, April 20, 2010
Stupid Thyroid Cancer
This is my new blog. If you have or had thyroid cancer, I hope I can offer tips and support through my own experiences. As a survivor of thyroid cancer, I found through my experience there is very little information that didn't freak me out or make me feel like I was gonna die. So, as a 33 year old, follicular thyroid cancer survivor of 2.5 years, here is a positive spin on my stupid thyroid cancer!
What happened?
My son Ronan turned 1 year old in June of '07. Now, I love my son, but that year was so hard and is a complete blur. I have exhausted, depressed, a mess.
I worked full time and had a 1 year old active boy. I could barely get my self out of bed every day. Normal? Sure! Until I went to my favorite doctor, Dr. Kara Kassay, cried my eyes out and she told me "something is wrong, this is not normal!" Thank you god for Dr. Kassay, she saved me.
Instead of telling me "you have a one year old and work full time, of course you're tired. Take more vitamins.", She said we'd do some tests. She asked me if my neck had swelled up, if I thought it looked normal. I had no idea. Hello ultrasound and blood tests!
Blood tests showed I was hypothyroid, no wonder I was tired! This causes sleeplessness, general fatique, weight gain, depression, dry skin as well as other symptoms. I got started on Synthroid right away.
Then I had the ultrasound at St. Vincent. I had a lump and needed a biopsy.
Scheduled biopsy, ugh, not fun.
Basically they numb you up, take a needle and jam it into the lump a few times.
Waited and waited for results, finally the doctor called on my birthday right before my birthday massage!
"It's a type of lump we need to remove right away. We can't tell if it's cancer or not, so let's get it out." Enter panic. Great. I start doing hundreds of web searches, trying to research something I know nothing about. Causing massive fear and confusion. Note to self, call doctor instead of searching the web. The people in these chat rooms are much worse off than I am!
Now it's Nov. 5 2007, and I'm going into surgery. They removed the lump in the center of my thyroid. Basically there is a 3% chance it's cancer. Two days later I get the call "it's follicular thyroid cancer, you need to have your entire thyroid removed on Monday". Enter panic again. Brain overwhelmed by fear, depression, cancer?? I'm only 31! I have a baby, husband, family.
Enter loving friends and family. There was a strong outpouring of love and support, while I continued to assure everyone that I was fine. But inside I was a mess. I was far from okay. I have never felt so scared and I didn't show anyone just how fearful I was. Why did I feel like I had to reassure everyone I would be okay? I became the supporter rather than the supported. Didn't want people to worry.
Went back into surgery to remove whole thyroid and felt like I had been run over by a car afterwards.
I was in the hospital for 5 days. Fought low calcium levels, stomach pain and nausea for 4 weeks, maybe longer?
Turns out I had hashimoto's auto immune disorder and my thyroid was totally inflammed. My parathyroid glands, responsible for calcium metabolism, were removed as well because the thyroid had engulfed them.
Went through hell trying to figure out why I felt so gross, nauseaus, sick, tired, and couldn't sleep. Every day was an experiment.
Taking supplemental calcium was making me sick, so take Magnesium, try Tums, take sleeping pills, take melatonin, take this, take that. How do people manage so much medication and supplements?!
Finally confirmed I needed the parathyroid meds and felt better within a few days. This took a month to figure out! What the?
6 months later I felt good. Not yet fantastic or even close to myself, but good, functioning.
What happened?
My son Ronan turned 1 year old in June of '07. Now, I love my son, but that year was so hard and is a complete blur. I have exhausted, depressed, a mess.
I worked full time and had a 1 year old active boy. I could barely get my self out of bed every day. Normal? Sure! Until I went to my favorite doctor, Dr. Kara Kassay, cried my eyes out and she told me "something is wrong, this is not normal!" Thank you god for Dr. Kassay, she saved me.
Instead of telling me "you have a one year old and work full time, of course you're tired. Take more vitamins.", She said we'd do some tests. She asked me if my neck had swelled up, if I thought it looked normal. I had no idea. Hello ultrasound and blood tests!
Blood tests showed I was hypothyroid, no wonder I was tired! This causes sleeplessness, general fatique, weight gain, depression, dry skin as well as other symptoms. I got started on Synthroid right away.
Then I had the ultrasound at St. Vincent. I had a lump and needed a biopsy.
Scheduled biopsy, ugh, not fun.
Basically they numb you up, take a needle and jam it into the lump a few times.
Waited and waited for results, finally the doctor called on my birthday right before my birthday massage!
"It's a type of lump we need to remove right away. We can't tell if it's cancer or not, so let's get it out." Enter panic. Great. I start doing hundreds of web searches, trying to research something I know nothing about. Causing massive fear and confusion. Note to self, call doctor instead of searching the web. The people in these chat rooms are much worse off than I am!
Now it's Nov. 5 2007, and I'm going into surgery. They removed the lump in the center of my thyroid. Basically there is a 3% chance it's cancer. Two days later I get the call "it's follicular thyroid cancer, you need to have your entire thyroid removed on Monday". Enter panic again. Brain overwhelmed by fear, depression, cancer?? I'm only 31! I have a baby, husband, family.
Enter loving friends and family. There was a strong outpouring of love and support, while I continued to assure everyone that I was fine. But inside I was a mess. I was far from okay. I have never felt so scared and I didn't show anyone just how fearful I was. Why did I feel like I had to reassure everyone I would be okay? I became the supporter rather than the supported. Didn't want people to worry.
Went back into surgery to remove whole thyroid and felt like I had been run over by a car afterwards.
I was in the hospital for 5 days. Fought low calcium levels, stomach pain and nausea for 4 weeks, maybe longer?
Turns out I had hashimoto's auto immune disorder and my thyroid was totally inflammed. My parathyroid glands, responsible for calcium metabolism, were removed as well because the thyroid had engulfed them.
Went through hell trying to figure out why I felt so gross, nauseaus, sick, tired, and couldn't sleep. Every day was an experiment.
Taking supplemental calcium was making me sick, so take Magnesium, try Tums, take sleeping pills, take melatonin, take this, take that. How do people manage so much medication and supplements?!
Finally confirmed I needed the parathyroid meds and felt better within a few days. This took a month to figure out! What the?
6 months later I felt good. Not yet fantastic or even close to myself, but good, functioning.
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