tag:blogger.com,1999:blog-69693934605537423532024-03-14T12:45:44.802-04:00Total Thyroid RemovalBack from thyroid cancer, sans one thyroid. I couldn't find much information on the net to help me, so I thought I'd start a blog to help people who also have no thyroid.Unknownnoreply@blogger.comBlogger35125tag:blogger.com,1999:blog-6969393460553742353.post-32499791639051162982012-09-02T11:05:00.002-04:002012-09-02T11:05:31.063-04:00Well it is five years past my total thyroidectomy. I have lost ten pounds and still have difficulty losing weight obviously. Other than that though it is amazing what five years can do. I feel fine. I am active and take kickboxing classes now! I work a full time schedule plus. I no longer require a nap after work. I am blessed that I am a teacher so I get summertime off and I really need it, but on a day to day basis I do not nap like I had to for years after the surgery. My hair is growing fine. The leg cramps have practically stopped and I think that is due in part to taking a calcium along with a magnesium pill each day.
I am still taking 250 mcg of Synthroid each day. I only take the name brand because my endocrinologist stated that the generic pills are allowed to have to much of a variance in the amount of filler and active ingredient. If you take the name brand you are getting a more consistent dose. I think because this medicine is measure in the minute micrograms that is important. Along with those vitamins I take a multivitamin each day and my regular doctor found I am low on iron. I do not know if that is because of the synthroid or not. I do eat a lot of iron regularly but still supplement with a pill as instructed. Just last year at my physical she found out I was very very low on vitamin D. I was shocked by that as I feel I spend a great deal of time outdoors. So not during the off season months I take a vitamin D supplement as well.
I'd still like to lose 20 pounds but it is still difficult and being 43 now seems not to be helping. I was following weight watchers diet for a while and didn't like points. I like to do calories, sugar and fiber. Now I'm doing myfitday.com and it allows you to track calories for free right online. I like that. And it is amazing how those little nibbles throughout the day add up.
My scar is barely perceptible now which is so great. I'll get pic on her next... If you are going through this thyroidectomy, I want you to please know there is light at the end of the tunnel. It took me so long to get straightened out with my number, exhaustion and weight but I feel really fantastic now at the five year point. I have my endocrinology visit next month to look for the cancer marker and ultrasound the area - fingers crossed and I'll let you know!
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6969393460553742353.post-9237148962342648162010-09-10T23:05:00.000-04:002010-09-10T23:06:10.783-04:00Thyroid Cancer Survivor's ConferenceThyroid Cancer Survivor's Association (ThyCa) Hosting 13th International Conference October 15-17, 2010<br />Thursday September 9, 2010<br />The Thyroid Cancer Survivor's Association (ThyCa) is hosting its 13th annual international conference, on October 15-17, 2010, in Dallas, Texas, at the Sheraton Grand Hotel at DFW Airport. <br /><br />According to ThyCa, the event is "for everyone whose life has been touched by thyroid cancer-- people being tested, those newly diagnosed, long-term survivors, people with advanced disease, caregivers, and friends." The conference will feature more than 80 sessions focusing on the latest research, advances in treatment and follow-up, issues for survivors and caregivers, and coping skills for well-being. More than 50 speakers -- including physicians and other specialists -- will be present. <br /><br />You can register in advance for a discount, and walk-in attendees are also welcome. For details and a registration form: <br />•Visit www.thyca.org <br />•E-mail: conference@thyca.org or thyca@thyca.org <br />•Write: ThyCa: Thyroid Cancer Survivors' Association, Inc, P.O. Box 1545, New York, NY 10159-1545 <br />•Call toll-free: 1-877-588-7904Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-17801774721902383582009-08-02T23:58:00.001-04:002009-08-02T23:59:20.061-04:00Well that's itNot losing weight anymore... This is so hard. My TSH level is 0.42 so I should be losing.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-6969393460553742353.post-89829419614881589182009-07-08T11:27:00.002-04:002009-07-08T11:36:35.655-04:00Good NewsI have some good news. I am exercising my ass off - literally! I am doing the Turbo Jam tapes at home and walking a great deal now that the weather is warmer. I have lost 12 pounds! It took three months to do but it is coming off slowly.<br /><br />My endocrinologist raised my synthroid now to 250 mcg. and that is helping. <br /><br />Do not let anyone tell you that just because you have no thyroid you have to be fat - it's not true! <br /><br />It has taken 2 years of trying to diet, I still don't eat that much and try to do the half plate of veges, quarter each of protein and whole grain starch, potato or brown rice. Hey I even had a piece of cake at my daughter's birthday -guilt free. <br /><br />It has taken 2 years of raising my synthroid.<br /><br />And it takes a great deal of exercise. If I don't exercise for a day I don't lose any weight. If I do exercise I have a good chance, some days I do, some days I don't and I do fluxuate by around three pounds from morning to night. But I know if I don't exercise I'm doomed. I also count household chores as exercise. If I clean vigorously or paint a room, I don't work out that day. If it's just regular chores, they don't count. <br /><br />I feel like I can lose some of the 45 pounds I've gained since my total thyroidectomy now. Twelve down, thirty-three to go... Whew!! <br /><br />Good Luck! Try the Turbo Jam tapes with Charlene Johnson. (they don't require too much coordination, because I am not coordinated at all!)Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-84206163121063511842009-02-06T22:50:00.002-05:002009-02-06T22:56:57.088-05:00Numbers are going back up!It's been four months supposedly at an optimum number of 0.43. But I have been getting really tired and I am STILL not losing weight. In fact I gained five pounds during the last 6 months, making that 45 pounds since surgery. Grrrr. I haven't changed anything except my schedule, I am still taking my 225 mcg of Synthroid at night. I am just getting up earlier in the morning than I was all summer (school year). I am now up to a 2.68, and want to go back down again. <br /><br />If anyone out there has any idea why this is happening, or has had it happen to them, please respond. Thank you!Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-6969393460553742353.post-30158982985658971762009-01-02T00:02:00.002-05:002009-01-02T00:03:00.921-05:00Happy New Year!Wishing all of you and your loved ones a safe, happy, and healthy 2009. If this is the year you have to have your thyroid removed, don't panic, you can still have a great year!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-61513099868908585792008-12-29T20:24:00.002-05:002008-12-29T20:28:26.552-05:00Mozilla Rules!I just wanted to pop on here with a public service message, ha ha. Do we have those anymore? Mozilla, as suggested by our esteemed Captain of Hogwash, is awesome. It remembers passwords for websites that you go on all the time, it doesn't have the autofill but a drop down box when you are filling something in which gives you choices you have used before in the same type of space. This is more versatile as with autofill you only had one answer it would fill in, such as email address. This way you can chose which email you want to fill in on which site, etc. I like it much more than the controversial Internet Explorer, which I always used because it was there, I guess. This Mozilla I suggest to everyone. When Internet Explorer gets its security issues straightened out, I for one am not going back. <br /><br />I hope everyone has a Happy New Year!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-50670696493660735232008-12-26T23:05:00.001-05:002008-12-26T23:06:40.098-05:00Total Thryoidectomy UpdateHello again. Sorry I haven’t been on here for a while. I wanted to revamp this whole site and tell my story from beginning to end but never had the time. I really wanted to create something here that would help people going in for a total thyroidectomy. Having the total thyroidectomy is scary and having been through it I wanted a place where others who are about to go through it could read someone else’s experience. <br /><br />So to recap, I have my entire thyroid removed 8/28/07. It is now over a year later and I am doing fine! There is hope. It took about a year, but my medication is finally straightened out, whew. The doctor who said 200 mcg was the synthroid maximum was incorrect. I am now taking 225 mcg of synthroid a day and my number last time was a 0.42. Which is exactly where they want you to be, if you have had cancer they want to keep your number below a one and above a 0 so you don’t go hyperthyroid. <br /><br />The bad new over a year later is that the forty pounds I gained after surgery is still with me. We are not friends but it won’t leave. I was under the false impression this entire year that when my medicine was straightened out, the extra pounds would come off. Not true. It is actually a struggle to maintain my sleek 185 – 180 pounds. I fluxuate between the two almost daily but have seen a 179 on the scale only once in all of this time. The synthroid levels or thyroid hormone levels being at the recommended level has not helped me at all. <br /><br />I still get tired in the afternoons, but I no longer seriously require a nap every day. Around 3:00 I do lose a great deal of energy. I do get up at 6:15 in the morning everyday and am at work at 7:00, just to put it in to perspective. When we have staff meetings at 4:00 it is a very long and arduous day. When I do get home at 3:00 if I don’t take a nap, I do usually slow down my activities. I definitely need to sit for a while, even if it is sitting down and preparing supper. So the sheer exhaustion of after the surgery is gone, but the tiredness is not completely gone. I know I feel good, but can’t remember how good felt before surgery, if you know what I mean. I do recall that before surgery, I could never sleep during the day, but now if I get the opportunity to lay down in the afternoon, I’m drooling on the pillow in minutes. My body is definitely more tired now. <br /><br />One other thing that is different now since the surgery that I attribute to having the total thyroidectomy surgery without medical evidence is my memory loss. It is difficult for me to remember things. I have started carrying a little notebook with me. I also now decide that some things aren’t even worth the effort it takes to try to remember. Last month I was trying to name my favorite Tony Morrison book and could not think of it, someone else was guessing titles and didn’t guess it. I honestly could not even bring myself to try to recall, because I knew I wouldn’t be able to. I came home and looked on my bookshelf and told the person the next day. It is just exhausting mentally to try to recall things that before the surgery I would have known without a doubt. It is so bad I try to hide it at work by writing everything down. I don’t forget the lessons I want to teach but have to write down the order I wanted to do things. It is quite odd, but I do definitely attribute it to the total thyroidectomy surgery. <br /><br />I also take my synthroid at night right before bed, and that seems to work for me! <br /><br />That is my update, I hope everyone is doing well too. If you ever have any questions, just put them into comments and I’ll answer you.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6969393460553742353.post-47430839211429536492008-11-01T02:09:00.001-04:002008-11-01T02:09:15.133-04:00Things I Have LearnedWhen they say wait an hour to eat – wait an hour and a half. <br /><br />Don’t take your multivitamin until and hour and a half after you have taken your synthroid or the absorption of your meds will be blocked.<br /><br />Just say no – to soy! Strange but true, soy also blocks absorption.<br /><br />Don’t take any antacids for four hours after taking your synthroid. <br /><br />If you take 5-HTP or other vitamin supplements wait the hour and a half on those as well.<br /><br />The doctor didn’t want to give me any more than 200 mcg. or there would be no wiggle room for them if I ever needed more, like for pregnancy or something. I was taking the max and my levels were not dropping anymore. I had to keep taking the 200 mcg. and finding other ways to make sure my body absorbed it. <br /><br />The best way to assure that you take your meds and hour and a half before eating in the morning I found is the set your alarm an hour and a half before you awaken. Keep a glass of water and the pills on your bedside table. Only wake up long enough to swallow the pill and crash right back out. Don’t get up for anything, I find I can’t get back to sleep if I do. Sometimes I am so sleepy when I take it when I actually wake up for the day I forget if I did or not, so I just check the water. If there is no water, I took my pill. This system has worked great for me. Let me know what works for you!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-88371476611601281992008-07-27T01:53:00.001-04:002008-07-27T01:54:59.827-04:00HurrahAlthough it is difficult to get to sleep at night, the painful sudden leg and foot cramps in the middle of the night are gone! Now that my thyroid level is good, no more insane cramping. Also, for eleven months after surgery I needed a nap every afternoon because of the fatigue, even if it was ten minutes I needed it. Even the smallest nap would take the edge of the tiredness. I know I definitely needed, not just wanted, an actual nap because before surgery I would lay down once in a while in the afternoon but never really sleep, even though I tried. <br /><br />After surgery, I could fall asleep with my head in my hands at the kitchen table I was so fatigued. I would sleep with the kids PBS channel on and my kid actually talking to me. Thank goodness she understood that mommy was tired because of her surgery and would let me sleep. Not only would she let me sleep, she would bring me a bottle of water. When I walked in from work, I’d drop everything and lay on the couch, she’d bring me cold water and come snuggle up. It was a difficult time, made easier because my child had compassion, but <strong>hurrah</strong> those days are over. Sure I get a bit fatigued but not like I was, if I do too much I get the normal amount of tired an overworked single mom gets, not the so tired I’m going to cry tired. <br /><br />So no fatigue and absolutely no leg and foot cramps anymore. I also noticed that my muscle aches are gone. After you have our thyroid removed, you will experience muscle pain, I think it feels like your muscles are getting ready to atrophy. I have actually kept on running every night; I think it’s been 12 or 13 nights in a row now. I have little shin splints and running wears we out, I stop and walk when I need to and then start running again, but I feel as though my muscles are coming back. What is so great about being human is no matter what our bodies go through, we can almost always get better or make positive changes for our own well being. Okay, to sum up one year after total thyroid removal, total thyroidectomy, the fatigue is gone, the feet and leg cramps are gone, and the general muscle malaise is over! There is hope, and if you are going through this please know it gets better!Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6969393460553742353.post-23423197920878600892008-07-19T22:33:00.001-04:002008-07-19T22:33:30.891-04:00Synthroid SleeplessnessNow that my synthroid is up to 250 mcg, I am back to not sleeping. I am still taking it at night and two hours before I take it I take an Advil PM as well. Even with the Advil PM I can’t sleep more than 5 hours a night. I am getting a lot done, but I am exhausted the next day and not getting a lot done when I should. It is not a fair trade off. The synthroid is absorbing better as my last numbers showed 8 down to 1.7 TSH level. Although the endocrinologist said that is not low enough for a cancer patient. People who had a tumor in their thyroid and had a complete thyroid removal should be less than one but over zero, delicate balancing act I think. I am going to see about taking less synthroid but not a drop all the way down to 225 again. If he prescribed me 75 mcg synthroid I could cut them in half and add that to the 200 pill and have 37.5 mcg, so 237.5 a day perhaps that would be a good balance. I’ll ask him in August when he does the year after ultrasound of the area.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6969393460553742353.post-68832569653913422542008-07-15T00:50:00.001-04:002008-07-15T00:55:16.994-04:00Great News!Great news! The biopsy showed it was just a cyst that looked different. I am very excited by this, although what a panic. Apparently this is the deal with cysts in the breast. If they get in there and it is solid it may be cancer and requires further testing, if they get in there and only pull out fluid it definitely isn't. so mine was fluid, the radiologist said it was like motor oil. Um ewww.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-76299590521331000822008-07-08T02:55:00.000-04:002008-07-08T02:56:19.282-04:00I found thyroid people.... a.k.a. thyroidians :)It’s been a sleepless kind of week; I have a biopsy on my breast on Friday. It will be nothing! It will be nothing! It will be nothing!<br /><br />With that being said, I found a great weight loss/exercise/healthy living website. It is www.sparkpeople.com. The founders made a lot of money on eBay and this is their way of giving back, the entire website is free. Every day for a week, I have been entering every meal and snack I eat. At the end of the day, it gives you your target range for calories, etc. and tells you what your totals were for the day. Then you can see the week displayed and see how you are doing. Just watching the calories and fat add up are causing me to change some of my snacking. Then you log in all of your exercise and sets up a cardio schedule and a strength-training schedule with exercises. The exercises are the old-fashioned do ‘em at home and not in a fancy gym kind and you pick and chose and set up what you want to do. I also record our nightly walks and now the swimming time during the day as well. I have lost 3 pounds this week. Yay. But as we know lost is not lost until it stays lost, so I’ll see how long it stays lost. Because it’s still the original five pounds I have lost of the thirty I gained since my total thyroidectomy. I still have 25 pounds to lose to reach my goal. I was in this place a month ago as well. Perhaps keeping track this way I can keep going down instead of up and down and due to this website, I definitely have increased my strength-training exercises. <br /> <br />And why I mention all of this on here is because I found the hypothyroid and no thyroid people, they are on this website. There are spark groups you can join to communicate with people on discussion threads and there is a thyroid group and a hypothyroid group. I joined both. So if you don’t want to be alone with your thyroid issues, like I was feeling, go over to www.sparkpeople.com and join the thyroid groups. I just shot a question over to someone who has no thyroid at all too, and look forward to receiving an answer. People really do reply to postings here to, so your questions are not out in cyberspace somewhere. I hope to see you there!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-57201934794620490312008-07-01T19:11:00.001-04:002008-12-10T02:53:25.063-05:00Level Finally!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimx4WRVivJMeirvtQb2fHRcIrboZccy1wAW7qqAmgVvTBUBWWQWFGzgOvkD3_rfP0n-LKN8qXtNXakOVTnlULBDTy40XvOp82imNmp1rdTdOV2MsCNuSHaok2vfdVD0sqrChErRH6-QQ8/s1600-h/1023403_hands_up_jumping.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimx4WRVivJMeirvtQb2fHRcIrboZccy1wAW7qqAmgVvTBUBWWQWFGzgOvkD3_rfP0n-LKN8qXtNXakOVTnlULBDTy40XvOp82imNmp1rdTdOV2MsCNuSHaok2vfdVD0sqrChErRH6-QQ8/s200/1023403_hands_up_jumping.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5218188395656903314" /></a><br />1.7 TSH finally! Yahoo. Yay! The nighttime dose is good. Ooops and I started the 250 mcg Friday night. So, 4 nights at that dose. I’ll go back to the 225 mcg now. I think that will be fine. I am very happy 8 to 1.7 in 7 weeks. There must be a better absorption rate of the synthroid when it is taken right before bed allowing it all of that sleeping time to absorb, instead of taking it an hour and a half before breakfast only giving it an hour and a half to absorb. I would also have to assume by the lab results that the 2 hours of not eating before taking the synthroid is long enough. If anyone is counting it took 11 months to get my TSH level straightened out since my total thyroid removal. It’s been a long haul and with all of the complaining I do, I feel glad to be alive and to have had the “best” cancer that someone can get, so that now I’m okay. <br /><br />Now for a check up on two sketchy spots on a mammogram tomorrow. It’s always something...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-2943958170337103412008-06-30T12:59:00.000-04:002008-06-30T13:00:28.782-04:00Dr's VisitI went to the doctor on Friday. I have to wonder why. She just sat in the chair and I sat on the edge of the exam table and we had a conversation, couldn’t we have done that on the phone? Actually no because you can never actually talk to a doctor on the phone, you mix messages with nurses and whoever answers the phone and get answering machine messages answering questions you never asked, and no answers to the questions you did ask. I also had my blood work done at the lab and will let you know as soon as I know about the nighttime dosing, if it has effected my TSH levels. <br /><br />I don’t mean to bitch about the new doctors; I guess I am just used to a different level of personalization. My child’s pediatrician is wonderful. I can talk to her anytime day or night and she personally returns my calls. Last winter she even let me bring my child to the office and met us there at 10:30 at night, so my girl could get started on antibiotics right away so she could go on her class trips. The pediatrician also knows that I panic when my baby is sick and “handles” me appropriately, if you know what I mean. <br /><br />Anyway, it was a good visit after all. She doesn’t think I am lactose intolerant but am having trouble in my intestines. I will try to take Citrucel everyday and see what happens. The higher levels of TSH really mess around with digestion. Perhaps it is that simple, that would be nice. I am not above trying anything to feel better. She also reiterated that my weight should straighten out when my levels do. <br /><br />On the soy issue, I had to tell her that I have drastically reduced my intake of soy, but if you check the label on anything that isn’t essentially fresh produce, it contains soybean oil. Apparently, this is magical stuff, so they put it in anything and everything. So, I do not feel that although I have eliminated straight up soy like: tofu, vege burgers, dogs, sausage, Chinese food with sauces and edememe, that I have eliminated all soy. Soy, remember, lessens the absorption of the synthroid. She gave me a prescription for 250 mcg of synthroid in anticipation of labs that are too high. Which isn’t positive thinking but nonetheless realistic I’m sure. I am starting to feel tired again during the day. She does feel however when I am regulated, I can start eating the soy again, and they will jack the micrograms up a bit to compensate because soy is healthy and eliminating it has completely changed my diets. Now that I have eliminated the dairy too, it is hard to find foods I want to eat, and yet I have not lost weight. <br /><br />Beyond that I anxiously await my labs to see where I am at and if the nighttime dosing is helping or hindering...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-29733010580193027212008-06-22T01:27:00.001-04:002008-06-22T01:27:41.854-04:00How long?Now that I am taking my synthroid at night, I wonder how long it takes to actually have an empty stomach. I researched on the net and the consensus seems to be twohours. Although one would think that it depends actually on what you eat, a steak would take longer to leave the stomach than an apple. I am not able to sleep too long, about five hours and then I am up, so I am thinking the synthroid is working. I’ll see next week after my TSH levels are tested.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-52731859351249656462008-06-07T09:21:00.001-04:002008-06-07T09:21:52.199-04:00Milk anyone?I feel I am lactose intolerant now, has anyone else had their thyroid removed and now found that to be true. Obviously the two shouldn’t be related, but I wonder if they are?Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-89567515239216306732008-06-05T21:25:00.000-04:002008-06-05T21:29:10.685-04:00Synthroid and AppetiteI’m not sure how the nighttime dosing is going. Simply because I am so hungry the next before I take it, I am craving food about an hour before I am supposed to take it. I think that the synthroid and appetite go hand in hand. After I take the synthroid the appetite wanes, but at the end of the day, before I take more, I seem hungrier. I have gained back one of the five pounds I just lost and can’t help snacking a bit at night. I may have to go back to morning... Is anyone else getting hungry a few hours before they take the synthroid?Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-6969393460553742353.post-86456610450914177592008-05-29T22:56:00.000-04:002008-05-30T14:39:24.030-04:00Nighttime synthroidHi Hungry Monkey and all – I am feeling fine with the switch to taking the Synthroid at night instead of in the morning actually. I don't know about the lab results and if the absorption is any better. I have labs in 3-4 weeks, and then I'll know. When is your next test to see how it is absorbing? I wonder about that. As far as sleep, someone else asked me too and I actually feel like I am sleeping a bit better. I have always had sleeping problems and I feel like I am not waking up as much in the night for no reason. I was wondering if it is evening out my melatonin or something. I am taking it at 11:00 pm and having my last snack right before 9:00 pm, so it is two hours before I take it when I last eat. I hope it shouldn’t be longer. How long are you waiting before you take the synthroid? I hope you are feeling good!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-90785508723401853362008-05-23T22:55:00.001-04:002008-05-23T22:56:10.513-04:00Synthroid OkayTaking my 225 mcg. synthroid at night now. If I have a little snack as I did last night (popcorn), I wait two hours to take it. I am feeling good, actually quite energized. I only napped one day this week after work. For those of you who have had the total thyroidectomy, you know only one nap in a week is good progress. I actually lost two pounds, although I really can't count it until it has been off a week...Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6969393460553742353.post-80261946471341073922008-05-21T16:53:00.000-04:002008-05-21T16:54:11.622-04:00Or does he?The endocrinologist’s office called again when I came home from work today. It was a different woman, who wanted to know if the appointment that was made for me last night was a “needed” appointment. I told her I did not know what she meant by needed. She told me that he just saw me in October and she didn’t know if he needed to see me again. Besides the fact that my TSH isn’t straightened out yet, I told here that I was told he likes to do an ultrasound a year after a total thyroidectomy if the total thyroidectomy was for thyroid cancer. I kind of got upset by this call, I told her if he doesn’t want to be my doctor anymore it didn’t matter. She said no, that’s not it and quickly got off the phone. <br /><br />I was just feeling that they had just “let me go” and were making things right. Until this phone call, of course. I didn’t’ know that the lab should have been sending them my TSH levels along with sending them to my primary care physician. My thing is, is that first the surgeon takes care of your synthroid and checking your TSH and then you go to the endocrinologist, or they work together. I know my surgeon called him, so that was good. Then I get the primary care physician because the surgeon can’t do it anymore, because they only get you so far after surgery. The primary care says they can take care of the synthroid and TSH levels. When that doesn’t work out like they thought, that nurse recommends calling the endocrinologist and you start talking to them again. They are upset they haven’t heard from me since October, but I didn’t know they were supposed to. I did not get a pamphlet on aftercare etiquette from any of the various offices and doctors that have been in my life for the last year, so I do not know. someone needs to tell patients what is expected of them. All I know is that I need my levels checked every six weeks, and a prescription, and someone to keep increasing the Synthroid prescription. Beyond that I don’t really know the protocol and it wasn’t explained to me. I am aggravated now, is it a “needed” appointment? I don’t know.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-38077473106965676552008-05-21T16:40:00.000-04:002008-05-21T16:41:59.111-04:00The endocrinologist cares, he really does...I spoke to another one of the endocrinologist’s nurses last evening. She called me. It was nice of her to call and admit that they had lost track of me and wanted my TSH to be checked by him and not my primary care physician. I said that was find and she said they would send me lab papers. She even apologized. <br /><br />The endocrinologist’s nurse called back and said that the endocrinologist usually sees patients a year after their total thyroidectomy. If the patient had thyroid cancer, he likes to do an ultrasound a year after the total thyroidectomy. Since I had the thyroid cancer and the total thyroidectomy, she wanted to schedule me for the ultrasound. Well we schedule that up for August. We discussed taking the synthroid at night, TSH levels actually needing to possibly go lower that they should for a person who had thyroid cancer and the total thyroidectomy. The levels need to be lower than the 1.5 to 4.5 range that they recommend. The optimum TSH level for someone who had a total thyroidectomy because of cancer is right at 1. She explained that sometimes the synthroid will take the patient lower than the optimum TSH into the hyperthyroid instead of hypothyroid and then the endocrinologist with lower the micrograms of synthroid.<br /><br />I felt good after speaking to her, I certainly felt a lot better about the endocrinologist and his office in general. They say online if you don’t feel a good rapport with your endocrinologist, you should find a new one. Well, there is only one endocrinology office in the town I live in, so I’d like to make it work so I’m not traveling 45 minutes or something to the doctor when I can just go 10 minutes away. So I feel a renewed faith that the endocrinologist knows what is going on and what he is doing, and cares about what happens to me...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-71510026757993354272008-05-20T19:30:00.000-04:002008-05-20T19:33:06.182-04:00Endocrinologist Conversation... FinallyI spoke to the endocrinologist finally, well to the endocrinologist’s nurse anyway. They actually do want me to start taking my synthroid at bedtime instead of in the morning. So it wasn’t a mistake on the letter, people are taking synthroid at bedtime. The endocrinologist’s nurse said that the key is no eating at least an hour before you take the pill and at least an hour after. Since I am not absorbing the synthroid as well as some people do, this would allow the whole night to go without eating or taking any vitamins or anything that may blog the absorption or synthroid. <br /><br />I asked her when to make the switch like if I take it in the morning and then the next night, she said that it would be okay to take it in the morning and then that night again to start. Well, that makes me a little nervous. So I usually take it at 5:30 a.m. I think I will take it at 11:00 for the bedtime one, right before I doze off. I am going to wait until Friday though, if I feel funky because of taking too much I’d much rather it not be on a workday. <br /><br />I really thought the endocrinologist had made a mistake on the letter. After I found the article on About.com from January about studies regarding people taking their synthroid at night, and talked to the endocrinologist’s nurse. I think I will try taking my synthroid at night, seeing if I get better absorption. Then perhaps eventually I will be able to drop back to 200 mcg of synthroid, and only having to pay the one prescription deductible each month. Well, we’ll see.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6969393460553742353.post-79605471528637974742008-05-18T11:58:00.001-04:002008-05-18T12:00:47.904-04:00Hold onhttp://thyroid.about.com/b/2008/01/17/when-should-you-take-your-thyroid-medication.htm<br /><br />Ok wait a minute at the URL above there is an article about taking your medicine at bedtime instead of in the morning. Again it is on about.com because aparently Mary Shomon is the only one on the net letting us know about these things. Monday I will call the endo and see about this now... I'll let you know.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6969393460553742353.post-37816310060515286472008-05-17T23:03:00.000-04:002008-05-17T23:04:30.017-04:00Letter from the EndocrinologistI received a strange letter from the endocrinologist today that proves to me how unimportant a patient I am. It seems that the doctor didn’t even look over my labs, which the regular doctor faxed over for me because I was trying to get an appointment. In the letter the endo recommended that I go on 250 mcg of synthroid, when I just started the 225 mcg’s. I can understand that mistake. I feel better now that I was on about.com for thyroid (which is a link over on the side) and someone else is on 225 mcg’s as well. I hadn’t know anyone who was taking that much until then so that is a great comfort. The part of the letter that made such an impact on me was that they reminded me to take my medicine at bedtime. At BEDTIME! They have got to be kidding, everyone knows that you have to take the medicine in the morning on an empty stomach. I actually wake up an hour earlier than I need to, in order to take my meds and then go right back to sleep. I kept the two pills and a glass of water on the nightstand. It makes it hard to forget and by taking it an hour before I wake up I am also assured that I do not eat or drink or do anything to block its absorption. It must seems that an endocrinologist should know that one takes these type of medicine in the morning...Unknownnoreply@blogger.com0