The THYROID Thread

[mrsklamc]

h

Happy to report that there is endo success!! They called and gave me a visit in mid July. I usually go the end of the month, but I will take it. Only bad thing is the week before that I need to get the sono is the week I am teaching VBS at my church. Afte dealing with 20 3rd graders I will be happy to rest on the table for about 20 min

My ds3 just found out that he was not accepted into his Number 1 choice nursing school. Oh well. He wa accepted into about 4 or 5 others. He has it narrowed down to 2. One an RN and one a BSN. The BSN he needs to board and it will be like 99k. The RN program is cheap and he could transfer to a BSN bridge program at another college. Decisions, decisions.
So glad I am not on 200 synthroid because if I heard the 99k price with that I would have really freaked.

So glad he has some options.

 

[mrsklamc]

Haima- sorry no one responded to you. Unfortunately your symptoms are outside of my area of knowledge. Although maybe that's NOT unfortunate cause what I know about is pretty much thyroid cancer.

My potassium is low- neither of my doctors was too worried about finding out why. Anyone else had this symptom?

 

[luvmarypoppins]

Haima - sorry I am clueless as far as the numbers go. Usually my endo will either tell me the numbers or have the secretary or nurse call and just say, oh your numbers are good or ok etc. When you say the biopsy is the 10th, do you mean today?? If so, wishing you all the best. Its good that hopefully you will get some definitive answers from this. Although my first biopsy was inconclusive, so I had to have 2 more, the third one being a core biopsy, but I had 2 solid tumors. Wishing you all the best.

talulabelle - glad you got a good ultrasound report. Those are the best!!

Well I am back from the oncologist. She said all is well. She also observed my wonderful tearing eye. Told her I was at the surgeon, need surgery etc. She says I should get it done because you have to worry about infections etc. I didnt want to get into it with her. The eye surgeon told me it could wait as long as there were no infections (which I havent had any)

She wants the endo to check my thyroglobulin in July. (I have to look but I think the endo already ordered that test for me). If its not on my lab sheet I will call and ask ahead of time)

The oncologist said her plan is for next year to give me two thyrogen shots and a blood test again. Of course, you know my oncologist never has a shortage of thyrogen. That will happen sometime next June. Made sure it was after our Disney trip, No diet, just the shots.

 

[Christine]

Funny my doctor must not know how to read the tests then as I just got mine done and she explained it opposite of what you are saying. I will have to talk to her about it when I see her in a few months.

Yeah, you should. TSH is the only one of the thyroid tests that is "inverse". That's because TSH is not a true thyroid hormone, it is a pituitary hormone. So if you are hypo, the pituitary pumps out a lot of TSH to try to make your thyroid work--hence, high TSH means low thyroid. If you are hyperthyroid, the pituitary puts on the breaks and shuts down TSH production so low TSH means HIGH thyroid.

The other hormones: T3 and T4 are direct thyroid hormones and the level of them is measured in the bloodstream. If they are low, you just don't have enough, so hypo.

 

[Haimia]

Thanks, everyone, for your help. I know sometimes a post gets overlooked. Not a problem. Just trying to find out information as this is all new to me.

Endo is thinking I am hypo but the tests confused him. He was looking at the FT4 and says "hmmm, that's interesting." No explanation. I had the TSH and FT4 tests redone per endo. The results are:
TSH 2.233 mclU/ml (0.400 - 4.200)
FT4 1.10 ng/dL (0.89 - 1.76)

Yes, also had the FNA biopsy yesterday. The worst part was the disinfectant used to clean my neck off then covered my face with the sterile cloth - all I could smell was the stinky disinfectant - Needed Air!!! ugh. They took two samples from each of the two larger nodules. Results to get at the doctor by next Wednesday (my next endo appointment).

 

[Christine]

Thanks, everyone, for your help. I know sometimes a post gets overlooked. Not a problem. Just trying to find out information as this is all new to me.

Endo is thinking I am hypo but the tests confused him. He was looking at the FT4 and says "hmmm, that's interesting." No explanation. I had the TSH and FT4 tests redone per endo. The results are:
TSH 2.233 mclU/ml (0.400 - 4.200)
FT4 1.10 ng/dL (0.89 - 1.76)

Yes, also had the FNA biopsy yesterday. The worst part was the disinfectant used to clean my neck off then covered my face with the sterile cloth - all I could smell was the stinky disinfectant - Needed Air!!! ugh. They took two samples from each of the two larger nodules. Results to get at the doctor by next Wednesday (my next endo appointment).

Your TSH and FT4 actually look very good. You are right in the middle of both ranges.

 

[luvmarypoppins]

Haimia - glad to hear the FNA is over. Wow, I never had a cloth on my face. I have seen them do that with pic line insertions One being my hospital roomie once. I think that would have freaked me out. Needles dont bother me in the least.

Wishing you all the best. I am sure next wed. cant come soon enough for you. Waitng is the hardest for sure. Hang in there.

 

[mrsklamc]

Just heard that Yahoo's ex or soon to be ex CEO has thyca. They say it's why he's stepping down but unless it's anaplastic I would guess it's has more to do with lying about his academic records.

 

[sjlupin]

Hi!

I can't believe I found this thread!! I didn't know you all were here!

I had a complete thyroidectomy on March 8th and it was cancer (multiple cancerous nodules in each lobe). I am having my RAI dose tomorrow. Have been on LID for a week and had two Thyrogen shots - one today and one yesterday.

I recently was told I had to have a whole body scan next Thursday. Can anyone tell me what that is like? Do I have to be given more RAI for it???


Thanks!
Sandy

 

[luvmarypoppins]

Sandy - welcome, but sorry you have to be here. I am surprised you only had to be on the diet for a week. I had to be on it for 2 weeks and I think Micayala had to be on it almost 3.

But glad you got thyrogen. That is all I have always gotten too.

The scan you will just lay on the table for a long time maybe up to an hour? Some places let you bring music etc, I just rested and sang my favorite contemporary christian songs to myself. The one part of the machine will get very close to your face. Just lay still and close your eyes. Its not bad, just weird.

How much is your RAI dose going to be? I suppose they gave you all the instructions etc.

Wishing you all the best. Keep us informed when you can.

 

[sjlupin]

Thanks for the welcome!

I was surprised about the diet too. I started last Wed and have to continue through this coming Friday. Originally he said 1-2 weeks prior to RAI, but ultimately said 1 week was enough. Not sure what the deciding factors where for that?

I am sooo glad I got the Thyrogen too. I wasn't sure awhile back - it didn't look like insurance would cover it and it is $2500! It turns out it is covered and I was able to do it and not go off my Synthroid. Phew!

I'm not sure what my dose is. I was wondering that as well. I'll try to find out tomorrow.

Thanks for the info on the scan. I appreciate it!

I'll check in while I am isolated. I am going to be LONELY!!! I hate being cooped up and/or away from my family. I will actaully be in my house, but will just be staying away from everyone. It will make me sad. Lol

 

[1Grumpy9]

I head back to the Endo tomorrow for a check up to see how things are going. I will probably have to go get bloodwork tomorrow after my appt. I have been feeling pretty good (still not sleeping too well..actually not really wanting to sleep at a normal time). Hopefully everything is going to be good. This is my first visit in her new office (her very own practice).

 

[sjlupin]

I had my RAI dose this morning. I think the dose was 32.4. He said it was lower than he thought he was going to give me. He said there was new research and guidlines released a few weeks ago that lead to a lower dose and lesser restrictions afterwards.

He was telling me too that they feel that for Thyroid Cancer patients, the RAI passes through within the first 24 hours (since we have very little thryoid tissue to absorb it, we hold on to it less time, verses someone doing RAI due to hyperthyroid with the gland still present). I only have to sleep alone for 3 night and stay away from general public for 5 days. I can go back to the office on Monday!

So, I basically feel ok. My mouth is a little sore. The tip of my tongue feels a bit weird (almost numb-ish) and I have a few sores inside my upper lip. My mouth is susceptable to this type of thing when I am stressed or eat alot of acidic foods - all of which have been true lately with the LID, etc. So, it could be coincidence. Also, I am really, really tired this morning. I think that just may be a result of stress/anxiety. Anyone else have mouth issues after RAI? Just curious.

Sandy

 

[Christine]

Hi!

I can't believe I found this thread!! I didn't know you all were here!

I had a complete thyroidectomy on March 8th and it was cancer (multiple cancerous nodules in each lobe). I am having my RAI dose tomorrow. Have been on LID for a week and had two Thyrogen shots - one today and one yesterday.

I recently was told I had to have a whole body scan next Thursday. Can anyone tell me what that is like? Do I have to be given more RAI for it???


Thanks!
Sandy

The scan is the easy part.

It's not like an MRI where you are closed it. You lay on a table and, depending on the equipment, the camera moves over and under you. It takes about 45 minutes and is quite peaceful. You won't take any more RAI other than the dose you took today. Some places will tell you right away what is on the scan and some places make you wait.

Good luck, really, the hard part is over.

 

[sjlupin]

Thanks Christine!

I was able to ask them a few questions about the scan this morning. They showed me the machine and confirmed that I don't have to get more RAI. My endo was funny he said they feel like since patients doing this have had the RAI they feel that they might as well take advantage and do the scan. Let's just hope they don't find anything else!

 

[Christine]

Thanks Christine!

I was able to ask them a few questions about the scan this morning. They showed me the machine and confirmed that I don't have to get more RAI. My endo was funny he said they feel like since patients doing this have had the RAI they feel that they might as well take advantage and do the scan. Let's just hope they don't find anything else!

Yes, a post-ablative scan. A very good idea and rarely do they ever find anything else.

I also has the 30 mci dose on my first RAI treatment. It didn't burn out the entire thyroid for me so I had to have more treatments the next year. I hope it works for you.

Doing the LID for 1 week is actually fine as long as you do it well. I have heard that they recommend doing it for 2 weeks prior to the RAI dose because they feel that it takes patients the first week to "get it right" and by the second week they've mastered it. I think that's BS. By the second week, they are insane!!! Anyway, it takes approximately a week for iodine to be secreted from your body so one week should be just fine as long as you were good at it!

 

[luvmarypoppins]

Well tomm. afternoon dh and I will be in Disney World I am weary of washing and getting ready to pack. Dh just got back from Calif. this morning.

I hope the swimming at Storm A long Bay helps my arm a little.

Its def. going to be about the food - Brown Derby, Le Cellier, Chefs De France,Kona, Liberty Tree Tavern, Tutto Italia (For My B day) and Citricos (for our anniv). and Cape May Bufffet because dh must have crab legs.

We are going to the Star Wars Parade and the Flower and Garden on Sat . (meeting one of the breast cancer disers there - her mom has bc).

 

[Christine]

Well tomm. afternoon dh and I will be in Disney World I am weary of washing and getting ready to pack. Dh just got back from Calif. this morning.

I hope the swimming at Storm A long Bay helps my arm a little.

Its def. going to be about the food - Brown Derby, Le Cellier, Chefs De France,Kona, Liberty Tree Tavern, Tutto Italia (For My B day) and Citricos (for our anniv). and Cape May Bufffet because dh must have crab legs.

We are going to the Star Wars Parade and the Flower and Garden on Sat . (meeting one of the breast cancer disers there - her mom has bc).

Enjoy! Citricos has always been a must-do for us. We really love the place. Are you going to do a dining report? I love reading those.

 

[Haimia]

Went to endo yesterday. Nodules are BENIGN!! But, thyroid is coming out anyway due to the size/location of the nodules. One is on the isthmus and I can feel it when I swallow. I had been blaming it on cervical neck surgery from about a year ago (the doctor shoved aside the stuff in the way to get to the spine). The other nodule is now real prominent since the FNA. So, thyroid comes out in August (after wedding and vacation!).

I also had to get all bloodwork done again, since endo is a little unsure of how true my other results were (TSH, FT4 and FT3). I will be calling him in a week if he does not call me first.

I am so glad that DD#2 wedding can go ahead with no hitches or surgeries mixed in. Also, Germany trip is untouched! So, August will be plenty soon enough for me! Thank you all, for your help and understanding with my posts.

 

[Christine]

Went to endo yesterday. Nodules are BENIGN!! But, thyroid is coming out anyway due to the size/location of the nodules. One is on the isthmus and I can feel it when I swallow. I had been blaming it on cervical neck surgery from about a year ago (the doctor shoved aside the stuff in the way to get to the spine). The other nodule is now real prominent since the FNA. So, thyroid comes out in August (after wedding and vacation!).

I also had to get all bloodwork done again, since endo is a little unsure of how true my other results were (TSH, FT4 and FT3). I will be calling him in a week if he does not call me first.

I am so glad that DD#2 wedding can go ahead with no hitches or surgeries mixed in. Also, Germany trip is untouched! So, August will be plenty soon enough for me! Thank you all, for your help and understanding with my posts.

Congratulations on the mostly good news and glad you can get it worked out with everything else going on!