ta-da!! or this is the results blog

well, this is the bi- yearly results blog. and i got a pretty good check up this time. i was hoping, for some reason, i guess because i finally have gotten rid of my thyroglobulin antibodies, that i could go to once yearly testing. but my doctor said because i had a fairly aggressive section of the cancer in my neck area ( my tumors became  unencapsulated, and were diffuseley infiltrative; translation: the tumors burst open and spilled out into my lymphatic system) that she felt better with the six months check up schedule for now. o.k. i get it, and i appreciate her concern and care. better safe than sorry. if i need to have more of the RAI treatment or whatever, better to catch it early.

my numbers, the ones all thyroid patients live by, you might say, were as follows: t3, free: 3.5 ( range is 2.0-4.4); anti-thyroglobulin antibodies, less than 1.0 ( which is negative, yea!!); TSH- 0.005- my endo wants to keep this at zero so that just in case there are any thyroid cancer cells lurking around, they will not be stimulated. T4- 2.58 ( this is high; range is 0.82-1.77). i am not having any unpleasant effects from this.( this number makes me technically hyper ) .this is where my endo is so good, in my opinion. other practitioners might see the numbers and freak out. my doctor asked if i was having any heart palpitations, nervousness, difficulty sleeping,etc. and i am not. she listened to my heart and i am not having arrhythmias. i feel good on this dose, and she wants to keep my TSH suppressed, so she repeated the blood test on the T4 and is awaiting the results before she does anything with the dose. my doctor listens to how i am feeling and does not just  look at the numbers. i am taking 137mcg levoxyl now. i was taking 150mcg levoxyl two to three days per week ( alternating the dose), but i stopped this because i did not feel well on the 150mcg dose. i have lost 11 pounds since my last visit, but i think that this is because of the kidney stone ( nausea, pain) that i was dealing with, and is not related to my thyroid dose. i would love to say that it was diet and exercise. i have been trying to eat healthier, but i have not been able to go to zumba in a while because of my kidney stone, so i can not credit exercise. i am planning to return to zumba next week, hopefully, as the exercise helps my mood as much as my health, in my opinion.

my vitamin d level was 58.7 ( range is 30-100). she wants her thyroid patients, especially those who have had cancer to have a number near 60. i take 50,000 units prescription vitamin D twice weekly. in the summer when i can get outside, i might reduce it to once weekly. when i first started on vitamin d supplement, my level was near zero. there have been some studies that suggest a low vitamin d level may be present in cancer patients. i know that since i have been taking the vitamin d, my energy level is improved and i have less aches and pains. i am a vitamin d fan, you might say. it is not without side effects, and patients need to have their levels check frequently to make sure that they are in the correct range. a really high vitamin d level, probably over 100, could cause harm to the kidneys.

my cholesterol was 134. this is good, because hypothyroid patients tend to have high cholesterol. this may be somewhat related to my diet- i am a partial vegeterian- i have not had any red meat in 30 years, but i do eat some chicken, and fish on occasion. i am wondering since i will need to increase my dairy intake a little,( i need to supplement a little calcium for my bones, and since i have had a kidney stone i do not want to take calcium supplements at this time )  if my cholesterol will go up. i have a little room to play with, you might say, so hopefully things will all work out.

so that is about it. i already have my appointments for my lab work and ultrasound/ doctor visit for october. my doctor will let me know what she wants to do about my T4 . since we talked about it, she knows how i feel ( i want to stay on the 137mcg for now). i know that she will take how i feel into consideration before she makes a decision.

interesting side note here. she wanted to look at my pathology report from may of 2010( after my surgery). it was not in her computer for some reason. but i have records in a special  notebook of ALL of my tests since my diagnosis. i told her that i would mail her a copy. this is a good example of what i always try to tell everyone: keep copies of all of your tests. you never know when they might come in handy.

"the w-a-i-t-i-n-g is the hardest part. " tom petty and the heartbreakers

don't i know it tom. the waiting is the hardest part. every six months i have to wait on my big cancer check up. i get blood work done the week before, and the ultrasound/ doctor visit the next week. i will admit that when it gets near the time for one of these visits, i am a little anxious ( my husband might say more than a little). this time though, i had something to keep my mind off the visit, and on something else. last friday, i had surgery for a kidney stone. it was outpatient surgery, but i had to have general anesthesia, and had the old intubation tube put in. i also had to have a stent put in because i had had the stone for a while, long story, and there had been some damage to one of my ureters. my doctor told me that he would try not to  put a stent in unless it was necessary- i had heard horror stories of stents- especially the removal, and i certainly  wanted to avoid that if possible.

when i woke up in the recovery room, i had three questions to ask the nurse. first, was there really a stone. "yes, the nurse said and here it is!" it was lying on my stomach in a plastic urine specimen cup sealed in a biohazard bag. no, i did not want it, but i had to take it to the doctor's office  so that  they can send it off to  determine what kind of stone that it is. such a little thing to cause such trouble! hard, with sharp, pointy edges,though.

second thing i asked, do i have a stent? she looked at my chart, and said," i am afraid so, dear." oh, well, i know my doctor only put one in if he had to. let me tell you here that stents are extremely uncomfortable and painful. it is difficult to get comfortable in any position, and mine had a long string attached. it was not as bad coming out as i had anticipated, really. the nurse took it out "quickly, and on the count of two, while i was blowing out  a deep breath." this happened yesterday, and i am still pretty sore. in my opinion, having one in was much worse than getting it removed. it was inserted while i was under the anesthesia, but it was removed without any pain medication. i told my husband i would just bring in my own rag to chew on when they removed it -like they did in the olden days.

luckily i did not ask the third question. which was, does EXXIT really have two x's? my bed in the recovery room was right in front of the exit sign. i think if i had asked that i would have been in the recovery room a bit longer.

so, i am researching kidney stones and thyroid patients. i have found that there is a correlation between this and hyperparathyroid patients. it has to do with the calcium levels in the blood, i believe. i have heard of other hypothyroid patients having kidney stones,though, so i am not sure if there is a link, or if it is just our bad luck in having them.

this thursday i go down to see my endo for the big check up. i am not expecting any bad news, by the way. i have felt pretty good, except for the infamous Shirley D. Stone, which is finally gone. i will of course let everyone know how the appointment went. on may 19th, i will be a four year papillary thyroid and parathyroid cancer survivor. i am so grateful for my family, friends and the care that i have received during my illness. it has changed my life- mostly for the better, and i am very appreciative of every new day and every new adventure. well, maybe not those involving kidney stones.....

"..because i'm happy, clap along if you feel like a room without a roof, because i'm happy, clap along if you feel like happiness is the truth, because i'm happy, clap along if you know what happiness is to you, because i'm happy, clap along if you feel like that's what you want to do..." Happy, by pharrell williams

i have just read the most amazing book that i would like to share with everyone. it is " radical remission" by kelly a. turner. usually i give up on self help books part of the way through. they are usually dry and, well, boring. this book is well written and reads like a novel, but with thought provoking material.

there are nine chapters in the book- each chapter a " key" that radical remission patients( patients who have beat cancer despite all odds) have used. most patients have used all of these keys in dealing with the path back to good health. i really enjoyed reading the stories from radical remission patients. some of these patients have chosen a few paths that i might not have traveled myself, but all the stories are inspiring and interesting. the information that these patients share with us, along with the scientific information provided by ms. turner, would be beneficial to anyone who is dealing with cancer, or really any chronic health condition. after reading this book, i am going to make some changes myself.

when i began my cancer journey, it changed my life. well, you might say, that i changed my life. actually, i did some of the things mentioned in this book. i am not sure how a person who is given a cancer diagnosis can do anything other than change the way we are living and looking at our lives. i have tried to gleam positive life changes from my cancer, not to feel sorry for myself. i did not want to feel like a victim. i wanted to take control of my life from here on out, and be sure that i was in charge of my health care and well being.

some people say that they do not want cancer to define them. well, i have said that if you could look up the definition of my name in the dictionary, "cancer patient" would be part of the definition, but not the most important part for sure. i consider myself a mother, wife, friend, health care provider- pretty much in that order. i love my family, and most of the time i enjoy my work even though it is a stressful job. i enjoy helping people learn about health care, and what they need to do to take care of themselves. i would like to help people realize that they are in charge of their own good health, and they need to make decisions that are right for them. oh, i almost forgot- in my definition, there would also be zumba fanatic. haha.

one of the most interesting keys in the book, radical remission, is the "increasing positive emotions" or as it is also called, adding joy to your life. i am, by nature, a pretty optimistic and happy person. which is not to say that i do not  get depressed, angry, or sad sometimes. happiness is very, very important to healing and actually boosts our immune system. i am going to  try to incorporate at least 5 minutes of joy or happiness into my life  every day. and by that, i think it should be more than a little smile. it should be a good ole belly laugh, as the saying goes. one suggestion in the book is to " monitor your media". which is interesting because after i had my surgery, i did not want to watch the news or any sad, violent or otherwise disturbing tv programs. i instinctively knew that this was bad for me. i want to be well informed, of course, but watching the news is a real downer to happiness ,i think. i wish the news could somehow focus on the good news instead of how many people have been murdered or hurt in car wrecks.

so, i'm happy..... or at least trying my best to be. here's to our immune systems, and i hope that you will enjoy this book as much as i have.

"how does it feel? how does it feel? to be without a home, like a complete unknown, LIKE A ROLLING STONE, " like a rolling stone, by bob dylan

i have had a very bad bout with salivary gland stones. well, one stone in particular. it was large- felt like a boulder, but probably was about the size of a small pea. it was round, hard and rolling around inside the salivary gland under my tongue. it caused my lymph nodes to swell- especially on one side. my husband and i were eating dinner a few weeks ago, and he said, " OMG, you have a lump the size of a goose egg on your neck!". really, a goose egg? i have never seen a goose egg, but since they are usually, i think, larger than a chicken, i was somewhat worried.

it literally came up in an instant. i got out the old stand-bys- heating pad, large glasses of sour lemonade, and ibuprofen for the pain. for those of you who may not know, i have been having salivary gland issues since my whopper dose of RAI. it took about a year to develop, but they have stayed with me since then. the first episode that i had sent me running to the dentist. " tell me it is a bad tooth!" i cried. although, i somehow knew that it was not. my dentist said no, he was pretty sure that it was salivary stones and sent me off to an ENT who confirmed the diagnosis. the ENT said that the RAI had flooded my salivary glands( somewhat common) and left scar tissue behind. this makes me, or i should say, them, susceptible to stone formation.

i have said that i think that there is somehow a link between the" darn it kidney stone" ( shirley D. stone) that i had and these salivary stones. maybe the same types of chemical compounds found  in foods that some think may cause kidney stones, can cause salivary stones as well. it just seems like too much of a coincidence to have both at the same time. i had been eating a lot of kale- baked kale chips are the bomb, when this happened. i am not sure if it is at all related, but i am sadly removing kale from my diet. i have noticed, unscientifically of course, that alkaline foods- such as chocolate, seem to make my mouth feel worse when i am having a bout with salivary stones. the food that seemed to feel the best, and do the most good was pineapple. now this is very subjective, i am just reporting how it went with me. something to consider,though. and for the record, i am NOT removing chocolate from my diet. i am just trying to cut down on it a bit, and definitely not have it when my salivary stones are flaring up.

ok, here comes the interesting, but gross part. you can stop reading now, if you want to. but, i passed the salivary stone at work! i kept rolling the stone around with my tongue from time to time, and my mouth was getting so sore that i could not eat. my mouth also burned, and, as i mentioned , i had that goose egg lump on my neck. so one day, last week, i touched the stone with my tongue and i felt a hard tip that i had never felt before. i went to the restroom, lifted up my tongue, and was able to see the tip of the stone poking it's mean head out from my poor, sore salivary gland. i pressed on it, and it came out in my hand. gross, right!!??. immediately, i felt better. the lump on my neck  went down some, although it is still swollen a bit. my mouth felt better and i was able to eat lunch.

i really thought that i was going to have to go to an ENT and have it surgically removed. i have researched this topic a little, and  that is sometimes  the case with larger stones . i have since read that rinsing with salt water may help with the pain - you have to be careful here,though, and mix it up correctly. one teaspoonful of salt per 8 oz warm water is about the right proportions. i found out, the hard way, that extremely salty foods will  set my whole mouth on fire when i have a salivary stone.

i am going to have to keep an eye on this, i know. i am going to read and research all that i can on the prevention and treatment of salivary stones. of course, i worry about salivary stone cancer, which is increased with exposure to radiation( uh, great, right?). i have not found an ENT doctor that i really like yet, but i will. and to answer bob's question, the rolling stone felt really, really bad!!

" guess who just got back today? those wild eyed boys that had been away. haven't changed, haven't much to say,....the boys are back in town, the boys are back in town, boys are back, boys are back...." i listened to the one by bon jovi

since i have had thyroglobulin antibodies for the past three years, i have- up until now, felt like a cancer patient. as you may know, if you follow my blog, in november, i finally, finally got a negative report on my thyroglobulin antibodies. i remember the nurse bringing me  the report while i was waiting on the doctor to come into the room. she had the biggest smile on her face when she handed me the report( i always get a copy of my blood reports, ultrasounds,etc for my records). the nurse did not say anything, but the look on her face made me curious. i remember i stared at the paper, for what seemed like a long time not believing it. where were those rascally rabbits- the TGAs?? i remember humming the lyrics to the "boys are back in town" whenever i looked at that six month blood work report. i should have said that  the boys are still in town. but for whatever reason, the boys have left town and that makes me a cancer SURVIVOR now. at least that is how i finally feel. with the TGAs hanging over my head, making me wonder if there was cancer somewhere else in my body, i just could not feel like a survivor.

now the challenge comes in transitioning from being a cancer patient to a cancer survivor. not as easy as you might think. i had a squamous cell carcinoma removed from my leg about a year ago. it was pretty large, and the dermatologist had to go deep to get it, but that was all the treatment that i needed. if this was all that i had to deal with, that and the six month  visits i get to make to  the dermatologist, i would be in gravy as they say. but i am reminded, by my body of all things, that i am missing my thyroid gland and things will be different from here on out. not that i miss the monster, but when my thyroid was healthy, i was living a " normal" life. i have a new normal now ( are we all sick of that phrase?). this just serves to remind me of the fact that yes, i had cancer, and hopefully i will be able to enjoy my life and not worry about the cancer returning.

i go back in april for my next visit- blood work and ultrasound. i am hoping that the boys are really out of town and i get as good a report in april as i got in november. i suppose it might take another  good report or two for me to really breathe easier. but i am on my way to healing my mind as well as my body. it does something to you i think- hard to explain to anyone who has not had cancer of any sort- once you get that diagnosis. i suppose people deal with a cancer diagnosis in different ways. i tried to see the positive changes and move forward. still, i will admit that the cancer was always in the back of my mind. it still is to some degree, but i like to think that it does not dominate my life and i can be happy. exercise- yes, zumba, has really helped improve my mood as well as my physical strength. i hope that anyone with cancer can find a good activity that they love and be able to stick with it. i believe that for me, it also gave me back some faith in my body that i had always taken for granted. namely, that my body would function correctly and not make me sick.

oh, for those of you that are interested, my husband is coming along well with his recovery from hip surgery. he tries to do too much, but other than that, he is a good patient. also, according to my last xray, i have managed to get shirley stone to oregon!! hooray!! hopefully no more kidney stones for a while. perhaps it will be smooth sailing for a bit.

i am getting to pay it forward

my husband took such good care of me three years ago, when i had my surgery/RAI for my thyroid cancer. even after i went back to work, he just pitched in there with the cooking or some other household chores. well, on monday i am paying it forward, as they say. my husband had to have a total hip replacement. he is doing well, and i am impressed by his determination to get better. he doing his physical therapy exercises, taking his medication( they have him on a blood thinner, for one thing), and wearing those inflatable leg "pumpers" for lack of the correct terminology. it seems strange for me to be the caretaker now. not that i am not so happy to do this for him, but our roles have been reversed!

one thing that i have noticed is that is not easy being a cancer survivor. there is of course, the new normal that everyone experiences. there is the constant testing and worry about the cancer coming back,too. that was  an attitude changer( for me, anyway). it  made me appreciate my life, and all my loved ones even more than i did before i got sick. who knows how long any of us have on earth, and i for one plan to make the best of things!

the problem  that i am trying to figure out, is how to be "normal" and deal with the reality of my situation. no one could possibly understand this, except for another cancer survivor. that is why i try my best to keep this blog going. i try to have good information about pertinent subjects, but also i benefit from the contact that i have with other thyroid cancer survivors. i do not live in a large enough town for a support group. honestly, even if i did, my work schedule would probably make it impossible for me to go with any kind of regularity. lets face it, i have a difficult time going to zumba! and everyone knows how much i love zumba.

so in my case, and for now, the patient has become the caregiver. i try to remember all of the things that meant so much to me, and made my life easier. not that my husband has cancer. his hip will improve, i am sure, and he will be out walking, out hiking, etc, me in no time. but for now, i get to see it from a different perspective. a good thing, i think.

there are no lyrics for this, that i know of, so those of you who remember playing the old computer game, The oregon trail, just hum the theme song- i'll explain later...

well, i went back to the urologist today for a follow up visit. i had been feeling a little better, so i thought that i would get a good check up. the doctor wanted to do another x ray. i did not think that i needed it, and i thought, it will probably be a waste of time, but what could it hurt? to be honest, i did not want to get any more radiation,though. with the huge dose of RAI that i got after my surgery, along with my latest CT scan( one CT scan is equal to 400 chest x rays!) i feel like i am positively glowing! and not in the good, ready for my close up, way.

anyway, to my amazement and horror, the doctor showed me my x ray, and there was Shirley D. Stone!
this is where the oregon trail game comes in. do you remember playing this on your old computer? my kids loved it, and played it so much that i still remember the theme song. we hardly ever got to oregon,though. i either shot myself in the foot ( or worse), there was a storm with  lightning ( a couple of chickens always died after this event) , or my wagon did not make it across the great river( a fitting analogy if i have ever heard one).  so Shirley D. Stone is trying to make it to oregon, and has been on the " trail" since thanksgiving. i feel just like my body is the map of the united states, and i have been tracking Shirley's every move.

i have drunk tons of sour lemonade, and i have been to zumba. i have been a very energetic dancer in zumba class. so much so that i strained a ligament in the back of my knee- which was really painful, and  has sidelined me for a while. tomorrow, i am going back to zumba and dance my heart( and hopefully shirley) out. i am going to take some ibuprofen before i go, and warm up on the recumbent bike so that with any luck, i will  not injure my knee again.  i still think that there is some connection between my salivary stones and this kidney stone. i have not ( yet ) found any evidence to prove it, it is just a feeling that i have. i had  gone a few months without my salivary stones flaring up, and then, boom, my jaw and face swelled up! was it a coincidence that i developed a kidney stone at the same time? as i said, i have no proof, but i will continue to investigate this issue.

so i have about a month to get shirley to oregon. if that does not happen,  i will have to go to the hospital for the "retrieval procedure" as well as having a stent inserted . honestly, i am dreading the stent- wearing it for about two weeks and then having it removed( without anesthesia) more so  than i am dreading  the hospital procedure. who knew that this trip would take so long?

"this is major tom to ground control. i'm stepping through the door. and i'm floating in a most peculiar way. and the stars look very different, today. " major tom to ground control, by david bowie

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.

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.

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.

" 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?

" 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.

" 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!

" 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.

" 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!