# Anyone had their Thyroid grow back in a different place?



## NatalieCook2013 (Jul 12, 2013)

I had surgery about 15years ago, total thyroid removal for multi nodular goitre. 
I've been on oroxine ever since. I started on 100mcg and stayed that way until I went on to a natural compound version when it changed constantly. I then went back to oroxine and stabilized, until about 12months ago. Since then my medication has been reduced to the point I'm off it completely under the assumption it has grown back. I had a ultrasound today in preparation for going to see a specialist. Now I've had neck pain but never thought it related to my thyroid growing back. The ultrasound tech was quite intrigued because I have thyroid gland tissue not at the base of my neck but over my voice box and up along and just under my jaw line. There is swelling there and I've had pain for a good 18months there but I always put it down to a fat roll and delayed pain from my shoulders and back.

Has anyone else who had their thyroid gland grow back had it grow back in slightly a different spot?


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## Octavia (Aug 1, 2011)

No, but this is fascinating...


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## Velcro (Jul 26, 2013)

Wow...that is fascinating. I am real curious to see what the specialist has to say.


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## Andros (Aug 26, 2009)

NatalieCook2013 said:


> I had surgery about 15years ago, total thyroid removal for multi nodular goitre.
> I've been on oroxine ever since. I started on 100mcg and stayed that way until I went on to a natural compound version when it changed constantly. I then went back to oroxine and stabilized, until about 12months ago. Since then my medication has been reduced to the point I'm off it completely under the assumption it has grown back. I had a ultrasound today in preparation for going to see a specialist. Now I've had neck pain but never thought it related to my thyroid growing back. The ultrasound tech was quite intrigued because I have thyroid gland tissue not at the base of my neck but over my voice box and up along and just under my jaw line. There is swelling there and I've had pain for a good 18months there but I always put it down to a fat roll and delayed pain from my shoulders and back.
> 
> Has anyone else who had their thyroid gland grow back had it grow back in slightly a different spot?


Actually, thyroid tissue can grow in many bodily organs. If we could only grow limbs like the thyroid tissue is capable of replicating. LHM!!

Any.....................this is called ectopic thyroid tissue. If you Google it; you will learn more than you probably want to know.

It may be a good idea to have it removed and back that up with some RAI treatment.

I hate this for you. Let us know what your doc recommends.


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## NatalieCook2013 (Jul 12, 2013)

Thank you for the information Andros I'll look it up. The US tech was fascinated too and I will definitely keep you all informed.


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## NatalieCook2013 (Jul 12, 2013)

So I visited the GP today to get the official results of the US.

There is residual tissue on the right side and I have a nodule measuring approx. 1/3 inch inside the tissue. It showed thyroiditis as well due probably to over replacement of thyroxine. I now have a referral to ENT surgeon for biopsy of the nodule. I got a quick look at my blood results but they were sealed with the referral so I don't have details. I know T3 was over and my white cell count was up..but everything else looked normal.


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## angel711baby66 (May 7, 2013)

Wow! I would hate this to happen to me in 15+ years! Please keep us updated!


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## StormFinch (Nov 16, 2012)

Natalie, your thyroiditis being caused by over replacement is doubtful. Thyroxine is given to shrink goiter and in the right amounts it prevents tissue growth. Thyroiditis can be caused by antibodies, viruses, bacteria, radiation and some drugs. http://www.thyroid.org/what-is-thyroiditis/


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## NatalieCook2013 (Jul 12, 2013)

StormFinch said:


> Natalie, your thyroiditis being caused by over replacement is doubtful. Thyroxine is given to shrink goiter and in the right amounts it prevents tissue growth. Thyroiditis can be caused by antibodies, viruses, bacteria, radiation and some drugs. http://www.thyroid.org/what-is-thyroiditis/


OH how confusing!!!! Thank you for the website I'll read it and get informed. I'm embarrassed about how much I do not know. I just thought feeling unwell was my lot in life.


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## StormFinch (Nov 16, 2012)

NatalieCook2013 said:


> OH how confusing!!!! Thank you for the website I'll read it and get informed. I'm embarrassed about how much I do not know. I just thought feeling unwell was my lot in life.


Unfortunately I think a lot of us have gone though that feeling at some point or another. With knowledge and the correct doctor though things do get better.

As for the ATA website, the info on thyroiditis is correct, but some of what the association believes isn't what thyroid patients have found to be true. Make sure you poll several different sites to compare info, and feel free to ask questions if you're not sure about something.


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## NatalieCook2013 (Jul 12, 2013)

5days out from my appointment with the surgeon and I'm experiencing dejavu. Scared he'll tell me I have to have surgery and/or radiation and scared he'll tell me that I don't need any treatment I'll continue to feel like crap. Days when I'm about 80% and can function normally and then other days when I feel so sick I can only just get out of bed. UGH...hate the wait.


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## NatalieCook2013 (Jul 12, 2013)

So to update. I've met the surgeon and he sent me for CT Scan. Showed that I have what thyroid like tissue midline measuring 4.9 cm x 3.5 x 2.1cm and lobulated node measuring 1cm. Blood work came back FBC is normal, so white cell count has gone down. FSH 0.2 which is supressed, FT3 is consistently above 6 and latest reading is 6.3 + 0.1 since the last blood test 7 weeks ago and 7weeks off they Oroxine. My surgeon participates in fee Thyroid clinics with a group of ENT surgeons and Endocrinologists. Initially he thought of sending me to the endocrinologist before the surgery but now I'll be going to the clinic with him so that we can consult with the endo on what meds to take pre-op so FT3 goes back to normal. Surgery should happen end of October or beginning of November depends on FT3 and FSH going back to normal. I just wish I could get rid of the pain. I have good days and bad days, but the bad days are getting more frequent and more intense. HATE IT!! I've gone from being scared to have surgery again to wishing it would happen sooner than later. OH and JOY I had an allergic reaction the CT contrast..so if I have another one I have to dose up on antihistamine before hand.


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## NatalieCook2013 (Jul 12, 2013)

So what a drawn on saga this has been. My surgeon ended up with 6 emergency cancer patients so my case discussion got pushed back. Finally he got in touch with the Endocrinologist he conducts Thyroid Clinic weekly with and she decided she wanted to see me herself (no issue from me it's a free clinic) However, she was away on the day of my appointment due to personal reasons and I saw her offsider. She had no notes for me as a new patient and without the benefit of a brief history from the surgeon did a complete history on me and examination. She started talking about options to surgery, such as radiation. I explained to her that is not an option I would pursue. The idea of radiation with my family history is not something I would ever consider it would ONLY be acceptable to me as a last resort. I explained I was only there for advice on whether I should be taking meds to resolve the overactivity of the re-grown thyroid tissue before surgery or a beta blocker at the time of surgery. Since my last blood test was early September she ordered another one and included the antibody test to see if I have Graves. She promised to show my history, scans and blood test results to the other endocrinologist and call me back. Today was the day she called me back, and is still over active so she told me she had booked me in for iodine uptake scan, ultrasound and biopsy to check for nodules. All of which the surgeon had mentioned but decided against doing as a waste of time and effort since he believed he would get clean and precise margins based on the CT scan. I asked why the test and she told me it was in preparation for the radiation treatment. Even with an over active thyroid tissue I never had a heart palpitation, but she gave me one. I explained again I did not want (3months minimum of) Radiation, that I would only consider that option if they'd found cancer and even then it would be if there was NO OTHER option available. When I had my original total thyroidectomy 17years ago, it was painful and uncomfortable and I felt sick...but I was feeling well enough to go back to work after 6weeks and back in the gym within 8weeks. I do not want to be having radiation for 3months, when hopefully surgery will resolve the issue in 6weeks and I won't have to worry about it again. AM I wrong? She's made me feel foolish for preferring the surgery option. Should I be considering the radiation? In all that I forgot and she never offered me the results of the antibody test for Graves. Could that be why she was pushing the radiation option? HELP ME!!! At this point I go back to the thyroid clinic on Tuesday where they can talk to the surgeon about the beta blocker before surgery and fix a date for it. Have I done the wrong thing?


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## Swimmer (Sep 12, 2013)

Hi Natalie, I just want to welcome you here. There are some wonderful people here who are experienced and they will be able to comfort you and help you. Hang in there. You are in the right place. You also might want to repost this in another place and call it - "radiation or surgery" What's your preference & advice?

Take care & hugs.


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## joplin1975 (Jul 21, 2011)

No, I don't think you are wrong. I had RAI and, at least presently, I do view it as a really a big deal...but that said, it's not like I was eager to ingest radioactive material. I would be opting for surgery, personally.


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## Andros (Aug 26, 2009)

NatalieCook2013 said:


> I had surgery about 15years ago, total thyroid removal for multi nodular goitre.
> I've been on oroxine ever since. I started on 100mcg and stayed that way until I went on to a natural compound version when it changed constantly. I then went back to oroxine and stabilized, until about 12months ago. Since then my medication has been reduced to the point I'm off it completely under the assumption it has grown back. I had a ultrasound today in preparation for going to see a specialist. Now I've had neck pain but never thought it related to my thyroid growing back. The ultrasound tech was quite intrigued because I have thyroid gland tissue not at the base of my neck but over my voice box and up along and just under my jaw line. There is swelling there and I've had pain for a good 18months there but I always put it down to a fat roll and delayed pain from my shoulders and back.
> 
> Has anyone else who had their thyroid gland grow back had it grow back in slightly a different spot?


Thyroid tissue can and does behave very much like endometriosis. It can travel and attach it's self to other bodily organs such as the gall bladder, ovaries, liver, lungs.......................you name it.

It may be in your best interest to have a whole body uptake scan.

This is called ectopic thyroid tissue. It is not uncommon to find it at the base of the tongue, jawline and even up into the ear canal.

And no, I have not had this experience; gratefully.

http://www.hormones.gr/739/article/article.html


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