wow, been a long time since i have been in my blog! not that i have not had things going on, or things to say. i had to work the whole week of Christmas, and our family Christmas was the weekend before Christmas. i had the entire family, including two grandsons- one only 3 months old, at my house. it was heaven! nothing like a full house, with the fire going in the kitchen fireplace, soup on the stove, and plenty of noise in the house! our two year old grandson was so excited this year- he understood a little bit more of what was going on. my husband and i were at his house right after our son and daughter-in-law put up their Christmas tree. just to see the wonder and awe on his face as he looked at the Christmas tree and showed " meme and granddad" his special train ornament- which was just outside of his reach( for a reason!) was very special. seeing things- events, holidays through the eyes of a child is just the best. it reminds me of my distant childhood, and rekindles some of the excitement of the holiday.
at thanksgiving this year, i got to deal with my first kidney stone. wow, was that something! i also had all of my children/grandchildren here for the holiday. i took a big dose of ibuprofen, and went on. i finally had to see the doctor the monday after thanksgiving and he did a cat scan. he showed me the stone on the xray. boy, for something so little, it sure did hurt! i decided to try to pass it on my own, instead of going into the hospital for the procedure, which takes a day. there is also a stent the doctor would have to put in that would stay in for a week or two. i was not sure i could deal with that. the doctor said that i had a good chance of passing it on my own, since i was 2/3 of the way there. i had read that exercise and sour lemonade were very good for that sort of thing. i went to zumba and tried to dance the stone out! in fact, i danced so hard that i pulled a tendon or ligament behind one knee. but you know what, i think it worked! i have a return visit to the doctor on january 10th, and i guess we will figure it out then. i had two days(after the zumba classes,and the gallons of sour lemonade ) where i felt pretty bad, and was sort of confident that i had passed it, but did know know for sure. i named my kidney stone, since i had had it for so long, shirley D. stone. the " D" stands for what you might think it would stand for. so shirley made a grand entrance, but a rather subdued exit, i think.
one thing that i wondered about, was at the exact time i was dealing with my kidney stone, my salivary stones acted up again. my jaws swelled- my husband could see the swelling, and they were painful. the sour lemonade is good for that,too, as is the ibuprofen. and believe it or not, so is zumba! when i had a really bad go of things with my salivary stones- two years ago, or so, i noticed that in zumba class the stones actually broke up and i could feel them. not to be too gross here, but my mouth filled up with what seemed like water. that is the only time that that has happened. usually, and this time, the swelling and pain will eventually go away after a few days drinking the sour lemonade and taking the ibuprofen. what i was curious about, are these two "stone events" related? the doctors say no, but i am not so sure. it seems like too much of a coincidence to me. i am curious if anyone out there has experienced both of these events,too.
one thing i do know though, is that i will have to drink sour lemonade for the rest of my life, i think. i had stopped( did that cause my stones to form?) for a while. but by golly i will not stop again! salivary stones are painful enough, but shirley D. stone was a very, very bad girl! my knee is finally feeling better, and i hope to return to zumba this coming saturday. i need it for my mental health,too. my husband will confirm this, bless his heart! probably my co-workers will as well.
i hope that everyone out there had a wonderful holiday season- which ever holiday you might celebrate. as a cancer survivor, i think that one appreciates every single time our families get together in joy and celebration. the being together is the best part, and i appreciate the fact that i am here and can take part in the family traditions.
Monday, December 30, 2013
Wednesday, October 30, 2013
congenital hypothyroidism in infants
no snappy song lyrics to introduce this topic. it is one that is near and very dear to my heart, though. in september, my daughter( who is hypothyroid) had her first baby, a beautiful 6lbs.7oz boy. she took wonderful care of herself during her pregnancy- exercise, good nutrition and monthly trips to our endocrinologist for thyroid blood work. everything looked good. my daughter had to have an emergency c-section delivery, but she and the baby did well and there were no problems associated with the procedure.
as part of newborn screening now, this was not done when my two children were born, my grandson was tested for congenital hypothyroidism. this was done on their last day of hospital stay, and we had no reason to expect anything was amiss. my daughter got a call from the hospital lab( sort of unusual, i think) and they said to bring the baby back to the lab IMMEDIATELY to retest for hypothyroid disease. it seems that his TSH was 155! yes, 155. i did not accidentally put an extra 5 in there. the second time they tested him( we were all hoping for lab error) it was so large that they could not measure it. so, at 1 week of age, my grandson was started on ( remember he only weighed about 7 pounds at this time) a dose of 37.5mcg of synthroid! after a few days, he was retested and his TSH had dropped dramatically to around 7.
my daughter took him back to get his blood work done again after about a week and a half on the 37.5mcg dose ,because he was exhibiting some HYPERthyroid symptoms( excessive crying, irritability,extreme hunger- even after nursing pretty much non-stop) . after another round of blood work, they reduced his dosage of the synthroid to 25mcg- which is his dose now, at about six weeks of age. his last blood work is as follows: TSH is suppressed at 0.1 free t4 is a little high at 1.92 and total t4 is 10 which is great, according to the physician. oh, i might add that just as soon as the pediatrician saw his initial blood work, a pediatric endocrinologist from Duke children's hospital was called in. my grandson has seen the pediatric endos several times. one of the doctors emails my daughter on a fairly regular basis, and my daughter can get in touch with her anytime she needs to. also, the doctor has written a standing blood work order so that if my daughter ever feels like my grandson is acting HYPER or HYPO she can just take him to the lab and have his blood drawn. the results are back in a few hours, not days, and the doctor gets the results, makes a change if necessary, and emails my daughter back. i can not say enough about how good these pediatric endocrinologists have been!
now, why is this important? well, if a child is diagnosed with congenital hypothyroidism at birth and treated within the first month of life( my grandson was treated at one week of age) then all is well. children who are diagnosed early have an excellent prognosis. i should add here that the dose of thyroid supplement must be correct- it has to a large enough dose to be effective. the baby may be somewhat hyperthyroid now, and will be a little slow to put on body fat. my grandson is in the " normal" range for head circumference and length, but has a little weight catching up to do. at six weeks of age, my grandson weighs 9 pounds, 10oz. which i think is great. he is starting to put on a little baby fat that is so cute, but i do not think that he will ever be a chunky baby. if a baby is NOT diagnosed at birth, or before say, one month of age, the baby will have mental and physical retardation.
if you read an article on congenital hypothyroidism in infants( there is a really good one from the american academy of pediatrics- i can send a link if anyone is interested) it is stated that the overall incidence is from 1 in 3000 to 1 in 4000 births. third world countries, who do not screen for CH or may have nutritional deficiencies of selenium,iron and most importantly,iodine have a higher incidence of CH. the ratio between male and female babies is 1 to 2.
what causes CH? well, there are two kinds of CH- permanent( the most common) and transient. permanent CH is most commonly caused by a defective or abnormal development of the thyroid gland( also known as dysgenesis) about 10% of babies with CH can not synthesize or secret thyroid hormone. there may also be pituitary or hypothalamus problems.
in transient CH, the causes may be insufficient intake of iodine by the mother, TSH receptor blocking antibodies in a pregnant woman who has an autoimmune thyroid disease, or if the mother takes antithyroid drugs( if she is hyperthyroid) while pregnant.
the standard of practice, now anyway, is to treat the infant until he/she is about 3 years of age. at that time, the thyroid hormone can be stopped or tapered down, and a scan can be performed to determine the state of the thyroid gland. if it is discovered that the child's thyroid gland is ectopic or absent, then a diagnosis of permanent CH is established, and the child will be treated for hypothyroidism for life.
it is important to understand that while more serious childhood diseases certainly occur, CH must be treated early, taken seriously by parents and health care providers, treated adequately, and monitored closely. having your first baby, having to have a c-section delivery and finding out that your baby has CH has been quite challenging for my daughter as it would be for anyone! but i am so proud of my daughter and son-in-law for the way they have dealt with this issue and for the love and care that they give to my grandson every single day. being informed is always important for good health/good outcomes. my daughter found a website, recommended by our endocrinologist, which is written by a woman who has two sons- BOTH with CH! what are the odds of that happening? this woman writes intelligently, honestly and provides good information. she has met with my daughter ( oddly enough they only live about 15 minutes apart) and was able to answer some of her questions. my daughter was able to see that her sons are intelligent, functioning children and that was very reassuring. if anyone is interested, i can message you the website on infants/children with CH.
as part of newborn screening now, this was not done when my two children were born, my grandson was tested for congenital hypothyroidism. this was done on their last day of hospital stay, and we had no reason to expect anything was amiss. my daughter got a call from the hospital lab( sort of unusual, i think) and they said to bring the baby back to the lab IMMEDIATELY to retest for hypothyroid disease. it seems that his TSH was 155! yes, 155. i did not accidentally put an extra 5 in there. the second time they tested him( we were all hoping for lab error) it was so large that they could not measure it. so, at 1 week of age, my grandson was started on ( remember he only weighed about 7 pounds at this time) a dose of 37.5mcg of synthroid! after a few days, he was retested and his TSH had dropped dramatically to around 7.
my daughter took him back to get his blood work done again after about a week and a half on the 37.5mcg dose ,because he was exhibiting some HYPERthyroid symptoms( excessive crying, irritability,extreme hunger- even after nursing pretty much non-stop) . after another round of blood work, they reduced his dosage of the synthroid to 25mcg- which is his dose now, at about six weeks of age. his last blood work is as follows: TSH is suppressed at 0.1 free t4 is a little high at 1.92 and total t4 is 10 which is great, according to the physician. oh, i might add that just as soon as the pediatrician saw his initial blood work, a pediatric endocrinologist from Duke children's hospital was called in. my grandson has seen the pediatric endos several times. one of the doctors emails my daughter on a fairly regular basis, and my daughter can get in touch with her anytime she needs to. also, the doctor has written a standing blood work order so that if my daughter ever feels like my grandson is acting HYPER or HYPO she can just take him to the lab and have his blood drawn. the results are back in a few hours, not days, and the doctor gets the results, makes a change if necessary, and emails my daughter back. i can not say enough about how good these pediatric endocrinologists have been!
now, why is this important? well, if a child is diagnosed with congenital hypothyroidism at birth and treated within the first month of life( my grandson was treated at one week of age) then all is well. children who are diagnosed early have an excellent prognosis. i should add here that the dose of thyroid supplement must be correct- it has to a large enough dose to be effective. the baby may be somewhat hyperthyroid now, and will be a little slow to put on body fat. my grandson is in the " normal" range for head circumference and length, but has a little weight catching up to do. at six weeks of age, my grandson weighs 9 pounds, 10oz. which i think is great. he is starting to put on a little baby fat that is so cute, but i do not think that he will ever be a chunky baby. if a baby is NOT diagnosed at birth, or before say, one month of age, the baby will have mental and physical retardation.
if you read an article on congenital hypothyroidism in infants( there is a really good one from the american academy of pediatrics- i can send a link if anyone is interested) it is stated that the overall incidence is from 1 in 3000 to 1 in 4000 births. third world countries, who do not screen for CH or may have nutritional deficiencies of selenium,iron and most importantly,iodine have a higher incidence of CH. the ratio between male and female babies is 1 to 2.
what causes CH? well, there are two kinds of CH- permanent( the most common) and transient. permanent CH is most commonly caused by a defective or abnormal development of the thyroid gland( also known as dysgenesis) about 10% of babies with CH can not synthesize or secret thyroid hormone. there may also be pituitary or hypothalamus problems.
in transient CH, the causes may be insufficient intake of iodine by the mother, TSH receptor blocking antibodies in a pregnant woman who has an autoimmune thyroid disease, or if the mother takes antithyroid drugs( if she is hyperthyroid) while pregnant.
the standard of practice, now anyway, is to treat the infant until he/she is about 3 years of age. at that time, the thyroid hormone can be stopped or tapered down, and a scan can be performed to determine the state of the thyroid gland. if it is discovered that the child's thyroid gland is ectopic or absent, then a diagnosis of permanent CH is established, and the child will be treated for hypothyroidism for life.
it is important to understand that while more serious childhood diseases certainly occur, CH must be treated early, taken seriously by parents and health care providers, treated adequately, and monitored closely. having your first baby, having to have a c-section delivery and finding out that your baby has CH has been quite challenging for my daughter as it would be for anyone! but i am so proud of my daughter and son-in-law for the way they have dealt with this issue and for the love and care that they give to my grandson every single day. being informed is always important for good health/good outcomes. my daughter found a website, recommended by our endocrinologist, which is written by a woman who has two sons- BOTH with CH! what are the odds of that happening? this woman writes intelligently, honestly and provides good information. she has met with my daughter ( oddly enough they only live about 15 minutes apart) and was able to answer some of her questions. my daughter was able to see that her sons are intelligent, functioning children and that was very reassuring. if anyone is interested, i can message you the website on infants/children with CH.
Sunday, October 13, 2013
the results blog, or what i have found out since my last six months round of tests........
as previously mentioned in other blogs, i have had thyroglobulin antibodies. this made my blood work pretty useless. why? to refresh, the antibodies can cause false NEGATIVE results. this means while you may want to party, your body is saying, " hey, wait a minute!" my first blood work, right after my surgery, RAI, etc, showed that i had thyroglobulin ( not good- only thyroid cells make thyroglobulin, and if your whole thyroid is gone,technically the only cells that can make this now are thyroid cancer cells) AND i had thyroglobulin antibodies.
my next six month blood work showed that the thyroglobulin had packed up and moved out of town, hopefully, but the antibodies were still hanging around. even though my ultrasounds- which i have every six months as well- showed no monsters growing in my neck area, i was still concerned that there was thyroglobulin somewhere in my body, and the antibodies were covering for them. this pattern continued UNTIL this time! finally, after three years of worry, my antibodies are negative! oh happy day :0 . truly, i feel that for the first time since i have started my thyroid journey, i can put some of this behind me.
my endocrinologist's nurse gave me a copy of my labs from the previous week ( i always request a copy for my records) while i was waiting on my doctor to come into the exam room. the nurse had the biggest smile on her face when she handed them to me. she did not say anything, just turned and left. i thought this was odd. first, i am a pain in the butt patient- i ask a lot of questions,etc, so i do not think she likes me very much, boo hoo. secondly, well, this nurse does not smile very much. at any rate, i started going over the values- here is a recap for those who are interested:
TSH: 0.007 uIu/ml
T4 free (direct) : 2.04ng/dL
T3, free: 3.0pg/ml
Thyroglobulin ( ICMA) less than 0.1ng/ml
Anti-thyroglobulin antibodies: less than 1.0IU/ml ( negative)
i can not tell you how many times i read and re-read that last number! i was almost in shock. the anti-thyroglobulin antibodies are supposed to go away sometime after surgery. mine had stuck around for 3 years! when my doctor came in, she said, " well, did you see?!" i asked her if this happened a lot, never,etc. and she said that it happens sometimes. she said that she likes to wait a while before ordering a PET scan, or other tests to see if the anti-TGA go away on their own.
i think that there is a lot we do not understand about thyroid cancer. did it take that long for the RAI to work? did my immune system, after the burden of fighting the thyroid cancer was gone, finally recover enough to fix this on its own? my doctor could not answer this, nor can i. hopefully we will understand more about this in the future...
just a few comments on my other lab values. my endocrinologist wants my TSH to be essentially zero for five years. this is a " just in case" measure( do not want to be stimulating any rogue thyroid cancer cells that might be hanging out somewhere) . as long as i do not exhibit hyperthyroid symptoms this will mean taking a larger dose of my thyroid hormone than i will get after the 5 year period.
my T3 is about in the middle( range for this lab is 2.0 to 4.4). this could be increased, or supplemented, by a drug called cytomel. it is pure T3. i have taken this in the past, but since i feel pretty good i have stopped the cytomel. it made me shaky and jittery, so i assumed that my T3 was too high when i was taking cytomel.
my T4 is too high.( range for this lab is 0.82-1.77). i have not been having any hyper symptoms, but i realize that heart palpitations could possibly occur with a high T4, so my doctor and i discussed it and we agreed to lower my thyroid dose a little. it is tricky- i need for my TSH to be zero, but my T4 not to be quite as high. i am sure that EVERYONE plays the" wiggle your thyroid medication game". not fun .i was taking 137mcg synthroid 4 days per week, and the 150mcg synthroid 3 days per week. i am going to reduce the 150 to one or two days per week. at some point, i may just take the 137mcg every day. i am not sure what that will do to my TSH if i do that, though. also, i get really tired, especially when i work a 6 out of 7 days work week/weekend. i count on the 150mcg to get me through saturday- which is a 11 hour day. bless my endocrinologist- she is pretty willing to let me figure this out, unless of course i have some heart palpitations, difficulty sleeping, shakey hands, etc. i am fortunate to have found an endocrinologist who not only looks at the labs, but more than that, considers how i am feeling before she prescribes. it took me going to at least FOUR doctors before i found one that i really liked. do not be afraid to switch doctors or get a second opinion, by the way, if you do not feel like you are getting the care that you need.
so happy, happy news! my endocrinologist is still holding me to the every six months testing. i am hopeful that next time my labs will be as good as this time. i feel like a gigantic weight has been lifted. perhaps, i can feel more like a 3 year cancer survivor rather than a 3 year cancer patient if that makes any sense.
my next six month blood work showed that the thyroglobulin had packed up and moved out of town, hopefully, but the antibodies were still hanging around. even though my ultrasounds- which i have every six months as well- showed no monsters growing in my neck area, i was still concerned that there was thyroglobulin somewhere in my body, and the antibodies were covering for them. this pattern continued UNTIL this time! finally, after three years of worry, my antibodies are negative! oh happy day :0 . truly, i feel that for the first time since i have started my thyroid journey, i can put some of this behind me.
my endocrinologist's nurse gave me a copy of my labs from the previous week ( i always request a copy for my records) while i was waiting on my doctor to come into the exam room. the nurse had the biggest smile on her face when she handed them to me. she did not say anything, just turned and left. i thought this was odd. first, i am a pain in the butt patient- i ask a lot of questions,etc, so i do not think she likes me very much, boo hoo. secondly, well, this nurse does not smile very much. at any rate, i started going over the values- here is a recap for those who are interested:
TSH: 0.007 uIu/ml
T4 free (direct) : 2.04ng/dL
T3, free: 3.0pg/ml
Thyroglobulin ( ICMA) less than 0.1ng/ml
Anti-thyroglobulin antibodies: less than 1.0IU/ml ( negative)
i can not tell you how many times i read and re-read that last number! i was almost in shock. the anti-thyroglobulin antibodies are supposed to go away sometime after surgery. mine had stuck around for 3 years! when my doctor came in, she said, " well, did you see?!" i asked her if this happened a lot, never,etc. and she said that it happens sometimes. she said that she likes to wait a while before ordering a PET scan, or other tests to see if the anti-TGA go away on their own.
i think that there is a lot we do not understand about thyroid cancer. did it take that long for the RAI to work? did my immune system, after the burden of fighting the thyroid cancer was gone, finally recover enough to fix this on its own? my doctor could not answer this, nor can i. hopefully we will understand more about this in the future...
just a few comments on my other lab values. my endocrinologist wants my TSH to be essentially zero for five years. this is a " just in case" measure( do not want to be stimulating any rogue thyroid cancer cells that might be hanging out somewhere) . as long as i do not exhibit hyperthyroid symptoms this will mean taking a larger dose of my thyroid hormone than i will get after the 5 year period.
my T3 is about in the middle( range for this lab is 2.0 to 4.4). this could be increased, or supplemented, by a drug called cytomel. it is pure T3. i have taken this in the past, but since i feel pretty good i have stopped the cytomel. it made me shaky and jittery, so i assumed that my T3 was too high when i was taking cytomel.
my T4 is too high.( range for this lab is 0.82-1.77). i have not been having any hyper symptoms, but i realize that heart palpitations could possibly occur with a high T4, so my doctor and i discussed it and we agreed to lower my thyroid dose a little. it is tricky- i need for my TSH to be zero, but my T4 not to be quite as high. i am sure that EVERYONE plays the" wiggle your thyroid medication game". not fun .i was taking 137mcg synthroid 4 days per week, and the 150mcg synthroid 3 days per week. i am going to reduce the 150 to one or two days per week. at some point, i may just take the 137mcg every day. i am not sure what that will do to my TSH if i do that, though. also, i get really tired, especially when i work a 6 out of 7 days work week/weekend. i count on the 150mcg to get me through saturday- which is a 11 hour day. bless my endocrinologist- she is pretty willing to let me figure this out, unless of course i have some heart palpitations, difficulty sleeping, shakey hands, etc. i am fortunate to have found an endocrinologist who not only looks at the labs, but more than that, considers how i am feeling before she prescribes. it took me going to at least FOUR doctors before i found one that i really liked. do not be afraid to switch doctors or get a second opinion, by the way, if you do not feel like you are getting the care that you need.
so happy, happy news! my endocrinologist is still holding me to the every six months testing. i am hopeful that next time my labs will be as good as this time. i feel like a gigantic weight has been lifted. perhaps, i can feel more like a 3 year cancer survivor rather than a 3 year cancer patient if that makes any sense.
Friday, September 20, 2013
" what now my love? now that you've left me? { o.k. the surgeon took you out, i had cancer, but still....} how can i live through another day, { my synthroid helps } watching my dreams, turning to ashes {i have noticed my vision is not as good as it used to be- thyroid eye disease?} and my hopes into bits of clay. once i could see { again, the eye thing} once i could feel, now i am numb { not really numb, no, but my feet tingle sometimes } i've become unreal. " very loosely based on the lyrics " what now my love" by shirley bassey
sorry, i had to poke a little fun at that song! it does bring up an interesting question,though, for thyroid ( or other) cancer survivors. what now? first there was the horrifying, up and down dips,catch your breath and hold onto your hat days of just finding out that you had cancer. i imagine that most people, like me, just spent those days adjusting to the "news", deciding on treatments, doctor and hospital visits, etc. there really was no time to think too far ahead.
next came the treatment and recovery period. reality is starting to sink in at this point. i took things in stages, or tried to. i waited a little while to find out what stage cancer i had( stage three), that sort of thing. i am a person who has to have information, but even i took a step back and slowed things down a little. there is only so much stress and worry that even an expert worrier like me can handle at one time. i was fortunate to have great family support, access to good information, and i also discovered a network of fellow thyroid cancer survivors. no offense to family or friends, but NO ONE AND I MEAN NO ONE, understands what you are going through like another thyroid cancer survivor! it was so good to email my new friends and to make contact through my blog. and i have always considered my blog like a little" spaceship discovery"- traveling through the blog-o-sphere looking for others like myself.( well, that may not be possible......).
now i seem to be in, literally, stage three of my journey- what now? i go for tests every six months- like clock work- and i would like to say that the testing anxiety is over, or at least a little better, but i can not say that at this point. i am not sure how it is for others, but i still get anxious ( and my husband would say a little " testy") around my six months tests. i was under the impression that after 5 years or so i could stop these tests. but as i mentioned in an earlier blog, testing goes on for life after thyroid cancer. ( remember old 30% recurrence?)
i have a friend who is a colon cancer survivor. her cancer was detected during a regular "now you are 50 and you have to have this gosh darn colonoscopy" test- she was not having any problems. she had a small tumor and the cancer had spread to one lymph node. her prognosis after surgery and chemo are excellent, but she is a worrier,too. she had a scare last year- she thought her cancer was back and had moved to her chest, but found out that she had pulled a muscle doing something at work.i do not blame her for being cautious and having more tests. it is hard not to worry when you are aching somewhere. i was sure i had something wrong with my back until my husband said, " well, jeez, you did carry our 25 pound grandson up and down the stairs and all around this weekend". oh. that could probably be it.
the challenge is to be diligent about having the " required tests" and taking good care of yourself, versus being like a character from a woody allen movie.( i am afraid that i am moving towards the latter). live a good life, enjoy every moment that you have here on this earth without worrying too much. i have heard some people say " oh my cancer does not define me". well, i do not know if i would say that cancer defined me, but if my name was in the dictionary, and you cared to look me up, it would be part of the definition. that is just how it is. you had cancer, you got through it, but things will never be the same. and i do not mean that in a bad way. i thought that i always knew what/who was important in my life. now i feel like i have special glasses, and life has been magnified about 1000 times- i can see what is really important.
so what now? i am still figuring that out. i feel pretty good ,especially since i have gotten my thyroid medication straightened out. i have thyroid testing starting next week- i feel confident that i will live through it -although i might have a rocky day or two. my daughter has had her baby and i am going to take a two week leave of absence to help out a little. i am really looking forward to our time together. past that, i am not sure what the future holds. but then no one has a guarantee, right?
next came the treatment and recovery period. reality is starting to sink in at this point. i took things in stages, or tried to. i waited a little while to find out what stage cancer i had( stage three), that sort of thing. i am a person who has to have information, but even i took a step back and slowed things down a little. there is only so much stress and worry that even an expert worrier like me can handle at one time. i was fortunate to have great family support, access to good information, and i also discovered a network of fellow thyroid cancer survivors. no offense to family or friends, but NO ONE AND I MEAN NO ONE, understands what you are going through like another thyroid cancer survivor! it was so good to email my new friends and to make contact through my blog. and i have always considered my blog like a little" spaceship discovery"- traveling through the blog-o-sphere looking for others like myself.( well, that may not be possible......).
now i seem to be in, literally, stage three of my journey- what now? i go for tests every six months- like clock work- and i would like to say that the testing anxiety is over, or at least a little better, but i can not say that at this point. i am not sure how it is for others, but i still get anxious ( and my husband would say a little " testy") around my six months tests. i was under the impression that after 5 years or so i could stop these tests. but as i mentioned in an earlier blog, testing goes on for life after thyroid cancer. ( remember old 30% recurrence?)
i have a friend who is a colon cancer survivor. her cancer was detected during a regular "now you are 50 and you have to have this gosh darn colonoscopy" test- she was not having any problems. she had a small tumor and the cancer had spread to one lymph node. her prognosis after surgery and chemo are excellent, but she is a worrier,too. she had a scare last year- she thought her cancer was back and had moved to her chest, but found out that she had pulled a muscle doing something at work.i do not blame her for being cautious and having more tests. it is hard not to worry when you are aching somewhere. i was sure i had something wrong with my back until my husband said, " well, jeez, you did carry our 25 pound grandson up and down the stairs and all around this weekend". oh. that could probably be it.
the challenge is to be diligent about having the " required tests" and taking good care of yourself, versus being like a character from a woody allen movie.( i am afraid that i am moving towards the latter). live a good life, enjoy every moment that you have here on this earth without worrying too much. i have heard some people say " oh my cancer does not define me". well, i do not know if i would say that cancer defined me, but if my name was in the dictionary, and you cared to look me up, it would be part of the definition. that is just how it is. you had cancer, you got through it, but things will never be the same. and i do not mean that in a bad way. i thought that i always knew what/who was important in my life. now i feel like i have special glasses, and life has been magnified about 1000 times- i can see what is really important.
so what now? i am still figuring that out. i feel pretty good ,especially since i have gotten my thyroid medication straightened out. i have thyroid testing starting next week- i feel confident that i will live through it -although i might have a rocky day or two. my daughter has had her baby and i am going to take a two week leave of absence to help out a little. i am really looking forward to our time together. past that, i am not sure what the future holds. but then no one has a guarantee, right?
Thursday, September 5, 2013
" i need to laugh, and when the sun is out, i've got something to laugh about. i feel good, in a special way. i'm in love and it's a sunny day." good day sunshine, by the beatles
my husband and i are on vacation this week. i guess it should be phrased as a "staycation" as we are staying home. our daughter is expecting her first baby- well her due date was this past tuesday and the little guy still has not put in an appearance! i have had my bag packed for so long that my clothes are all wrinkled. actually, i had to re-pack it a few days ago. our daughter lives about 4 & 1/2 hours away, so it is going to be a bit tricky to get there right on time. we thought we were being so smart in having this week off( next week we are scheduled to work 6 out of 7 days- it is our weekend to work). i think that gavin( our grandson) is going to be born next week- just our luck, right?
to cheer ourselves up, as he always does, we picked up our other grandson from daycare today. gabriel is 21 months old and a ray of pure sunshine. he jabbers on and on- i can understand about 50% of what he says and what a handful he is! we all had a nice lunch on the front porch, then we took a walk. i will loosely call it a walk because my husband and i took turns carrying the little guy on the way back home. my husband made the mistake of picking up a rock( he is re-rocking our bedroom fireplace) and putting it in his pocket. gabriel wanted to help out, so he picked up a rock and put it in granddads pocket. then another one. then another one..... and before long, granddad was sagging!( where was my camera when i needed it!!??) best of all, his shorts fell down. we all had a good laugh, and since we live in the country, the only other living beings that witnessed this were the birds, and they promised not to tell.
even with worrying a little about my daughter, when she will deliver, will the baby be o.k.,etc. i have to admit being off work has been wonderful. i have had plenty of things to do and i do not miss work. i think that when i retire- in a few more years- i will enjoy the time. i think that doctors blame "stress" too much for our health issues. (remember what happened to me? it was in my last blog). that said, i have sure enjoyed being away from a very stressful job. i think that my overall health has been better this week. i got to go to zumba yesterday- yeah! when i retire, i will be able to go to zumba at least three times a week. that is if i can still walk by then. you can bet that i will definitely be wearing my silver coined belly scarf though. got to show them that this grandma can still ring up some sales!
there has been a lot of discussion about which thyroid medicine is better- which one to try now that some are not available. i think that this is different for everyone, and sometimes it is a trial and error process. no need to stress out about it, and personally i am sick of the natural versus synthetic argument. take the one that works best for you. period. equally important medicine is plenty of laughter, sunshine, exercise and ( if you are lucky enough) a healthy dose of a grandchild or two. this seems to be the best medicine of all- definitely the most fun.
to cheer ourselves up, as he always does, we picked up our other grandson from daycare today. gabriel is 21 months old and a ray of pure sunshine. he jabbers on and on- i can understand about 50% of what he says and what a handful he is! we all had a nice lunch on the front porch, then we took a walk. i will loosely call it a walk because my husband and i took turns carrying the little guy on the way back home. my husband made the mistake of picking up a rock( he is re-rocking our bedroom fireplace) and putting it in his pocket. gabriel wanted to help out, so he picked up a rock and put it in granddads pocket. then another one. then another one..... and before long, granddad was sagging!( where was my camera when i needed it!!??) best of all, his shorts fell down. we all had a good laugh, and since we live in the country, the only other living beings that witnessed this were the birds, and they promised not to tell.
even with worrying a little about my daughter, when she will deliver, will the baby be o.k.,etc. i have to admit being off work has been wonderful. i have had plenty of things to do and i do not miss work. i think that when i retire- in a few more years- i will enjoy the time. i think that doctors blame "stress" too much for our health issues. (remember what happened to me? it was in my last blog). that said, i have sure enjoyed being away from a very stressful job. i think that my overall health has been better this week. i got to go to zumba yesterday- yeah! when i retire, i will be able to go to zumba at least three times a week. that is if i can still walk by then. you can bet that i will definitely be wearing my silver coined belly scarf though. got to show them that this grandma can still ring up some sales!
there has been a lot of discussion about which thyroid medicine is better- which one to try now that some are not available. i think that this is different for everyone, and sometimes it is a trial and error process. no need to stress out about it, and personally i am sick of the natural versus synthetic argument. take the one that works best for you. period. equally important medicine is plenty of laughter, sunshine, exercise and ( if you are lucky enough) a healthy dose of a grandchild or two. this seems to be the best medicine of all- definitely the most fun.
Monday, September 2, 2013
" you better watch what you say. You better watch what you do to me. don't get carried away, girl if you can do better than me, then go. but remember, good love is hard to find, good love is hard to find, you got lucky babe, you got lucky babe, when i found you. " You got lucky, by tom petty
well, things never go quite like i want them to go. is this the same with you? i have an ultrasound and blood work scheduled for the end of this month. then, my doctor's appointment is on october, 3rd. my endocrinologist has decided that she needs to talk with me about the PET scan before we decide if " we" want to do it or not. o.k. i will lay out a few facts and then maybe there can be a decision made if " we" want to do the test or not. these are facts that i have gotten from the thyca.org website. this website contains a world of information for thyroid cancer survivors, and if you have not checked it out, you really should.
when i was first diagnosed with thyroid cancer, i thought that after, oh say, maybe, 5 years of testing, if things were good then i would be considered cancer free. well, that is not the case! i now know that while the prognosis for most thyroid patients is good, the rate of recurrence is about 30%. i see percentages differently than i once did . when i was having my thyroid nodules tested, the doctor said, " don't worry- only 5% of these nodules are cancerous." however, if you happen to be in the 5% whose nodules are cancerous, it takes on a whole new meaning. in other words, 30% looks pretty significant to me now. at the very least, it is a number to be concerned about. it is recommended that all thyroid cancer patients have lifetime monitoring.
those pesky anti-thyroglobulin anti-biodies (TgAb) . i have them. they make the blood work for the thyroglobulin basically worthless. sometimes, these disappear after six months. mine have stuck around- to annoy me, i think. unfortunately, i did not have the Tg or TgAb testing done before my surgery, so i have no baseline to compare my blood work to. that would have been so helpful, but i did not know about it then. that is one reason i try to get people to be informed- read all that you can about your condition, and keep all blood work and test records. you have to be your own patient advocate. it is recommended by thyca, and other sources, that if you have the TgAb, you need imaging studies done. i am not sure if this means just the neck ultrasound, or if it also means the PET scan. i have read various opinions about this. i do know that my radiologist- the doctor who administered by treatment dose of I-131- told me that when thyroid cancer spreads, it usually goes to the bones and lungs. i have only had one chest x-ray( the radiologist ordered it), and a few blood tests to measure abnormalities in my bones( ditto- radiologist). i am not sure if i need these repeated, or how often.
my surgeon told me that i had had thyroid cancer for several years before it was discovered. i wasted five years going to another endocrinologist who told me the reason i was so terribly tired was due to " stress". i finally decided that i had had enough, changed doctors, and well- the rest is history. i do not want to be neurotic about my health or testing. i do want to be responsible and have the appropriate tests done, and treatment if i need it. i just want to be informed about my condition and make good decisions about my health care. which really applies to anyone living with a chronic health condition.
so, the jury is out you might say on the PET scan. i will discuss things with my doctor and of course let everyone know the outcome. i am planning to take my trusty notebook along with me to my next doctor's appointment. my doctor is used to this. one time she even asked me to check something in my lab reports( of course i had it ) that was left off of my chart. never hurts to be prepared, i say!
when i was first diagnosed with thyroid cancer, i thought that after, oh say, maybe, 5 years of testing, if things were good then i would be considered cancer free. well, that is not the case! i now know that while the prognosis for most thyroid patients is good, the rate of recurrence is about 30%. i see percentages differently than i once did . when i was having my thyroid nodules tested, the doctor said, " don't worry- only 5% of these nodules are cancerous." however, if you happen to be in the 5% whose nodules are cancerous, it takes on a whole new meaning. in other words, 30% looks pretty significant to me now. at the very least, it is a number to be concerned about. it is recommended that all thyroid cancer patients have lifetime monitoring.
those pesky anti-thyroglobulin anti-biodies (TgAb) . i have them. they make the blood work for the thyroglobulin basically worthless. sometimes, these disappear after six months. mine have stuck around- to annoy me, i think. unfortunately, i did not have the Tg or TgAb testing done before my surgery, so i have no baseline to compare my blood work to. that would have been so helpful, but i did not know about it then. that is one reason i try to get people to be informed- read all that you can about your condition, and keep all blood work and test records. you have to be your own patient advocate. it is recommended by thyca, and other sources, that if you have the TgAb, you need imaging studies done. i am not sure if this means just the neck ultrasound, or if it also means the PET scan. i have read various opinions about this. i do know that my radiologist- the doctor who administered by treatment dose of I-131- told me that when thyroid cancer spreads, it usually goes to the bones and lungs. i have only had one chest x-ray( the radiologist ordered it), and a few blood tests to measure abnormalities in my bones( ditto- radiologist). i am not sure if i need these repeated, or how often.
my surgeon told me that i had had thyroid cancer for several years before it was discovered. i wasted five years going to another endocrinologist who told me the reason i was so terribly tired was due to " stress". i finally decided that i had had enough, changed doctors, and well- the rest is history. i do not want to be neurotic about my health or testing. i do want to be responsible and have the appropriate tests done, and treatment if i need it. i just want to be informed about my condition and make good decisions about my health care. which really applies to anyone living with a chronic health condition.
so, the jury is out you might say on the PET scan. i will discuss things with my doctor and of course let everyone know the outcome. i am planning to take my trusty notebook along with me to my next doctor's appointment. my doctor is used to this. one time she even asked me to check something in my lab reports( of course i had it ) that was left off of my chart. never hurts to be prepared, i say!
Monday, August 5, 2013
" get up stand up. stand up for your rights" by bob marley
i have thyroglobulin antibodies. that means that my blood work to test for thyroglobulin is pretty much worthless. to review, after thyroid cancer- surgery and possibly RA-131, your doctor will probably check your neck by ultrasound ( looking at lymph nodes,etc) to make sure that the thyroid cancer cells have not returned. also, they do a blood test to determine if you have thyroglobulin cells. now, if they have removed all your thyroid, and the RA-131 has gotten the bits of gland/tumors left behind, you should not have any thyroid cells left to make thyroglobulin. that is unless you have some rogue thyroid cells- and unfortunately, they would be thyroid CANCER cells- left behind. these thyroid cancer cells like to visit your bones and lungs first i have been told.
thyroglobulin antibodies produce false negative results in blood work. how mean of them ! i sometimes wonder why my endo even does the blood work test. i think that she, like me, is somehow hoping that my antibiodies will go away. sometimes they do- after surgery, but i think that since it has been three years for me, mine are probably sticking around. the first blood test that i had done after my surgery was positive for both thyroglobulin and thyroglobulin antibodies. that freaked me out. the second test i had done was only positive for the antibodies, but hey, that could be a false negative. what do do?
well, this year, if my doctor can get my insurance to pay for at least a little bit of it, i am having a PET scan. this is a scan that can detect small " tumors" or bits of thyroid cancer cells that are hanging out, say, in my bones, lungs, or other interesting places. the way the test goes, as i understand it, they inject a little radioactive substance ( if i had to guess it would be the all time favorite of thyroid cells, the I-131), wait a minute for the greedy little cells to gobble it up, then use a scanning machine( do not know the proper name, sorry) that looks like a donut. i had one of those machines to do my scan- not a PET scan, after my surgery. i remember the technician saying " wow, her neck lit up like a Christmas tree!". jeez. Christmas anything is a good thing, but not in this case. it meant that they were picking up a lot of thyroid cancer cells in my neck area. my tumors had burst open, and the cancer had spread to two of my parathyroids- which had to be removed along with my thyroid( for those of you who have not read my thyroid cancer story)
if things go as planned, i will have the scan next month, and can talk over the results with my endo at my appointment scheduled for the first week of october. she has suggested that i do this scan for a while, but i wanted to think about it. i am now ready to get one for my peace of mind, basically. i am one of those " need to know" people. i am not one who feels better not knowing- in fact i do not understand people who are like that. i want to know what is going on, and then i will deal with it and come up with a plan of action.
i am not going to ask for a PET scan every time; i am not sure how often you do one. every year? every two or three years? but i think, that for me, it is now time to get this done. if anyone out there has had one and would like to tell me ( well, us) about their experience, i would appreciate it. if not, i will certainly fill everyone in on mine next month.
thyroglobulin antibodies produce false negative results in blood work. how mean of them ! i sometimes wonder why my endo even does the blood work test. i think that she, like me, is somehow hoping that my antibiodies will go away. sometimes they do- after surgery, but i think that since it has been three years for me, mine are probably sticking around. the first blood test that i had done after my surgery was positive for both thyroglobulin and thyroglobulin antibodies. that freaked me out. the second test i had done was only positive for the antibodies, but hey, that could be a false negative. what do do?
well, this year, if my doctor can get my insurance to pay for at least a little bit of it, i am having a PET scan. this is a scan that can detect small " tumors" or bits of thyroid cancer cells that are hanging out, say, in my bones, lungs, or other interesting places. the way the test goes, as i understand it, they inject a little radioactive substance ( if i had to guess it would be the all time favorite of thyroid cells, the I-131), wait a minute for the greedy little cells to gobble it up, then use a scanning machine( do not know the proper name, sorry) that looks like a donut. i had one of those machines to do my scan- not a PET scan, after my surgery. i remember the technician saying " wow, her neck lit up like a Christmas tree!". jeez. Christmas anything is a good thing, but not in this case. it meant that they were picking up a lot of thyroid cancer cells in my neck area. my tumors had burst open, and the cancer had spread to two of my parathyroids- which had to be removed along with my thyroid( for those of you who have not read my thyroid cancer story)
if things go as planned, i will have the scan next month, and can talk over the results with my endo at my appointment scheduled for the first week of october. she has suggested that i do this scan for a while, but i wanted to think about it. i am now ready to get one for my peace of mind, basically. i am one of those " need to know" people. i am not one who feels better not knowing- in fact i do not understand people who are like that. i want to know what is going on, and then i will deal with it and come up with a plan of action.
i am not going to ask for a PET scan every time; i am not sure how often you do one. every year? every two or three years? but i think, that for me, it is now time to get this done. if anyone out there has had one and would like to tell me ( well, us) about their experience, i would appreciate it. if not, i will certainly fill everyone in on mine next month.
Friday, July 19, 2013
" in the summer time, when the weather is hot, you can chase right up and touch the sky. when the weather's fine, you have your thyroid, yes, your thyroid on your mind...." apologies to Mungo Jerry and " in the summer time"
we dance to this song in zumba( well, the original, not my lyrics). it is a cool down song, and has really fun moves. i have not been able to go to zumba in a while due to a shoulder injury( it has also affected my computer time), but i will be able to return next week i am hoping. i have really missed the exercise- it is such a mood enhancer. not to mention it keeps me toned and the best part- i get to eat a little more! one session of zumba can burn up to 700 or so calories. that is good for a brownie or two, i figure.
summer time is pretty great for people with thyroid problems. i am always cold, and i am so happy for the warmer weather. of course, at work, the powers that be keep our thermostat set on about 40 degrees, not that i am complaining about being cool at work. i just have to wear a sweater everyday. i get the oddest looks- i go into, and out of, work all bundled up, while the people outside are wearing sleeveless shirts and shorts.
another important consideration, and i have talked about this before, but it bears repeating, is our thyroid medication. keep it cool, guys! hot thyroid medication does not work very well. i always recommend that people who take the naturally derived thyroid products keep them in the refrigerator( it keeps the " smell" down, also. if you take one of these products, you will know what i am talking about). if you mail order your medications, heaven forbid- sorry, but i am a pharmacist after all, do not let them sit in your mailbox all day! and if you are going on a trip, do not pack them away in your suitcase where they will get hot. also, if you purchase your medication,and are planning on being out all day on errands,etc, keep the medication in your purse, not in your car.
i personally know of one person who mail ordered her thyroid supplement and it sat in her mailbox all day. her TSH shot up to 40! strange, but true. it could have been a bad batch of generic medication, but it was most likely the heat that basically inactivated her levothyroxine. i am not sure what would be the best thing to do if you do mail order, but either plan the delivery date for sometime that you are home, or have a neighbor retrieve your medication and hold if for you until you get home, perhaps.
my sympathies to the people out there who are hyperthyroid. you must be miserable in the summer time , as you feel hot instead of cold. amazing what all those darn little thyroids control! so enjoy the heat, my fellow hypos, and try to stay cool, all you hypers out there. i hope that everyone is having a great summer time!
summer time is pretty great for people with thyroid problems. i am always cold, and i am so happy for the warmer weather. of course, at work, the powers that be keep our thermostat set on about 40 degrees, not that i am complaining about being cool at work. i just have to wear a sweater everyday. i get the oddest looks- i go into, and out of, work all bundled up, while the people outside are wearing sleeveless shirts and shorts.
another important consideration, and i have talked about this before, but it bears repeating, is our thyroid medication. keep it cool, guys! hot thyroid medication does not work very well. i always recommend that people who take the naturally derived thyroid products keep them in the refrigerator( it keeps the " smell" down, also. if you take one of these products, you will know what i am talking about). if you mail order your medications, heaven forbid- sorry, but i am a pharmacist after all, do not let them sit in your mailbox all day! and if you are going on a trip, do not pack them away in your suitcase where they will get hot. also, if you purchase your medication,and are planning on being out all day on errands,etc, keep the medication in your purse, not in your car.
i personally know of one person who mail ordered her thyroid supplement and it sat in her mailbox all day. her TSH shot up to 40! strange, but true. it could have been a bad batch of generic medication, but it was most likely the heat that basically inactivated her levothyroxine. i am not sure what would be the best thing to do if you do mail order, but either plan the delivery date for sometime that you are home, or have a neighbor retrieve your medication and hold if for you until you get home, perhaps.
my sympathies to the people out there who are hyperthyroid. you must be miserable in the summer time , as you feel hot instead of cold. amazing what all those darn little thyroids control! so enjoy the heat, my fellow hypos, and try to stay cool, all you hypers out there. i hope that everyone is having a great summer time!
Thursday, June 27, 2013
" i feel good, wo,i feel nice, like sugar and spice. so nice, so nice, i got you. wo, i feel good.... well, on most days anyway." apologies to james brown and " i feel good"
my desktop crashed! i have been out of the blog-o-sphere, as my husband calls it, for a while. i am using the laptop while the desktop is in the hospital. i have to admit that i am a little old fashioned here. i like a big ole desktop- big screen, good sized, REAL keyboard." i pads" or tablets do not interest me, and when i got this laptop a couple of years ago, i got the one with the biggest screen. still, it is not the same.......that said, here is what i found out about brand name synthroid.
i feel pretty darn good. my levoxyl really had "potency" problems, because it got to the point that i could not go. i have had much more energy on the synthroid compared to the levoxyl. i can get through my work days with a little juice left over for chores, a walk,etc. my hair is still coming out- i started losing it again a few months ago. my hairdresser pointed it out to me, but jeez, i had already noticed it. not just after i wash my hair, but also on my clothes and the back of the couch. this is a really disturbing problem associated with thyroid disease. and i really do not think that there is a good solution for this problem. i have purchased a multi-vitamin( could not hurt, probably will not help) and have sworn to lay my flat iron down for a while. i have also purchased an organic shampoo and conditioner, which will probably be milder and easier on my hair. i had a problem with my hair right after my surgery and I-131 treatment. things got better, but they are back. i am hoping that my thyroid levels will improve, and my hair will stay put for a while.
i felt good enough to go to zumba wednesday!! hooray!! i had a really good time. it actually makes my knees feel better when i go. i warm up and cool down on the recumbent bicycle and modify any moves that i know will injure my knees( i am familiar with almost all of them at this point). sometimes a girl just has to do a jumping jack, you know? but i have really hurt my knees before doing those, so i try to just shake my belly scarf or something when we are supposed to do those. exercise really does help my mood, as well as my body. but if you are too tired to go, it is hard to drag yourself to class. i feel like the synthroid has helped me on this.
i know that there are some who feel that naturally sourced thyroid hormone is better. i used to take armour thyroid, and it seemed to work for a while. this was before i knew that i had cancer, so it was a few years ago. my endo was willing to go along with this, which i appreciate. my family doctor told me i was crazy for taking it, but i continued it until i felt that it was not working for me. the company reformulated the drug a few years ago, and that is when i noticed a change in how i felt.
i think that the question of " natural" versus "synthetic " should best be answered by the patient. i think that this is an individual decision, and the patient should decide, along with the doctor's input, which one is right for them. i support either decision, and feel that there is no right or wrong choice in this issue.
so, if i could sing, i guess you could say that i am singing the praises of synthroid, as much as i hate to admit it. for me, it has been a good choice. i feel better, have more energy, and if my hair issue is resolved, i will be a happy camper, as they say. if armour,etc, work best for you, then good for you. the most important thing is that we are being treated with the correct medicine for us.
i feel pretty darn good. my levoxyl really had "potency" problems, because it got to the point that i could not go. i have had much more energy on the synthroid compared to the levoxyl. i can get through my work days with a little juice left over for chores, a walk,etc. my hair is still coming out- i started losing it again a few months ago. my hairdresser pointed it out to me, but jeez, i had already noticed it. not just after i wash my hair, but also on my clothes and the back of the couch. this is a really disturbing problem associated with thyroid disease. and i really do not think that there is a good solution for this problem. i have purchased a multi-vitamin( could not hurt, probably will not help) and have sworn to lay my flat iron down for a while. i have also purchased an organic shampoo and conditioner, which will probably be milder and easier on my hair. i had a problem with my hair right after my surgery and I-131 treatment. things got better, but they are back. i am hoping that my thyroid levels will improve, and my hair will stay put for a while.
i felt good enough to go to zumba wednesday!! hooray!! i had a really good time. it actually makes my knees feel better when i go. i warm up and cool down on the recumbent bicycle and modify any moves that i know will injure my knees( i am familiar with almost all of them at this point). sometimes a girl just has to do a jumping jack, you know? but i have really hurt my knees before doing those, so i try to just shake my belly scarf or something when we are supposed to do those. exercise really does help my mood, as well as my body. but if you are too tired to go, it is hard to drag yourself to class. i feel like the synthroid has helped me on this.
i know that there are some who feel that naturally sourced thyroid hormone is better. i used to take armour thyroid, and it seemed to work for a while. this was before i knew that i had cancer, so it was a few years ago. my endo was willing to go along with this, which i appreciate. my family doctor told me i was crazy for taking it, but i continued it until i felt that it was not working for me. the company reformulated the drug a few years ago, and that is when i noticed a change in how i felt.
i think that the question of " natural" versus "synthetic " should best be answered by the patient. i think that this is an individual decision, and the patient should decide, along with the doctor's input, which one is right for them. i support either decision, and feel that there is no right or wrong choice in this issue.
so, if i could sing, i guess you could say that i am singing the praises of synthroid, as much as i hate to admit it. for me, it has been a good choice. i feel better, have more energy, and if my hair issue is resolved, i will be a happy camper, as they say. if armour,etc, work best for you, then good for you. the most important thing is that we are being treated with the correct medicine for us.
Thursday, June 6, 2013
i was hoping to quote a happy song here, but no such luck. as leon russell says, "when life gives you lemons, you do what they say." does anyone have a straw?
it was a" no- go" on the tirosint. it was horribly expensive-( my insurance did not pay a dime on it) but i could have managed that if it had not made me sick.i did not feel well as soon as i started it, but after a few doses, i had an anaphylactic reaction and that was that. the official line from the company is that it does not contain any sulfite preservatives. BUT , sulfur dioxide is added at the early stages and supposedly removed. surprise, boys, you obviously did not get it all. back to the drawing board.
as i said, i do not want to take generics, so i tried getting back on my levoxyl. i had some left and thought that i would be o.k. yesterday i was so dead tired that i could not get out of bed. the company said that the product was removed " because the potency did not meet the expiration date." no joke. now what, i asked myself. some of you may think that i have gone over to the "dark side" but, i had my doctor call me in some brand name,yes , there i said it, brand name synthroid. the company that makes synthroid would not confirm or deny that synthroid contains sulfite preservatives. an allergy website that i went to a few years ago said that it does contain them. i am off tomorrow. of course no day is a good day for an anaphylactic reaction, but i am going to give it a go. i hate to be telling all of you that i am doing this, but i have to be honest. i will of course blog if it makes me sick, or if it works. at this point, i am willing to try about anything. i feel as tired as i felt right after my surgery, three years ago. my tsh must have been sky high because i could not get off of the couch. nor could i remember my daughter or husbands phone numbers! that was scary. i called my endo( once i remembered who she was) and she doubled my levoxyl dose. i have been doing pretty well until now. on the thyca website, they reported that levoxyl might be coming back, but not until 2014. jeez, i am not sure that i can hold out that long.
on the thyca website, they reported that thyroid cancer is the fastest increasing cancer in the world, and the sixth most common cancer in women. there are about 213,000 new cases of thyroid cancer worldwide each year. even though i am limited in what i can do, i am more determined than ever to raise thyroid cancer awareness- at work, and in my blog. i think that i have helped some cancer survivors that i have met in my work, but i would really like to also help patients get treatment and diagnosis before it is too late. i read that some people think that thyroid cancer is over diagnosed. WHAT?????????!!!!! do these same people also think that breast, lung, brain,etc, cancer are over diagnosed? cancer is cancer is cancer. prevention is key, but the sooner the diagnosis is made and treatment started, the better.
so, having crossed over to the dark side, i will take my synthroid tomorrow and hope for the best. if it makes me feel better, then i will just have to deal with it. of course, i will let everyone know how this turns out.
as i said, i do not want to take generics, so i tried getting back on my levoxyl. i had some left and thought that i would be o.k. yesterday i was so dead tired that i could not get out of bed. the company said that the product was removed " because the potency did not meet the expiration date." no joke. now what, i asked myself. some of you may think that i have gone over to the "dark side" but, i had my doctor call me in some brand name,yes , there i said it, brand name synthroid. the company that makes synthroid would not confirm or deny that synthroid contains sulfite preservatives. an allergy website that i went to a few years ago said that it does contain them. i am off tomorrow. of course no day is a good day for an anaphylactic reaction, but i am going to give it a go. i hate to be telling all of you that i am doing this, but i have to be honest. i will of course blog if it makes me sick, or if it works. at this point, i am willing to try about anything. i feel as tired as i felt right after my surgery, three years ago. my tsh must have been sky high because i could not get off of the couch. nor could i remember my daughter or husbands phone numbers! that was scary. i called my endo( once i remembered who she was) and she doubled my levoxyl dose. i have been doing pretty well until now. on the thyca website, they reported that levoxyl might be coming back, but not until 2014. jeez, i am not sure that i can hold out that long.
on the thyca website, they reported that thyroid cancer is the fastest increasing cancer in the world, and the sixth most common cancer in women. there are about 213,000 new cases of thyroid cancer worldwide each year. even though i am limited in what i can do, i am more determined than ever to raise thyroid cancer awareness- at work, and in my blog. i think that i have helped some cancer survivors that i have met in my work, but i would really like to also help patients get treatment and diagnosis before it is too late. i read that some people think that thyroid cancer is over diagnosed. WHAT?????????!!!!! do these same people also think that breast, lung, brain,etc, cancer are over diagnosed? cancer is cancer is cancer. prevention is key, but the sooner the diagnosis is made and treatment started, the better.
so, having crossed over to the dark side, i will take my synthroid tomorrow and hope for the best. if it makes me feel better, then i will just have to deal with it. of course, i will let everyone know how this turns out.
Wednesday, May 22, 2013
" and here is your heart, tinman, though since a heart can be broken, i am not sure why you would want one . as for you, scarecrow, i give you a college degree to prove your superior intelligence. cowardly lion, since you are not cowardly anymore, here is a metal for heroic service in the line of duty. and dorothy, what can i get for you? oh, wizard, i do not think that there is anything in that bag for me. why is that ? well, what i want is a THYROID REPLACEMENT DRUG that will work well, is cost effective and i am not allergic to." my apologies to dialogue that may or may not have been borrowed from the " wizard of oz"
i felt that i had to address the issue of thyroid replacement drugs, and all of the concerns, issues, etc, associated with them now. this is my job afterall, and moreover, it is a personal issue to me. i do not like all the hype surrounding the brand name drug, synthroid. i do not like to see any prescription drug advertised on television or in magazines. this is confusing to the patient, i think, and more times than you would think, people assume that they can purchase these prescription products without a prescription.
i will discuss, and this is my opinion- based on my knowledge and experience- some personal, the different choices( or lack thereof) we thyroid patients now have when choosing a thyroid replacement drug. patients need to be informed about the different choices, and discuss this with their health care provider. only then can one hope to pick the right one. this process may be a sort of trial and error one. the patient/doctor may choose one, do lab work after a certain amount of time, and then decide to stay the course, or choose another drug if necessary.
i will just use myself, supplementing with patients, family and friends- who shall remain nameless- as examples. first off, i do not like generic ( levothyroxine) . too many patients of mine have said that generics did not work well for them. a relative of mine, who was using generic, had her tsh climb to 40 before she realized, whoops, time to change her medication. now, a lot of people do take generics, and there is a cost saving, if they work, to these.
i used to take armour thyroid supplement. i did pretty well on it, but several years ago they reformulated it. after a few months on the new formula, i did not feel very well and my tsh started to climb. i stopped this and started brand name synthroid. brand name synthroid contains sulfite preservatives. 1 out of 100 people in this country ( according to the allergy website i visited called " about allergies.com") are sensitive to sulfites. that can mean stomach upset, nausea, diarrhea, etc. i unfortunately have anaphylactic shock when i ingest sulfites. the allergy website listed synthroid as containing sulfites. i called the company to determine if this was indeed true, and they would not confirm or deny it. this was proof to me that the website was probably correct, and synthroid does contain sulfite preservatives. it is also an expensive drug, and there is that whole " television promotion by a celebrity" thing.
then, my endo prescribed levoxyl after i researched it and found out that there were no preservatives added to this drug. it was relatively inexpensive and worked well ( for me) up to now. levoxyl has been taken off the market ( some people, including my endo, believe that it will not be coming back) because of a potency issue. the official line from the manufacturer of levoxyl is that they " can not guarantee the stability of the drug up to the expiration date". i am just guessing that if it were to come back, the company would add preservatives, but of course i have no knowledge one way or the other if it will come back.
decisions, decisions. since i have the whole sulfite preservative thing to consider, on top of everything else, i have called my endo and requested that she change me to a drug called Tirosint. i called the company( one of the perks of my job- i can play the pharmacist card) and asked them if they added sulfite preservatives to Tirosint. they said no- no sulfites or any other preservatives in this drug. i asked for it in writing, which they faxed to me.( i tend to be somewhat mistrustful, after having experienced many anaphylactic reactions in the past.). besides being preservative free, you can drink your coffee or tea immediately after taking Tirosint. of course, you would still want to wait 30-60 minutes before eating. the downside of this drug is the price. it is expensive, and i do not know yet what my co-pay will be, but i am sure it will NOT be $4.00. i also have no idea how it will effect my tsh, or other thyroid function indicator blood levels. being a thyroid cancer patient, i sure do not want any stimulation of any thyroid cancer cells which may be lurking around somewhere in my body. having a near zero tsh is important- crucial- to me. i will go back for blood work, if my endo approves the switch, after a month or so.
i will let everyone know how this works out for me. there are some other natural thyroid supplements out there, as well as cytomel- which is just a t3 supplement.( you need either t4 or a combo of t4 & t3 for your thyroid/ body to be happy.) i did not discuss them, but they are viable choices as well. i am interested as to what people who were previously on levoxyl, are taking now. feel free to tell me about your " thyroid replacement drug"- if you are happy with the switch, and how you are feeling. i know that we are all different- there is no perfect one drug for everyone. i hope this info has helped you and your doctor make a decision as to what drug may work best for you.short of a trip to the emerald city, just make your best guess and be prepared to try again. good luck to all.
i will discuss, and this is my opinion- based on my knowledge and experience- some personal, the different choices( or lack thereof) we thyroid patients now have when choosing a thyroid replacement drug. patients need to be informed about the different choices, and discuss this with their health care provider. only then can one hope to pick the right one. this process may be a sort of trial and error one. the patient/doctor may choose one, do lab work after a certain amount of time, and then decide to stay the course, or choose another drug if necessary.
i will just use myself, supplementing with patients, family and friends- who shall remain nameless- as examples. first off, i do not like generic ( levothyroxine) . too many patients of mine have said that generics did not work well for them. a relative of mine, who was using generic, had her tsh climb to 40 before she realized, whoops, time to change her medication. now, a lot of people do take generics, and there is a cost saving, if they work, to these.
i used to take armour thyroid supplement. i did pretty well on it, but several years ago they reformulated it. after a few months on the new formula, i did not feel very well and my tsh started to climb. i stopped this and started brand name synthroid. brand name synthroid contains sulfite preservatives. 1 out of 100 people in this country ( according to the allergy website i visited called " about allergies.com") are sensitive to sulfites. that can mean stomach upset, nausea, diarrhea, etc. i unfortunately have anaphylactic shock when i ingest sulfites. the allergy website listed synthroid as containing sulfites. i called the company to determine if this was indeed true, and they would not confirm or deny it. this was proof to me that the website was probably correct, and synthroid does contain sulfite preservatives. it is also an expensive drug, and there is that whole " television promotion by a celebrity" thing.
then, my endo prescribed levoxyl after i researched it and found out that there were no preservatives added to this drug. it was relatively inexpensive and worked well ( for me) up to now. levoxyl has been taken off the market ( some people, including my endo, believe that it will not be coming back) because of a potency issue. the official line from the manufacturer of levoxyl is that they " can not guarantee the stability of the drug up to the expiration date". i am just guessing that if it were to come back, the company would add preservatives, but of course i have no knowledge one way or the other if it will come back.
decisions, decisions. since i have the whole sulfite preservative thing to consider, on top of everything else, i have called my endo and requested that she change me to a drug called Tirosint. i called the company( one of the perks of my job- i can play the pharmacist card) and asked them if they added sulfite preservatives to Tirosint. they said no- no sulfites or any other preservatives in this drug. i asked for it in writing, which they faxed to me.( i tend to be somewhat mistrustful, after having experienced many anaphylactic reactions in the past.). besides being preservative free, you can drink your coffee or tea immediately after taking Tirosint. of course, you would still want to wait 30-60 minutes before eating. the downside of this drug is the price. it is expensive, and i do not know yet what my co-pay will be, but i am sure it will NOT be $4.00. i also have no idea how it will effect my tsh, or other thyroid function indicator blood levels. being a thyroid cancer patient, i sure do not want any stimulation of any thyroid cancer cells which may be lurking around somewhere in my body. having a near zero tsh is important- crucial- to me. i will go back for blood work, if my endo approves the switch, after a month or so.
i will let everyone know how this works out for me. there are some other natural thyroid supplements out there, as well as cytomel- which is just a t3 supplement.( you need either t4 or a combo of t4 & t3 for your thyroid/ body to be happy.) i did not discuss them, but they are viable choices as well. i am interested as to what people who were previously on levoxyl, are taking now. feel free to tell me about your " thyroid replacement drug"- if you are happy with the switch, and how you are feeling. i know that we are all different- there is no perfect one drug for everyone. i hope this info has helped you and your doctor make a decision as to what drug may work best for you.short of a trip to the emerald city, just make your best guess and be prepared to try again. good luck to all.
Monday, May 13, 2013
" there's a dark and a troubled side of life. there's a bright and a sunny side,too. though we meet with the darkness and strife, the sunny side we also may view. keep on the sunny side, always on the sunny side. keep on the sunny side of life. it will help us every day, it will brighten all the way, if we keep on the sunny side of life.. " keep on the sunny side - the carter family
if you can find a way to " keep on the sunny side of life" then it is a win-win for you. and this goes for everyone- not just thyroid cancer survivors. i tend to be a pollyanna type of person overall. not to say that i have not cried me a river over "thyroid cancer" stuff, but generally i feel sorry for myself for a couple of days, then move on. as i have said in the past, my job, where i see all sorts of cancer patients, sort of keeps me grounded. as bad as you feel, there is always someone who is dealing with problems that are way worse than yours.
i am proud to announce that on may 19th( this coming sunday) i will be a three year cancer survivor! yeah! last year i was working on that day. this year i will be visiting with my daughter and son-in-law for the weekend. we plan on going to her zumba class that saturday, and of course, some retail therapy afterwards. i am trying to get back to regular zumba classes. i have been going sporadically, but seem to keep having knee problems.(yes, i know that zumba is not the greatest thing for your knees). i have modified my moves a little- don't worry, i can still shake my belly skirt( no knees involved here)- in hopes that i will not re-injure my knee. for me, zumba is a stress reliever and it makes me happy. i know that for some people, it is running, yoga, swimming,etc. that works as a stress reliever. whatever makes you happy and helps keep you fit is so important. some people say that they just do not have time, but if you do not take care of yourself now, you will be in trouble later. and again, in my work, i see too many people who have neglected their good health in the past, and are paying for it now.
this weekend, i had the pleasure of meeting another thyroid cancer survivor. she is a woman, about my age, who had to have two surgeries on her neck within about a ten day time frame. she says that she should have gotten a second opining before beginning her " thyroid cancer journey", but did not. i told her that you just have to make tough decisions sometimes and go with them. what is past is past, and there is no where to go now but the future. i recommended some books, websites,etc, for her, and sincerely hope that she can make future decisions about her health care that will be better for her. i really hate that things have been so difficult for her, but i am hopeful that going forward, things will be better. i suppose that this is" keeping on the sunny side of life". it is impossible not to rehash the past, and wish that you had done some things differently, but it really does not help. unless of course you are offering up advice that might help another person make a decision about their health care.
that is one of the reasons for me writing this blog. it helps me to express what i have been going through, and i sincerely hope that my experiences can help someone else who is dealing with thyroid cancer. it is important to know that we, thyroid cancer patients, are not alone and there is help and information out there! so learn from others( even their mistakes), exercise to keep your mind and body healthy, and try to keep on the sunny side. a good sense of humor always helps - whatever might come your way.
i am proud to announce that on may 19th( this coming sunday) i will be a three year cancer survivor! yeah! last year i was working on that day. this year i will be visiting with my daughter and son-in-law for the weekend. we plan on going to her zumba class that saturday, and of course, some retail therapy afterwards. i am trying to get back to regular zumba classes. i have been going sporadically, but seem to keep having knee problems.(yes, i know that zumba is not the greatest thing for your knees). i have modified my moves a little- don't worry, i can still shake my belly skirt( no knees involved here)- in hopes that i will not re-injure my knee. for me, zumba is a stress reliever and it makes me happy. i know that for some people, it is running, yoga, swimming,etc. that works as a stress reliever. whatever makes you happy and helps keep you fit is so important. some people say that they just do not have time, but if you do not take care of yourself now, you will be in trouble later. and again, in my work, i see too many people who have neglected their good health in the past, and are paying for it now.
this weekend, i had the pleasure of meeting another thyroid cancer survivor. she is a woman, about my age, who had to have two surgeries on her neck within about a ten day time frame. she says that she should have gotten a second opining before beginning her " thyroid cancer journey", but did not. i told her that you just have to make tough decisions sometimes and go with them. what is past is past, and there is no where to go now but the future. i recommended some books, websites,etc, for her, and sincerely hope that she can make future decisions about her health care that will be better for her. i really hate that things have been so difficult for her, but i am hopeful that going forward, things will be better. i suppose that this is" keeping on the sunny side of life". it is impossible not to rehash the past, and wish that you had done some things differently, but it really does not help. unless of course you are offering up advice that might help another person make a decision about their health care.
that is one of the reasons for me writing this blog. it helps me to express what i have been going through, and i sincerely hope that my experiences can help someone else who is dealing with thyroid cancer. it is important to know that we, thyroid cancer patients, are not alone and there is help and information out there! so learn from others( even their mistakes), exercise to keep your mind and body healthy, and try to keep on the sunny side. a good sense of humor always helps - whatever might come your way.
Monday, April 22, 2013
".... don't you know i'm still standing better than i ever did. looking like a true survivor, feeling like a little kid. i'm still standing after all this time. picking up the pieces of my life without you on my mind. i'm still standing, yeah, yeah, yeah. " i'm still standing , by elton john
after several calls back and forth to my endo, don't you just love, love phone tag? i found out that my endo HAS been using color, doppler ultrasound. as to why my test only takes about 5-10 minutes and not 45 as recommended by thyca, i can not be sure. my doctor's nurse assured me that they were using the correct test ( she called the place that i called for a second test ) which will detect small movement in blood flow around small tumors or suspicious lymph nodes. i feel better, but at my next test- in september- i am going to be armed with lots of questions for the ultra sound technician, as well as my doctor. i will resemble someone from the " show me" state, you can be sure.
it took me a long time to get my cancer diagnosis. i wasted valuable time, literally, listening to another endo tell me that my " weird " blood tests were caused by stress. after a time, too long admittedly, i left his practice to go to my current endo. she ordered the biopsy, and the rest is history, i guess. because of this, i am passionate about thyroid and thyroid cancer patients getting second opinions if they are not comfortable with their condition or treatment. patients should read books, go to respected internet sites,keep copies of their tests,just to name a few things. everyone should be their own patient advocate. think about it- you need to be able to trust your doctor of course, but what you are dealing here is your life.
i faxed the sheet from thyca with the ultrasound information to my doctor. she asked that i do so. i appreciate that she is interested, and never has used the word " stress" with me! everyone has stress of some sort in their lives, and it certainly affects our lives and overall health, but sometimes it becomes the easy out. instead of digging into what might have been causing my strange blood tests, fatigue, etc. my former doctor chose to blame it on stress. when i was diagnosed with papillary thyroid cancer i was already in stage three. it had spread to two of my parathyroids and lymphatic system. i wish that i had been diagnosed earlier, of course, but at this point i can just go forward. i have to pay attention to what tests are being done, how i feel, and while i trust my doctor( she saved my life) i have to still do what is best for me.
in my practice, i seem to be a magnet for thyroid cancer patients. i met another person just this past week. he came in to ask about a vitamin to boost his immune system, (FYI: vitamin D is much better for that than vitamin C ) , but on further discussion, i learned that he was a "new" thyroid cancer patient. he had just had his surgery and was facing the I-131 treatment. he did not know what kind of thyroid cancer that he had, what stage he was in, or anything at all about the I-131. i told him how the I-131 works, and what side effects he might encounter. i asked him to please come in and ask questions, and i would do my best to help him. i also asked that he please let me know how he is doing.
some people are just lucky i guess. they move through life and get the correct treatment without any effort on their part. but in the majority of cases, we must make good choices and be informed if we are to be successful in taking care of ourselves.
it took me a long time to get my cancer diagnosis. i wasted valuable time, literally, listening to another endo tell me that my " weird " blood tests were caused by stress. after a time, too long admittedly, i left his practice to go to my current endo. she ordered the biopsy, and the rest is history, i guess. because of this, i am passionate about thyroid and thyroid cancer patients getting second opinions if they are not comfortable with their condition or treatment. patients should read books, go to respected internet sites,keep copies of their tests,just to name a few things. everyone should be their own patient advocate. think about it- you need to be able to trust your doctor of course, but what you are dealing here is your life.
i faxed the sheet from thyca with the ultrasound information to my doctor. she asked that i do so. i appreciate that she is interested, and never has used the word " stress" with me! everyone has stress of some sort in their lives, and it certainly affects our lives and overall health, but sometimes it becomes the easy out. instead of digging into what might have been causing my strange blood tests, fatigue, etc. my former doctor chose to blame it on stress. when i was diagnosed with papillary thyroid cancer i was already in stage three. it had spread to two of my parathyroids and lymphatic system. i wish that i had been diagnosed earlier, of course, but at this point i can just go forward. i have to pay attention to what tests are being done, how i feel, and while i trust my doctor( she saved my life) i have to still do what is best for me.
in my practice, i seem to be a magnet for thyroid cancer patients. i met another person just this past week. he came in to ask about a vitamin to boost his immune system, (FYI: vitamin D is much better for that than vitamin C ) , but on further discussion, i learned that he was a "new" thyroid cancer patient. he had just had his surgery and was facing the I-131 treatment. he did not know what kind of thyroid cancer that he had, what stage he was in, or anything at all about the I-131. i told him how the I-131 works, and what side effects he might encounter. i asked him to please come in and ask questions, and i would do my best to help him. i also asked that he please let me know how he is doing.
some people are just lucky i guess. they move through life and get the correct treatment without any effort on their part. but in the majority of cases, we must make good choices and be informed if we are to be successful in taking care of ourselves.
Sunday, April 7, 2013
"...whether you're a brother, or whether you're a mother, you're stayin' alive, stayin' alive, feel the city breaking and everybody shaking, and we're stayin' alive, stayin' alive. ...got the wings of heaven on my shoes, i'm a dancing man and i just can't lose. ...life going nowhere, somebody help me, ...yeah, i'm stayin' alive, stayin' alive. " stayin' alive by the bee gees
it seems that i have a wee bit of a problem. i still have thyroglobulin antibodies. i would not have known this, but i requested a copy of my last blood work for my records- remember that i am always telling people to do this? get copies of your tests and labs and put them in a folder so that you will know what your "numbers" are and can make intelligent, knowledgeable decisions. my doctor did not go over this with me when i was in her office last time. she went over my other test results- no thyroblobulin, and nothing showing on the ultrasound..... now, here is the tricky part of the report- the one i just happened to see when i looked over the results.
some people( i just have to be different, i guess) have thyroglobulin antibodies. these attack, or work against, the thyroglobulin in our bodies. sounds good? no, not really- if you are a thyroid cancer patient and your doctor is measuring the thyroglobulin in your blood stream to determine if you have recurrent disease. if you have thyroglobulin antibodies like i do, and they have not gone away( some people have them at first, then they go away, to wherever, after the surgery/ I-131. ) then you could get a FALSE NEGATIVE report. in other words, you could be celebrating good news a little too early.
according to new research reported by thyca, " an ultrasound should be one of the first tests in monitoring a patient for recurrence, especially in patients where thyroglobulin antibodies are an issue". of course you probably remember that i said that my doctor always does an ultrasound at my "testing time" along with the blood work. thyca recommends that the device needs to be a POWER DOPPLER AND COLOR DOPPLER in order for the entire spectrum to be seen properly. doppler ultrasound detects the movement of blood around tumors. increased blood flow can be a strong marker for a tumor. not only that, but the scanning procedure should " take at least 45 minutes in order to be thorough". and it gets even better: " the average ultasonography technician may be very good on other ultrasounds, but requires special training for thyroid examination."
jeez. my ultrasound took no more than five minutes. and i am pretty sure that it was not a power/color doppler. i am not sure how much training the technician has, but i am fairly certain that the ultrasounds i have been having over the past two years have been, basically, worthless. now what? i know that papillary thyroid cancer, even" stage three, and intermediate risk"- which was what mine is/was has a pretty good survival rate. unfortunately, it also has a rather high recurrence rate- which is about 30%. i also found out from thyca that there should be " lifelong surveillance". EXCUSE ME, but with all the stress that comes along with testing, i need to know that at least the tests are accurate. i have no problems with the blood work part, but i am now going to try to locate a facility that uses the power/color doppler. i am not sure how i will do this, but i am going to start looking now. my next test is not until september, but honestly, i need to have this done pretty soon- and with the correct equipment.
i would like to have this test done in the winston-salem, charlotte, raleigh-durham-chapel hill area, but if need be, i could go outside of north carolina. if anyone out there knows of a place where i might get the power/color doppler done, please shoot me an email. i would really appreciate it. i probably do not need to say this at this point, but everyone out there, please keep copies of your tests and blood work. be your own patient advocate, and best health and best wishes to everyone.
some people( i just have to be different, i guess) have thyroglobulin antibodies. these attack, or work against, the thyroglobulin in our bodies. sounds good? no, not really- if you are a thyroid cancer patient and your doctor is measuring the thyroglobulin in your blood stream to determine if you have recurrent disease. if you have thyroglobulin antibodies like i do, and they have not gone away( some people have them at first, then they go away, to wherever, after the surgery/ I-131. ) then you could get a FALSE NEGATIVE report. in other words, you could be celebrating good news a little too early.
according to new research reported by thyca, " an ultrasound should be one of the first tests in monitoring a patient for recurrence, especially in patients where thyroglobulin antibodies are an issue". of course you probably remember that i said that my doctor always does an ultrasound at my "testing time" along with the blood work. thyca recommends that the device needs to be a POWER DOPPLER AND COLOR DOPPLER in order for the entire spectrum to be seen properly. doppler ultrasound detects the movement of blood around tumors. increased blood flow can be a strong marker for a tumor. not only that, but the scanning procedure should " take at least 45 minutes in order to be thorough". and it gets even better: " the average ultasonography technician may be very good on other ultrasounds, but requires special training for thyroid examination."
jeez. my ultrasound took no more than five minutes. and i am pretty sure that it was not a power/color doppler. i am not sure how much training the technician has, but i am fairly certain that the ultrasounds i have been having over the past two years have been, basically, worthless. now what? i know that papillary thyroid cancer, even" stage three, and intermediate risk"- which was what mine is/was has a pretty good survival rate. unfortunately, it also has a rather high recurrence rate- which is about 30%. i also found out from thyca that there should be " lifelong surveillance". EXCUSE ME, but with all the stress that comes along with testing, i need to know that at least the tests are accurate. i have no problems with the blood work part, but i am now going to try to locate a facility that uses the power/color doppler. i am not sure how i will do this, but i am going to start looking now. my next test is not until september, but honestly, i need to have this done pretty soon- and with the correct equipment.
i would like to have this test done in the winston-salem, charlotte, raleigh-durham-chapel hill area, but if need be, i could go outside of north carolina. if anyone out there knows of a place where i might get the power/color doppler done, please shoot me an email. i would really appreciate it. i probably do not need to say this at this point, but everyone out there, please keep copies of your tests and blood work. be your own patient advocate, and best health and best wishes to everyone.
Monday, March 25, 2013
"....sometimes the lights all shining on me. other times, i can barely see. lately it occurs to me, what a long, strange trip it's been. " Trucking, by the grateful dead
"testing time " puts me in a strange mood. i will admit it. so, here is the good news: no goblins in my neck and no thyroglobulin in my bloodstream. when my endocrinologist told me this, she looked at me and said, now why are we doing this every six months? ( here is the bad news). after a very pregnant pause, during which time i was holding my breath- so long that i think i could dive for pearls now, she said, oh i see! don't you just hate it when your doctor is reading the information on your chart and she/he gives you THAT LOOK. and by that look i mean that she is surprised that you are still sitting there before her.
you see, i had one bad test right after my huge treatment dose of I-131. i had thyroglobulins out the wazoo in my bloodstream. little darth vaders if you will, going after other parts of my body that were just minding their own business. i found out about this from the nurse. now everyone knows that only the doctor gives you bad news. but on this day, and yes i was at work, the nurse called to give me my results. in her defense, she did not have any idea of the size atom bomb she was dropping on me. i was of course, upset, and left work early that day. my daughter asked me why don't they do something? can't they give you more of the I-131? ( what a pleasant thought!). when i got my treatment dose, the radiologist told me that my dose was so large ( 155 milicuries) that they could not administer more of the I-131, even if they wanted to, for at least six months.
when i went for my results this time, my doctor told me that she had no idea what had happened to me. to have one bad test, and then three good ones is unusual i guess. she told me that she only has one other patient who has done the same thing that i have done-had a bad test, and then for seemingly no reason, gone into remission. she told me that she could not begin to say that i am " cured",though, and i have to continue on with the every six months ultrasound, bloodwork, etc, i have mixed feelings about this. while i get majorly stressed out about the testing, i think that i would worry more, considering that one bad test, if my doctor did not do the testing every six months. i have not explored treatment options if i were to have another bad test. i assume that it would mean another dose of the I-131, and perhaps radiation if it had reoccurred in my neck area.
but for now, life is good. i am going back to zumba this week( boy do i need it!) whether my knee is up to it or not. i just have to make it lower impact, i,e. not try so hard to keep up with the 20 year olds in the class. yep, i am going to wipe the dust off of the gold coins on my belly scarf, dig my exercise tee shirt out of the wash, and pray that my exercise pants still fit! i am truly thankful that i received good news, and i plan to make the best of it. i will be just fine, that is, until september.............
you see, i had one bad test right after my huge treatment dose of I-131. i had thyroglobulins out the wazoo in my bloodstream. little darth vaders if you will, going after other parts of my body that were just minding their own business. i found out about this from the nurse. now everyone knows that only the doctor gives you bad news. but on this day, and yes i was at work, the nurse called to give me my results. in her defense, she did not have any idea of the size atom bomb she was dropping on me. i was of course, upset, and left work early that day. my daughter asked me why don't they do something? can't they give you more of the I-131? ( what a pleasant thought!). when i got my treatment dose, the radiologist told me that my dose was so large ( 155 milicuries) that they could not administer more of the I-131, even if they wanted to, for at least six months.
when i went for my results this time, my doctor told me that she had no idea what had happened to me. to have one bad test, and then three good ones is unusual i guess. she told me that she only has one other patient who has done the same thing that i have done-had a bad test, and then for seemingly no reason, gone into remission. she told me that she could not begin to say that i am " cured",though, and i have to continue on with the every six months ultrasound, bloodwork, etc, i have mixed feelings about this. while i get majorly stressed out about the testing, i think that i would worry more, considering that one bad test, if my doctor did not do the testing every six months. i have not explored treatment options if i were to have another bad test. i assume that it would mean another dose of the I-131, and perhaps radiation if it had reoccurred in my neck area.
but for now, life is good. i am going back to zumba this week( boy do i need it!) whether my knee is up to it or not. i just have to make it lower impact, i,e. not try so hard to keep up with the 20 year olds in the class. yep, i am going to wipe the dust off of the gold coins on my belly scarf, dig my exercise tee shirt out of the wash, and pray that my exercise pants still fit! i am truly thankful that i received good news, and i plan to make the best of it. i will be just fine, that is, until september.............
Tuesday, March 12, 2013
" you go back, jack, do it again, wheels turning 'round and ' round, you go back, jack, do it again. " steeley dan
tomorrow it is time for my six month cancer check up. my husband and i are driving down to raleigh and i have an appointment for blood work, and also an ultrasound of my neck. the ultrasound will check for goblins( aka, growths that should not be there- perhaps caused by rogue thyroid cancer cells). the blood work will be checking for thyroglobulin and thyroglobulin antibodies- two markers for thyroid cancer cells, also rogue, that may be causing mayhem somewhere else in my body. my reveal show is next week, when i have an appointment with my doctor. she will go over my results, and hopefully all we will do is schedule the repeat tests six months from now- which will be in september.
i have ambivalent feelings about these six months check ups. of course, i am thankful that my endocrinologist keeps a close eye on things. i asked her one time if five years was a good " everything is o.k." marker. she said, " well, actually, i just had a patient come back who has had a recurrence after seven years. " bummer. this may, i will have been in remission for three years. i guess i have a while to go before i can assume that everything is o.k. every time i have these tests, i have days of self reflection, sadness, joy, and yes, sometimes, anger. i have never asked " why me?", because in my line of work i have seen so many good people dealing with health issues much worse than i have. i guess my " anger" comes from the realization that i may not be around to see all of my grandchildren, or enjoy time with my husband, or support my children. i am thankful for every day that i have with them, and hopefully i will have a lot more time to be with them.
next week, after my doctor's appointment, i will blog and let everyone know how things went. until then, happy st. patricks day, and bring on spring!
i have ambivalent feelings about these six months check ups. of course, i am thankful that my endocrinologist keeps a close eye on things. i asked her one time if five years was a good " everything is o.k." marker. she said, " well, actually, i just had a patient come back who has had a recurrence after seven years. " bummer. this may, i will have been in remission for three years. i guess i have a while to go before i can assume that everything is o.k. every time i have these tests, i have days of self reflection, sadness, joy, and yes, sometimes, anger. i have never asked " why me?", because in my line of work i have seen so many good people dealing with health issues much worse than i have. i guess my " anger" comes from the realization that i may not be around to see all of my grandchildren, or enjoy time with my husband, or support my children. i am thankful for every day that i have with them, and hopefully i will have a lot more time to be with them.
next week, after my doctor's appointment, i will blog and let everyone know how things went. until then, happy st. patricks day, and bring on spring!
Wednesday, March 6, 2013
TED- no, i am not talking about a little teddy bear who presented at the oscars this year, and has a penchant for being naughty, i am going to try to discuss THYROID EYE DISEASE, aka, TED
in researching this subject, i found out that i really do not know that much about TED. nor, it seems, does the medical community. TED can be present- and it is most often diagnosed in hyperthyroid disease, namely, graves disease. it can cause extension of the eyeballs- a classic symptom. it is an autoimmune disease, that sometimes hangs out with another autoimmune disease- hashimoto's disease. hashimoto's disease is a hypothyroid condition. so, i will tell you what i have found about about TED, but i will encourage anyone experiencing eye difficulties of any sort, to please see a physician. while your doctor is the only one who can make the diagnosis, you- as always, and in all medical conditions- have the final say in your treatment.
some symptoms of TED include: dryness, a gritty feeling in the eye- you know, like you have sand or something in there, excessive watering of the eye, pain upon looking up or sideways, bulging of the eyeball, double or blurred vision, redness, irritation, sensitivity to light or wind, just to name a few. of course, some of these symptoms may be misdiagnosed as" pink eye" ( a bacterial infection) or allergies. so how do we know?
some patients have reported that they have more TED symptoms when their thyroid hormone is too low. others may need to reduce their thyroid level dose- those with graves disease, perhaps. a visit to an ophthalmologist ( eye doctor) may be in order to obtain a diagnosis. it is good to have your thyroid level checked, as well as a thyroid-stimulating antibody test. obviously, you need to choose a physician wisely. someone with experience in treating TED. there are other, more costly tests- CT or MRI tests for example.
treatment depends on the stage or severity of TED. steroids are an option, but to be honest, i am not a big fan of steroids. personally, i think that steroids have multiple side effects and there is a chance that when a patient stops taking the steroid for TED symptoms, they may become worse. of course, as with ANY medication, you have to weigh the benefits versus side effects before deciding on a course of treatment. simple treatments include artificial tear drops and/or a lubricating ointment.
when i was researching this topic, i was frustrated in how little is known about this disorder. if you are a thyroid cancer patient , like me, and have received RAI as part of your treatment, then constant eye watering may be a side effect of the RAI and not necessarily TED. this constant watering may be caused by the RAI blocking a tear duct. if this is the case, a physician can possibly un-block the tear duct, and that may take care of the constant watering.
here are three more things to note: 1) TED can get better on it's own. 2) smokers are way more prone to TED than non-smokers and 3) there is a website which is supported by the Thyroid Eye Disease Association. i suggest that anyone with concerns, or who feels that they need more info on this subject check it out. the TED association goes deeper into the details of treatment, symptoms, etc, and would offer more support for those suffering from TED.
some symptoms of TED include: dryness, a gritty feeling in the eye- you know, like you have sand or something in there, excessive watering of the eye, pain upon looking up or sideways, bulging of the eyeball, double or blurred vision, redness, irritation, sensitivity to light or wind, just to name a few. of course, some of these symptoms may be misdiagnosed as" pink eye" ( a bacterial infection) or allergies. so how do we know?
some patients have reported that they have more TED symptoms when their thyroid hormone is too low. others may need to reduce their thyroid level dose- those with graves disease, perhaps. a visit to an ophthalmologist ( eye doctor) may be in order to obtain a diagnosis. it is good to have your thyroid level checked, as well as a thyroid-stimulating antibody test. obviously, you need to choose a physician wisely. someone with experience in treating TED. there are other, more costly tests- CT or MRI tests for example.
treatment depends on the stage or severity of TED. steroids are an option, but to be honest, i am not a big fan of steroids. personally, i think that steroids have multiple side effects and there is a chance that when a patient stops taking the steroid for TED symptoms, they may become worse. of course, as with ANY medication, you have to weigh the benefits versus side effects before deciding on a course of treatment. simple treatments include artificial tear drops and/or a lubricating ointment.
when i was researching this topic, i was frustrated in how little is known about this disorder. if you are a thyroid cancer patient , like me, and have received RAI as part of your treatment, then constant eye watering may be a side effect of the RAI and not necessarily TED. this constant watering may be caused by the RAI blocking a tear duct. if this is the case, a physician can possibly un-block the tear duct, and that may take care of the constant watering.
here are three more things to note: 1) TED can get better on it's own. 2) smokers are way more prone to TED than non-smokers and 3) there is a website which is supported by the Thyroid Eye Disease Association. i suggest that anyone with concerns, or who feels that they need more info on this subject check it out. the TED association goes deeper into the details of treatment, symptoms, etc, and would offer more support for those suffering from TED.
Thursday, February 21, 2013
WHAT ARE THOSE PESKY LITTLE PARATHYROIDS, AND WHAT THE HECK DO THEY DO?
i like to joke around a little and say that two of my parathyroids left me and moved to Paraguay! ( i guess that is easier than the truth- that two of my parathyroids were cancerous and had to be removed). it was then and only then- you know the saying, you only miss something when it is gone- that i really started to think about our parathyroids. what are they, what do they do, and why are they soooooo important?
well, they live near our thyroid gland- hence the name parathyroids. a fun fact, if you are a science nerd like me, is that most people have four of these, but some people have three, or even up to six! it would be sort of hard on the little guy, but you actually can get by pretty well with just one parathyroid gland. you do need at least one, as i said. if you happen to think being hypothyroid is difficult, being hypoparathyroid seems ( to me, anyway) to be worse. the symptoms of hypoparathyroidism are as follows: muscle cramps/spasms,numbness or tingling in the hands or feet, tingling of the lips and in worst case scenarios, seizures. uh, no, thank you.
our parathyroids are small glands near our thyroid glands. they look a little like a lymph node, and they produce a hormone called( and brilliantly, i might add) parathyroid hormone, or PTH. our parathyroids do NOT make thyroid hormone, but the PTH they produce regulates the calcium in our bodies. the PTH also increases the activation of vitamin d in our bodies. i could get more involved here, but i think you get the idea. as long as we can hang onto one parathyroid gland, life is good. if there is cancer present in all of the parathyroids, or you unfortunately get a surgeon who is not skilled in saving the little guys, then hypoparathyroidism occurs. hypoparathyroidism can be treated of course, with mega doses of calcium and a drug called calcitriol, which helps with the absorption of calcium. needless to say, people who have hypoparathyroidism need to have their calcium levels checked regularly. there is also a more sensitive test for measuring calcium -it is called an ionized calcium level, which is usually reserved for those people dealing with hypoparathyroidism.
well, now, kind of makes you appreciate those parathyroid glands. who knew, right? after my surgery, my surgeon was afraid that the blood supply had been cut off to my remaining two parathyroid glands. i was given large doses of IV calcium in the hospital, as well as calcitrol, and 12,000mg, yes, i said 12,000mg, of calcium per day. he prescribed this for one month, and then checked my calcium level. so far, my two remaining parathyroids are working pretty hard. my calcium level runs a little low, but is not in the hypo range. an interesting side note- when i asked my surgeon where he put my parathyroid glands since my butterfly had flown away, he said that he " just threw them back in there". i never got the answer to my question, but i would imagine that they are attached to some friendly " vessel". interestingly enough, sometimes the surgeon will put them in a patients forearm. i am not sure why this would be a good idea, but it would provide easier access i guess. regardless of where they are placed or " thrown back into" they need a good blood supply to pick up the PTH and get on with the business of regulating calcium levels in our bodies.
Note: i published this blog back in 2013, but wanted to republish it now. i am going to discuss vitamin d levels, and this is a part of that subject.
well, they live near our thyroid gland- hence the name parathyroids. a fun fact, if you are a science nerd like me, is that most people have four of these, but some people have three, or even up to six! it would be sort of hard on the little guy, but you actually can get by pretty well with just one parathyroid gland. you do need at least one, as i said. if you happen to think being hypothyroid is difficult, being hypoparathyroid seems ( to me, anyway) to be worse. the symptoms of hypoparathyroidism are as follows: muscle cramps/spasms,numbness or tingling in the hands or feet, tingling of the lips and in worst case scenarios, seizures. uh, no, thank you.
our parathyroids are small glands near our thyroid glands. they look a little like a lymph node, and they produce a hormone called( and brilliantly, i might add) parathyroid hormone, or PTH. our parathyroids do NOT make thyroid hormone, but the PTH they produce regulates the calcium in our bodies. the PTH also increases the activation of vitamin d in our bodies. i could get more involved here, but i think you get the idea. as long as we can hang onto one parathyroid gland, life is good. if there is cancer present in all of the parathyroids, or you unfortunately get a surgeon who is not skilled in saving the little guys, then hypoparathyroidism occurs. hypoparathyroidism can be treated of course, with mega doses of calcium and a drug called calcitriol, which helps with the absorption of calcium. needless to say, people who have hypoparathyroidism need to have their calcium levels checked regularly. there is also a more sensitive test for measuring calcium -it is called an ionized calcium level, which is usually reserved for those people dealing with hypoparathyroidism.
well, now, kind of makes you appreciate those parathyroid glands. who knew, right? after my surgery, my surgeon was afraid that the blood supply had been cut off to my remaining two parathyroid glands. i was given large doses of IV calcium in the hospital, as well as calcitrol, and 12,000mg, yes, i said 12,000mg, of calcium per day. he prescribed this for one month, and then checked my calcium level. so far, my two remaining parathyroids are working pretty hard. my calcium level runs a little low, but is not in the hypo range. an interesting side note- when i asked my surgeon where he put my parathyroid glands since my butterfly had flown away, he said that he " just threw them back in there". i never got the answer to my question, but i would imagine that they are attached to some friendly " vessel". interestingly enough, sometimes the surgeon will put them in a patients forearm. i am not sure why this would be a good idea, but it would provide easier access i guess. regardless of where they are placed or " thrown back into" they need a good blood supply to pick up the PTH and get on with the business of regulating calcium levels in our bodies.
Note: i published this blog back in 2013, but wanted to republish it now. i am going to discuss vitamin d levels, and this is a part of that subject.
Sunday, February 10, 2013
"low vitamin d levels and the hypothyroid connection". here is my disclaimer: no scientists were harmed in the writing of this blog. the opinions expressed are solely those of the author. ( hint: me)
for some time now, i have been fascinated by the connection between low vitamin d levels, and hypothyroid disease- especially thyroid cancer. i have experienced low vitamin d myself, and have known countless patients who have low vitamin d levels and also have hypothyroid disease or thyroid cancer.
just to review, vitamin d is so important for the body because it aids in the absorption of calcium and phosphorous, which is important for strong bones. since this vitamin seems to be the " it" vitamin right now, research is being conducted on the importance/ roles of vitamin d in our body. new studies on the benefits of good vitamin d levels and the effects on our bodies seem to be coming out every day. an adequate level of vitamin d is important for strong bones, and may be helpful in reducing high blood pressure, and protecting us from some cancers- especially autoimmune ones( hint: thyroid). vitamin d is also thought to help prevent colon cancer, breast cancer, and one study finds that some patients with blood cancers have much improved survival rates with optimal levels of vitamin d. ( this study was cited by the mayo clinic website, if you want additional information on this).
what is an optimal level of vitamin d? it gets tricky here. doctors differ on what they think is the optimal range, and of course testing from lab to lab varies. i will quote an article from the mayo clinic website which states that " in routine health check ups, between one- fourth and one-half of patients seen have vitamin d levels below the optimal range". i will now just throw out the range that my lab uses: from 30 to 80 ng/ml is the optimal range. my doctor feels that thyroid cancer patients should have a value of at least 60ng/ml. a level over 80ng/ml may cause some kidney problems, so one needs to stay in the correct range. taking the correct dose of vitamin d and having the vitamin d level checked is very important. the over the counter supplements come in doses up to 5,000 units. the prescription dose, and the dose i am currently on, is 50,000 units. this is taken once or twice a week, depending on the patient's level and what the physician feels is appropriate therapy.
several years ago, when i was sick, and before the doctors knew what was wrong with me, my doctor checked my vitamin d level. it was less than 10ng/ml. that is obviously very low, and probably was a first indicator( i think) that i might have cancer. i want to personally encourage all those patients with thyroid disease, especially thyroid cancer, to please get your vitamin d level checked, if you have not done so already.
it is also important to get adequate sunlight so that vitamin d can be activated in our bodies. i read somewhere that as little as 15 minutes a day is probably sufficient. today, we all rush to work before daylight and get home after dark. it is especially hard to get any sunlight exposure in winter. and the wide use of sunscreen makes it difficult for our bodies to get the sunlight that we need to convert vitamin d to its active form. i feel that, especially since i have also had skin cancer, sunscreen is an essential part of good health care. so please do not stop using sunscreen!
another part of the calcium/vitamin d connection is our parathyroids. i really get excited talking about the parathyroids! this will be an entire blog- for next time. i also want to talk about a side effect of the I-131-which is constant eye watering. this is something that i have just discovered, and in a related topic, there is TED, or thyroid eye disease. this is present in both hypo and hyper thyroid disorders. and how do you know, if you have had thyroid cancer and the I-131 treatment , if you have eye watering from the I-131 or you have TED? maybe by presenting the facts that are known about each, it will make things look a little clearer( no pun intended; well, maybe just a little).
just to review, vitamin d is so important for the body because it aids in the absorption of calcium and phosphorous, which is important for strong bones. since this vitamin seems to be the " it" vitamin right now, research is being conducted on the importance/ roles of vitamin d in our body. new studies on the benefits of good vitamin d levels and the effects on our bodies seem to be coming out every day. an adequate level of vitamin d is important for strong bones, and may be helpful in reducing high blood pressure, and protecting us from some cancers- especially autoimmune ones( hint: thyroid). vitamin d is also thought to help prevent colon cancer, breast cancer, and one study finds that some patients with blood cancers have much improved survival rates with optimal levels of vitamin d. ( this study was cited by the mayo clinic website, if you want additional information on this).
what is an optimal level of vitamin d? it gets tricky here. doctors differ on what they think is the optimal range, and of course testing from lab to lab varies. i will quote an article from the mayo clinic website which states that " in routine health check ups, between one- fourth and one-half of patients seen have vitamin d levels below the optimal range". i will now just throw out the range that my lab uses: from 30 to 80 ng/ml is the optimal range. my doctor feels that thyroid cancer patients should have a value of at least 60ng/ml. a level over 80ng/ml may cause some kidney problems, so one needs to stay in the correct range. taking the correct dose of vitamin d and having the vitamin d level checked is very important. the over the counter supplements come in doses up to 5,000 units. the prescription dose, and the dose i am currently on, is 50,000 units. this is taken once or twice a week, depending on the patient's level and what the physician feels is appropriate therapy.
several years ago, when i was sick, and before the doctors knew what was wrong with me, my doctor checked my vitamin d level. it was less than 10ng/ml. that is obviously very low, and probably was a first indicator( i think) that i might have cancer. i want to personally encourage all those patients with thyroid disease, especially thyroid cancer, to please get your vitamin d level checked, if you have not done so already.
it is also important to get adequate sunlight so that vitamin d can be activated in our bodies. i read somewhere that as little as 15 minutes a day is probably sufficient. today, we all rush to work before daylight and get home after dark. it is especially hard to get any sunlight exposure in winter. and the wide use of sunscreen makes it difficult for our bodies to get the sunlight that we need to convert vitamin d to its active form. i feel that, especially since i have also had skin cancer, sunscreen is an essential part of good health care. so please do not stop using sunscreen!
another part of the calcium/vitamin d connection is our parathyroids. i really get excited talking about the parathyroids! this will be an entire blog- for next time. i also want to talk about a side effect of the I-131-which is constant eye watering. this is something that i have just discovered, and in a related topic, there is TED, or thyroid eye disease. this is present in both hypo and hyper thyroid disorders. and how do you know, if you have had thyroid cancer and the I-131 treatment , if you have eye watering from the I-131 or you have TED? maybe by presenting the facts that are known about each, it will make things look a little clearer( no pun intended; well, maybe just a little).
Monday, January 28, 2013
Am i glowing? or is that just the radioactive iodine i have just had?
to quote my wonderful endocrinologist, " even the most accomplished surgeon can not possibly get all of the thyroid cancer cells." i do think that my endocrinologist is wonderful- i was not being sarcastic , but my surgeon( and his very large ego) was not so happy to hear that he may have missed some of the bad guys. so, after my cancer surgery, i had the option of having the radioactive I -131 treatment( to me it sounds like chemo- and that is what i usually call it) or not. it was a no-brainer for me. my tumors had " exploded " into my lymphatic system, to quote the radiologist, so there was no doubt in my mind that some of those nasty little thyroid cancer cells were lurking around in my body, ready to cause mayhem and possibly start some thyroid cancer tumors elsewhere in my body. yuck.
to give a little bit of an explanation why use the I-131, to date, thyroid cancer can not be treated with traditional chemotherapy. although i believe that a new drug has been approved by the FDA to treat a certain type of thyroid cancer.( i do not have all of the information about this drug, but i can research it and get back to anyone who might be interested.) . but the norm for treating thyroid cancer after surgery is still to use the I-131. thyroid cells, cancer or otherwise, love, love, love iodine. our TSH stimulates the thyroid cells to gobble up iodine. so, if our thyroid is gone we should not have any thyroid cells left to munch down on the iodine. after our thyroid surgery, the doctor will do a radioactive scan- using a small dose of radioactive iodine - that will show any thyroid cancer cells that have been left behind after the mother ship took off. to quote my radiologist again, my scan " lit up like a christmas tree." i decided that no matter what side effects that i might have, i would go ahead with the I-131 treatment.
to prepare for the treatment, i had to be on the low-iodine diet. we want those thyroid cancer cells to be very, very hungry when they do come across the radioactive iodine. my doctor recommended, and i agreed, that i get the thyrogen injections instead of being off of my medication for several weeks.i had to work, and i know that zombies are very popular now, but who wants a zombie to fill their prescription? the thyrogen injection, or being off of the thyroid hormone replacement drug, will cause a pretty large increase in TSH. TSH hormone encourages thyroid cells to eat (sort of like how your mother does ).
so i get my radioactive I- 131 dose after my two thyrogen injections ( one day apart). the technician that administered the dose looked like she was embarking from a mission to the moon. the innocent looking capsule was in a glass vial inside a lead lined box. she handed a heavily gloved hand out to me and i took the capsule and swallowed. my mouth was sort of dry, so it took a lot of water. i had an hour to get home- that was when i would officially be radioactive. the radiologist told me not to go outside for three days. i said, " if i do, will the birds fall out of the trees or something?".
90 minutes or so after my I-131 dose, i felt very nauseous. i did not toss my cookies, but i sure almost did. i drank some cola ( my mom's cure for everything) and took a nap. i felt sort of funny- but i am not sure if i was just anxious about the treatment. i did have quite a bit of hair loss- but this could have come from the removal of my thyroid and not just the I-131. the side effect that i am still dealing with, though it is not as severe as it was at first, is salivary stones . the I-131 gets into the paratid salivary glands and solidifies making " stones". it happened to get my attention for the first time when i was at work. my jaw/face swelled up and was hot to the touch. needless to say, it was painful. i have found that drinking lots of sour lemonade works just about better than anything. the sourness stimulates the salivary glands to get those stones moving. you can also use warm compresses, and taking ibuprofen may help with the pain/inflammation.
am i sorry i took the I-131? heck no. my hair grew back- mostly, though i still deal with a little more hair loss than the "average" person. the salivary stone issue has been bothersome, but if taking the I-131 has meant that i will be cancer free, as i have been for the past two and a half years, then it was worth it. everyone must make up his/her minds on this issue. RESEARCH, RESEARCH, RESEARCH!!! talk to your doctor and other health care providers, then make the best decision for you.
one thing though. i do NOT like to hear- and it is up there with " thyroid cancer is the best cancer to have" issue, that the I-131 is not without side effects. as i said, it is thyroid "chemo" to me. no, it is not as bad as traditional chemo as far as side effects go. but it is not without side effects, and i do not like to hear doctors or other health care providers trivialize this treatment. to those of you who may be undergoing this treatment now, i wish you the best of luck.
for my next blog, i will stay on the thyroid symptom train, but it will be a surprise. i,e., i have not decided on a topic yet! but it will be forthcoming this week.
to give a little bit of an explanation why use the I-131, to date, thyroid cancer can not be treated with traditional chemotherapy. although i believe that a new drug has been approved by the FDA to treat a certain type of thyroid cancer.( i do not have all of the information about this drug, but i can research it and get back to anyone who might be interested.) . but the norm for treating thyroid cancer after surgery is still to use the I-131. thyroid cells, cancer or otherwise, love, love, love iodine. our TSH stimulates the thyroid cells to gobble up iodine. so, if our thyroid is gone we should not have any thyroid cells left to munch down on the iodine. after our thyroid surgery, the doctor will do a radioactive scan- using a small dose of radioactive iodine - that will show any thyroid cancer cells that have been left behind after the mother ship took off. to quote my radiologist again, my scan " lit up like a christmas tree." i decided that no matter what side effects that i might have, i would go ahead with the I-131 treatment.
to prepare for the treatment, i had to be on the low-iodine diet. we want those thyroid cancer cells to be very, very hungry when they do come across the radioactive iodine. my doctor recommended, and i agreed, that i get the thyrogen injections instead of being off of my medication for several weeks.i had to work, and i know that zombies are very popular now, but who wants a zombie to fill their prescription? the thyrogen injection, or being off of the thyroid hormone replacement drug, will cause a pretty large increase in TSH. TSH hormone encourages thyroid cells to eat (sort of like how your mother does ).
so i get my radioactive I- 131 dose after my two thyrogen injections ( one day apart). the technician that administered the dose looked like she was embarking from a mission to the moon. the innocent looking capsule was in a glass vial inside a lead lined box. she handed a heavily gloved hand out to me and i took the capsule and swallowed. my mouth was sort of dry, so it took a lot of water. i had an hour to get home- that was when i would officially be radioactive. the radiologist told me not to go outside for three days. i said, " if i do, will the birds fall out of the trees or something?".
90 minutes or so after my I-131 dose, i felt very nauseous. i did not toss my cookies, but i sure almost did. i drank some cola ( my mom's cure for everything) and took a nap. i felt sort of funny- but i am not sure if i was just anxious about the treatment. i did have quite a bit of hair loss- but this could have come from the removal of my thyroid and not just the I-131. the side effect that i am still dealing with, though it is not as severe as it was at first, is salivary stones . the I-131 gets into the paratid salivary glands and solidifies making " stones". it happened to get my attention for the first time when i was at work. my jaw/face swelled up and was hot to the touch. needless to say, it was painful. i have found that drinking lots of sour lemonade works just about better than anything. the sourness stimulates the salivary glands to get those stones moving. you can also use warm compresses, and taking ibuprofen may help with the pain/inflammation.
am i sorry i took the I-131? heck no. my hair grew back- mostly, though i still deal with a little more hair loss than the "average" person. the salivary stone issue has been bothersome, but if taking the I-131 has meant that i will be cancer free, as i have been for the past two and a half years, then it was worth it. everyone must make up his/her minds on this issue. RESEARCH, RESEARCH, RESEARCH!!! talk to your doctor and other health care providers, then make the best decision for you.
one thing though. i do NOT like to hear- and it is up there with " thyroid cancer is the best cancer to have" issue, that the I-131 is not without side effects. as i said, it is thyroid "chemo" to me. no, it is not as bad as traditional chemo as far as side effects go. but it is not without side effects, and i do not like to hear doctors or other health care providers trivialize this treatment. to those of you who may be undergoing this treatment now, i wish you the best of luck.
for my next blog, i will stay on the thyroid symptom train, but it will be a surprise. i,e., i have not decided on a topic yet! but it will be forthcoming this week.
Wednesday, January 23, 2013
depression and hair loss-- uh, no thanks.
entire books have been written, and will be written, on the subject of depression. i think that everyone has some idea what depression is, thanks to the media. " depression hurts, blaa, blaa, can help" for one example. it basically boils down to our thyroid glands, when we suffer from depression related to hypothyroidism,not being able to supply the hormone necessary to help our other organs function properly. as a pharmacist, i see so many people on antidepressants. i know that these medications can really help in some cases. but, i would love to see doctors take the time to find out if the depression is caused by a brain chemical imbalance, a hypothyroid condition, diabetes or other autoimmune disorders, a life event ( death of a spouse,etc) before antidepressants are prescribed. i will give you an example. i know a young woman who was suffering from depression and was immediately prescribed antidepressants. she improved somewhat, but was still having depression along with other symptoms that would indicate a thyroid disorder. she was finally tested for thyroid disorder, and BINGO, they discovered that she was hypothyroid. she was then prescribed thyroid hormone replacement, and is doing much better. it makes more sense to me, and is better therapy, to determine what factors are causing the depression and then use that information to determine treatment.
antidepressants can be a good option, of course, but so can talk therapy, exercise, and of course, just getting a diagnosis of hypothyroid disease, if that is the case, and receiving treatment for that . we live in an " instant gratification" society. we want results, and we want them now. i understand that the patient wants to feel better right away . but i would like to see more investigation and more communication between the patient and health care providers before antidepressants are prescribed. it is important to get this symptom of hypothyroidism under control because it has such an effect on the quality of our life. this is how things would work in my perception of an ideal world: if you are depressed- and suffer on a fairly regular basis, get tested for hypothyroid disease. if you are hypothyroid, your doctor would prescribe a thyroid hormone replacement drug for you. then use talk therapy and exercise and see if that helps. if you still do not have the quality of life that you desire, the doctor would try an antidepressant drug.
on the subject of hair loss, it also results from the changes in our metabolism due to decreased thyroid hormone. you only need to look at any women's magazine these days to realize how important good hair is! i would like to be able to tell everyone that there is a magic pill out there for hair replacement. there is not, i am afraid. being on the correct thyroid replacement dose helps of course. multivitamins may help somewhat- especially the b vitamins, but it not guaranteed. what may help a little is to use a gentle, organic if possible, shampoo and conditioner. and of course, try not to overuse the flat iron or curling iron. these can be hard on our hair and we need to take care of the hair that we have! i had quite a bit of hair loss after the I-131 treatment and my thyroid removal surgery. but i am thankful that i did not lose all of my hair like some women do who have "traditional" chemo after, say, breast cancer. one benefit of my job, i guess you could say, is that i always- every day- see people who have more serious issues to deal with than i do. that being as it may, i think that next time i will discuss the side effects, benefits,etc, of the I-131 treatment. it is a form of " chemo" and it is certainly not a walk in the park, as some doctors would like for us to believe.
antidepressants can be a good option, of course, but so can talk therapy, exercise, and of course, just getting a diagnosis of hypothyroid disease, if that is the case, and receiving treatment for that . we live in an " instant gratification" society. we want results, and we want them now. i understand that the patient wants to feel better right away . but i would like to see more investigation and more communication between the patient and health care providers before antidepressants are prescribed. it is important to get this symptom of hypothyroidism under control because it has such an effect on the quality of our life. this is how things would work in my perception of an ideal world: if you are depressed- and suffer on a fairly regular basis, get tested for hypothyroid disease. if you are hypothyroid, your doctor would prescribe a thyroid hormone replacement drug for you. then use talk therapy and exercise and see if that helps. if you still do not have the quality of life that you desire, the doctor would try an antidepressant drug.
on the subject of hair loss, it also results from the changes in our metabolism due to decreased thyroid hormone. you only need to look at any women's magazine these days to realize how important good hair is! i would like to be able to tell everyone that there is a magic pill out there for hair replacement. there is not, i am afraid. being on the correct thyroid replacement dose helps of course. multivitamins may help somewhat- especially the b vitamins, but it not guaranteed. what may help a little is to use a gentle, organic if possible, shampoo and conditioner. and of course, try not to overuse the flat iron or curling iron. these can be hard on our hair and we need to take care of the hair that we have! i had quite a bit of hair loss after the I-131 treatment and my thyroid removal surgery. but i am thankful that i did not lose all of my hair like some women do who have "traditional" chemo after, say, breast cancer. one benefit of my job, i guess you could say, is that i always- every day- see people who have more serious issues to deal with than i do. that being as it may, i think that next time i will discuss the side effects, benefits,etc, of the I-131 treatment. it is a form of " chemo" and it is certainly not a walk in the park, as some doctors would like for us to believe.
Sunday, January 13, 2013
" all aboard!!" here are two more symptoms of hypothyroid disease ( and hopefully some ideas to make living with them just a little easier)
today i am going to talk about the two "C's". one of which nobody likes to mention in polite company. and i am talking about CONSTIPATION . there, i said it. as a pharmacist i get asked about this problem every day. unfortunately, now i have some personal experience with this difficult hypothyroid issue. not everyone who suffers with constipation is hypothyroid of course, but i would bet that everyone with hypothyroid disease has struggled with constipation if not routinely, then from time to time.
when asked by a patient about what to do, i always take the natural approach. if a person gets "addicted" to a harsh laxative then that can lead to other problems- electrolyte imbalance, absorption issues, and well, heck, you have to go out and buy the laxative on a pretty regular basis. first, i recommend some lifestyle changes, i guess you could say. make sure you are getting enough exercise- walking is great, and make sure that you are drinking enough water. fiber is important, of course, and a fiber supplement can be a good idea, but eating enough fruits and veggies is best. remember that red meat is constipating, and i am not talking about giving up red meat, just try to replace some meals with chicken or fish. red meat tends to take longer to digest and will remain in one's digestive tract for a lot longer than most other foods, thereby slowing things down. probiotics are great- i do not like the texture of yogurt, so i take a probiotic supplement. there are several good ones, but i have found that different ones work better for different people so one just has to try and see what works best for them.
this issue takes some time to come to terms with- it is not an overnight fix . everyone lives a hectic lifestyle, and our schedules vary from day to day. i have found that organic, unfiltered ( has some apple puree in it) apple juice works well, prunes work well for some people. if worst comes to worst, and i am pressed to recommend something over-the-counter, i usually recommend a fiber supplement- powder, not pills( they can cause more problems), or a product like miralax. this is not a stimulant laxative, it is more like a fiber product, and can be taken for a period of time.i have to say here that if you have tried all of the above with no success , or have " bleeding issues" please see your physician.
now, on to the next " C". coldness. an under active thyroid means that our metabolism is too low, as we all surely know, and our bodies can not generate enough heat to keep us warm. sometimes i feel like i work at the north pole. i am the only hypothyroid person there- the others being either pregnant, pre-menopausal, or menopausal, or men. the air conditioning is on all year long and i freeze to death! i wear insulated silk cammies under my blouses- layering is best, and i always have a sweater on under my lab coat. i have found,though, that at night i am the coldest. i know that my thyroid medication level is down, and my body is struggling to provide warmth. one simple tip that does help me at night, is wearing socks to bed. my husband likes a cool bedroom, so we turn the heat down at night. i have several blankets,etc, on the bed. i guess you could say that it is the concept of layering again.
i hope that i have provided some useful information and tips about the two "C's". i know that the topics have been discussed and then some, but sometimes it is good to review. next stop on our thyroid train ride will be depression and hair loss. see you then......
when asked by a patient about what to do, i always take the natural approach. if a person gets "addicted" to a harsh laxative then that can lead to other problems- electrolyte imbalance, absorption issues, and well, heck, you have to go out and buy the laxative on a pretty regular basis. first, i recommend some lifestyle changes, i guess you could say. make sure you are getting enough exercise- walking is great, and make sure that you are drinking enough water. fiber is important, of course, and a fiber supplement can be a good idea, but eating enough fruits and veggies is best. remember that red meat is constipating, and i am not talking about giving up red meat, just try to replace some meals with chicken or fish. red meat tends to take longer to digest and will remain in one's digestive tract for a lot longer than most other foods, thereby slowing things down. probiotics are great- i do not like the texture of yogurt, so i take a probiotic supplement. there are several good ones, but i have found that different ones work better for different people so one just has to try and see what works best for them.
this issue takes some time to come to terms with- it is not an overnight fix . everyone lives a hectic lifestyle, and our schedules vary from day to day. i have found that organic, unfiltered ( has some apple puree in it) apple juice works well, prunes work well for some people. if worst comes to worst, and i am pressed to recommend something over-the-counter, i usually recommend a fiber supplement- powder, not pills( they can cause more problems), or a product like miralax. this is not a stimulant laxative, it is more like a fiber product, and can be taken for a period of time.i have to say here that if you have tried all of the above with no success , or have " bleeding issues" please see your physician.
now, on to the next " C". coldness. an under active thyroid means that our metabolism is too low, as we all surely know, and our bodies can not generate enough heat to keep us warm. sometimes i feel like i work at the north pole. i am the only hypothyroid person there- the others being either pregnant, pre-menopausal, or menopausal, or men. the air conditioning is on all year long and i freeze to death! i wear insulated silk cammies under my blouses- layering is best, and i always have a sweater on under my lab coat. i have found,though, that at night i am the coldest. i know that my thyroid medication level is down, and my body is struggling to provide warmth. one simple tip that does help me at night, is wearing socks to bed. my husband likes a cool bedroom, so we turn the heat down at night. i have several blankets,etc, on the bed. i guess you could say that it is the concept of layering again.
i hope that i have provided some useful information and tips about the two "C's". i know that the topics have been discussed and then some, but sometimes it is good to review. next stop on our thyroid train ride will be depression and hair loss. see you then......
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