The THYROID Thread

[luvmarypoppins]

O.K. I guess I drank way too many cups of red hawaiian punch and kool aid

 

[mrsklamc]

I guess it seems a little strange to me that when the LID cookbook says to watch out for it, that it doesn't mention that it's been off the market for 'most 'uses since 1990. But I guess you still have to look for it since I don't know what uses it might still be used for.

DH wants to order iodine test strips for the next time I have to do this. I emailed thyca about the pickle issue and she suggested the recipe from the cookbook (ironically she's the contributer of the pickle recipe) and she mentioned that she 'didn't have any store bought pickles here to test.' So he thinks next time we should just buy pickles and dairy products and test them ourselves. I've tried convincing him it's overkill because I mostly do fine. The only things that were hard this time were pickles and cheese, and now the cravings are mostly gone. Plus, I can experiment with getting the dill pickle taste right for next time. Just 4 days to go!

 

[luvmarypoppins]

Thats great that you got to call them Micayla. Hang in there. 4,3,2,1!!

I told you after this scan I spent about 2 days in the bathroom. I hope you dont have the same reaction, but am wondering since es said she did too.

So do you know or are you just thinking you will have to do the diet again next year. I am so happy my rad. onc. told me I am only doing the 2 thyrogen shots and then blood tests, so that will only be 3 days visiting the hospital and I know my dh will go as he loves the food there. Go figure.

Say a prayer, I am going to the stomach surgeon tomm. I hope he gives me some good news. and not the "S" word.

 

[mrsklamc]

I don't know if I have to do it next year. I guess I was thinking you had to do the LID even with thyrogen?I don't know, I haven't talked to my doctor about it yet, other than in two months we get to start trying to conceive again so assuming that works out we'd look at scanning again about 2 months after the baby...

I hope no surgery for you!!!

I had forgotten about nausea after the scan, I guess I was hoping with this 'tracer' dose it wouldn't be like that. Drat!

 

[luvmarypoppins]

!

I had forgotten about nausea after the scan, I guess I was hoping with this 'tracer' dose it wouldn't be like that. Drat![/QUOTE]

No. it was more from the other side of things for the both of us.

 

[Christine]

I don't know if I have to do it next year. I guess I was thinking you had to do the LID even with thyrogen?!

You only do the LID if you are having a scan (tracer dose). If you are just doing the Thyrogen and bloodwork you don't have to do the LID.

 

[mrsklamc]

You only do the LID if you are having a scan (tracer dose). If you are just doing the Thyrogen and bloodwork you don't have to do the LID.

Oh good! And I went back a few pages and read that your tracer dose didn't seem to bother you so hopefully....

I'll let you know. My appointment to take the pill is tomorrow morning and then my scan is Friday morning...then assuming I feel well I am eating every dairy product in sight! I have kinda lost my appetite for all my LID friendly foods. Just bored with it all. Not especially hungry either though so I guess it works out.

 

[dischick4778]

luvmarypoppins - good luck with your surgeon tomorrow! fingers crossed for positive news.

mrsklamc - best of luck with your scan!

 

[mrsklamc]

mrsklamc - best of luck with your scan!

Thank you. I took the tracer dose this morning and so far no adverse reaction. Drinking lots of water and being bored. Can't sleep, tired of reading, watching tv, listening to audiobooks, etc. Want to be 'me' again.

I hope your recovery continues to go well.

They told me this morning I won't automatically be going off the diet on Friday and going on my meds, because if they want to give me another treatment dose I'm all prepared for it. I was very bummed; I had thought that if there was any tissue left it would be in lymph nodes and my endo had mentioned having alcohol injected directly into the nodes but not another treatment dose so I had figured there would be no reason to stay on it. If I can't get off this diet it's going to be a LONG weekend.

 

[luvmarypoppins]

Micayla - glad you made it through the tracer. What precautions did they give you? Dh was not suppose to sleep with me, good he was at a conference anyway. So you have to drink alot of water? I told you I had to take the mom for 2 days.

Also I know it sounds crazy about the diet but I also asked my rad. onc. Her plan was to tell me the scan results right away, but they told me just because that was o.k. it didnt mean the blood test would be o.k. and the blood test is more accurate. My scan number was 1.0. She likes it at 0.5 but said even up to 4.0 is o.k. for her.

I also asked her what if the blood tet was positive because I told her I was already going to disney world etc. She told me if the blood test was positive then I would have to do the whole diet all over again, so I guess its better for them to be sure etc. Also since its a little earlier than the 1 year mark too etc.

Also I told you es and I both had diarrhea for 2 days after the scan. As soon as we ate we were running to the bathroom, so stay close to home

dischick - I dont know if you mind sharing, but I was just wondering how many lymph nodes you had out and how many were positive, especially since you have a rare variant like me too!!

Oh and on a side note about me and the surgeon today... He is now going to try an antibiotic for 2 weeks, then the 3rd week he will be on vacation, so I cant go back to sept. 7th. If nothing has changed he will do some surgery. So far just a day thing, but we will talk more in sept. I have a feeling it might be worse than he thinks. It usually always is with me. The other surgeon said "you are full of surprises", yeah I know that. Ok I feel like a bad movie sequel, summer of the draining wound II, 2010 . For all those who thought 2009 wasnt enough for you. (I told you I have a strange sense of humor) I also told the surgeon this. He did not laugh. he never does. He is so serious all the time.

Wishing you all the best.

 

[mrsklamc]

Micayla - glad you made it through the tracer. What precautions did they give you? Dh was not suppose to sleep with me, good he was at a conference anyway. So you have to drink alot of water? I told you I had to take the mom for 2 days.

Also I know it sounds crazy about the diet but I also asked my rad. onc. Her plan was to tell me the scan results right away, but they told me just because that was o.k. it didnt mean the blood test would be o.k. and the blood test is more accurate. My scan number was 1.0. She likes it at 0.5 but said even up to 4.0 is o.k. for her.

I also asked her what if the blood tet was positive because I told her I was already going to disney world etc. She told me if the blood test was positive then I would have to do the whole diet all over again, so I guess its better for them to be sure etc. Also since its a little earlier than the 1 year mark too etc.

Also I told you es and I both had diarrhea for 2 days after the scan. As soon as we ate we were running to the bathroom, so stay close to home

dischick - I dont know if you mind sharing, but I was just wondering how many lymph nodes you had out and how many were positive, especially since you have a rare variant like me too!!

Oh and on a side note about me and the surgeon today... He is now going to try an antibiotic for 2 weeks, then the 3rd week he will be on vacation, so I cant go back to sept. 7th. If nothing has changed he will do some surgery. So far just a day thing, but we will talk more in sept. I have a feeling it might be worse than he thinks. It usually always is with me. The other surgeon said "you are full of surprises", yeah I know that. Ok I feel like a bad movie sequel, summer of the draining wound II, 2010 . For all those who thought 2009 wasnt enough for you. (I told you I have a strange sense of humor) I also told the surgeon this. He did not laugh. he never does. He is so serious all the time.

Wishing you all the best.

They were very lax about the precautions this time since we don't have kids; Not closer than 4 feet for more than 6 hours and use a separate bathroom if possible. DH said 'so no sleeping in the same bed?' She said 'Depends how long you want to sleep.'

They said drink lots of water and suck on lemon drops or other hard candy. They didn't offer any info on MOM so I asked cause I don't want there to be any doubt on the scan if possible.

I didn't know the blood test was considered more accurate than the scan? I do know my result from Friday was <1, so that gives me hope that the scan will be clean.

Praying something goes right for you for once!!! Eventually something has to go the right way right?

 

[mrsklamc]

Oh on the <1 score, the last time my endo's office said that <1 was good but they preferred undetectable; I mentioned that to the nuclear med person and she said she doesn't think the report she gets ever says anything below <1.

 

[luvmarypoppins]

I forgot to mention this...last week I was waiting at the dentist office and I was reading either family circle, womans day or bhg, I cant remember, but on the last page was an interview with Catherine Bell. She said something like.....since I was dignosed with thyroid cancer at age 21, I have learned to appreciate life and live each day to the fullest. Dont quote me on it but something like that.

I thought that was very positive and encouraging.

 

[dischick4778]

dischick - I dont know if you mind sharing, but I was just wondering how many lymph nodes you had out and how many were positive, especially since you have a rare variant like me too!!

I wasn't sure but just found my report. From the central compartment it says multiple lymph nodes positive. Then from the right side it says they took out 14 lymph nodes of which 4 were positive. The Dr told me they literally took out everything they could. And the tumor was wrapped around my vocal cords so he had to get special permission from my husband during the surgery to take this out because there was a risk I wouldn't be able to speak. I still don't have my voice back fully, but it is fine in my mind.

mrsklamc - Good luck with your scan tomorrow!

 

[mrsklamc]

Nuclear med Dr. says I am CLEAR!!!!!!!! I am so excited...but a little confused. The technician on Tuesday said they would NOT be able to tell me to stop taking my meds and go off the diet before I left today, that I would have to wait to hear from my endo. But then, the tech today told me exactly that. I am trying to be patient and wait to hear from the endo's office but it is so hard. Surely they wouldn't have risked the liability of telling me that if they weren't sure?

 

[luvmarypoppins]

Micayla - I am so happy for you too. That is great news. I hope the endo lets you go off the diet. I am surprised they told you the results too. Here after the scan I just went to the rad. onc. (in the same hosp) and she told me the results. Did you have a blood test too today? I suppose my stuff was different with the thyrogen,

dischick - I guess the columnar cell and tall cell are similar with the agressiveness. I was told that there was a possibility that I would wake up with a trach tube depending on what he found. I didnt want to say before but I almost died during my surgery. Well surgeon #1 operated for 6 hours. Talked to my dh and the 3 ds and then was paged and operated on me another 2 hrs for post op bleeding. He never found the source he said later on. Then at 4 am my neck turned into a watermelon dh said. He was pushing my bed into the elevator and surgeon #2 operated on me for 3 hours. They just hired him from Westchester and he couldnt even find the operating rooms. He said my jugular vein burst and I needed 7 pints of blood and was put in an induced coma for 2 days. They told me that the voice you have at 18 months will basically be it. My r vocal cord was bruised during the surgery. I have had alot of scopes and did the strobe test in january. They cant find anything wrong but my voice gets weak and gives out sometimes but I did with it. Its usually after 8 pm if I am talking alot during the day. Sugeon #2 is a voice specialist so that is good for me. They can scope you again and compare the vocal cord stuff from before to see if there is improvement, no change etc. Wishing you all the best with the voice too.

 

[ElizK]

I can't thank you enough for the information ya'll have been able to give me. I'd like to pick your brains again, if you don't mind.

Last time I posted I mentioned the random sore throats. Still doing that, but since last week it feels like I have a big lump in my throat. My thyroid is definitely enlarged. Sometimes it is more uncomfortable than other times. I'm having my follow-up blood work done today, so I'll find out if my dose adjustment was enough..

I don't even know what I'm asking... maybe I just need a pat on the head? I can't find anything about any of this that would send me running for the doctor's office. I can't feel any new nodules, overall I feel about the same. Any words of wisdom for me?

 

[mrsklamc]

Eliza- I would definitely call your dr.

My end's assistant called back and said I could stop the diet because the scan was normal but wait on the mess as not all my bloodwork was back? Not sure how that could be since there were only 4 things on the bloodwork order and they had those all before the scan. Weird.

 

[Christine]

I can't thank you enough for the information ya'll have been able to give me. I'd like to pick your brains again, if you don't mind.

Last time I posted I mentioned the random sore throats. Still doing that, but since last week it feels like I have a big lump in my throat. My thyroid is definitely enlarged. Sometimes it is more uncomfortable than other times. I'm having my follow-up blood work done today, so I'll find out if my dose adjustment was enough..

I don't even know what I'm asking... maybe I just need a pat on the head? I can't find anything about any of this that would send me running for the doctor's office. I can't feel any new nodules, overall I feel about the same. Any words of wisdom for me?

ElizK--

Have you had a thyroid scan yet to measure your thyroid and to see if you have nodules? Or an ultrasound?

 

[Christine]

Micayla,

Congrats on the clean scan.

Hmmmm...if you've had your thyroglobulin test back already, I can't imagine what they are waiting for.

My old endo always gave the nuclear doctor 'permission' to give me the results. That was nice. I could always go back on meds, eat what I wanted once I heard from them.

I just wonder what the hold up is for you.