The THYROID Thread

[luvmarypoppins]

Well back from the surgeon and surprise of all surprise's they discovered Papillary Carcinoma. It was a small area and did not spread outside the thyroid. I have an appointment in the morning to see the Endo and discuss what's next.

Question for those of you who have gone through this will I do the radioactive iodine??

So sorry you had to hear the news no one wants to hear. Its the beginning of a journey. But we are all here to support you and have done this too.

Did you get a copy of the path report? That is telling in itself. I have been reading that alot of drs. are taking into consideration tumor size etc. when considering rai lately.

Also who decides if you are getting the rai, your endo or oncologist? I know they do it differently in many places. I have a whole cancer team since I go to a teaching hosp. The rad. onc. decides if I was to get the rai and what the dose would be. Mine was a no brainer, 12.5 tumor, then another 4 cm tumor and then 6 positive out of 46 lymph nodes, plus the rare aggressive variant. They figured out mine by that and age and weight.

The standard dose is 150 but you could get less etc.

Wishing you all the best. You will get through this. Stay strong. Ask any questions that you may have.

Maybe keep a little notebook and write things down etc.

 

[Christine]

Well back from the surgeon and surprise of all surprise's they discovered Papillary Carcinoma. It was a small area and did not spread outside the thyroid. I have an appointment in the morning to see the Endo and discuss what's next.

Question for those of you who have gone through this will I do the radioactive iodine??

In my opinion, no matter how small, you should have radioactive iodine. The old way of thinking was that if tumors were under 1 cm, surgery was enough. What the studies have found lately is that even microcarcinomas have the ability to have lymph node involvement (even if the thyroid capsule has not been invaded by the tumor). It's an odd thing. Radioactive iodine is like "mopping up" what the surgeon cannot see.

I'm sorry for your bad news....

 

[4under4]

I'm so sorry. You will get through this, and when it's over, or should I say when the roughest part of the process is over, you will have a great reason to celebrate... I went to WDW

I agree with PP... have the RI treatment. It will give you a lot of peace of mind knowing it's all been wiped out. It also makes the ongoing hormone replacement easier since there won't be any pesky little "natural" hormone amounts to account for.

For now, rest, rest, rest.

 

[mrsklamc]

I am sorry you got that news but I would agree, go ahead and get the RAI. At 150 the side effects really weren't too bad compared to the peace of mind.

 

[mrsklamc]

BTW, I was at 137 6 days a week and 150 1 day a week...my TSH was 0.072 and she dropped me to 112 daily...That seems like a huge swing?

 

[Christine]

BTW, I was at 137 6 days a week and 150 1 day a week...my TSH was 0.072 and she dropped me to 112 daily...That seems like a huge swing?

That is a huge drop. I'm wondering why not trying just .137 6 days a week or even .125 for 7 days.

I take .137 5 days a week, 1/2 of a .137 on Saturday, and nothing on Sunday. Keeps me at a perfect level. It I go to .137 all week, I am almost totally supressed. If I go to .125 all week, my TSH is near 4.0. A big difference.

 

[WDWDancer]

Thank you everybody...it was shocking news to hear and I don't think it has fully sinked in.

I'm 25 and since being diagnosed with the thyroid goiter I have been consistently told not to worry its 99% non-cancerous, your young, no family history, healthy...no need to have surgery done at this time. I wasn't feeling better on the medication and more nodules had appeared on the left lobe at my last ultrasound; I was done dealing with the constant ultrasound and FNA's and fought for the removal...surprise 60% of my thyroid was covered in nodules and cyst; I'm just happy we got it early.

It was 1.1 cm so a very small section and the Endo is optimistic that they removed all of it with the surgery. She wants me to start the Thyroid Suppression keep me between .1-.4 and then in December have an ultrasound to see if any thyroid tissue was left, a PET scan and/or CT of the neck to check lymph nodes, and also do a blood test to check for any cancer markers? Does this sound right? She doesn't feel that I need the RAI and said it wouldn't be beneficial for me at this time...we're better off waiting to see what the results in Dec bring and then if needed we can do it.

Part of me says ok hold off wait and see while the other part is freaking out and says give me the RAI I don't care if its unnecessary.

 

[luvmarypoppins]

WDW Dancer - I am not so knowledgeable about all of this as Christine is, I am still learning.

You are so young too.. I feel like the thy. cancer old lady here. I was dx. when I turned 50 and it will be 3 years in jan. for me.

If you are having any kind of scan, make sure its no iodine, no contrast etc. very important because iodine scans mess up the rai (Micayla can share about that).

I had the pet scan before I had my surgery and I had a ct scan but that was for a bowel obstruction when I was on the lid. I was demanding they use no contrast. Good I wa throwing up anyway and couldnt drink it.

What is your synthroid dose? I know it takes about 8 weeks for your body to adjust, hence your dec. blood test.

I am sure the others will chime in. Wishing you all the best.

 

[kimmie]

I am so glad I found this thread!
My dr found a nodule on my thyroid in July at my physical. I never even noticed anything! Anyway, after trying to get an ultrasound and an ENT appointment, they did a fine needle biopsy and now I am having surgery to remove the left side of my thyroid next Tuesday. The ENT said it is Hurthle cell neoplasm and they cannot determine if its cancer or not.

I just do not understand!

Can you all help me understand and get through it please.
He did say that 80 percent are just fine, but I worry about the 20 percent and what will hapen after that. He talked about an endo and oncologist after with radioactive iodine? I am very confused.

Thanks!

 

[Christine]

It was 1.1 cm so a very small section and the Endo is optimistic that they removed all of it with the surgery. She wants me to start the Thyroid Suppression keep me between .1-.4 and then in December have an ultrasound to see if any thyroid tissue was left, a PET scan and/or CT of the neck to check lymph nodes, and also do a blood test to check for any cancer markers? Does this sound right? She doesn't feel that I need the RAI and said it wouldn't be beneficial for me at this time...we're better off waiting to see what the results in Dec bring and then if needed we can do it.

Part of me says ok hold off wait and see while the other part is freaking out and says give me the RAI I don't care if its unnecessary.

I was 31 when diagnosed and my tumor was just under 1 cm. I did have the RAI. I was told that even though the surgeon takes the whole gland, there are tiny remnants and cells that they just can't manage. This will not show up on an ultrasound but possible will on a PET. I would not let them do a CT with contrast because it will interfere with any possible future treatments.

Also, checking the bloodwork for thyroid cancer markers (thyroglobulin) is unreliable unless RAI is completed.

 

[Christine]

I am so glad I found this thread!
My dr found a nodule on my thyroid in July at my physical. I never even noticed anything! Anyway, after trying to get an ultrasound and an ENT appointment, they did a fine needle biopsy and now I am having surgery to remove the left side of my thyroid next Tuesday. The ENT said it is Hurthle cell neoplasm and they cannot determine if its cancer or not.

I just do not understand!

Can you all help me understand and get through it please.
He did say that 80 percent are just fine, but I worry about the 20 percent and what will hapen after that. He talked about an endo and oncologist after with radioactive iodine? I am very confused.

Thanks!

Hurthle cell is a type of thyroid cell. Sometimes these cells are benign and sometimes they are cancerous. My cousin had a HUGE follicular "neoplasm". They couldn't do a full pathology until he had surgery (the sample isn't enough). He turned out to have a benign neoplasm. This hopefully will be the same with you. Statistics are on your side!

 

[kimmie]

Thank You Christine!

I am hopeful that it will be benign.

It is just bothersome to know that you go throught the biopsy and they still can't give you any answers!

Does anyone know what the recovery time is for this kind of surgery? I am hoping I will be back on my feet in no time!

Thanks.

 

[Christine]

Thank You Christine!

I am hopeful that it will be benign.

It is just bothersome to know that you go throught the biopsy and they still can't give you any answers!

Does anyone know what the recovery time is for this kind of surgery? I am hoping I will be back on my feet in no time!

Thanks.

About a week, but you aren't bed ridden by any means.

I had a REALLY bad sore throat the day after surgery but it is a sore throat that improves very quickly. The surgeon told me this, I didn't believe him, but he was spot on.

I felt kind of tired the first week and my neck was sore but it is generally how I feel after any surgery (some breast surgeries I had made me feel the same way). I kind of remember them not wanting me to be driving or in a car for a week or two because they didn't want to chance that I'd have any sudden stops or starts that would put pressure on my neck. It wasn't forbidden or anything but just something that talked to me about.

 

[luvmarypoppins]

I am so glad I found this thread!
My dr found a nodule on my thyroid in July at my physical. I never even noticed anything! Anyway, after trying to get an ultrasound and an ENT appointment, they did a fine needle biopsy and now I am having surgery to remove the left side of my thyroid next Tuesday. The ENT said it is Hurthle cell neoplasm and they cannot determine if its cancer or not.

I just do not understand!

Can you all help me understand and get through it please.
He did say that 80 percent are just fine, but I worry about the 20 percent and what will hapen after that. He talked about an endo and oncologist after with radioactive iodine? I am very confused.

Thanks!

Wishing you all the best on Tuesday. I found a few pillows helped with the sleeping post op and sitting in the lazy boy helped with the neck issues too as opposed to just sitting on a couch.

 

[luvmarypoppins]

Opinions needed....so remember my endo said she would lower my synthroid even more if I felt jittery. But I told her I was fine.

Well lately I have not been able to sleep at all at night. Last night I think I slept about 2 hours max and the other nights hardly at all either. I think my heart is racing. I really cant tell. I dont know if its physical stuff or stress over trying to get dh a new vehicle because of the accident.

I am debating whether or not to have her lower it again as she just did it, I went from 200 to 175, so I dont know what the next amount lower is and will it be noticeable, then I will have to wait again for the 8 week blood test.


So what would you do??

 

[Christine]

Opinions needed....so remember my endo said she would lower my synthroid even more if I felt jittery. But I told her I was fine.

Well lately I have not been able to sleep at all at night. Last night I think I slept about 2 hours max and the other nights hardly at all either. I think my heart is racing. I really cant tell. I dont know if its physical stuff or stress over trying to get dh a new vehicle because of the accident.

I am debating whether or not to have her lower it again as she just did it, I went from 200 to 175, so I dont know what the next amount lower is and will it be noticeable, then I will have to wait again for the 8 week blood test.


So what would you do??

Were you jittery when you were on the 200 dosage? Is this jittery feeling new? If it has been going and is still going on with 175, I might trying lowering it. The next dosage is 150 but, as you know, there are ways to go down slower such as taking 175 for half the week and 150 half the week if you don't want to a full dosage decrease. Often, when I was feeling jittery and had heart palps, my endo would tell me totally STOP the meds for 3 days to see how I felt, then resume and a smaller dosage. For me, I take 137 for 5 days a week, half of 137 on Saturday and nothing on Sunday. This is gets me to my "sweet spot" with the TSH.

What was your latest TSH at your 8 week test?

 

[luvmarypoppins]

At 200 in July my tsh was 0.02 and when she reduced it to 175 my 8 week blood test in sept. was 0.01.

She had also mentioned before about a beta blocker? I dont know what it does, but I dont want to mask any other cardiac stuff that I have not been evaluated for (which runs in my family) versus a direct result of synthroid stuff etc.

 

[Christine]

At 200 in July my tsh was 0.02 and when she reduced it to 175 my 8 week blood test in sept. was 0.01.

She had also mentioned before about a beta blocker? I dont know what it does, but I dont want to mask any other cardiac stuff that I have not been evaluated for (which runs in my family) versus a direct result of synthroid stuff etc.

Now I remember!! Didn't you have some doubt as to whether it was .01 or .1?

Seems odd that the TSH would go lower.

Going on a beta blocker is standard procedure when very suppressed. Lots of people do it and I did it once because my heart was always racing. Of course mine was due to anemia to find out later. But at any rate, the beta blocker really does calm you down and slow down the heart rate. It wasn't that bad.

But I think you could still do some T4 medication adjusting before you get to that point.

 

[Tinker'n'Fun]

Hello everyone. I don't usually post but do read. I have Hashimoto's thryoiditis, had my total thyroid removed at pre-cancerous, and have been pretty normal ever since.

Lately I have been really blah, tired, weight, sweats, etc. They are upping my synthroid from .137 to .150. This is the first change is many years, so I am a bit out of the loop.

I know you all are very educated.

So my levels are off and DH will bring home the results (he had an appt today). Am I Hyper or Hypo, as I would like to look up the symptoms and try to fit the problems I have been having to the thyroid so I can then concentrate on the others. I have been having a really hard time and I thought it was just perimenopause.

Thanks everyone!

 

[mrsklamc]

Hello everyone. I don't usually post but do read. I have Hashimoto's thryoiditis, had my total thyroid removed at pre-cancerous, and have been pretty normal ever since.

Lately I have been really blah, tired, weight, sweats, etc. They are upping my synthroid from .137 to .150. This is the first change is many years, so I am a bit out of the loop.

I

Sorry with the sweats I would say hyper. Do you know how you've been sleeping? I don't sleep well when hyper and then I'm always tired. The rest of the symptoms could be either. Gaining weight seems counterintuitive, but some people feel driven to eat more when hyper.