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.
I hope everyone has a Happy New Year!
Monday, December 29, 2008
Friday, December 26, 2008
Total Thryoidectomy Update
Hello 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.
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.
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.
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.
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.
I also take my synthroid at night right before bed, and that seems to work for me!
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.
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.
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.
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.
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.
I also take my synthroid at night right before bed, and that seems to work for me!
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.
Saturday, November 1, 2008
Things I Have Learned
When they say wait an hour to eat – wait an hour and a half.
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.
Just say no – to soy! Strange but true, soy also blocks absorption.
Don’t take any antacids for four hours after taking your synthroid.
If you take 5-HTP or other vitamin supplements wait the hour and a half on those as well.
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.
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!
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.
Just say no – to soy! Strange but true, soy also blocks absorption.
Don’t take any antacids for four hours after taking your synthroid.
If you take 5-HTP or other vitamin supplements wait the hour and a half on those as well.
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.
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!
Sunday, July 27, 2008
Hurrah
Although 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.
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 hurrah 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.
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!
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 hurrah 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.
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!
Saturday, July 19, 2008
Synthroid Sleeplessness
Now 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.
Tuesday, July 15, 2008
Great 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.
Tuesday, July 8, 2008
I 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!
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.
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!
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.
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!
Tuesday, July 1, 2008
Level Finally!
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.
Now for a check up on two sketchy spots on a mammogram tomorrow. It’s always something...
Monday, June 30, 2008
Dr's Visit
I 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.
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.
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.
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.
Beyond that I anxiously await my labs to see where I am at and if the nighttime dosing is helping or hindering...
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.
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.
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.
Beyond that I anxiously await my labs to see where I am at and if the nighttime dosing is helping or hindering...
Sunday, June 22, 2008
How 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.
Saturday, June 7, 2008
Milk 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?
Thursday, June 5, 2008
Synthroid and Appetite
I’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?
Thursday, May 29, 2008
Nighttime synthroid
Hi 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!
Friday, May 23, 2008
Synthroid Okay
Taking 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...
Wednesday, May 21, 2008
Or 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.
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.
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.
The 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.
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.
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...
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.
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...
Tuesday, May 20, 2008
Endocrinologist Conversation... Finally
I 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.
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.
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.
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.
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.
Sunday, May 18, 2008
Hold on
http://thyroid.about.com/b/2008/01/17/when-should-you-take-your-thyroid-medication.htm
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.
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.
Saturday, May 17, 2008
Letter from the Endocrinologist
I 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...
Friday, May 16, 2008
Dr. Oz where are you?
I have written to Dr. Oz from the Oprah show, I think he is smart. I wanted his advice on losing weight after thyroid surgery. Even though Oprah herself has had thyroid issues, he has not responded yet. I'll let you know if he does.
I also wrote to Dr. Sears from The Zone Diet, which is the diet I was on for two years. Ok not a diet but a way of eating. And now that is noe working for me any longer, at all. He has not responded either.
All my regular doctor said was that it would take longer to come off than go on. All the endo said was the get the meds regulated first.
Dr. Oz, let's get on it and write me back! Please...
I also wrote to Dr. Sears from The Zone Diet, which is the diet I was on for two years. Ok not a diet but a way of eating. And now that is noe working for me any longer, at all. He has not responded either.
All my regular doctor said was that it would take longer to come off than go on. All the endo said was the get the meds regulated first.
Dr. Oz, let's get on it and write me back! Please...
Wednesday, May 7, 2008
Silly Synthroid
Okay my TSH is 8.56 and I was on 200 mcg of synthroid. I have been on 200 mcg’s for 16 weeks. I was 12 then 10 now 8 at each six week interval. Therefore, I am going down, but quite slowly. Now the doctor added 25 more mcg’s, so it is at 225 the limit of how much synthroid you can have. I am hesitant to take so much. I don’t know what would happen, but feel like it is a great deal of synthroid. No one else I’ve spoken to has a script for that much. I am thinking I might cut the 25 mcg’s in half and just had half to begin with. It does take six weeks to even out. I am waiting to talk to the endocrinologist to see if that is what I should be taking. this balancing of the medicine and the TSH level is the hardest part of losing one’s thyroid. Some other people I have talked to have been leveled within six months of surgery, although none of them waited three weeks to got on meds, because they know they weren’t going to have the radioactive iodine at that time. The surgeon was letting me bottom out so if I had the radioactive pill my body would crave the iodine. The oncologists decided that it wasn’t necessary. but by then numbers were above 100. After the first six weeks on synthroid I was down to a 73. The next six weeks I was down to a 42. Then a 23 then a 12, 10, and 8. In between all of the switches my synthroid was going upgradually 135 to 150 to 175 to 200. Hmmm, I am missing one dosage change. I need to get that from the doctor’s, well one of the doctor’s at least.
Okay,l I have to call the general doctor and have them fax my last labs to the endo tomorrow, and then the endo will tell me what to do. I’ll let you know.
Okay,l I have to call the general doctor and have them fax my last labs to the endo tomorrow, and then the endo will tell me what to do. I’ll let you know.
Monday, May 5, 2008
Friday, May 2, 2008
Hospital Hell
Okay, after the recovery room, they wheeled me into a regular room. I barely remember that. I remember the nurse was like an Angel. She came in to give me drugs but they wanted me to drink liquid drugs instead of shooting me up. I tried not to take it. It was funny because I could barely talk. When she finally got me paper and pen and figured out what I wanted. She laughed saying usually people are asking for more drugs and I was trying to get them to give me ibuprofen instead of the prescription. She did tell me though that at that time I still had meds in me and the pain hadn’t hit yet. She explained me that you need to take pain meds before you are in pain so they can work at a constant level not try to bring you back from horrible pain. I took what she wanted me to take and then she brought me the most amazing thing... Oxygen. If you get this surgery, make sure they give you oxygen after. It soothed and cooled my throat, which was about 3,000 degrees before the oxygen.
I wanted to sleep, that was it, sleep until I could go home to my baby. Sleep and recover in the hospital? Not in this one. I had the roommate from hell and there were no more rooms. This dear woman, I don’t know why she was in there but apparently she had been there a long time. My usual gentle self wanted to hold the pillow over her face by the time I left, just so she would shut-up. After I took my meds and got my oxygen tank, she got on the phone. She yelled at one of her children for about an hour. Whew, I thought, she’s done. No, she had more kids, called the next one, and yelled at that one too for about an hour too.
I asked the nurse to help me sleep. She game me headphones and I found a classical music station on the television and cranked that up into my ears. I could still hear her. Then I put the motor for the oxygen tank on my pillow, so I had that noise too. The only option they had was to put me in the hall and I wasn’t going into the hall, so I had to deal. At about midnight she was quiet. Yay, sleep. What the hell is that? Her TV, where are her earphones? Grrr. Okay, twelve more hours and I can go home.
Around one, she finally shut the television off and went to sleep, hallelujah. Sleep. Two hours later, she was screaming in pain. The nurses told her it wasn’t time for her medication yet and they couldn’t give her any. In and out the nurses went. She was screaming and crying. I felt bad for her then, well until the nurses left and she called someone else at 3 am on the cell phone...
There was no hope for me sleeping, I just had to bide my time so I could get home and finally sleep. I watched some television programs and nodded off when I could. My parents finally got there at eight a.m. and my mother, champion advocate started rallying for me to go home. You had to eat to get out of the hospital. I checked the menu to see what I thought a person who just had their throat slip should it, and there I saw it yogurt. Cold, smooth and had protein. Swallowing hurt so bad I didn’t want to swallow any extra times, so every swallow had to count. I ate that yogurt so I could go home. My mom did a good job doctor wrangling and although it took until 12:30, I finally got to go home and my parents headed out for their eight hour ride home. And I slept.. Well until my daughter got home from school a couple of hours later. She was so good though, I paid the neighbor boy who is older, and she has known all her life, to play with her. So I was able to lay in bed and rest. His Grammy brought me a case of yogurt, what a smart lady. That was what I ate for a week, yogurt, and ice water. And since I didn’t have a metabolism, I didn’t even lose a pound. Bonus. Not.
My friend told me that when the renovations are done at our hospital, there will only be private rooms and other people won’t have to suffer with the roommate from hell as I did. So if you get anything out of this. Stock up on yogurt before you go into the hospital, and when you get to your room ask them if you can have an oxygen tank.
I wanted to sleep, that was it, sleep until I could go home to my baby. Sleep and recover in the hospital? Not in this one. I had the roommate from hell and there were no more rooms. This dear woman, I don’t know why she was in there but apparently she had been there a long time. My usual gentle self wanted to hold the pillow over her face by the time I left, just so she would shut-up. After I took my meds and got my oxygen tank, she got on the phone. She yelled at one of her children for about an hour. Whew, I thought, she’s done. No, she had more kids, called the next one, and yelled at that one too for about an hour too.
I asked the nurse to help me sleep. She game me headphones and I found a classical music station on the television and cranked that up into my ears. I could still hear her. Then I put the motor for the oxygen tank on my pillow, so I had that noise too. The only option they had was to put me in the hall and I wasn’t going into the hall, so I had to deal. At about midnight she was quiet. Yay, sleep. What the hell is that? Her TV, where are her earphones? Grrr. Okay, twelve more hours and I can go home.
Around one, she finally shut the television off and went to sleep, hallelujah. Sleep. Two hours later, she was screaming in pain. The nurses told her it wasn’t time for her medication yet and they couldn’t give her any. In and out the nurses went. She was screaming and crying. I felt bad for her then, well until the nurses left and she called someone else at 3 am on the cell phone...
There was no hope for me sleeping, I just had to bide my time so I could get home and finally sleep. I watched some television programs and nodded off when I could. My parents finally got there at eight a.m. and my mother, champion advocate started rallying for me to go home. You had to eat to get out of the hospital. I checked the menu to see what I thought a person who just had their throat slip should it, and there I saw it yogurt. Cold, smooth and had protein. Swallowing hurt so bad I didn’t want to swallow any extra times, so every swallow had to count. I ate that yogurt so I could go home. My mom did a good job doctor wrangling and although it took until 12:30, I finally got to go home and my parents headed out for their eight hour ride home. And I slept.. Well until my daughter got home from school a couple of hours later. She was so good though, I paid the neighbor boy who is older, and she has known all her life, to play with her. So I was able to lay in bed and rest. His Grammy brought me a case of yogurt, what a smart lady. That was what I ate for a week, yogurt, and ice water. And since I didn’t have a metabolism, I didn’t even lose a pound. Bonus. Not.
My friend told me that when the renovations are done at our hospital, there will only be private rooms and other people won’t have to suffer with the roommate from hell as I did. So if you get anything out of this. Stock up on yogurt before you go into the hospital, and when you get to your room ask them if you can have an oxygen tank.
Sunday, April 27, 2008
My Experience – First Installment
If you are having a total thyroidectomy, removal of your thyroid, I wanted to give some encouragement. It is kind of scary because it is surgery with anesthesia and all. I was lucky to have a friend who is a breast cancer surgeon, whose partner actually did my thyroidectomy upon her recommendation. She also was able to take care of choosing the anesthesiologist, because they asked me I had no idea deferring those decisions to her. In that way I was totally blessed that this woman is in my life. And her different mindset was comforting. She is in surgery all of the time, while I (like most of you I assume), are not. Thank goodness. To her surgical mind, this surgery I needed was no big deal, to me it was the scariest thing ever. She said it’s an in and out surgery, no big deal. In my mind for the next three weeks waiting for surgery, I repeated that over and over in my head, “in and out, no big deal.” It comforted me.
Like other surgeries, you can’t eat or drink past midnight. My surgery was scheduled for 11:00 and they didn’t end up taking me until 2:00. The waiting throughout this entire 5-month ordeal to get to this point and then the waiting that day was the more horrific part. Our minds create terrible scenarios and we must rein them in (at least mine did). On the day of surgery, I was able to bring my daughter to her school for the first day of school, which was nice I wouldn’t have been able to do that if I had been starting my own brand new teaching career for the first time on that day. That was nice, I kept thinking of her in my head all day and what a big first grader she is. I also spent time worrying if the surgeon had lunch, maybe I asked them to tell him that he should have a little nap after his last surgery so he’d be fresh for mine. I know, I know...
When they came to get me for surgery they gave me whatever it was and I said bye to my mom, I had a picture of my daughter that they let me keep in a plastic bag in my bed and I was holding that and I was out before I hit the doorway of the room. The next thing I knew I was in the most horrific pain I had ever been in and there were bright lights blinding me. I started moving around and trying to talk, they told me not to and gave me something. I woke up again, the surgeon was looking at me with his bushy eyebrows and little blue cap on, and I signed thank you to him. I was, at that point, quickly remembering where I was and thankful to have woken up. Now if you know the sign for thank you it is a hand from the chin and of course, you mouth the word at the same time. At that point, my mind always being my best buddy, I had to hope that he knew I said thank you and not the sign where you brush your fingers under your chin for an F you. I never asked him, I hope he knew. Wouldn’t that be crazy if I did the wrong sign or he took it wrong, my throat hurt so badly, it was really a toss up.
I heard him talking to somewhere in the ether, saying she had a very well behaved little girl who would like to see that her mother is okay and could she come in for a moment. I fell asleep again and awakened to my mother’s voice, and felt a little hand touch mine, and it was her, my reason for everything. I tried to talk to her but I knew after a moment that I wasn’t making any sounds that were actually words. Thank goodness, we sign a bit to each other. This is lucky so I was able to tell her I loved her and to be a good girl for Grammy and Grandpa. I could only blow her kisses; I was not moving my neck at that point. My mother told me it was already 7:00 at night and they had to take her home to bed. I couldn’t believe it was 7:00; apparently, the side of my thyroid with Hashimoto’s disease was so huge that he had a difficult time getting it out. He had to remove a parathyroid, and saw another one that looked sketchy, so he left a blue stitch in it, so if I ever had trouble the next surgeon would know which one. Odd. I equate it to leaving a flag on the moon, he was marking his territory, I think.
I had to spend one night in the hospital, I’ll tell you about that next post.
I said this would be encouraging, so if it doesn’t sound it, well, I’m here to write it and that is encouraging in itself!
Like other surgeries, you can’t eat or drink past midnight. My surgery was scheduled for 11:00 and they didn’t end up taking me until 2:00. The waiting throughout this entire 5-month ordeal to get to this point and then the waiting that day was the more horrific part. Our minds create terrible scenarios and we must rein them in (at least mine did). On the day of surgery, I was able to bring my daughter to her school for the first day of school, which was nice I wouldn’t have been able to do that if I had been starting my own brand new teaching career for the first time on that day. That was nice, I kept thinking of her in my head all day and what a big first grader she is. I also spent time worrying if the surgeon had lunch, maybe I asked them to tell him that he should have a little nap after his last surgery so he’d be fresh for mine. I know, I know...
When they came to get me for surgery they gave me whatever it was and I said bye to my mom, I had a picture of my daughter that they let me keep in a plastic bag in my bed and I was holding that and I was out before I hit the doorway of the room. The next thing I knew I was in the most horrific pain I had ever been in and there were bright lights blinding me. I started moving around and trying to talk, they told me not to and gave me something. I woke up again, the surgeon was looking at me with his bushy eyebrows and little blue cap on, and I signed thank you to him. I was, at that point, quickly remembering where I was and thankful to have woken up. Now if you know the sign for thank you it is a hand from the chin and of course, you mouth the word at the same time. At that point, my mind always being my best buddy, I had to hope that he knew I said thank you and not the sign where you brush your fingers under your chin for an F you. I never asked him, I hope he knew. Wouldn’t that be crazy if I did the wrong sign or he took it wrong, my throat hurt so badly, it was really a toss up.
I heard him talking to somewhere in the ether, saying she had a very well behaved little girl who would like to see that her mother is okay and could she come in for a moment. I fell asleep again and awakened to my mother’s voice, and felt a little hand touch mine, and it was her, my reason for everything. I tried to talk to her but I knew after a moment that I wasn’t making any sounds that were actually words. Thank goodness, we sign a bit to each other. This is lucky so I was able to tell her I loved her and to be a good girl for Grammy and Grandpa. I could only blow her kisses; I was not moving my neck at that point. My mother told me it was already 7:00 at night and they had to take her home to bed. I couldn’t believe it was 7:00; apparently, the side of my thyroid with Hashimoto’s disease was so huge that he had a difficult time getting it out. He had to remove a parathyroid, and saw another one that looked sketchy, so he left a blue stitch in it, so if I ever had trouble the next surgeon would know which one. Odd. I equate it to leaving a flag on the moon, he was marking his territory, I think.
I had to spend one night in the hospital, I’ll tell you about that next post.
I said this would be encouraging, so if it doesn’t sound it, well, I’m here to write it and that is encouraging in itself!
Saturday, April 26, 2008
Ode to my Thyroid
I never really knew you were there
just humming away.
Except when I gained weight
and cursed you.
Or when I ate early in the morning
just to get you going.
Then I knew you were there.
I lost forty pounds,
it was hard
Two years, working together,
at least I thought we were.
Then I knew you were there.
My voice was going in and out,
I didn’t know you weren’t alone.
She felt a lump in you,
he saw it on the screen.
Cancer on one side,
Hashimoto’s disease on the other.
Who is Hashimoto, he can have
his disease back.
I knew you weren’t there,
awakening, groggy, in unbearable
pain, you hurt so much, even though
you were gone.
Good-bye my thyroid,
take that tumor with you.
I’m so fucking tired, I wish
you were still here,
alone...
just humming away.
Except when I gained weight
and cursed you.
Or when I ate early in the morning
just to get you going.
Then I knew you were there.
I lost forty pounds,
it was hard
Two years, working together,
at least I thought we were.
Then I knew you were there.
My voice was going in and out,
I didn’t know you weren’t alone.
She felt a lump in you,
he saw it on the screen.
Cancer on one side,
Hashimoto’s disease on the other.
Who is Hashimoto, he can have
his disease back.
I knew you weren’t there,
awakening, groggy, in unbearable
pain, you hurt so much, even though
you were gone.
Good-bye my thyroid,
take that tumor with you.
I’m so fucking tired, I wish
you were still here,
alone...
Scar
Things I Have Learned:
When they say wait an hour to eat – wait an hour and a half.
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.
Just say no – to soy! Strange but true, soy also blocks absorption.
Don’t take any antacids for four hours after taking your synthroid.
If you take 5-HTP or other vitamin supplements wait the hour and a half on those as well.
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.
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!
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.
Just say no – to soy! Strange but true, soy also blocks absorption.
Don’t take any antacids for four hours after taking your synthroid.
If you take 5-HTP or other vitamin supplements wait the hour and a half on those as well.
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.
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!
Part Two
Well, here I am starting part two, so I thought I’d start a blog and share with you. I hope that there are other people without a thyroid out there too, who will be able to add comments and offer help. There is a lot of information on the net for people with thyroid disease but not much information I could find for living well without your thyroid, beyond the usual take your medicine...
I am on synthroid 200 mcg a day.
I am on synthroid 200 mcg a day.
Life without a thyroid.
Part One: Sucked. Medicine regulation is taking 8 months and I am almost there. TSH Level 10.
Part Two: Losing the thirty pounds I gained when I lost my thyroid.
Part Three: Happily Ever After
Part Two: Losing the thirty pounds I gained when I lost my thyroid.
Part Three: Happily Ever After
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