The THYROID Thread

[disneyauntieX11]

Surgery is set for November 15. The surgeon told us it's the start of Follicular. He's telling us that they can tell it's the onset due to how the cells looked when they were tested? Is this a know fact? Everything I read says if the samples are good enough it can tell them quite a bit. The left side was also biopsied and he said there is nothing cancerous on that side. And he would like to leave that intact and only remove the RT side. Although he said they will none the less have a sample done on that and lymph nodes while removing the RT side so that he can be positive it does'nt all need to come out. We meet with him again this week and we still think the whole thing should come out regardless of family history. He said we would discuss it more this week after he looks into all the stuff we gave him on his brothers. In some ways I agree with the dr and if there isn't a problem with the Lft side it should'nt come out due to possible complications and such. On the other hand I think it's also a gamble due to such a high family history with this to leave any of it in. We have spoke to two drs now and they both are in agreement. The one here that we have been going to mainly is extremely good in this field and highly recommended. So it's a decision for us to go to a 3rd to push the issue or decide if they are both right and we should do it this way. Either way we now know something and that at least is good. Any advice would be wonderful.

http://www.thyroid.org/professionals/publications/guidelines.html

The Link above is the American Thyroid Associations Guidelines for the Treatment of Thyroid Nodules. Page 10 recommends Total Thyroidectomy.

On a personal note I has a supicisous biopsy fo Papillary Carcinoma. The Endo Suggested only half the Thyroid because he thought I might be mad at him if they took out the whole thyroid. My thought is that I would be more made if I had to go back a 2nd time. The Surgeon who had done Many Thyroidectomies says that with Papillary that there would be a 60% Chance it would be on the other side. My diagnosis turned out to be Folicular Variant of Papillary Carcinoma which means the outside of the tumor was Folicular and the inside was Papillary. Folicular is a little more aggressive but treatable. My tumor was only 1.2 cm but it was not encapsulated so I needed to have the Radio Active Iodine Treatment to ablate the rest.

They kept telling me that I had only an 20% chance of the suspicious biopsy being cancer. I hit the jackpot. but I am O.K. now and have been disease free since 2000

You do want surgeon that does allot of thyroidectomies because of vocal cords and parathyroids (these are gland that regulate your Calcium).

Gail

 

[frdeb1999]

Thanks for the advice. I already told my husband that we'll be calling tommorow and we're in agreement that if he does'nt want to do a total then we'll be looking for a new surgeon. He comes very recommended and we have researched him. Thing is I think we think he's just not being as aggressive as should be given the family history for one and type for 2. I have been already researching looking for a 3rd opinion just in case. We are completely sure that he can do the surgery and well due to everything we've read and also talked to past patients. Thing is we're not willing to go through this again because he wants to be conservative. And in our case I think it needs to be an aggressive approach. Will let you know.

 

[frdeb1999]

Well after much deliberation we have switched surgeons. We found a Endo and we both are very happy with her. Very friendly and highly recommended. She immediately said not to just have the one half out regardless of the finding since the strong family history is there and abnormal biopsy results. We presented this to the original surgeon and he still refused to do a total until after testing the other side in the operating room. He said it made no sense and then got quite upset that we were "guestioning" his abilities and such. So we politely told him to cancel everything and went with another surgeon the Endo had recommended. We went to the app with the new surgeon who had already been briefed by the Endo who said there was no question that it all had to come out. So we are now in the process of getting another date set. Which will hopefully be before christmas. They said it would hopefully be within the month. Will deffinately be happy when it's out and taken care of! Thank you again for all the advice!

 

[newarknut]

Hey, I just stumbled upon this thread. I was diagnosed with papillary cancer last year and had a total thyroidectomy. It was only on one side but the whole thing was removed. I had a friend who went through the same thing, only, they took just half out. They had to operate again to remove the other half after test results came back. That would be a bummer. I had the surgery on 9/1/06 and was back in business in a couple days. I took the radioactive iodine treatment in December of '06. The biggest hassle with the RI is the diet that precedes it. Also, if you can take the Thyrogen shots, do it. It will save you from going off your sythroid and being hypo for a while. If your insurance will cover the cost, I highly recommend the shots.

You will be fine. I'm glad you did your research and discovered the need to take out the whole thing the first time! Smart move!!!

Make sure they put you on Synthroid and not the generic version. I guess the generic is not as reliable (dosage wise) as the name brand.

Sincerely,

 

[claudia]

Well after much deliberation we have switched surgeons. We found a Endo and we both are very happy with her. Very friendly and highly recommended. She immediately said not to just have the one half out regardless of the finding since the strong family history is there and abnormal biopsy results. We presented this to the original surgeon and he still refused to do a total until after testing the other side in the operating room. He said it made no sense and then got quite upset that we were "guestioning" his abilities and such. So we politely told him to cancel everything and went with another surgeon the Endo had recommended. We went to the app with the new surgeon who had already been briefed by the Endo who said there was no question that it all had to come out. So we are now in the process of getting another date set. Which will hopefully be before christmas. They said it would hopefully be within the month. Will deffinately be happy when it's out and taken care of! Thank you again for all the advice!

I applaud you for advocating for your DH. It can be disastrous when a physician lets his ego get in the way of discussing a patients concerns and questions. I am also glad that you found an endo that you like as she will be playing a very big part in your husbands life from now on. Best wishes to your DH for a speedy recovery. Please keep us posted.

 

[frdeb1999]

Thank you Claudia. He was'nt the happiest person while I was insisting on alot of this. As I said earlier he is the type that feels that dr's would'nt do something unless it was the best option. He even at one point insinuated that I was doing this in a effort to save money! I did'nt get upset with him though. I know he's going through alot right now and his emotions are running quite high. And after his Endo told him basically everything I had said and almost in the same order he got teary and told me he was so sorry for saying anything to me. I just reninforced that I am in this with him and that I only want the best. And if that means questioning, and insisting then that is what I'm going to do. We have been married 20 yrs and I don't plan on letting him down now!

 

[frdeb1999]

Tommorow is the day for surgery. Due to a last min cancellation he will be able to still have surgery on the day he was origanally scheduled. With the new surgeon which makes us both very happy. He has had a rough weekend though as we found out that his dad has colon cancer and will need to undergo surgery for it. Seems like it all happens to you at one time. Please keep us in your thoughts and prayers and I will update as soon as I can.

 

[Dis1978]

I have been on PTU for about 7 years. I take thyroxine with it on a block and replace therapy. My doc wants me to come off it and have the radioactive treatment. I am not keen to have this as I will have to be away from the kids for a couple of weeks. Impossible at present with kids with disablities. Don't know how I am ever going to be able to go for the treatment. Has anyone else been on PTU as long as this? Anyone know of any problems of long term use?
The endo wants me to come off the treatment to see if my thyroid problem has resolved! Last time I tried this I went so hyper I could hardly move due to the palpitations.
Is so annoying when the docs say the levels are fine. My levels are supposedly normal so how come I am exhausted, have bad leg pain, freezing cold and feel so down.


Also I had to take this treatment whilst pregnant and I worry about the effect on my youngest child.

 

[klmall]

Just wanted to post about DH who had his thryoid removed successfully yesterday. He had been putting it off for at least two years and his endo and 2 surgeons told him he was heading for potentially serious difficulties unless he set a time which he finally did. Everything went very well considering the thryroid was enormous, pressing on his windpipe, starting to wrap around his vocal cords and one one side, extended back to his spine. All the prior biopsies were negative so DH really wanted to avoid surgery. Now he readily admits how good it feels to have the mass gone and to be able to swallow more easily.

We were so lucky to have an excellent hospital and its staff who made the whole experience very positive for DH who has had only had one quick in/out procedure 20+ years ago. To say he was a basket case would be an understatement! But they had him sitting up, eating and talking 1 hour after surgery. He had to spend the night in the Recovery Room because they wanted to monitor his mild sleep apnea but he got one-on-one attention which really eased my worries. His drains came out this morning and the big Queen Anne bandage comes off tomorrow. He came home this afternoon and continues to amaze me, eating, drinking and talking so easily.

His biopsies will come back Monday, he'll continue his synthroid forever and we hope to close the door on something that he avoided so long (and scared me more than I can ever tell him!). After he spends 10 days at home he should be fine!

I would highly recommend his surgeon and the hospital (Georgetown University, DC) to anyone who needs this surgery. GUH consistently ranks in the top hospitals in the country and we experienced that firsthand. His surgeon has a special, down to earth, calming attitude and I think that was what convinced him to do what he had to do.

Good luck and blessings on all of you with thryoid problems, especially those trying to figure out what to do.

 

[frdeb1999]

Sounds like you had a good outcome klmall. My husband had his surgery today and everything went great. He too was in up and around only about 2 hrs post op. He won't be released til tommorow and it's about driving him crazy! He was harrassing the nurses when I left telling them how hungry he was and no Jello! Everything looked good with the frozen sections and like you we won't know 100% til Monday. But we're hoping for the best. We know it's not the end. But just very happy to have it out. Good luck to you! And you and your family will be in my thoughts and prayers.

 

[klmall]

frdeb1999 - Isn't it wonderful when you see them fussing and wanting to get back to normal? Yes, his surgeon thought things looked good but as you know we want the proof before we can really let our guard down. On the humorous side, DS at college asked for a picture of DH with his collar on, so I obliged and sent one - Of course, DH hammed it up a bit pretending to be in great pain for his photo op.

And the best of luck to you and yours also. I'll add your DH to my special prayers of thanks tonight and let us know next week.

But you must be so drained too! Now go get some rest!!!

Sounds like you had a good outcome klmall. My husband had his surgery today and everything went great. He too was in up and around only about 2 hrs post op. He won't be released til tommorow and it's about driving him crazy! He was harrassing the nurses when I left telling them how hungry he was and no Jello! Everything looked good with the frozen sections and like you we won't know 100% til Monday. But we're hoping for the best. We know it's not the end. But just very happy to have it out. Good luck to you! And you and your family will be in my thoughts and prayers.

 

[frdeb1999]

You are deffinately right. It is absolutely wonderful to see them once again being they're old pain selves! And yes we won't be happy either til we get everything back next week. But am so happy and relieved to just have that portion over with. I about fell into bed last night when I finially wound down enough to get there. Thanks for your thoughts and prayers...you'll be in ours also. And keep me posted! We can compare notes!

 

[Belle62442]

I got a call from the Dr. today saying that I had an abnormal thyroid test. He left me instructions to call his nurse for more info. Unfortunately the nurse never called me back so I have to wait until Mon. to get any answers. Based on the symptoms I think I have hypo, so it looks like I might be a lifer on this thread! Is hypothyroidism common in a 22 year old?

 

[frdeb1999]

Welcome Belle62442. I wish I could give you some info but I'm quite new to this area myself. I know exactly how you feel though with the dr thing. They did the same thing to us and had us waiting also. This thread and those on it are wonderful. Hope all goes well for you!

 

[frdeb1999]

UPDATE....Just wanted to let you all know that my husbands results came back after the whole thyroid was tested and it was all benign! They tested it not once...but twice to make completely sure. I can't even begin to tell you how relieved and happy we were to hear this. We questioned the biopsy results and they told us they were nothing but abnormal cells to begin with and not even enough to count. But since he had such large Goiters they would have had to remove them anyhow with surgery. Makes you wonder. But we had it retested simply because we did'nt believe the frozen section test. We paid for the 2nd pathology lab out of pocket because we were so afraid of it not being true. Needless to say it was a very Happy Thanksgiving. He went on thyroid meds Friday and so far seems to be doing very well. We shall see. And the stitches come out tommorow. Hopefully all will continue to go well. None the less with his family history he will have no choice but to keep watching and making sure regardless. Thank you for all your support through this!

 

[GoHerd1028]

This is an Interesting thread.

At the age of 28 I was diagnoxed with Medullary Thyroid carcinoma the rarest form of the disease. After the diagnosis I had genetic testing done that showed I have Multiple Endrocrine Neoplasia (MEN Type 2A) With this syndrome I can develop tumors on other endocrine glands over the course of my life. As it so happens my labs recently came back out of range for the Parathyroid hormones. I blew it off but the doctor took it more seriously than I did. It seems that it is possible I might have a tumor now on the parathyroid gland or on the adrenal gland causing the parathyroid homrones to be elevated. I feel like I have walked this road before and it is not an easy one. My original cancer was found by accident. We were testing some new ultrasound equipment at work and I was the test patient for the neck region...low and behold...there it was and I was not having any sypmtoms. See God does work in mysterious ways. I am glad that I have found this thread and hope that maybe I might be able to be of help to someone else. Feel free to e-mail me GoHerd1028@aol.com

Steve

 

[traceblue]

I have been having thyroid problems since i was 8 years old..i am now 22..

When I was 8, i had a tumor (benign) and half of my thyroid removed..When i was 15, a few more tumors grew back and they removed them and the other half of my thyroid--They then put me on Synthroid. When I was 16, I had scar tissue revision..

Since my surgeries, especially the last 2, my thyroid levels go crazy--Every 6 months or so I have to get my levels changed..i go from being hypo to hyper all of the time.. After this semester, I will be getting some more tests done to see if there are any more tumors in there..i have been having a hard time holding my neck up again and my necks been really sore and ive been having difficulty swallowing...

Its nice to see this thread!

I thought I was going crazy,, I just could not understand. 15 Years ago, I had the first tumor at my thyroid taken out it was benign, 9 years ago I had the other side taken out it was benign. Over the past 1 or so I have had trouble swallowing, my neck is sore when I turn it to far to look at something and when I sleep I have huge amount of pressure in my neck and it is hard to get comfortable.. I figured the doctor would tell me i was nuts that there was nothing there and that it could not grow back.... I guess I was wrong and it does happen.. I will make an appointment...

Your posting has really made me feel like I have not lost it and this is realy
Thanks

Trace

 

[nicdanh]

Hi Thyroid friends! I was diagnosed 9 years ago with Hypothyroid with graves diesease. I found out when i was trying to get pregnant with my first child and could not get pregnant. I now have 3 beautiful children and still suffer from the diesease. My endo doctor wants to kill my thyroid, but I have mixed feelings about it.

Michelle

 

[SammieG]

does anyone currently have or have you had Pre-tibial myxdema?

I have been hyper (now controlled) with Thyroid eye disease and PTM for 8 years
would love to know if anyone has had any success with any treatments for the PTM

 

[Aunt Flancy]

This is an Interesting thread.

At the age of 28 I was diagnoxed with Medullary Thyroid carcinoma the rarest form of the disease. After the diagnosis I had genetic testing done that showed I have Multiple Endrocrine Neoplasia (MEN Type 2A) With this syndrome I can develop tumors on other endocrine glands over the course of my life. As it so happens my labs recently came back out of range for the Parathyroid hormones. I blew it off but the doctor took it more seriously than I did. It seems that it is possible I might have a tumor now on the parathyroid gland or on the adrenal gland causing the parathyroid homrones to be elevated. I feel like I have walked this road before and it is not an easy one. My original cancer was found by accident. We were testing some new ultrasound equipment at work and I was the test patient for the neck region...low and behold...there it was and I was not having any sypmtoms. See God does work in mysterious ways. I am glad that I have found this thread and hope that maybe I might be able to be of help to someone else. Feel free to e-mail me GoHerd1028@aol.com

Steve

I am a meddie too. I was lucky also and my cancer was found early. I had huge nodules on the right side of my thyroid that were growing rapidly, but all of my thyroid tests and biopsies were normal. They decided to remove the half of my thyroid with the nodules, but during surgery the Dr. decided the other side looked "funny" so he took the whole thing out. They called me five days later and told me I had cancer. I went back four weeks later and had a left modified radical neck dissection. It has been almost two years now and all of my blood work is good. I still go to the oncologist every three months and the enodcrinologist about every two months. I have problems getting my TSH regulated (I take 200mcg Synthroid and 10mcg Cytomel right now) and the endocrinologist has found other problems that I take all kinds of medicine for, but I am so thankful it was found early. I am a single mom of two teenage boys and can't imagine leaving them!