Getting on my thyroid soapbox
Aug. 8th, 2008 09:07 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
grnvixenSo a friend was recently diagnosed with thyroid cancer.
Old rennies on my friends list may remember him, the grumpy dwarf (GD) who worked in the shop I had at KCRF waaaay back when rocks were soft. GD had a rough time earlier this year with a different type of cancer so while all of that is going better than originally predicted, getting this second cancer diagnosis was a real kick in the head. GD is not one for a lot of fuss and was pretty grumpy when I talked to him last night. Someone had sent out an email so the family was fielding a lot of calls. I've beentheredonethat with thyroid cancer though so was able to answer some of the questions that were popping up and, hopefully, will help him hang in there.
Since I have found myself getting on this soapbox fairly often, reminding friends to be sure and get a TSH test with checkups, not to ignore symptoms, etc., I am going to go ahead and put it all down here in my LJ once and for all. I'll cut for length though....
First of all, while yes this is the dreaded 'C' word, if caught early thyroid cancer is one of the most treatable cancers. Yeah, you are on a medication the rest of your life but it is cheap and no side effects. The benefits of a normal immune system are worth it. I used to get 4-5 bad colds a year, duration a month +, now I know what a 'normal' cold is really like and a bad one lasts a week at the most.
The problem with catching TC early though is that the symptoms that signal possible TC, ie; hypothyroidism, work against helping one to be pro-active in their own diagnosis and treatment. You are tired (hyperthryoidism too). I'm not talking about the type of tired where you can take a nap or a lazy afternoon to get recharged, I'm talking about the type of tired that drags you down and keeps dragging you down. The best way I have found to describe it is that when you drop a towel you are to tired to pick it up, a week later the towel is still on the floor because you are to tired to even care about it anymore. I was comparing treatment experiences with a breast cancer survivor once and we decided it is very like being on chemo. That commercial with the grandfather who has the perfect pic of the grandkids on the porch eating ice cream, but is to tired to go into the house to get the camera, describes it pretty well too.
And dealing with this type of 'tired' is frustrating and depressing. All you know is that you are tired, everyone gets tired, nothing to really go to the doctor about. BUT, if you have a 'tired' like these, you need to go! Not just to get the thyroid checked but this is not normal. Talk, push your doc to address this. Again, hard to sometimes get yourself to do when you are this tired.
Sooo, when you do go, or when you have a regular checkup, always get a THS test, and get THE NUMBERS, don't just let them tell you if it is normal or not.
Part of the reason my thryoid problem was missed for so long (pretty much since puberty) is that the old standard test, called a PSI, measured the amount of thyroid in your system. Mine was always within the 'normal' range. About 10-15 years ago the TSH test became the new standard however. TSH stands for Thyroid Stimulating Hormone, or in otherwords it is measuring the hormone your body is putting out saying it needs thyroid. A high TSH means your body is not getting/producing enough thyroid. You guessed it, when I finally had the test mine was pretty far up there :). They also detected nodules and I was scheduled for surgery. No talk of a biopsy so I should have known what was coming but oh well.
In most cases, if TC is detected the first step is to completely removed the thyroid and (usually) the parathyroid glands. TC cancer does not seem to go for any other types of cell until much much further along so the goal becomes getting rid of of all the thyroid cells in the body. This means surgery and then ablatement.
Ahhh, ablatement, how many folks can say "why yes, I have been radioactive, why do you ask?" To complete the removal of all thyroid cells in your body the usual treatment is to attack them with radioactive iodine 131. Fans of CSI may remember this ingredient from an early episode. In that one the dosage was fatal. In correct quantites the RI131 finds and gloms onto the thyroid cells in your body and destroys them. The dosage usually required for this will not do any longterm damage and flushes out fairly quickly but while it is in your body you are radioactive.
I have heard that sometimes this can be handled with low dosages and you can stay at home. I required a large dose (151 milicures) so I was hospitalized. During my treatment I was in my own room, all to myself, and felt like a cross between a leper and a puppy. Very few folks were allowed into the room and when they did come in they put covers on their shoes. GP could visit me for just 20 minutes a day, standing in the doorway. Everything I could touch was covered in paper or plastic, including the floor. I had my own trash cart and all my meals were on disposable plates, etc. I was told I could bring things into the room with me but not to expect to take them back home. Once a day someone pointed a geiger counter at me and said "nope, not yet". I think I was there for 3 days and two nights, altho the first night home it was recommended that GP and the cats sleep somewhere other than with me.
The up side of this is that, this was it, I had scans later to check that all the thyroid cells were gone but no more treatment. There had been some nauseau but nothing like some chemo treatments I have seen friends endure. For a cancer treatment, not bad. And once this was over, I could start the synthroid and finally find out what a normal thyroid level was. I still remember getting a little high that first week with a new prescription :).
Took two years to get there though and I became a familiar customer at the lab for bloodwork. Usual time between tests was 6 weeks, then tweak the dosage. Not surprising, I ended up on the high end. This is also when I learned to ask for the actual test numbers. The 'normal' range for TSH is 4 - 6. I can tell a difference though in even one point so I like to stay as close to 1 as possible. Also, some studies are starting to indicate that even 6 is to high and should be classified as hypothyroid but not all Docs are on board with that yet. Bottomline; get your numbers and if you are still feeling tired push your doc to tweak your prescription. It is a cheap test, and cheap drug, should not be a big deal.
As I said, it took two years to find my best dose and, especially in the first couple of months after the ablatement, I was still dealing with 'tired' issues. With chemo you have something to point to as a cause, with the thyroid, not so much. Makes it hard to explain to an employer and co-workers why you are to tired to come to work, or make it through a whole day. You had your diagnosis right? You are on your medication right? So why..... I had a supervisor I could be frank with and that helped. If you have a co-worker going through this try and be understanding, they aren't being lazy, they just need to get through this and it will get better.
That was also what I could tell GD; it *will* get better. Hang in there, try not to let the 'tired' drag you down. It Will Get Better. But first you are going to glow in the dark :).
Whew, long post for me but very cathartic.
Cancer aside, any thyroid problem can mess with your metabolism and immune system (think arthritis, etc.). For whatever reason (my Endocrine Doc was inclined to suspect nucelar testing in the 50s) we are seeing a lot of health issues involving thyroid today. My mother and both my sisters have varying degrees of thyroid slowdown/failure and are on synthroid. No cancer though. And while thyroid may not be the root of a health issue it is an easy one to eliminate so, always get the TSH test.
Bottom line; get regular checkups and always get a THS test, then ask for the numbers, don't settle for 'oh, it's normal'.
Old rennies on my friends list may remember him, the grumpy dwarf (GD) who worked in the shop I had at KCRF waaaay back when rocks were soft. GD had a rough time earlier this year with a different type of cancer so while all of that is going better than originally predicted, getting this second cancer diagnosis was a real kick in the head. GD is not one for a lot of fuss and was pretty grumpy when I talked to him last night. Someone had sent out an email so the family was fielding a lot of calls. I've beentheredonethat with thyroid cancer though so was able to answer some of the questions that were popping up and, hopefully, will help him hang in there.
Since I have found myself getting on this soapbox fairly often, reminding friends to be sure and get a TSH test with checkups, not to ignore symptoms, etc., I am going to go ahead and put it all down here in my LJ once and for all. I'll cut for length though....
First of all, while yes this is the dreaded 'C' word, if caught early thyroid cancer is one of the most treatable cancers. Yeah, you are on a medication the rest of your life but it is cheap and no side effects. The benefits of a normal immune system are worth it. I used to get 4-5 bad colds a year, duration a month +, now I know what a 'normal' cold is really like and a bad one lasts a week at the most.
The problem with catching TC early though is that the symptoms that signal possible TC, ie; hypothyroidism, work against helping one to be pro-active in their own diagnosis and treatment. You are tired (hyperthryoidism too). I'm not talking about the type of tired where you can take a nap or a lazy afternoon to get recharged, I'm talking about the type of tired that drags you down and keeps dragging you down. The best way I have found to describe it is that when you drop a towel you are to tired to pick it up, a week later the towel is still on the floor because you are to tired to even care about it anymore. I was comparing treatment experiences with a breast cancer survivor once and we decided it is very like being on chemo. That commercial with the grandfather who has the perfect pic of the grandkids on the porch eating ice cream, but is to tired to go into the house to get the camera, describes it pretty well too.
And dealing with this type of 'tired' is frustrating and depressing. All you know is that you are tired, everyone gets tired, nothing to really go to the doctor about. BUT, if you have a 'tired' like these, you need to go! Not just to get the thyroid checked but this is not normal. Talk, push your doc to address this. Again, hard to sometimes get yourself to do when you are this tired.
Sooo, when you do go, or when you have a regular checkup, always get a THS test, and get THE NUMBERS, don't just let them tell you if it is normal or not.
Part of the reason my thryoid problem was missed for so long (pretty much since puberty) is that the old standard test, called a PSI, measured the amount of thyroid in your system. Mine was always within the 'normal' range. About 10-15 years ago the TSH test became the new standard however. TSH stands for Thyroid Stimulating Hormone, or in otherwords it is measuring the hormone your body is putting out saying it needs thyroid. A high TSH means your body is not getting/producing enough thyroid. You guessed it, when I finally had the test mine was pretty far up there :). They also detected nodules and I was scheduled for surgery. No talk of a biopsy so I should have known what was coming but oh well.
In most cases, if TC is detected the first step is to completely removed the thyroid and (usually) the parathyroid glands. TC cancer does not seem to go for any other types of cell until much much further along so the goal becomes getting rid of of all the thyroid cells in the body. This means surgery and then ablatement.
Ahhh, ablatement, how many folks can say "why yes, I have been radioactive, why do you ask?" To complete the removal of all thyroid cells in your body the usual treatment is to attack them with radioactive iodine 131. Fans of CSI may remember this ingredient from an early episode. In that one the dosage was fatal. In correct quantites the RI131 finds and gloms onto the thyroid cells in your body and destroys them. The dosage usually required for this will not do any longterm damage and flushes out fairly quickly but while it is in your body you are radioactive.
I have heard that sometimes this can be handled with low dosages and you can stay at home. I required a large dose (151 milicures) so I was hospitalized. During my treatment I was in my own room, all to myself, and felt like a cross between a leper and a puppy. Very few folks were allowed into the room and when they did come in they put covers on their shoes. GP could visit me for just 20 minutes a day, standing in the doorway. Everything I could touch was covered in paper or plastic, including the floor. I had my own trash cart and all my meals were on disposable plates, etc. I was told I could bring things into the room with me but not to expect to take them back home. Once a day someone pointed a geiger counter at me and said "nope, not yet". I think I was there for 3 days and two nights, altho the first night home it was recommended that GP and the cats sleep somewhere other than with me.
The up side of this is that, this was it, I had scans later to check that all the thyroid cells were gone but no more treatment. There had been some nauseau but nothing like some chemo treatments I have seen friends endure. For a cancer treatment, not bad. And once this was over, I could start the synthroid and finally find out what a normal thyroid level was. I still remember getting a little high that first week with a new prescription :).
Took two years to get there though and I became a familiar customer at the lab for bloodwork. Usual time between tests was 6 weeks, then tweak the dosage. Not surprising, I ended up on the high end. This is also when I learned to ask for the actual test numbers. The 'normal' range for TSH is 4 - 6. I can tell a difference though in even one point so I like to stay as close to 1 as possible. Also, some studies are starting to indicate that even 6 is to high and should be classified as hypothyroid but not all Docs are on board with that yet. Bottomline; get your numbers and if you are still feeling tired push your doc to tweak your prescription. It is a cheap test, and cheap drug, should not be a big deal.
As I said, it took two years to find my best dose and, especially in the first couple of months after the ablatement, I was still dealing with 'tired' issues. With chemo you have something to point to as a cause, with the thyroid, not so much. Makes it hard to explain to an employer and co-workers why you are to tired to come to work, or make it through a whole day. You had your diagnosis right? You are on your medication right? So why..... I had a supervisor I could be frank with and that helped. If you have a co-worker going through this try and be understanding, they aren't being lazy, they just need to get through this and it will get better.
That was also what I could tell GD; it *will* get better. Hang in there, try not to let the 'tired' drag you down. It Will Get Better. But first you are going to glow in the dark :).
Whew, long post for me but very cathartic.
Cancer aside, any thyroid problem can mess with your metabolism and immune system (think arthritis, etc.). For whatever reason (my Endocrine Doc was inclined to suspect nucelar testing in the 50s) we are seeing a lot of health issues involving thyroid today. My mother and both my sisters have varying degrees of thyroid slowdown/failure and are on synthroid. No cancer though. And while thyroid may not be the root of a health issue it is an easy one to eliminate so, always get the TSH test.
Bottom line; get regular checkups and always get a THS test, then ask for the numbers, don't settle for 'oh, it's normal'.
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no subject
Date: 2008-08-08 04:14 pm (UTC)Thank you for posting this. I know that my mother and one sister have had thyroid issues in the past, so I should probably be checking on mine as well.
no subject
Date: 2008-08-08 04:18 pm (UTC)no subject
Date: 2008-08-08 04:30 pm (UTC)My thoughts go out to the GD. May he pass through this experience safely.
D.