RAI Treatment
Comments
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So Glad I Could Be a Little HelpKYGirl71 said:Giving me HOPE...
Julie,
Thank you from my heart for this post, it truly helped me today. My doctor's appointment at the cancer center is in a couple of hours and because of your post I added a few more questions to the already million I have wrote down!
I have always been a fighter, just a little weak at the moment. I have been through so much in my life (like everyone in the world, I know)...could be better, could be worse, right?
You mentioned the difference between the Levothyroxin and the Synthroid...you also said your TSH levels have been stable for two years....here's the question...how often do you have to have that level checked, and if you don't mind me asking...about how much more is the Synthroid? I am able to get the two Levothyroxin scrips for $4 a piece through the Wal-Mart $4 scrip plan, so that is why I am on the Levothyroxin. However, my TSH level has been stable for the last 3 months, but before that, I was getting poked for a new level reading like every month or less, this can become quite expensive, especially when I have 0 insurance.
I work a full-time job and deal with the public every single day of my life....UGH. Like you, there are so many days I just don't want to see another human being...EVER! They truly get on my nerves, annoy the crap out of me, and sometimes.....well, okay, everyday...I have the feel for jumping over the counter and coming after a rude, etc customer!! I am truly not a people person, but I do need a job...lol! Of course, I would never literally attack anyone without justification....it's just that some people annoy the crap out of me and usually it is the last nerve in my body that they strike...I do have control over what my body may do, just sometimes not what may come out of my mouth...I am very opinionated and don't beat around the bush or sugar coat any of my comments...
Yesterday was a bad day for me, today isn't so bad yet until some idiot screws it up,,I'm off work today too, that makes a difference. There are just so many days I feel like I need to live in a bubble on that boat that is slowly sinking...frustration and irritation are the only two words I can think of at the moment to describe my mentality right now...well everyday....just don't want to deal with people..at all.
You also mentioned hearing issues..I have these too, feel like an idiot when I have to ask a customer to repeat what they said like 20x. However, my main issue is memory loss, had a customer the other day that told me they wanted Miracle Whip on their sandwich and I swear I have to ask her 6x if she wanted MW or Mayo. I literally can not remeber anything for any longer than a minute. The scary part is that Alzheimers (sorry spelling isn't the greatest)runs deep in my family. Sometimes I wonder if it is early signs of that disease or just something lacking in my body that causes this loss so quickly. This is not only frustrating, but very embarrassing as well. The customer I dealt with was truly wonderful and didn't get aggravated or annoyed with me at all, these types of customers are few and far between, trust me!
I wish you the best in this world with all that you are going through and thank you so much for the inspiration that I truly needed today...especially today.
Blessings to you,
Samantha-KYGirl71
Samantha,
You sound like a really tough cookie. I mean that in a good way. You are a survivor. My memory is really bad too. I have sticky notes at work that I put everywhere. My coworkers even walk by my desk and slap them on my scrubs and sometimes right on my forehead. One on my forehead was written backwards and said, "don't forget to wash your hands" so I would see it in the mirror when I went to the bathroom. Kind of like when they spell AMBULANCE backwards so you can read it in your rear view mirror. I am fortunate to have a good group of people to work with for the most part. They laugh with me instead of at me.
Oh, I am also very clumsy now. Once in my life I had much grace and poise. One of the doctors had to remind me today not to trip over her chair mat AGAIN as I was leaving her office with a stack of reports. You know that plastic mat you put under your office chair so it will slide when you have carpet in your office. Well, hers is just slightly too big and folds over the edge of her desk as the base and I never fail to forget it's there.
I walk around with empty vials of vaccines in my pocket with sticky notes as to what patient I administered them to and which part of the body so that I won't forget to record them in the computer. By the end of the day I am weighed down with glass vials. No wonder I have back problems. Oh and then there's my friend Lisa at the office who is sick and tired of me asking where supplies are AGAIN and AGAIN. So she took the label maker and marked the cabinets and drawers with everything that is in them. Makes it really easy to train the newbies though. I just tell them to go look at the labels and find what they need. I make them think it's for them so they don't think I am a complete idiot. Lisa is kind enough to go along with it.
I pay $26.50 or thereabouts for my Synthroid for a thirty day supply. I don't think insurance really helps me. My co-pay is more than the cost of the medication. I still don't get that. So, from what Craig says, you can get it for the same price as I.
I doubt that this is early Alzheimer's. I think it's a symptom of not having a thyroid. This seems to be a common denominator for most of us. We just have to learn to be patient with ourselves, laugh at our misgivings and hope the ones we love and work with will laugh with us and support us. I think I get better at making adjustments to my memory loss. Yeah, I look super silly walking around wearing bright colored sticky notes but it makes my patients laugh and they always enjoy seeing me when they come in for their appointments. I keep them laughing. Most of them are older because I live and work in a retirement community. They complain and make jokes about how they are shrinking with age every time I measure their height. They all notice the trend in how we move down in height and out in width. I just say "gravity happens." Some of them I know well enough to tell them that I used to wear a bra size of 34C and now I wear a 34 Long. Have to be careful saying that to the ones with incontinence problems though. Hopefully they have on their depends.
Hope your appointment went well. I look forward to hearing about it.
Live, Love and Laugh my friend,
Julie-SunnyAZ0 -
Memory etcKYGirl71 said:Giving me HOPE...
Julie,
Thank you from my heart for this post, it truly helped me today. My doctor's appointment at the cancer center is in a couple of hours and because of your post I added a few more questions to the already million I have wrote down!
I have always been a fighter, just a little weak at the moment. I have been through so much in my life (like everyone in the world, I know)...could be better, could be worse, right?
You mentioned the difference between the Levothyroxin and the Synthroid...you also said your TSH levels have been stable for two years....here's the question...how often do you have to have that level checked, and if you don't mind me asking...about how much more is the Synthroid? I am able to get the two Levothyroxin scrips for $4 a piece through the Wal-Mart $4 scrip plan, so that is why I am on the Levothyroxin. However, my TSH level has been stable for the last 3 months, but before that, I was getting poked for a new level reading like every month or less, this can become quite expensive, especially when I have 0 insurance.
I work a full-time job and deal with the public every single day of my life....UGH. Like you, there are so many days I just don't want to see another human being...EVER! They truly get on my nerves, annoy the crap out of me, and sometimes.....well, okay, everyday...I have the feel for jumping over the counter and coming after a rude, etc customer!! I am truly not a people person, but I do need a job...lol! Of course, I would never literally attack anyone without justification....it's just that some people annoy the crap out of me and usually it is the last nerve in my body that they strike...I do have control over what my body may do, just sometimes not what may come out of my mouth...I am very opinionated and don't beat around the bush or sugar coat any of my comments...
Yesterday was a bad day for me, today isn't so bad yet until some idiot screws it up,,I'm off work today too, that makes a difference. There are just so many days I feel like I need to live in a bubble on that boat that is slowly sinking...frustration and irritation are the only two words I can think of at the moment to describe my mentality right now...well everyday....just don't want to deal with people..at all.
You also mentioned hearing issues..I have these too, feel like an idiot when I have to ask a customer to repeat what they said like 20x. However, my main issue is memory loss, had a customer the other day that told me they wanted Miracle Whip on their sandwich and I swear I have to ask her 6x if she wanted MW or Mayo. I literally can not remeber anything for any longer than a minute. The scary part is that Alzheimers (sorry spelling isn't the greatest)runs deep in my family. Sometimes I wonder if it is early signs of that disease or just something lacking in my body that causes this loss so quickly. This is not only frustrating, but very embarrassing as well. The customer I dealt with was truly wonderful and didn't get aggravated or annoyed with me at all, these types of customers are few and far between, trust me!
I wish you the best in this world with all that you are going through and thank you so much for the inspiration that I truly needed today...especially today.
Blessings to you,
Samantha-KYGirl71
Hi. I understand your fears with the memory problems - my dad has alzheimers.
My memory has slowly been inproving - I've honestly been doing brain exercises - I got a book from the book store and have been using it. I am still forgetful, and I talk to myself a lot to remind me of things to do. But its getting much better.
I also take a Bcomplex or Stress tab daily - my doctor said it could help.
I find I dont have a lot of patience with people - I get a bit short tempered over little things. I do a LOT of deep breathing and counting to 10 to keep calm and to stop myself from saying the wrong thing!
I hope your appointment went well and you found some answers!
Andrea0 -
The Appointmentsunnyaz said:So Glad I Could Be a Little Help
Samantha,
You sound like a really tough cookie. I mean that in a good way. You are a survivor. My memory is really bad too. I have sticky notes at work that I put everywhere. My coworkers even walk by my desk and slap them on my scrubs and sometimes right on my forehead. One on my forehead was written backwards and said, "don't forget to wash your hands" so I would see it in the mirror when I went to the bathroom. Kind of like when they spell AMBULANCE backwards so you can read it in your rear view mirror. I am fortunate to have a good group of people to work with for the most part. They laugh with me instead of at me.
Oh, I am also very clumsy now. Once in my life I had much grace and poise. One of the doctors had to remind me today not to trip over her chair mat AGAIN as I was leaving her office with a stack of reports. You know that plastic mat you put under your office chair so it will slide when you have carpet in your office. Well, hers is just slightly too big and folds over the edge of her desk as the base and I never fail to forget it's there.
I walk around with empty vials of vaccines in my pocket with sticky notes as to what patient I administered them to and which part of the body so that I won't forget to record them in the computer. By the end of the day I am weighed down with glass vials. No wonder I have back problems. Oh and then there's my friend Lisa at the office who is sick and tired of me asking where supplies are AGAIN and AGAIN. So she took the label maker and marked the cabinets and drawers with everything that is in them. Makes it really easy to train the newbies though. I just tell them to go look at the labels and find what they need. I make them think it's for them so they don't think I am a complete idiot. Lisa is kind enough to go along with it.
I pay $26.50 or thereabouts for my Synthroid for a thirty day supply. I don't think insurance really helps me. My co-pay is more than the cost of the medication. I still don't get that. So, from what Craig says, you can get it for the same price as I.
I doubt that this is early Alzheimer's. I think it's a symptom of not having a thyroid. This seems to be a common denominator for most of us. We just have to learn to be patient with ourselves, laugh at our misgivings and hope the ones we love and work with will laugh with us and support us. I think I get better at making adjustments to my memory loss. Yeah, I look super silly walking around wearing bright colored sticky notes but it makes my patients laugh and they always enjoy seeing me when they come in for their appointments. I keep them laughing. Most of them are older because I live and work in a retirement community. They complain and make jokes about how they are shrinking with age every time I measure their height. They all notice the trend in how we move down in height and out in width. I just say "gravity happens." Some of them I know well enough to tell them that I used to wear a bra size of 34C and now I wear a 34 Long. Have to be careful saying that to the ones with incontinence problems though. Hopefully they have on their depends.
Hope your appointment went well. I look forward to hearing about it.
Live, Love and Laugh my friend,
Julie-SunnyAZ
Where do I begin....I will not be starting anything for 4 weeks when I go back and he takes me off my thyroid meds, a week later radiation treatment will begin for approximately a month. I will definitely feel like poo during this and will not be able to work during treatment (wth am I gona about paying bills?!!) He said because of the high dosage of radiation and the fact that I work with the public, I just can't work, period! Great, why not add more stress!! He explained that I could have a sore throat, hoarseness, difficulty swallowing, could like I have the mumps, taste changes to no taste at all, and dry mouth. YAAHH!! I talked to him about the dizzy spells and he told me to go back to my regular doctor because it did sound like vertigo or Meniere's Disease. WOO HOO, I'm on a roll now...So this will be the next appointment I make...hopefully my reg doc will be willing to listen to the symptoms like the oncologist....time will tell. I forgot to mention the memory loss...seriously, I really did forget, go figure, but will difinitely bring it up next time, and I will write it down and stick it in my purse. There were still a few questions that I did not get a chance to ask him, but I still have them all written down on a piece of paper and will take them with me in 4 weeks.
I love all of your all's posts, some make me laugh and I need to laugh alot these days. All of you all have so wonderful in 'holding' my hand through this and I truly wish I could personally meet you all. Really wonderful people on here and I am ever so grateful!! I have days where I just want to break down and cry, but tears will help nothing!! I do believe my husband is in some kind of denial with all of this b/c he never really wants to talk about it and didn't even ask me what went on at the doctor's office yesterday....I will let him deal with it in his own way I guess, which makes me feel alone in all of it, but OH well, I can deal!!
Hope all of you have a wonderful day and many blessings
Samantha0 -
The Appointmentsunnyaz said:So Glad I Could Be a Little Help
Samantha,
You sound like a really tough cookie. I mean that in a good way. You are a survivor. My memory is really bad too. I have sticky notes at work that I put everywhere. My coworkers even walk by my desk and slap them on my scrubs and sometimes right on my forehead. One on my forehead was written backwards and said, "don't forget to wash your hands" so I would see it in the mirror when I went to the bathroom. Kind of like when they spell AMBULANCE backwards so you can read it in your rear view mirror. I am fortunate to have a good group of people to work with for the most part. They laugh with me instead of at me.
Oh, I am also very clumsy now. Once in my life I had much grace and poise. One of the doctors had to remind me today not to trip over her chair mat AGAIN as I was leaving her office with a stack of reports. You know that plastic mat you put under your office chair so it will slide when you have carpet in your office. Well, hers is just slightly too big and folds over the edge of her desk as the base and I never fail to forget it's there.
I walk around with empty vials of vaccines in my pocket with sticky notes as to what patient I administered them to and which part of the body so that I won't forget to record them in the computer. By the end of the day I am weighed down with glass vials. No wonder I have back problems. Oh and then there's my friend Lisa at the office who is sick and tired of me asking where supplies are AGAIN and AGAIN. So she took the label maker and marked the cabinets and drawers with everything that is in them. Makes it really easy to train the newbies though. I just tell them to go look at the labels and find what they need. I make them think it's for them so they don't think I am a complete idiot. Lisa is kind enough to go along with it.
I pay $26.50 or thereabouts for my Synthroid for a thirty day supply. I don't think insurance really helps me. My co-pay is more than the cost of the medication. I still don't get that. So, from what Craig says, you can get it for the same price as I.
I doubt that this is early Alzheimer's. I think it's a symptom of not having a thyroid. This seems to be a common denominator for most of us. We just have to learn to be patient with ourselves, laugh at our misgivings and hope the ones we love and work with will laugh with us and support us. I think I get better at making adjustments to my memory loss. Yeah, I look super silly walking around wearing bright colored sticky notes but it makes my patients laugh and they always enjoy seeing me when they come in for their appointments. I keep them laughing. Most of them are older because I live and work in a retirement community. They complain and make jokes about how they are shrinking with age every time I measure their height. They all notice the trend in how we move down in height and out in width. I just say "gravity happens." Some of them I know well enough to tell them that I used to wear a bra size of 34C and now I wear a 34 Long. Have to be careful saying that to the ones with incontinence problems though. Hopefully they have on their depends.
Hope your appointment went well. I look forward to hearing about it.
Live, Love and Laugh my friend,
Julie-SunnyAZ
Where do I begin....I will not be starting anything for 4 weeks when I go back and he takes me off my thyroid meds, a week later radiation treatment will begin for approximately a month. I will definitely feel like poo during this and will not be able to work during treatment (wth am I gona about paying bills?!!) He said because of the high dosage of radiation and the fact that I work with the public, I just can't work, period! Great, why not add more stress!! He explained that I could have a sore throat, hoarseness, difficulty swallowing, could like I have the mumps, taste changes to no taste at all, and dry mouth. YAAHH!! I talked to him about the dizzy spells and he told me to go back to my regular doctor because it did sound like vertigo or Meniere's Disease. WOO HOO, I'm on a roll now...So this will be the next appointment I make...hopefully my reg doc will be willing to listen to the symptoms like the oncologist....time will tell. I forgot to mention the memory loss...seriously, I really did forget, go figure, but will difinitely bring it up next time, and I will write it down and stick it in my purse. There were still a few questions that I did not get a chance to ask him, but I still have them all written down on a piece of paper and will take them with me in 4 weeks.
I love all of your all's posts, some make me laugh and I need to laugh alot these days. All of you all have so wonderful in 'holding' my hand through this and I truly wish I could personally meet you all. Really wonderful people on here and I am ever so grateful!! I have days where I just want to break down and cry, but tears will help nothing!! I do believe my husband is in some kind of denial with all of this b/c he never really wants to talk about it and didn't even ask me what went on at the doctor's office yesterday....I will let him deal with it in his own way I guess, which makes me feel alone in all of it, but OH well, I can deal!!
Hope all of you have a wonderful day and many blessings
Samantha0 -
untab-ing the conversation
I am replying here so we un-tab this conversation my browser window only goes so far :P
ok i see you got some of your answers answered in the dr appointment.
Samantha I am so glad we can be helpful and supporting and sometimes make you smile or laugh.
You are defiantly a survivor.
My memory is a pad of yellow stick-ie notes and alarms and computer notes.
I am very clumsy now... don’t know how much is thyroid related and how much is vertigo related I used to have the grace of a bull in a china shop... and now... well some days it looks like a drunkards walk :P (that when the vertigo hits) and yes i have a doctor’s note with me saying i suffer from sever vertigo so if i get pulled over i can skip all the field sobriety tests and just go straight to breathalyzer and or blood draw (if they suspect drug use).
that is one good thing I am looking for my meds are completely covered for life... as long as i go to the required pharmacy. Julie you might want to try to get on 90 day supply’s maybe the co-pay will be lower than that or at least it will save you 8 trips to the pharmacy a year.
yes I think I said it before i doubt if its early Alzheimer's but it would be something to look at cause of your family history but Julie is probably right its just being thyroid brained.
Oh Julie that plastic mat if it’s too big and folds on the edge is a Safety hazard and should be trimmed to fit for everyone’s safety. My work is a VPP Star site and we have inspections to check for things like that as well as other safety issues.
ok Samantha it sounds like you have a rough plan time to get out timers and alarm clocks and sticky notes and such.
1) Has he talked about Low Iodine Diet?
2) um are you still on synthroid or generic... they normally have you on Cytomel or generic and I always thought it was 2 weeks off thyroid meds(Cytomel and 1 month+ of synthroid) prior to RAI... if you’re on synthroid or its generic then um...you need to talk to the doc NOW and not in 4 weeks.
3) Let’s see RAI changes...
.a) loss of taste check about 1 month very little taste then a constant metallic salty taste permanent.
.b) hoarseness check about 2-3 weeks
.c) mumps like feeling ... nope I did get slightly swollen salivary glands when you massage them you feel a salty taste in the mouth but not mumps feeling.
.d) dry mouth... definite check. I do not have to worry about drinking enough water I drink over 10 16 oz glasses of water a day + a diet soda or 2 + milk + oj +.....
4) Ok he mentioned high dose of radiation... did he say how high?
..... Mine was 175mCi of I-131
5) From about 3 days with no thyroid replacement your going to feel run down and really start forgetting things.... then your memory will really start to go.
6) one of the Pharmacy techs made extra labels for my pills (she is my friend) the label read in the warnings
"May cause drowsiness and installation of Windows Vista use care when operating car or heavy machinery. take exactly as directed. Do not skip doses or critical system updates or discontinue unless directed by your doctor."
7) I wish I could meet all of you as well, but right now I don’t travel well.
8) Cry when you need to it does help yes you want to be strong but sometimes you need to be week.
9) Quick dizziness education Vertigo is a symptom of many things including Ménière's Diseased and Syndrome
Ménière's syndrome is caused by among other things both hypo- and hyperthyroidism
Ménière's disease is idiopathic, but it is believed to be linked to endolymphatic hydrops, an excess of fluid in the inner ear (in other words we don’t know what causes it)
Vertigo is one of the effects of Ménière's, as well as other balance disorder’s.
10) Denial - yes I understand family and friends tend to get tired or don’t want to believe it’s as bad as you say it is.
11) Find a cancer support group
12) best way to deal with a lot of questions to your doctor is print out 2 copies of your questions and give one to the doctor... that way you don’t forget to ask something (as often) and he/she has something to make notes on as well.
@andrea (amorriso) yes i agree B-complex seems to help memory as do memory games/brain exercise.
I used to joke about losing my mind... it’s not as funny now.
I know I posted these before but some breast cancer comic's
http://xkcd.com/931/
http://xkcd.com/933/
And a drug trial comic
http://xkcd.com/938/
I will admit most of the jokes at xkcd are defiantly geek jokes or over my head jokes but those ones touched me.
Wonders why there is a “remember to spell-check” sticky on the corner of my screen.
Craig0 -
Interesting....nasher said:untab-ing the conversation
I am replying here so we un-tab this conversation my browser window only goes so far :P
ok i see you got some of your answers answered in the dr appointment.
Samantha I am so glad we can be helpful and supporting and sometimes make you smile or laugh.
You are defiantly a survivor.
My memory is a pad of yellow stick-ie notes and alarms and computer notes.
I am very clumsy now... don’t know how much is thyroid related and how much is vertigo related I used to have the grace of a bull in a china shop... and now... well some days it looks like a drunkards walk :P (that when the vertigo hits) and yes i have a doctor’s note with me saying i suffer from sever vertigo so if i get pulled over i can skip all the field sobriety tests and just go straight to breathalyzer and or blood draw (if they suspect drug use).
that is one good thing I am looking for my meds are completely covered for life... as long as i go to the required pharmacy. Julie you might want to try to get on 90 day supply’s maybe the co-pay will be lower than that or at least it will save you 8 trips to the pharmacy a year.
yes I think I said it before i doubt if its early Alzheimer's but it would be something to look at cause of your family history but Julie is probably right its just being thyroid brained.
Oh Julie that plastic mat if it’s too big and folds on the edge is a Safety hazard and should be trimmed to fit for everyone’s safety. My work is a VPP Star site and we have inspections to check for things like that as well as other safety issues.
ok Samantha it sounds like you have a rough plan time to get out timers and alarm clocks and sticky notes and such.
1) Has he talked about Low Iodine Diet?
2) um are you still on synthroid or generic... they normally have you on Cytomel or generic and I always thought it was 2 weeks off thyroid meds(Cytomel and 1 month+ of synthroid) prior to RAI... if you’re on synthroid or its generic then um...you need to talk to the doc NOW and not in 4 weeks.
3) Let’s see RAI changes...
.a) loss of taste check about 1 month very little taste then a constant metallic salty taste permanent.
.b) hoarseness check about 2-3 weeks
.c) mumps like feeling ... nope I did get slightly swollen salivary glands when you massage them you feel a salty taste in the mouth but not mumps feeling.
.d) dry mouth... definite check. I do not have to worry about drinking enough water I drink over 10 16 oz glasses of water a day + a diet soda or 2 + milk + oj +.....
4) Ok he mentioned high dose of radiation... did he say how high?
..... Mine was 175mCi of I-131
5) From about 3 days with no thyroid replacement your going to feel run down and really start forgetting things.... then your memory will really start to go.
6) one of the Pharmacy techs made extra labels for my pills (she is my friend) the label read in the warnings
"May cause drowsiness and installation of Windows Vista use care when operating car or heavy machinery. take exactly as directed. Do not skip doses or critical system updates or discontinue unless directed by your doctor."
7) I wish I could meet all of you as well, but right now I don’t travel well.
8) Cry when you need to it does help yes you want to be strong but sometimes you need to be week.
9) Quick dizziness education Vertigo is a symptom of many things including Ménière's Diseased and Syndrome
Ménière's syndrome is caused by among other things both hypo- and hyperthyroidism
Ménière's disease is idiopathic, but it is believed to be linked to endolymphatic hydrops, an excess of fluid in the inner ear (in other words we don’t know what causes it)
Vertigo is one of the effects of Ménière's, as well as other balance disorder’s.
10) Denial - yes I understand family and friends tend to get tired or don’t want to believe it’s as bad as you say it is.
11) Find a cancer support group
12) best way to deal with a lot of questions to your doctor is print out 2 copies of your questions and give one to the doctor... that way you don’t forget to ask something (as often) and he/she has something to make notes on as well.
@andrea (amorriso) yes i agree B-complex seems to help memory as do memory games/brain exercise.
I used to joke about losing my mind... it’s not as funny now.
I know I posted these before but some breast cancer comic's
http://xkcd.com/931/
http://xkcd.com/933/
And a drug trial comic
http://xkcd.com/938/
I will admit most of the jokes at xkcd are defiantly geek jokes or over my head jokes but those ones touched me.
Wonders why there is a “remember to spell-check” sticky on the corner of my screen.
Craig
Craig you mentioned the metallic taste in mouth during the treatment, well I have already been having this metallic taste and I haven't even started treatment yet!! It is very irritating and along with it comes a lot of salivating and I mean A LOT!! Why is this happening now instead of later? Not that you know the answer, but guesstimates are welcome. I am more clumsy now than I have ever been, even though I have never been graceful at anything I have done, and now that I have my hand on 40's doorknob, it seems that the memory loss and clumsiness are becoming increasingly worse.
I have no idea right now what doseage of radiation I will be taking, didn't ask either, stupid of me. He did not go into detail (nor did I ask) how often treatment will be done in the period of a month. He never mentioned the LID and I didn't have it written down to ask him about it. Yesterday was mainly about medical history and family medical history and b/c I have no insurance, I kind of felt like I was being pushed out the door in a hurry. With that being said, I still have all my questions that I intend to ask that I didn't ask yesterday and I plan on adding more to the list. For now, I am still taking the two doses of Levothyroxin as directed. He never said to change anything while waiting for the next appointment to arrive (Sept 20).
I am having a really good day today, I am sure tomorrow will be different. I will be going to my regular physician Monday to discuss these dizzy/nausea spells I have been having the last 2-3 months and I pray that she will do tests or something and tell me that I am not losing my mind completely and that yes, there is something else going on to cause these spells. It is getting to the point where I am falling because of these spells and will prolly end up hurting myself before it's over with.
I make light of some of the situation sometimes because it is the only coping mechanism I know of right now. I know that there are people out there who have it a whole lot more worse than I do and I should be thankful for the way things are going now. However, sometimes I can not help but believe that this is the punishment I deserve for some of the wrongs I have done in my life....No, I have never killed anymore, robbed anyone, ect. I just believe I am being punished for some things that I have done in the past....Karma is funny like that. She can be your best friend or your worse enemy....right now, I shall call her a frenemy!!
I do the best I can, day by day and let the rest fall into God's hands. What will be, will be and I know that some things I simply can not change. I am just hangin' in there the best I can...and yeah...sometimes I do cry..when no one is watching, but I also remember I am not alone and that there are people out there going through the same exact thing as me.
Samantha0 -
QuickieKYGirl71 said:Interesting....
Craig you mentioned the metallic taste in mouth during the treatment, well I have already been having this metallic taste and I haven't even started treatment yet!! It is very irritating and along with it comes a lot of salivating and I mean A LOT!! Why is this happening now instead of later? Not that you know the answer, but guesstimates are welcome. I am more clumsy now than I have ever been, even though I have never been graceful at anything I have done, and now that I have my hand on 40's doorknob, it seems that the memory loss and clumsiness are becoming increasingly worse.
I have no idea right now what doseage of radiation I will be taking, didn't ask either, stupid of me. He did not go into detail (nor did I ask) how often treatment will be done in the period of a month. He never mentioned the LID and I didn't have it written down to ask him about it. Yesterday was mainly about medical history and family medical history and b/c I have no insurance, I kind of felt like I was being pushed out the door in a hurry. With that being said, I still have all my questions that I intend to ask that I didn't ask yesterday and I plan on adding more to the list. For now, I am still taking the two doses of Levothyroxin as directed. He never said to change anything while waiting for the next appointment to arrive (Sept 20).
I am having a really good day today, I am sure tomorrow will be different. I will be going to my regular physician Monday to discuss these dizzy/nausea spells I have been having the last 2-3 months and I pray that she will do tests or something and tell me that I am not losing my mind completely and that yes, there is something else going on to cause these spells. It is getting to the point where I am falling because of these spells and will prolly end up hurting myself before it's over with.
I make light of some of the situation sometimes because it is the only coping mechanism I know of right now. I know that there are people out there who have it a whole lot more worse than I do and I should be thankful for the way things are going now. However, sometimes I can not help but believe that this is the punishment I deserve for some of the wrongs I have done in my life....No, I have never killed anymore, robbed anyone, ect. I just believe I am being punished for some things that I have done in the past....Karma is funny like that. She can be your best friend or your worse enemy....right now, I shall call her a frenemy!!
I do the best I can, day by day and let the rest fall into God's hands. What will be, will be and I know that some things I simply can not change. I am just hangin' in there the best I can...and yeah...sometimes I do cry..when no one is watching, but I also remember I am not alone and that there are people out there going through the same exact thing as me.
Samantha
Samantha,
I just wanted to let you know that my Nuclear Med doctor gave me Steroids to take during my treatment that really helped with loss of taste and salivary gland problems. I have no after effects. I truly believe it's because of those steroids. Only for a short time I had slight loss of taste but it all came back within about six weeks. Some strange taste when I ate certain foods, but now I am totally back to normal. Just thought I would throw that out there as a possibility and something to add to your list. I would almost insist on it.
Blessings,
Julie-SunnyAZ0 -
Does any one tolerate being off thyroid ?nasher said:I have been crazy for years
Dont worry about driving me crazy the only think i worry about is someone driveing me sane.
I dont know the exact number of days you could go without thyroid replacement
and it depends what you consider REALLY BAD and such
techincaly after your first missed dose your levels of T4 and T3 will slowly decrease in your body.
the first set of symptoms you will notice could include.
some of these not nessarly all
Poor muscle tone (muscle hypotonia)
Fatigue
Any form of menstrual irregularity and fertility problems
Hyperprolactinemia and galactorrhea
Elevated serum cholesterol
Cold intolerance, increased sensitivity to cold
Constipation
Rapid thoughts
Depression
Muscle cramps and joint pain
Thin, brittle fingernails
Coarse hair
Paleness
Decreased sweating
Dry, itchy skin
Weight gain and water retention
Bradycardia (low heart rate – fewer than sixty beats per minute)
as time goes on you will get more and more of these symptoms and they will get worse
Impaired memory
Impaired cognitive function (brain fog) and inattentiveness
Sluggish reflexes
Increased need for sleep
Irritability and mood instability
Decreased sense of taste and smell
the biological halflife of synthroid is 6-7 days
so in 6 days without synthroid you will be at 50%
at 12 days you will be at 25%
at 18 days 12.5%
at 24 days 6.25%
at 30 days 3.125%
at 36 days 1.5625%
at 42 days 0.78125%
for cytomel the halflife is about 2 days
so 2 days 50%
4 days 25%
6 days 12.5%
8 days 6.25%
10 days 3.125
12 days 1.5625%
14 days 0.78125%
after my thyroid surgery they took me of cytomel (i wasnt on synthroid just cytomel) for 14 days prior to RAI treatment. but back then i also had some thyroid tissue left in my body.
my 1 year scan they were able to do thyrogen shots so i dont know how long they take you off synthroid.
so the first few days shouldnt be too bad but as the time goes it gets worse and worse.
and that is why i recomend you prepair every meal you plan to have on your LID and refrigerate or freeze PRIOR to the start of it.
cause at the end you are probably going to be grumpy and iratated at everything very sleep and in a constant brain fog.
so to be honest probaly about a 3-4 weeks off synthroid before the world starts crashing down on you hard. but at 1 week you will probably think it is.
Wow, Nasher. That is one impressive list of disabling symptoms. Somewhere I read that not everyone gets all those symptoms. So has anyone ever tolerated being off thyroid for two weeks and still felt pretty good ?
Which way is more effective to destroy thyroid tissue--- the shot or stopping all thyroid medicine ?0 -
its not stupidKYGirl71 said:Interesting....
Craig you mentioned the metallic taste in mouth during the treatment, well I have already been having this metallic taste and I haven't even started treatment yet!! It is very irritating and along with it comes a lot of salivating and I mean A LOT!! Why is this happening now instead of later? Not that you know the answer, but guesstimates are welcome. I am more clumsy now than I have ever been, even though I have never been graceful at anything I have done, and now that I have my hand on 40's doorknob, it seems that the memory loss and clumsiness are becoming increasingly worse.
I have no idea right now what doseage of radiation I will be taking, didn't ask either, stupid of me. He did not go into detail (nor did I ask) how often treatment will be done in the period of a month. He never mentioned the LID and I didn't have it written down to ask him about it. Yesterday was mainly about medical history and family medical history and b/c I have no insurance, I kind of felt like I was being pushed out the door in a hurry. With that being said, I still have all my questions that I intend to ask that I didn't ask yesterday and I plan on adding more to the list. For now, I am still taking the two doses of Levothyroxin as directed. He never said to change anything while waiting for the next appointment to arrive (Sept 20).
I am having a really good day today, I am sure tomorrow will be different. I will be going to my regular physician Monday to discuss these dizzy/nausea spells I have been having the last 2-3 months and I pray that she will do tests or something and tell me that I am not losing my mind completely and that yes, there is something else going on to cause these spells. It is getting to the point where I am falling because of these spells and will prolly end up hurting myself before it's over with.
I make light of some of the situation sometimes because it is the only coping mechanism I know of right now. I know that there are people out there who have it a whole lot more worse than I do and I should be thankful for the way things are going now. However, sometimes I can not help but believe that this is the punishment I deserve for some of the wrongs I have done in my life....No, I have never killed anymore, robbed anyone, ect. I just believe I am being punished for some things that I have done in the past....Karma is funny like that. She can be your best friend or your worse enemy....right now, I shall call her a frenemy!!
I do the best I can, day by day and let the rest fall into God's hands. What will be, will be and I know that some things I simply can not change. I am just hangin' in there the best I can...and yeah...sometimes I do cry..when no one is watching, but I also remember I am not alone and that there are people out there going through the same exact thing as me.
Samantha
"didn't ask either, stupid of me" it is not stupid... its just takes about a year or so to get to the mindset of asking all these questions you never thought you needed to ask.
Unfortunatly you are probably right Samantha since you are the no insurance catagory they do tend to be overbooked so badly that they only have a few minuits to get to you and then off to next person.
"It is getting to the point where I am falling because of these spells and will prolly end up hurting myself before it's over with. "
make sure you recoard every fall or major trip and such as well as every dizzy spell and if you can figure what probably trigered it or made it worse.
One major reason I am adiment about makeing a list of questions (mine are never perfict) is that at least it gives the doctor the questions even if you get a little brain fog at appointment time or if it gets so hectic that you just forgot about asking that.
as far as your dizzyness is concerned...Mine has been bad enough that my PCP gave me a tempoary handicaped form filled out so I can get handicaped placerd for 6 months... He told me once I am retired from the Military the doctor will probably make it a perminate one.
---
Yes Julie I wish I knew about steroid shots or such or to ask about them prior to RAI... But again I think Samantha and MarinMark are going to both be in the same spot of not being able to afford them due to not haveing medical insurance.
---
@MarinMark
"Which way is more effective to destroy thyroid tissue--- the shot or stopping all thyroid medicine ?"
-- From Drugs.com--- http://www.drugs.com/pro/thyrogen.html
Even when Thyrogen-stimulated Tg testing is performed in combination with radioiodine imaging, there remains a meaningful risk of missing a diagnosis of thyroid cancer or of underestimating the extent of disease. Therefore, thyroid hormone withdrawal Tg testing with radioiodine imaging remains the standard diagnostic modality to assess the presence, location and extent of thyroid cancer.
Although Thyrogen appeared noninferior to thyroid hormone withholding in a study of postsurgical thyroid remnant ablation, long-term clinical outcome data are limited. Due to the relatively small clinical experience with Thyrogen in remnant ablation, it is not possible to conclude whether long-term thyroid cancer outcomes would be equivalent after use of Thyrogen or use of thyroid hormone withholding for TSH elevation prior to remnant ablation.
---
thyrogen has been avalible since 11/30/1998 before that point the only way to check was the Hypo-hell withrdraw way. to be honest there is not enough data for them to determine if thyrogen or Thyroid withdrawl is the best path.
---
"Somewhere I read that not everyone gets all those symptoms. So has anyone ever tolerated being off thyroid for two weeks and still felt pretty good ?"
no not everyone gets every symptom of that when i went through my RAI treatment i was off my meds for two+ weeks so with a little cut and paste i will list what symptoms I remember haveing
Poor muscle tone )really hard to say for those 2 weeks i didnt have energy to work out)
Fatigue (DEFINATLY i would call it more of exhaustion)
Elevated serum cholesterol (didnt get a test for this till right after RAI and it was higher)
Cold intolerance, increased sensitivity to cold (did this in may and definatly noticed cold)
Constipation (minot nothing major)
Depression (DEFINATLY)
Muscle cramps and joint pain (hard to say here I have had issues with cramps and joint pain for years)
Coarse hair (dont have much didnt notice)
Paleness (dont do much time in sun so dont know)
Decreased sweating (pretty sure not positive)
Dry, itchy skin (definatly
Weight gain and water retention (yes i had water retention and weight gain)
Impaired memory (definatly)
Impaired cognitive function (brain fog) and inattentiveness (definatly)
Sluggish reflexes (definatly)
Increased need for sleep (definatly)
Irritability and mood instability (&@*%(@% Definatly)
--- I deleted the ones that were no's---
hope some of this helps.0 -
Thyrogen DefinitelyMarinMark said:Does any one tolerate being off thyroid ?
Wow, Nasher. That is one impressive list of disabling symptoms. Somewhere I read that not everyone gets all those symptoms. So has anyone ever tolerated being off thyroid for two weeks and still felt pretty good ?
Which way is more effective to destroy thyroid tissue--- the shot or stopping all thyroid medicine ?
I definitely recommend the Thyrogen injections. Worked for me. No difference in destroying the tissue. No scientific proof.0 -
Just got information from......nasher said:its not stupid
"didn't ask either, stupid of me" it is not stupid... its just takes about a year or so to get to the mindset of asking all these questions you never thought you needed to ask.
Unfortunatly you are probably right Samantha since you are the no insurance catagory they do tend to be overbooked so badly that they only have a few minuits to get to you and then off to next person.
"It is getting to the point where I am falling because of these spells and will prolly end up hurting myself before it's over with. "
make sure you recoard every fall or major trip and such as well as every dizzy spell and if you can figure what probably trigered it or made it worse.
One major reason I am adiment about makeing a list of questions (mine are never perfict) is that at least it gives the doctor the questions even if you get a little brain fog at appointment time or if it gets so hectic that you just forgot about asking that.
as far as your dizzyness is concerned...Mine has been bad enough that my PCP gave me a tempoary handicaped form filled out so I can get handicaped placerd for 6 months... He told me once I am retired from the Military the doctor will probably make it a perminate one.
---
Yes Julie I wish I knew about steroid shots or such or to ask about them prior to RAI... But again I think Samantha and MarinMark are going to both be in the same spot of not being able to afford them due to not haveing medical insurance.
---
@MarinMark
"Which way is more effective to destroy thyroid tissue--- the shot or stopping all thyroid medicine ?"
-- From Drugs.com--- http://www.drugs.com/pro/thyrogen.html
Even when Thyrogen-stimulated Tg testing is performed in combination with radioiodine imaging, there remains a meaningful risk of missing a diagnosis of thyroid cancer or of underestimating the extent of disease. Therefore, thyroid hormone withdrawal Tg testing with radioiodine imaging remains the standard diagnostic modality to assess the presence, location and extent of thyroid cancer.
Although Thyrogen appeared noninferior to thyroid hormone withholding in a study of postsurgical thyroid remnant ablation, long-term clinical outcome data are limited. Due to the relatively small clinical experience with Thyrogen in remnant ablation, it is not possible to conclude whether long-term thyroid cancer outcomes would be equivalent after use of Thyrogen or use of thyroid hormone withholding for TSH elevation prior to remnant ablation.
---
thyrogen has been avalible since 11/30/1998 before that point the only way to check was the Hypo-hell withrdraw way. to be honest there is not enough data for them to determine if thyrogen or Thyroid withdrawl is the best path.
---
"Somewhere I read that not everyone gets all those symptoms. So has anyone ever tolerated being off thyroid for two weeks and still felt pretty good ?"
no not everyone gets every symptom of that when i went through my RAI treatment i was off my meds for two+ weeks so with a little cut and paste i will list what symptoms I remember haveing
Poor muscle tone )really hard to say for those 2 weeks i didnt have energy to work out)
Fatigue (DEFINATLY i would call it more of exhaustion)
Elevated serum cholesterol (didnt get a test for this till right after RAI and it was higher)
Cold intolerance, increased sensitivity to cold (did this in may and definatly noticed cold)
Constipation (minot nothing major)
Depression (DEFINATLY)
Muscle cramps and joint pain (hard to say here I have had issues with cramps and joint pain for years)
Coarse hair (dont have much didnt notice)
Paleness (dont do much time in sun so dont know)
Decreased sweating (pretty sure not positive)
Dry, itchy skin (definatly
Weight gain and water retention (yes i had water retention and weight gain)
Impaired memory (definatly)
Impaired cognitive function (brain fog) and inattentiveness (definatly)
Sluggish reflexes (definatly)
Increased need for sleep (definatly)
Irritability and mood instability (&@*%(@% Definatly)
--- I deleted the ones that were no's---
hope some of this helps.
I just received a booklet from the cancer society that into more depth about the type of cancer that I have and I found it very informative...still not all questions answered...but a little more positive about the whole situation. I only wish that I could get my family to understand WHY I am so tired all the time, especially when I work 9-10 hour days. I come home, take a shower, and either A)hit the bed, or B)grab my book and hit the bed. Either way, I am in the bed and usually sound asleep by 8pm. I have to get up at 2:00am 5-6 days a week to be at work no later than 3:15am and work (and I do mean work!) until no later than 12 or 1pm. I am completely and utterly exhausted when I get home and once I sit down, it really is all over for me. Of course, being BiPolar does not help matters either and this is really a prickly situation because no one understands what goes on in my mind on a daily basis or why I am in the mood I am in and why I stay that way....even with the help of daily mediciation. I feel like an 80-year-old woman with all the medications that I have to take everyday....just to function....and I must have the little pill boxes so that I can remember what to take and when, my pill boxes are even colored to keep up with the weeks. I am two different doses of Levothyroxin that are alternated every other day and without the colored pill boxes I forget if I took the pink pill or the gray pill. My memory seems to be getting worse because, literally, there are days where I could not tell you what I did yesterday, or even an hour ago...it sucks!
I try to look on the 'bright' side of things, but anymore, there are only dim sides to everything. I get so frustrated, angry, annoyed, aggravated, and mad with every one around me and I honestly don't mean to...it's just the way it is. Ones around me want to know why I am in the mood I am in or why I am crying and I honestly can not give them a logical reason.....other than this is just the way I am and this is just the way my brain functions. I really don't know a definition of normal, because I never have been and never will be!!
"If you can't take me at my worse, then you don't deserve me at my best" -Author Unknown
Always loved that saying. Yeah, my attention span and focus are totally out---Oooohhh sparkly...you get the picture.
I hope everyone has a good holiday weekend. Thanks for all the support.
Samantha
aka KYGirl71)0
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