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off thyroid meds pre-RAI three weeks now
It's been three weeks since I went off the Synthroid, all vitamins, calcium, and most every food known to man. :-) Can I just say I feel HORRIBLE?!
I go from freezing (80% of the time) to huge hot flashes (the other 20% of the time) - nothing in between. Terrible muscle cramps especially in my back and legs (had a parathyroid removed but my calcium supplement has been banished until RAI). Feel like I have NO energy all the time and could sleep all day but when I do fall asleep I have terrible action-packed, nightmares. Rapid pulse, difficulty breathing at times, lump in throat getting bigger and making swallowing more difficult. And *IRRATIBLE* - I go from "don't care" to crying hysterically to angrier than I've ever been at the drop of a hat. Speaking of hat, my hair is falling out too. Guess it compensates for the brain fog and confusion.
Oh, and I'm craving salt which I never have done before. I guess what's left of my thyroid tissue is trying to tell me something.
This isn't fun! I'm just hoping that my TSH level is above 30 tomorrow or I have to wait another week for the radiation. I'm going to lose it if I have to do it another week. I'm starting to suspect they put you through all of this so you will go through with the radiation just to get back on the medication. :-)
Not really asking a question, just sharing my experience pre-RAI. I would love to hear from others whether or not they experienced all of this too.
I go from freezing (80% of the time) to huge hot flashes (the other 20% of the time) - nothing in between. Terrible muscle cramps especially in my back and legs (had a parathyroid removed but my calcium supplement has been banished until RAI). Feel like I have NO energy all the time and could sleep all day but when I do fall asleep I have terrible action-packed, nightmares. Rapid pulse, difficulty breathing at times, lump in throat getting bigger and making swallowing more difficult. And *IRRATIBLE* - I go from "don't care" to crying hysterically to angrier than I've ever been at the drop of a hat. Speaking of hat, my hair is falling out too. Guess it compensates for the brain fog and confusion.
Oh, and I'm craving salt which I never have done before. I guess what's left of my thyroid tissue is trying to tell me something.
This isn't fun! I'm just hoping that my TSH level is above 30 tomorrow or I have to wait another week for the radiation. I'm going to lose it if I have to do it another week. I'm starting to suspect they put you through all of this so you will go through with the radiation just to get back on the medication. :-)
Not really asking a question, just sharing my experience pre-RAI. I would love to hear from others whether or not they experienced all of this too.
Hi,I just came across your posting by accident trying to find some information on how I am going to feel preparing for my RAI treatment in 2 weeks. People tell me it's going to be horrible, I am told that I am a moody person to begin with, I just feel like I am heading down a road where I'll just become intolerable and will totally alienate myself from the human species. I've just gone off my meds today and basically it's just anxiety of what it to come thats getting to me now, along with the lovely diet I have in store for myself. I had a total thyroidectomy with some lymph nodes removed 3 months ago for treatment of papillary carcinoma...that word is enough to give you the chills.Some days I keep going like nothing ever happened to me, but somedays the way I am and how people see me seems more like a personality issue than something that could be caused by a medical condition. Some people like my family load the attention and understanding on me, but other friends/relationships seem to think that I am just being difficult and a drama queen. I am not very forthcoming about discussing my situation just because I want my normal life back, sometimes I think that people see me as just making excuses for having such a critical disposition or crying at the drop of a hat. I don't know how or even if I should expend the effort in making these people understand. Anyhow, just rambling now, but I was glad to have seen your discussion, your experiences, as bad as some of them were/are help me understand what I am in store for.
Good luck! Be ready for bouts of depression and the overwhelming urge to strangle people. :-) There is a lot to what GravesLady said about "graves rage" - my emotions have never been so easily set off or so overwhelming as when I was off the meds and my TSH was climbing. I either wanted to cry or to choke someone. Keep tabs on your reaction to people, especially during this stress-free time of the year (ha, ha, ha).
I'll let you know about the scans on Wednesday. I'm just so glad I'm back on my meds, that was tough.
Hang in there and keep us posted!
I'll let you know about the scans on Wednesday. I'm just so glad I'm back on my meds, that was tough.
Hang in there and keep us posted!
Thank you for sharing your experiences.
I go off meds today and start low Iodine on Dec. 4th.
RAI Dec. 15th. and WBS Dec. 20th.
Good ;uck with your scans.
Kim
I go off meds today and start low Iodine on Dec. 4th.
RAI Dec. 15th. and WBS Dec. 20th.
Good ;uck with your scans.
Kim
Today starts my third week off meds and my first day off work. I don't feel too bad, but I have a dull headache and hoarse voice.
I go for my scan on Wednesday too, but this is the pre ablation scan. I don't know if I will have a scan after the ablation dose, nothing has been said about that.
Good luck on Wednesday, I hope all the little thyroid tissues are gone.
I go for my scan on Wednesday too, but this is the pre ablation scan. I don't know if I will have a scan after the ablation dose, nothing has been said about that.
Good luck on Wednesday, I hope all the little thyroid tissues are gone.
That is so wonderful that your husband has helped find an RAI friendly Thanksgiving. How wonderful!!
You "drunk dialed" your mother? How cute! :-)
Okay, only have ONE beer and ask your husband to hide the phone.
I understand about the dairy. The first thing I did (when I was allowed to) after the RAI was take two synthroid. Exactly one hour later I had a huge chunk of Brie with herbs. Ohhhhh, I missed cheese so much! (sorry, this isn't helping - sorry)
Hang in there!!! My full-body scan is Wednesday. I'll let you know where all the little monsters were hiding.
You "drunk dialed" your mother? How cute! :-)
Okay, only have ONE beer and ask your husband to hide the phone.
I understand about the dairy. The first thing I did (when I was allowed to) after the RAI was take two synthroid. Exactly one hour later I had a huge chunk of Brie with herbs. Ohhhhh, I missed cheese so much! (sorry, this isn't helping - sorry)
Hang in there!!! My full-body scan is Wednesday. I'll let you know where all the little monsters were hiding.
Hi Ceegee,
Yes, I'm back on synthroid and off the diet. I'm doubling my synthroid for 4 days (.400mcg instead of .200mcg). Being able to take calcium again has been nice although I still have the deep muscle cramps.
Bummer thing is, someone was coughing and sick in the waiting room at nuclear medicine. With my immune system being so shot, I got a HUGE case of sinus infection with bronchitis. I get these often (have asthma and COPD) and I know I need to get right on antibiotics before pneumonia or bronchitis sets in. Not so easy to do when you are isolated! All the doctors wanted me to come in and I told them about the radiation until I was blue in the face (literally = from coughing). It took me two days to finally get someone to write me a prescription over the phone today. :-(
The diet won't be *too* bad for Thanksgiving. Do you have a butcher who could get you some fresh turkey (no basting, etc.)? You could always do that, bake an apple with some cinnamon and sugar, some raw nuts, and lots of nice steamed or fresh veggies. I liked steamed fresh green beans with raw almond slivers and a light spray of margarine ("I can't believe it's not butter" spray). I don't know if you drink or not but wine is okay on the diet. Enough of that and the rest won't matter. :-) (just kidding people - don't flame me)
Enjoy your family and friends and don't focus on the diet.
Best to you!!!
Yes, I'm back on synthroid and off the diet. I'm doubling my synthroid for 4 days (.400mcg instead of .200mcg). Being able to take calcium again has been nice although I still have the deep muscle cramps.
Bummer thing is, someone was coughing and sick in the waiting room at nuclear medicine. With my immune system being so shot, I got a HUGE case of sinus infection with bronchitis. I get these often (have asthma and COPD) and I know I need to get right on antibiotics before pneumonia or bronchitis sets in. Not so easy to do when you are isolated! All the doctors wanted me to come in and I told them about the radiation until I was blue in the face (literally = from coughing). It took me two days to finally get someone to write me a prescription over the phone today. :-(
The diet won't be *too* bad for Thanksgiving. Do you have a butcher who could get you some fresh turkey (no basting, etc.)? You could always do that, bake an apple with some cinnamon and sugar, some raw nuts, and lots of nice steamed or fresh veggies. I liked steamed fresh green beans with raw almond slivers and a light spray of margarine ("I can't believe it's not butter" spray). I don't know if you drink or not but wine is okay on the diet. Enough of that and the rest won't matter. :-) (just kidding people - don't flame me)
Enjoy your family and friends and don't focus on the diet.
Best to you!!!
My dear hubby already has our dinner planned out with plenty of stuff I can eat. He usually cooks organic foods and always organic poultry. There is a sweet potato casserole in the LID cookbook we are going to try.
The thing I miss most is dairy. I always would have a glass of milk with supper and cereal and would eat cheese for snacks. That's all been changed to oatmeal and fresh fruits and veggies.
I haven't drank any wine since Christmas Eve about 4 or 5 years ago. I had a little too much and didn't realize until I stood up to go home, fortunately I was just next door. I felt so bad Christmas day I haven't had wine since. Beer, that is another story. I had a couple Friday night, and I think the effect is stronger when hypo. I was slurring my words and such, and of all people called my momma for a talk. :-).
So I may have a beer, but not two.
The thing I miss most is dairy. I always would have a glass of milk with supper and cereal and would eat cheese for snacks. That's all been changed to oatmeal and fresh fruits and veggies.
I haven't drank any wine since Christmas Eve about 4 or 5 years ago. I had a little too much and didn't realize until I stood up to go home, fortunately I was just next door. I felt so bad Christmas day I haven't had wine since. Beer, that is another story. I had a couple Friday night, and I think the effect is stronger when hypo. I was slurring my words and such, and of all people called my momma for a talk. :-).
So I may have a beer, but not two.
Yep cancer, papillary w/follicular varient. I was never really told a stage but in reading about it I think it would be stage 1. Even though they found the cancer in both lobes, multi-focal they called it none of them were bigger than 1mm so that makes for low staging. My age (49)and the term 'extracapsular' invasion may have brought me up to a stage 2.
I didn't ask if I could have my treatment dose sooner because I didn't want to be isolated during Thanksgiving. I may change my mind though on the day when everyone is eating whatever they want and I'm not.
Are you back on your meds now and off the LID?
I didn't ask if I could have my treatment dose sooner because I didn't want to be isolated during Thanksgiving. I may change my mind though on the day when everyone is eating whatever they want and I'm not.
Are you back on your meds now and off the LID?
I go 11/20 for scan dose, 11/22 for scan and 11/27 for ablation dose. It should stay that way unless something weird happens.
I still feel okay, it's 11 o'clock and I am still awake, although I am about to turn in, just finished grading some tests.
Tomorrow is my last day at work for a couple of weeks.
I'll keep you posted and love to hear your experiences.
I still feel okay, it's 11 o'clock and I am still awake, although I am about to turn in, just finished grading some tests.
Tomorrow is my last day at work for a couple of weeks.
I'll keep you posted and love to hear your experiences.
Hmmm - what you said about your scan dose, scan, then ablation dose went right over my head last time. Yesterday I had a different technician than I did for my scan dose the day before. The new technician had mentioned doing it the way you are having it done, scan dose, scan, then ablation a week later.
I told him that was not what I had been told or what I had planned on. He spoke with the chief of Nuclear Medicine and because of my cancer (Stage I, 3 years ago) decided to go with the original plan of scan then ablation the next day.
I'm curious as to why the difference? Ceegee, remind me, did you have cancer and, if so, what type and stage?
Maybe GravesLady knows more about the difference in RAI treatments.
I told him that was not what I had been told or what I had planned on. He spoke with the chief of Nuclear Medicine and because of my cancer (Stage I, 3 years ago) decided to go with the original plan of scan then ablation the next day.
I'm curious as to why the difference? Ceegee, remind me, did you have cancer and, if so, what type and stage?
Maybe GravesLady knows more about the difference in RAI treatments.
Very, very tired. I really can't tell of anything that is really different with the RAI (other than my sense of taste is a bit messed up but they said that's normal because the radiation settles in the salivary glands). I think the reason I'm so exhausted is the high TSH levels. Oh, and thanks to my MIA immune system I'm coming down with a nasty head cold. Guess I had better not go to the insta care while I'm a walking nuclear reactor. :-) Nice to know I'm coughing radiation.
Oh, and I'm becoming a bit OCD (obsessive compulsive disorder) having to flush the toilet three times, wash hands constantly, scrub down the shower, wash all clothing separately, etc. If I wasn't so tired my house would look killer-clean!
Any update on your RAI dates?
Oh, and I'm becoming a bit OCD (obsessive compulsive disorder) having to flush the toilet three times, wash hands constantly, scrub down the shower, wash all clothing separately, etc. If I wasn't so tired my house would look killer-clean!
Any update on your RAI dates?
Thanks everyone! You have been so supportive. Oh I feel horrible but it's just the TSH levels. The mega-dose of radiation today was no big deal. It just took a while because there were so many patients being treated. For some reason we have a HUGE problem with thyroid cancers here in Utah - (something about nuclear bombs in Nevada and wind currents . . . hmmmm).
Anyway I didn't feel any different and wouldn't have known I was radioactive except I set off every radiation alarm in the department! Scared the heck out of a couple of little old ladies in the waiting room. The technician stuck his head out and yelled "Yes, Lynette, that's because of you keep running!"
Good thing they all have pretty good senses of humor.
Going to sleep for a bit - I'm so exhausted. Thanks to EVERYONE for all your support.
Anyway I didn't feel any different and wouldn't have known I was radioactive except I set off every radiation alarm in the department! Scared the heck out of a couple of little old ladies in the waiting room. The technician stuck his head out and yelled "Yes, Lynette, that's because of you keep running!"
Good thing they all have pretty good senses of humor.
Going to sleep for a bit - I'm so exhausted. Thanks to EVERYONE for all your support.
Graveslady is right,
You have a great sense of humor & are truly positive! You are a winner!! You really inspire me. Like Cegee says "you will light up the night with your radioactive glow..." My prayers are also with you. Good Luck!
You have a great sense of humor & are truly positive! You are a winner!! You really inspire me. Like Cegee says "you will light up the night with your radioactive glow..." My prayers are also with you. Good Luck!
All you ladies, keep us posted with up dates on your test, treatments and progress.
This can't be easy for you all, but you ladies will make it through with flying colors. The best to you all!
Thoughts and prayers. GL
This can't be easy for you all, but you ladies will make it through with flying colors. The best to you all!
Thoughts and prayers. GL
Good Luck Utahmomma, but like everyone is saying I predict you will fly through with honors and lite up the night with your radioactive glow.
At our staff meeting yesteday some fellow teachers were singing a song titled radioactive to me, I know I should have heard it before but haven't.
Ya gotta have a sense of humor through all of this or you'll just be drug down while your dragging.
Ninth day w/o meds and on LID and they were passing out M&M's at school today. UGGGGHHHH
At our staff meeting yesteday some fellow teachers were singing a song titled radioactive to me, I know I should have heard it before but haven't.
Ya gotta have a sense of humor through all of this or you'll just be drug down while your dragging.
Ninth day w/o meds and on LID and they were passing out M&M's at school today. UGGGGHHHH
Thanks everyone! The scan dose today was a breeze but the technician told me it's only 1/1000th of the dose I'm getting tomorrow. Everyone at Nuclear Med was great but it's still creepy when they hand you a test tube with your name on it and bolt for the door!
Ceegee, I hear you about people passing out M&Ms around you. Right now I serve on the school board in my *large* school district. Do you know how many dinners there are this time of year I've had to just stare at and act like I'm enjoying my naked lettuce?? Arrrrrggghhhh!
My endo doesn't want me off the diet and back on synthroid for 24 hours following tomorrow's 3-Mile Island dose. Bummer - I'd be willing to risk stopping at a nice sushi bar on the way from the hospital but I guess that's out (some sushi chef's thyroid should be grateful)
The sense of humor is my defense mechanism - I feel so awful (and my emotions are NUTS) I just want to lay down and cry but that won't do any good. Instead, I'll just annoy everyone around me with sarcasm. :-)
I'll let y'all know how much fun tomorrow's dose is.
Right now I need a warm bath (can't warm up on my own) and SLEEP!
Everyone has been so great - THANK YOU!
Ceegee, I hear you about people passing out M&Ms around you. Right now I serve on the school board in my *large* school district. Do you know how many dinners there are this time of year I've had to just stare at and act like I'm enjoying my naked lettuce?? Arrrrrggghhhh!
My endo doesn't want me off the diet and back on synthroid for 24 hours following tomorrow's 3-Mile Island dose. Bummer - I'd be willing to risk stopping at a nice sushi bar on the way from the hospital but I guess that's out (some sushi chef's thyroid should be grateful)
The sense of humor is my defense mechanism - I feel so awful (and my emotions are NUTS) I just want to lay down and cry but that won't do any good. Instead, I'll just annoy everyone around me with sarcasm. :-)
I'll let y'all know how much fun tomorrow's dose is.
Right now I need a warm bath (can't warm up on my own) and SLEEP!
Everyone has been so great - THANK YOU!
Thank you for sharing your experience.
I go off my Levoxyl on Monday go for the RAI on December 15th
WBS on December 20th.
Do not look forward to it.
I was diagnosed with Follicular cancer.
Check out the "Follicular Cancer Lady" web page
it is a good story with a lot of humour.
Keep us posted.
Best wishes.
I go off my Levoxyl on Monday go for the RAI on December 15th
WBS on December 20th.
Do not look forward to it.
I was diagnosed with Follicular cancer.
Check out the "Follicular Cancer Lady" web page
it is a good story with a lot of humour.
Keep us posted.
Best wishes.
Good luck with the scan and RAI - not that you will need it because you are going to whiz right through both.(Y)
Thanks!
I hope that they double my Synthroid dose. I love that stuff more now than ever!
I hope that they double my Synthroid dose. I love that stuff more now than ever!
LOL! I bet you do.
I like your sense of humor.
And to have a sense of humor you have to be positive.
You are a winner for you have both.
Good Luck! and Sweet Dreams!
I like your sense of humor.
And to have a sense of humor you have to be positive.
You are a winner for you have both.
Good Luck! and Sweet Dreams!
Well I got my TSH results today and apparently it's a good thing I'm getting RAI 'cause there is *something* going on that needs to be resolved. Off meds and on low-iodine diet for three weeks and my TSH went from 2.1 to 75.9!
No wonder I feel like I'm falling apart! Today is bitter cold and wet, not helping at all. I can't get warm and I *HURT* everywhere.
So . . . I'm on schedule for the scan dose tomorrow and the "huge" dose on Wednesday. I'll keep everyone posted. I'm so glad there is light at the end of this tunnel - even if that light is a nuclear reaction. :-)
Thanks for the support GravesLady and Ceegee!
No wonder I feel like I'm falling apart! Today is bitter cold and wet, not helping at all. I can't get warm and I *HURT* everywhere.
So . . . I'm on schedule for the scan dose tomorrow and the "huge" dose on Wednesday. I'll keep everyone posted. I'm so glad there is light at the end of this tunnel - even if that light is a nuclear reaction. :-)
Thanks for the support GravesLady and Ceegee!
Oh hey there,
I am so sorry that you are having such a terrible time. I am starting my second week today w/o meds and am starting to slow down. I am still working and did walk after work today but a lot slower. My legs and hips started hurting this weekend and I wonder if it's the start of what you are feeling.
I am not getting my ablation dose until 11/27 so I have this week and Thanksgiving week to go through. No traditional meal for me, but I don't think I will care at that point.
I will keep hoping and praying for your TSH to rise so you can be done and on your way to feeling better.
Take care and keep us posted.
I am so sorry that you are having such a terrible time. I am starting my second week today w/o meds and am starting to slow down. I am still working and did walk after work today but a lot slower. My legs and hips started hurting this weekend and I wonder if it's the start of what you are feeling.
I am not getting my ablation dose until 11/27 so I have this week and Thanksgiving week to go through. No traditional meal for me, but I don't think I will care at that point.
I will keep hoping and praying for your TSH to rise so you can be done and on your way to feeling better.
Take care and keep us posted.
You poor dear. I feel for you. You just hang in there. Just keep thinking how good you are going to feel once this is over. I know this is a little different than your situation, but after my RAI took me three months to go hypo with TSH of 29. Cried all the time, on a dime, for no reason and the tiniest of reasons. I just can't imagine all the symptoms that you are going, But you are not going crazy, just a little thyroid thingie ;) It does get better once on meds and the levels that is right for you. Just keep hanging on, it will all be over soon. Keep us updated. You have my thoughts and prayers. GL
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