Sunday, April 22, 2012

" well, i'm a runnin' down the road, try'n to loosen my load-..... Don't let the sound of your own wheels make you crazy. lighten up while you still can, don't even try to understand, just find a place to make your stand, and take it easy. We may lose and we may win, though we may never be here again.... to take it easy." Take it easy, by the Eagles.

i think that the relationship between you and your doctor, in this case, endocrinologist, is like a good marriage. there must be compromise. i told you all last time, that my doctor decreased my levoxyl dose, from 150mcg down to 137mcg. i had a very hard time with that reduction! i worked two evenings last week, and by the second evening i knew that i was in trouble. i could not focus very well, mentally as well as focusing  my eyes. i actually had blurred vision.  this happened about 7:30pm. when i work the evening shift, i work from 12 to 9pm. so i had an hour and a half to try to keep things together, and a 30 minute drive home after that. i knew that something had to give!

i called my endo the next day, and left a message with her nurse. i did not hear anything until the next day. i had asked that if my dose could not be increased back up to the 150mcg every day, could i at least take the 150mcg two days a week? i guess she took a day to think about things. i could not blame her for that. the next day the nurse called me back and said that yes, i could take the 150mcg two days a week. YIPEE!! i chose mondays and fridays for two reasons. one being that it sort of breaks up the week as evenly as possible, and reason two being that mondays and fridays are our busiest days at work. i have to be able to focus at my job!

it is a little early to tell, but i think that maybe this will work out for me. i took my "first" 150mcg dose of levoxyl this past friday, and although i have had bronchitis for the past few days, i felt that i had more energy and i did not feel as "fuzzy". fuzzy is o.k. if you are a stuffed animal, but not if you are a person and are trying to do a job where you could actually make a mistake that, well, might hurt someone. it is so hard for anyone else to understand, a normal person, you know a person that has not lost their "butterfly", what a thyroid patient goes through. just a small change in your thyroid dosage and here we go again. all aboard the thyroid-less roller coaster ride. it really feels like i am on a roller coaster- i get waves of energy, then fatigue, then maybe a little energy before the long fatigue stretch. the problem is, i am not at an amusement park, the ride never ends, and somehow it keeps changing along the way. hair loss, no hair loss, concentration problems, etc. people who do not have a thyroid problem think that we all  just  take a tablet and everything is just fine. no problems, right? although i have empathy for those patients dealing with a heart condition, or diabetes, or high blood pressure, i will admit that i do not fully understand what they are going through. this helps me keep things in perspective when someone says something stupid to me. you know, like " you do not really need your thyroid, do you?". or, the worst one, the one that made steam come out both of my ears was from a physician. she told a patient that she should take this particular medication. the patient was hesitant, because she had read the side effects and one of them happened to be thyroid cancer. she told her doctor that she was not going to take this medication because of that. her doctor said, i swear this is true and these are her exact words, "WHY NOT, IT'S ONLY THYROID CANCER?!" 

this made me even more thankful for my endo, and the fact that she was willing to compromise with me on my levoxyl dose. it seems like an endless battle, and endless thyroid-less roller coaster ride, for those of us who have to deal with thyroid/parathyroid issues. all i can tell you is to just keep trying to figure out what is best for you. i hope that you are able to talk to your doctor, and work out something that is agreeable to both of you. oh, and also take it easy.

Sunday, April 15, 2012

"dream,dream,dream, dream,dream,dream...when i feel blue in the night, and i need you to hold me tight, ....dream,dream,dream...only trouble is, gee wiz, i 'm dreaming my life away. i need you so that i could die, i love you so, and that is why, whenever i want you, all i have to do is dream,dream,dream,etc.. " All i have to do is dream, by the everly brothers

when i got to work the other day, i found a brand new prescription waiting for me- a levoxyl one, for 13mcg less than i used to take! i was on the 150mcg strength, and my doctor had called in one for the 137mcg one. of course, and i am sure many, many of you out there can relate to this, i had just gotten a 90 day supply of the 150mcg filled a couple of weeks ago! more than that,though, i had not gotten anything in the mail, or a call from my doctors office. i called my doctors nurse immediately and left a message. i will give her this, she called me right back. she said that my T-4 was indeed high, and my doctor needed to reduce my dosage. it would have been nice to know before hand,though. while i will admit that it was not a complete surprise to me, i still would have welcomed the opportunity to talk to someone about it first.

now, you would not think that just a 13mcg reduction in my dose would do much, right? well, if i had any thyroid at all, maybe i would not notice it that much. i am so glad that i started it this weekend since i am off and can rest a bit . i am afraid that next week will be pretty tough,though. you see, all i want to do is sleep!! my heart has stopped doing the mambo, not that i noticed it much, or really worried about it, but i guess that is a blood pressure is still a little high, so i will have to wait a bit to see how that ends up.

before my surgery, i used to take a small dose of cytomel( T-3) once daily. it was sort of like a cup of strong coffee in the afternoon. since my T-3 level this time  was about mid-range, i am going to contact my doctor tomorrow and ask her if i can get back on this. it was 5mcg once daily, if anyone wants to know. some doctors are hesitant to use this drug  for some reason. i think that some doctors are perhaps not familiar with the drug, maybe afraid of possible side effects, or whatever. since my doctor has prescribed this for me before, i am hopeful that she will do so again. otherwise, i may be dreaming at work( not good- not good at all!)

as far as my other lab values went, my glucose was good( 90- but i was not fasting)- i worry about this  since i love sweets! also, diabetes is another autoimmune disease that seems to like to hang out with hypothyroid patients. my sodium was a bit high( who knows?) but my calcium was low. my doctor wants to keep this just a little low so that my two remaining parathyroids will be stimulated to work harder. to review a bit, your parathyroids control blood calcium. a "normal" person has four parathyroid glands , but you can live with just one little guy( would not want to be in his shoes,though.). everyone knows that calcium is important for our bones,so i will not go into that. what i would like to mention are symptoms of low calcium: mild tingling in the hands, fingers and around the mouth to more severe symptoms like severe muscle cramps or even worse, seizures. so, you see i ( and those other patients who are missing part of their parathyroids) walk a fine line: you need to have a high enough calcium level so that you do not have hypoparathyroidism ( makes hypothyroidism look like a walk in the park), but not too much calcium that, for one thing, your parathyroids get lazy and think about moving to Paraguay.

to make things even more challenging , i have just discovered that i have lactose intolerance, so i have been trying to eliminate dairy products- at least during the week. i will need to supplement now with some calcium. remember that this interacts with your thyroid hormone, which should be taken first thing in the morning on an empty stomach, anyway. your calcium tablets and thyroid medication should be at least four hours apart so that the calcium will not inhibit your body's absorption of your thyroid hormone.  i have decided to pack some calcium tablets  along in my lunch box. i have chosen calcium citrate as my calcium of choice. it is absorbed very well and can be taken with or without food. it is also a  little easier on your digestive system. you also need vitamin d for good calcium absorption,too. i take prescription vitamin d, and have for some time. i think that there is some correlation between hypothyroid disease and low vitamin d levels. this has not been proven, to my knowledge, i just have seen way too many hypothyroid patients, especially those with cancer, who also have low vitamin d levels. vitamin d boosts our body's immunity, for one thing. i encourage thyroid patients to ask their doctors to test their vitamin d levels when they are getting other blood work done.

this blog has probably put some of you to sleep! i hope that i have not been too technical about lab values,etc. i just want to put useful information out there that might be helpful to others who are dealing with the same challenges that i am. please ask questions if you want, and if i do not know the answer, i will look it up or recommend some good reference books. that is, if i have not fallen  asleep myself!

Wednesday, April 11, 2012

"......we had time against us and miles between us.... I'll be waiting for you..i put my hands up, i'll do everything different, i'll be better to you. " i'll be waiting, by adele

i STILL have not gotten my lab results back yet! this is just so frustrating. i wonder if the doctors/nurses,etc, have any idea how anxious this makes us feel? i suppose that i will have to call them tomorrow and try to find out something. they were supposed to send me a copy of my results( i like to keep them for my records). a call would have been nice,too of course. anyway, no news on that front as yet. i do not expect a problem, but my endo may have to reduce my levoxyl dose if my T-4 level is too high. she wants to keep my TSH level at near zero for now. that is because she does not want any thyroid cancer cells that might be hanging out somewhere else in my body- chilling out, you know, waiting for a chance to cause more mayhem, to be stimulated. she also told me that she never wants my TSH level to get above 0.4 or so. ( for the same reason). i will admit that i am having a few hyperthyroid effects lately. i have never had those before! the good part is that i have a little more energy, less trouble losing weight, and i feel like dancing a lot( i would ,to ,if it were not for my bum knee). the down side to this is that  my heart is skipping a few beats- but it always manages to get back in time with the music. i would not have known this, but my endo  heard it last time when she was listening to my heart. my blood pressure is also up a bit- could also be from a too high T-4 level, or not. heck, it could be from work ( always a likely candidate) or the fact that both of my parents had hypertension. i do not want any other health issues, so i am checking my blood pressure occasionally with a self inflating cuff that i bought,  and hoping for the best.

another stressful, but exciting, event that is probably making my blood pressure go up is the re-modeling project that my husband and i are doing on an upstairs room and part of our kitchen. some of my friends have asked me why in the world would i do this again? last year my husband and i did a big re-model and we managed to stay married, so why tempt fate? well, we live in a 100 year old house and this room was the last room to get some attention. no insulation, except the horrible blown in kind- the kind that all sinks to the bottom of the walls and is the devil to clean up. the wiring needed to be replaced as well. we have carpenters and a contractor doing the work, so i can not complain there, oh, but the dust! and for some reason, the last guy out does not always shut the door. last time i had a very large bat flying around the house, and this time one of our dogs came inside and was sitting on our couch waiting for me. it would have not been so bad had she been a yorkie or a small dog, but she is a 70 pound old english sheepdog. it could have been worse, i guess. i have a 120 pound german shepherd, and if he was in on it, he had the smarts to clear out before i got out of the car. i was expecting my children for the weekend, and my daughter said, " you know, mom, it smells like dog in here!". a can of febreze later, it was o.k. though.

i hope that everyone had a great holiday and enjoyed some time off with family and friends. i will certainly write a post when i do, if i do, get my lab results back. just one note, if you post a comment on a really early blog entry of mine, i may not get it. i am not alerted by my computer when i get comments, and i do not go very far back to check. my son-in-law( the computer whiz)  may be able to help me with this, but bottom line, if you have a question for me, please post it on a current entry. or please feel free to email me at my personal email address: with any questions. i will help any way that i can!

Monday, April 9, 2012

" what doesn't kill you, makes you stronger... stand a little taller.... what does not kill you makes a fighter.... What does not kill you makes you stronger, stronger... Just me, myself and i. " Stronger ( what does not kill you makes you stronger) by Kelly Clarkson

i sure have heard those words a lot! i have also thought those words a lot. my last "testing week" brought it all home to me in a bad sort of way. i worked myself up ( so sure that something was wrong) and felt sorry for myself. all for nothing it seems. now, i do not feel sorry for myself for very long. i will not allow it. i still have not gotten my blood work test results back- i guess they are late because of the holidays. but my ultrasound was good, and that is a blessing. so this is behind me, i survived, and i hope that i am stronger because of it. my next ultrasound/blood work is scheduled for the end of september. i hope that i can handle it a little better-not get so upset about things. i should be back to regular  zumba classes  by then, so maybe that will help me de-stress a little.

speaking of zumba, no, i have not made my triumphant return as yet. i have about four weeks of physical therapy left, according to my physical therapist. i went today and she really put me through it! she strapped on a two pound weight to the ankle that is related to my bad knee and we all did some new exercises. plenty of ice packs and a little advil, and i am doing fine tonight. i have the chance to go again on wednesday, as this is my short week at work, so i get to do it again. kidding aside, this is really helping me- more than the cortisone shot, or anything else that i tried before this. i hope that no one who is reading my blog  has the need for physical therapy, but if you do, i highly recommend it. ( just make sure you stock up on ice packs)

i had a wonderful time seeing my children and of course, gabriel, my grandson, this weekend. gabriel is giving my husband and me some really good smiles and he is telling us stuff in baby-speak. mainly, coos and ahhs, but we get the general idea. i am still in the "wonder" phase of being a grandparent. you know, the " isn't he just the best thing ever" and " how did i get so lucky?" phase. of course, i absolutely conked out after they left. gabriel was not the only one ready for a nap!

to sum up the message in my blog: 1. have your tests done- be brave and just do it. 2. find your "zumba" and de-stress so that you will be happy. 3. enjoy your family and friends. enjoy your life. appreciate all of  the good things and remember to give good things back to others. 4. last, but not least, thank you to everyone that  reads my blog. whether you comment or not, you are important to me. i hope that by me  sharing my story , it  has helped you in some way. now THAT makes me happy!

Sunday, April 1, 2012

"chain,chain,chain,chain,chain,...chain of fools. you got me where you want me. i ain't nothing but your fool. ya treated me me mean, oh, you treated me cruel. doctor said, "Take it easy."... chain of fools. one of these mornings the chain is going to break.. chain of fools, chain of fools, .." Chain of fools, written by Don Covey, and i always listen to Aretha Franklin sing this one!

i had my ultrasound of my neck and lymph nodes, as well as extensive blood work done last week. it is  an out of town trip,about a nine hour round trip, so we spent the night with my daughter and son-in-law. ( that is always something that i look forward to  when i have to do these tests). of course, my blood work results will not be back for about a week or so, but i got the ultrasound results right away. here is the official wording: " No residual tissue or enlarged lymph nodes visualized in either the right or left neck". YIPEE!!  i asked the ultrasound technician to please go over the right area of my neck, near my ear, because when i had my initial visit with the surgeon, two years ago, he was sure i had a positive lymph node in the area under my ear. of course, he biopsied that lymph node and it came back negative. never hurts to check,though. and the ultrasound technician was very nice about doing so.

i hate to admit this, but i was extremely nervous about this test, this time. i have to have these tests done  every six months( the next one is already scheduled for september 27th). i have said that i am grateful that my doctor gives me such good care, but these tests cause a lot of  anxiety for me and my husband. i am not exactly sure why, but i was afraid that there was something wrong this time. when i had my I-131 treatment almost two years ago , the radiologist told me that i had one positive lymph node, and that my tumors were unencapsulated, and diffusely infiltrative into my lymphatic system. two of my parathyroids were malignant, as well. i would not worry as much( ok. i would worry some, because i am a worrier by nature) if everything had been in a neat little package and had not spread. that said though, my initial  full body scan showed that everything was confined to my neck area, and had not spread to my lungs or beyond. sometimes i feel that this cancer has been like a ball and chain around my neck. it is not what defines me, but it certainly is in the definition, if you know what i mean.

if you were to look me up in Websters dictionary, and if i were to be in there, here is what you would see:

bea young-smith, n. 1. devoted wife, mother, and grandmother. 2. spiritual;  loves her family and friends. 3. registered pharmacist. believes that the most important part of her job is to counsel patients and help educate them about their health care so that they can make good choices and be as healthy as possible. 4. thyroid/parathyroid cancer survivor.

i am grateful to be a survivor. and i try to be as positive as i can be in my life. i want to have a good, happy life and not drag this cancer around  with me like a ball and chain. it gets in my way! it makes me angry, and it has definitely changed my life. not all of the changes have been negative,though. through this blog i have met some incredible people. i really appreciate their presence in my life, and i have learned so much from them. and i have had the privilege to meet some other thyroid cancer survivors in my work and we have shared our stories and information. i guess like everybody's life, my life is a work in progress. i just have the added advantage of knowing that i must make the best of my life and be grateful and happy for everything good that comes my way. i am about ready to lose the ball and chain,though. anybody have a saw?