The THYROID Thread

[luvmarypoppins]

singing mom - when I read that you sleep with 3 or 4 pillows.

I sleep with 3 and if they get off center or off the position I put them in, I feel like I am choking etc.

I am thinking that is because of the neck dissection? Micayla care to chime in on this since you have a dissection too?

Anyone else use 3 or 4 pillows?

 

[bellanotte10]

Thanks for the info. Since I now know there will be goo involved I will have to bring a hair tie. Blech!!! lol It sounds simple and painless and of course I am going to be wanting to swallow when told not to as well. lol

Yes! And if your hair is long, get as much away as possible from your neck. like a floppy messy bun that can be squished w/o pain. That's where I ran I to goo removal issues.

My hair at the time was pulled back in a high ponytail and still reached about mid back. Nurse asked a question while i was about to clean up and I turned my head to answer only to get a bunch of hair stuck in the goo on my neck bad timing

 

[SingingMom]

singing mom - when I read that you sleep with 3 or 4 pillows.

I sleep with 3 and if they get off center or off the position I put them in, I feel like I am choking etc.

I am thinking that is because of the neck dissection? Micayla care to chime in on this since you have a dissection too?

Anyone else use 3 or 4 pillows?

I like to sleep in a pile of mushy feather pillows! But, I did not have a dissection, just total thyroidectomy with some additional lymph nodes removal.

Every once in a while I do feel like I am choking if I lie flat. But I attribute it to post nasal drip. Every once in a while I do feel chokey while I sing. (I teach elementary school music & am a leader of song in church)

"SingingMom" ....Sent from my iPad using DISBoards

 

[itsdisneytime]

Well, where else do you go when your feeling low ... but to the DIS of course. Some of you may remember me, Ive leaned on this thread before for great advise. Ill refresh your memory for my sake of needing help thus again. I had total thyroidectomy (sp) July 2009. Followed by a pill form of radiation and isolation due to that for 10 days. Ive been on Synthroid of course since then (but I take the generic form) seem to have had no issues according to blood work ((some of you know the terms better but the generalized blood work they follow looked good)) ... Last year I had thyrogen? shots (2) and then a blood work that showed fine *praise god* .... and they were just fine with that. My doctor retired and his recommended doctor that took over my case within the practice just met with me last week and ordered a ultrasound scan. I had my scan Friday and the doctor saw 2 enlarged lymph nodes one on the right side and one on the left side of my neck. I was asked if Ive had any recent illnesses to which i said no, ... any dental work ... to which i said yes, so they opted to measure the lymph nodes and do a repeat in 3 weeks and at which time if there is no change or they grow, i will then have to get a biopsy. I am scared to DEATH. has anyone else been through this?

 

[luvmarypoppins]

Well, where else do you go when your feeling low ... but to the DIS of course. Some of you may remember me, Ive leaned on this thread before for great advise. Ill refresh your memory for my sake of needing help thus again. I had total thyroidectomy (sp) July 2009. Followed by a pill form of radiation and isolation due to that for 10 days. Ive been on Synthroid of course since then (but I take the generic form) seem to have had no issues according to blood work ((some of you know the terms better but the generalized blood work they follow looked good)) ... Last year I had thyrogen? shots (2) and then a blood work that showed fine *praise god* .... and they were just fine with that. My doctor retired and his recommended doctor that took over my case within the practice just met with me last week and ordered a ultrasound scan. I had my scan Friday and the doctor saw 2 enlarged lymph nodes one on the right side and one on the left side of my neck. I was asked if Ive had any recent illnesses to which i said no, ... any dental work ... to which i said yes, so they opted to measure the lymph nodes and do a repeat in 3 weeks and at which time if there is no change or they grow, i will then have to get a biopsy. I am scared to DEATH. has anyone else been through this?

I cant remember but didnt you also have the external beam radiation? Did they take out any lymph nodes during your initial thyroidectomy.

You neck has about 200 lymph nodes, so about 50 in each of the 4 quadrants. I had basically my whole L front quadrant removed, about 50 during my neck dissection.

I did have a swollen lymph node that was at level 2 I think. Cant remember. this was about 2 years after the total thyroidectomy. I cant remember. But it turned out to be an infected lymph node. But I had it accompanied by itchy skin too.

I am glad they are wanting to do a biopsy. Sometimes you have to get more rai.

But if you have already had rai and then the external beam and now you are having more lymph nodes, then maybe you are not rai avid anymore? Then maybe they could consider alcohol ablation.

I cant remember, but also are you the poster who did not like your surgeon/dr? or was that the endo?

If that is you and that is the case, I also might want to seek a second opinion.

Wishing you all the best and keep us informed. Hang in there!

 

[itsdisneytime]

Hi Marypoppins -- they did not take out any lymph nodes during my surgery. I did not like my surgeon. My endo was supposedly the best in town and ive taken his referral as probably better than starting off fresh with someone else. The reason I did not like my surgeon is because she really botched my surgery. I went in thinking I was having one surgeon and then somehow ended up with a Navy Doctor (when i was at a civilian hospital and I have no military affiliation what so ever in any of my family what so ever) ... I feel she was negligent during my surgery because she took what she thought was lymph nodes and sent them to be tested in path lab and they called back to o/r saying they were 2 parathyroid glands and they could not be reinserted so I am left with hypocalcimia (i take more calcium that 10 old ladies combined) not only that but she had sewn me up and somehow they realized that I was bleeding internally and they had to reopen me to find that she had cut a vein. My surgery was supposed to take 3 maybe 4 hours and i was supposed to go home that night or the next day. Instead the surgery was 9 hours and I was in the hospital 11 days following. I ONLY did a pill form of radiation. I went to oncologist and the nuclear physicist there had me swallow a pill that was radiation in some form. I was told to drive straight to isolation and given a card incase i was pulled over saying i was radioactive ... at "home aka isolation" i was alone and told to use one set of utensils and to wash them in scalding hot water... to flush like 3 times after i went to the restroom ... to of course have no contact with anyone for 10 days .... i was batty. I was depressed ... but I was grateful to be alive but soon I would have to remind myself daily that its not good to hate ... because I could easily "hate" the doctor who left me with this calcium condition. sorry I am normally very passive . I think my nerves are getting the best of me, plus talking about a buried memory stinks a bit. Thanks for your speedy reply. Had I remembered how dedicated you were to this thread, I would have hopped on the computer iso your reply sooner <3

 

[SingingMom]

Hi Marypoppins -- they did not take out any lymph nodes during my surgery. I did not like my surgeon. My endo was supposedly the best in town and ive taken his referral as probably better than starting off fresh with someone else. The reason I did not like my surgeon is because she really botched my surgery. I went in thinking I was having one surgeon and then somehow ended up with a Navy Doctor (when i was at a civilian hospital and I have no military affiliation what so ever in any of my family what so ever) ... I feel she was negligent during my surgery because she took what she thought was lymph nodes and sent them to be tested in path lab and they called back to o/r saying they were 2 parathyroid glands and they could not be reinserted so I am left with hypocalcimia (i take more calcium that 10 old ladies combined) not only that but she had sewn me up and somehow they realized that I was bleeding internally and they had to reopen me to find that she had cut a vein. My surgery was supposed to take 3 maybe 4 hours and i was supposed to go home that night or the next day. Instead the surgery was 9 hours and I was in the hospital 11 days following. I ONLY did a pill form of radiation. I went to oncologist and the nuclear physicist there had me swallow a pill that was radiation in some form. I was told to drive straight to isolation and given a card incase i was pulled over saying i was radioactive ... at "home aka isolation" i was alone and told to use one set of utensils and to wash them in scalding hot water... to flush like 3 times after i went to the restroom ... to of course have no contact with anyone for 10 days .... i was batty. I was depressed ... but I was grateful to be alive but soon I would have to remind myself daily that its not good to hate ... because I could easily "hate" the doctor who left me with this calcium condition. sorry I am normally very passive . I think my nerves are getting the best of me, plus talking about a buried memory stinks a bit. Thanks for your speedy reply. Had I remembered how dedicated you were to this thread, I would have hopped on the computer iso your reply sooner <3

Oh Shannon! (((Hugs))). What a terrible experience you had!
I remember the radiologist being real flippant about isolation. This was in the hospital, not at home, isolation. "Oh, they leave your meals at the door and your husband can wave from the window." Couldn't fathom why I didn't want to go through that when my reports came back that it really wasn't necessary. @@

Good luck to you!

"SingingMom" ....Sent from my iPad using DISBoards

 

[itsdisneytime]

SingingMom ... Im sorry that you had to go through that as well ... I am guilty in saying that I am relieved to know someone else that thought isolation was horrible. I swear, so many people I know act as if it would be a mini vacation, but, it was like I was in punishment. Maybe one of the days was okay to get caught up on senseless t.v. --- i wasn't prepared and didn't think through what it would really mean to be "alone" for 10 days. I actually stayed at my mothers house while they all took a vacation to be away from me during that time. My husband stayed home at our house in case of emergency (which is right next door to my Greek Mother) aye! If I need to go through that again, I will make sure to be better prepared and have a lot of "tasks" to complete.

 

[SingingMom]

SingingMom ... Im sorry that you had to go through that as well ... I am guilty in saying that I am relieved to know someone else that thought isolation was horrible. I swear, so many people I know act as if it would be a mini vacation, but, it was like I was in punishment. Maybe one of the days was okay to get caught up on senseless t.v. --- i wasn't prepared and didn't think through what it would really mean to be "alone" for 10 days. I actually stayed at my mothers house while they all took a vacation to be away from me during that time. My husband stayed home at our house in case of emergency (which is right next door to my Greek Mother) aye! If I need to go through that again, I will make sure to be better prepared and have a lot of "tasks" to complete.

Shannon - I actually didn't go through the isolation ! My levels came back just over the limit. The radiologist said they wanted to do it "just as an insurance policy" @@. We had lost one pregnancy before my diagnosis and decided we would try to get pregnant again. After a lot of research and thought, I said no to the radioactive iodine. Our feeling was, if the side effects were so bad that you had to be in isolation for over a week, how could that possibly be ok for your own body - ie: ovaries, etc. My endocrinologist was in agreement with our decision and reasoning. The radiologist was LIVID that I disagreed with his suggestion. Rude, arrogant man.

If my levels dictated having the treatment I would have gone through it. But to have radioactive iodine as an "insurance policy" for the radiologist just didn't make sense to me. I knew I would be under doctor's care for the rest of my life and if my levels increased, then I would have the treatment. And, if my endocrinologist told me I was wrong to refuse the treatment, then I would have followed his advice.

ps - surgery was in Feb, got pregnant in November, beautiful healthy baby girl born in August. That little girl turns 20 this summer and on her way to study in London next semester. My levels have stayed fine. Praise The Lord. ;-)

Keep the faith. Follow advice from your doctors, but be your own advocate also.

"SingingMom" ....Sent from my iPad using DISBoards

 

[luvmarypoppins]

Shannon - sorry about your isolation experience. My dh worked with it so he knew all the rules.

I stayed in the hosp. the first night. My rad. onc. said hardly anyone did that. Well I had a draining stomach wound from my other surgery so I didnt know what would happen, so we wanted it play it safe the first night.

My family stayed with me the whole time. Dh stayed in the living room with me and his distance was 10 feet and I used the rubber gloves for the computer and tv controller.

I washed all my dishes in the bathroom sink because they were using the kitchen. Dh slept on the couch and used our 2nd bathroom.

My ds were in college/high school. They passed me going out the door each day and dh just gave me the food and left away from me.

I couldnt imagine being totally alone all during the time. I dont know what info. you got. Seems a little extreme.

Hoping you get good result from your testing. Hang in there!

 

[Christine]

Shannon - sorry about your isolation experience. My dh worked with it so he knew all the rules.

I stayed in the hosp. the first night. My rad. onc. said hardly anyone did that. Well I had a draining stomach wound from my other surgery so I didnt know what would happen, so we wanted it play it safe the first night.

My family stayed with me the whole time. Dh stayed in the living room with me and his distance was 10 feet and I used the rubber gloves for the computer and tv controller.

I washed all my dishes in the bathroom sink because they were using the kitchen. Dh slept on the couch and used our 2nd bathroom.

My ds were in college/high school. They passed me going out the door each day and dh just gave me the food and left away from me.

I couldnt imagine being totally alone all during the time. I dont know what info. you got. Seems a little extreme.

Hoping you get good result from your testing. Hang in there!

I think the warnings she got were extreme too. Both of my RAI treatments were done in the hospital because, at the time, that was the law in the state of Virginia. I had to stay in until my Geiger Counter drop to a certain level. One time I stayed one night and the other time I had to stay two nights.

After that I was "good" to be 6 feet away from the family and I just used a separate bathroom for a few days.

 

[SingingMom]

I think the warnings she got were extreme too. Both of my RAI treatments were done in the hospital because, at the time, that was the law in the state of Virginia. I had to stay in until my Geiger Counter drop to a certain level. One time I stayed one night and the other time I had to stay two nights.

After that I was "good" to be 6 feet away from the family and I just used a separate bathroom for a few days.

One or two nights sounds doable -by no means great, but you know what I mean. In my situation, I was told an entire week - at least 7 days. That factored into my decision. This was the day when you had to be off your synthroid to have the full body scan and I was a mess. The idea of sitting in the hospital alone for a week, on top of my main concerns, was just too much to handle. I remember going to see my endocrinologist directly from the unpleasant scene with the radiologist. I took my sunglasses off and he blurted out, very uncharacteristically, "oh my! You look like hell!!!" Lol
I am glad to hear you no longer have to be off meds for two weeks before that scan!

"SingingMom" ....Sent from my iPad using DISBoards

 

[Christine]

One or two nights sounds doable -by no means great, but you know what I mean. In my situation, I was told an entire week - at least 7 days. That factored into my decision. This was the day when you had to be off your synthroid to have the full body scan and I was a mess. The idea of sitting in the hospital alone for a week, on top of my main concerns, was just too much to handle. I remember going to see my endocrinologist directly from the unpleasant scene with the radiologist. I took my sunglasses off and he blurted out, very uncharacteristically, "oh my! You look like hell!!!" Lol
I am glad to hear you no longer have to be off meds for two weeks before that scan!

"SingingMom" ....Sent from my iPad using DISBoards

Yes, my treatment was back in 1995 and I had to do the withdrawal scans/treatment. By the time I got to the hospital for RAI, my TSH was at 168 and I was starting to have kidney and liver function issues. After the dose of 150 mci, the shoved sour candies and all sorts of fruit in my face. Sometime in the middle of the night I felt really "odd". I can to call the nurses in and tell them I thought I was dying. I was having some weird blood sugar crash (probably from all the sweets and my body not working right) and they all got so freaked out. It was scariest thing I had ever been through and I felt so alone.

Way back then, each state had it's own regulations (probably still do) about when you could be let out on the street after RAI. My radiologist knew that most people got out in 1-2 days. Whatever your state was doing at the time could have been very strict, hence, the possibility of seven days.

 

[SingingMom]

Yes, my treatment was back in 1995 and I had to do the withdrawal scans/treatment. By the time I got to the hospital for RAI, my TSH was at 168 and I was starting to have kidney and liver function issues. After the dose of 150 mci, the shoved sour candies and all sorts of fruit in my face. Sometime in the middle of the night I felt really "odd". I can to call the nurses in and tell them I thought I was dying. I was having some weird blood sugar crash (probably from all the sweets and my body not working right) and they all got so freaked out. It was scariest thing I had ever been through and I felt so alone.

Way back then, each state had it's own regulations (probably still do) about when you could be let out on the street after RAI. My radiologist knew that most people got out in 1-2 days. Whatever your state was doing at the time could have been very strict, hence, the possibility of seven days.

Oh boy! I cringe when I think of you having kidney & liver function issues!! I remember being so proud of myself throughout my entire ordeal that I never looked like I was ill. Then, one day during the withdrawal of the meds before my scan, I was walking up the street to go shopping and the aches in my legs were excruciating. I came home and burst into tears, telling my husband, " Anyone passing me on the street probably thought - oh,that poor young woman is dying!" :-(
Silly thought maybe, but when you are 29, that is not how you expect to feel!

"SingingMom" ....Sent from my iPad using DISBoards

 

[Christine]

Oh boy! I cringe when I think of you having kidney & liver function issues!! I remember being so proud of myself throughout my entire ordeal that I never looked like I was ill. Then, one day during the withdrawal of the meds before my scan, I was walking up the street to go shopping and the aches in my legs were excruciating. I came home and burst into tears, telling my husband, " Anyone passing me on the street probably thought - oh,that poor young woman is dying!" :-(
Silly thought maybe, but when you are 29, that is not how you expect to feel!

"SingingMom" ....Sent from my iPad using DISBoards

You've got me reminiscing about the old days!! I was around 31/32 when all that was happening. I was another one that never looked/sounded ill during the whole. To the point that when I showed up for my pre-scan bloodwork the radiology tech told me that she doubted I would be ready because I looked too good. She was shocked when I was at 145 TSH. I understand what she meant because a man in my office was going through it all and he had been off his meds for, maybe, three weeks and he looked awful. Swollen face and very hoarse voice.

I do remember each time I went through it I got really bad carpal tunnel in my wrist and my calves use to hurt. My vision would get all weird too. Yet, I looked great.

 

[luvmarypoppins]

After reading your stories I am so glad that I never had to do the withdrawl. Well I did here the onc nurse say, oh you are getting thyrogen. Hm, we usually save this for the old people. Guess I was under that category.

Honestly in the 6 weeks between the surgery and the rai I had:
Had 15 minutes to live
Been in the coma for 2 days
Lost 7 pints of blood
Had 9 inches of my colon resected
Developed some kind of infection for the unhealed wound
Had an n/g tube in me for about 5 days and no food allowed
Lost 40 lbs.

Then I got to cook all the wonderful food for myself before the rai etc.

My dh even said I looked like death warmed over. I guess the dr didnt want to say it to me too.

Oh and i did hear the way to get to stay in the hospital after the rai is to have the rad. onc. right on your report to the insurance company when they do the pre approval of it is that you cannot comply at home for whatever the reason. I dont know if she stated one for me. I was glad to stay there, believe me with all I went through. One less day of cooking for me etc. The food was terrible anyway. I longed for some soup etc.

Ah, those were the days, not! Pardon my warped sense of thy ca humor.

 

[bellanotte10]

Hey guys! Looks like I'll probably bowing out of this thread! My new doctor thinks it's an autoimmune disease and I'm being sent to a rheumatologist. (Funny story, she actually had the office call me to make sure I made the appt) If that doesnt work then I'm going to an endo. Thanks for all your help! I appreciate it!!!

 

[angwill]

OK, I have had hypothyroidism for almost 20 years now and my TSH levels have been regulated by Levothyroxine. I only had one issue with the levels when I was taking a multivitamin with iron many years ago. I started seeing a new doctor recently who wanted all kinds of stuff done I never had done. Thyroid antibody and a TSH receptor test as well as an ultrasound of my thyroid. Well I got the news from the doctors nurse that I have a large mass on the right side of my thyroid and she stupidly chose to tell me it most likely is cancerous because of the size and only being on one side. I guess she has ESP because no biopsy was done. The other tests were sent to Mayo clinic and didn't come back yet.

Anyway, now the doctor wants an uptake scan done and I am wondering why they wouldn't just want a biopsy since the scan isn't going to tell if it is cancer or not. I also have a nurse friend who had the same scan the same day as me and has a nodule her doctor just ordered a biopsy of.

I have not read back too much to see if anyone else has been through this recently and has any encouragment, stories etc. for me. What can I expect? I was not even told if I needed to stop any meds or anything just to call the hospital to set up the uptake scan. I plan to call tomorrow and ask to go straight to biopsy. Has anyone done the uptake scam before biopsy with a large mass on one side of their thyroid?

Thanks,
Ang

 

[mrsklamc]

Yes, and if I had it to do over again I would insist on knowing the answer to your question before I had it done. I am concerned that it may have negatively affected the uptake of my RAI.

 

[Christine]

I had an uptake scan. They did that many years ago to ascertain if the nodule I had was hot or cold. Cold likely means cancerous but it doesn't tell the whole story. It does put RAI into your gland. If you do end up having cancer, surgery, and then RAI for treatment, the previous administration of the uptake RAI could influence your treatment dose. As long as they are a good 6 months apart, you should be okay.

Don't freak over the size. Sheesh, NURSES!!! I've know quite a few people with massive nodules who did not have thyroid cancer.