[skleespi]

#1019321

Good day to everyone. ” title=”Razz” />

I had a thyroidectomy four years ago, and continue to have issues. I was doing ok until my total hysterectomy a year after my thyroid was removed. Since then I have been having increased thyroid symptoms. I am either hyper or hypo thyroid, a continuous rollercoaster. I have had scans performed and they do not detect any change in my parathyroid size or shape so it does not appear thyroid tissue is growing back at that site. My current lab work shows my Graves’ antibodies are at 400 and my TSH is again at .003. The t-3 and t-4 were not too bad but they were off. I have been having the hair loss, joint pain, muscle cramping, exaustion, can’t sleep, racing heart, etc. I also for the last 3 years have been suffering off and on with "bruising/bleeding" under the skin when I bump myself. Also my skin tissue tears very easily. This skin issue seems to coincide with the periods of high antibodies.

After having been through a battery of tests, I know I am cancer free, do not have diabetes, may have arthritis but not lupis. I do not have any blood disorders, etc. I do continue to suffer with an enlarged spleen. This condition occurred during my initial bout with GD and becomes larger and smaller as the antibody numbers increase and decrease.

Has anyone else experienced these problems and have you found answers? My Dr. has three other patients with GD experiencing similar problems and he has been contacting other endo’s with no real results. He said thyroid tissue may be growing in another area of the body, mine possibly in the spleen, this would explain the continuous issue with the spleen. I have heard of weird things growing in peoples bodies on the health channel but is the thyroid tissue theory real?

I live in Glendale, Arizona and would love to have names of endo’s that others have had good luck with. I have never found one that specializes in thyroid issues they are usually more diabetes related.

Thank you for your time and assistance,
Roxanne

[bradybunch6x1]

#1070847

Hi Roxanne,
I checked and there is a thyroidologist in Arizone, check the thyroidologist.com site, and even if you can’t see that doc, maybe he can consult with your current doctor.
Valarie

[mamabear]

#1070848

Roxanne,
Welcome! I don’t have an answer to your question but wanted to say hello and you have come to the right place.

[Ski]

#1070849

I actually have heard of thyroid tissue re-growing elsewhere in the body ~ obviously it’s VERY rare, but it can occur. I think there’s a way you can do an uptake/scan, but I suppose you’d need to target the scan somehow toward the area where the tissue is suspected, and I’m not sure how they’d go about finding the tissue if it’s somewhere other than what they expect. The fact that your doctor is contacting others for help is a good sign ~ more information is ALWAYS better, and I love seeing a doctor that understands they do not necessarily know all there is to know about everything.

PLEASE let us know how this ends up for you, I know it’s no fun to go through, but the information we all get from it is so important!

[kaicee118]

#1070850

Roxanne – I am also interested in hearing the outcome of your tests. As someone who just had a thyroidectomy, and to whom weird medical things have been known to happen, I have a high level of curiosity about this. I hope all turns out well for you.

BTW, was it a total thyroidectomy you had four years ago?

Thanks,

Karen

[LaurelM]

#1070851

A friend of mine had thyroid cancer. For five years following her thyroidectomy and RAI, she had full body scans done to detect if there was any residual thyroid tissue ANYWHERE in her body – not just her neck. Apparently, some people do have thyroid tissue in other areas of their bodies. She had to do the NO iodine diet prior to the scans so that the test would really ‘light up’ any lurking thyroid tissue. Fortunately, her scans all came up clear but if they hadn’t she would have had to do RAI again to kill off the remaining tissue.

[skleespi]

#1070852

kaicee118 wrote:Roxanne – I am also interested in hearing the outcome of your tests. As someone who just had a thyroidectomy, and to whom weird medical things have been known to happen, I have a high level of curiosity about this. I hope all turns out well for you.

BTW, was it a total thyroidectomy you had four years ago?

Thanks,

Karen

Hi Karen,

Yes, I did have a total thyroidectomy. I am glad I had that done; they found a small mass in the tissue about the size of a pea. They did the testing on it and said it was cancerous, but I was in luck it was encapsulated. I had a year of follow-up looking for cancer but none has ever been found. I also end up having lots of weird things occur in my body. My Dr. says I am a work in progress.

Had to have Gallbladder removed, total Hysterectomy, I have had 2 radio frequency ablations on my heart to fix an electrical problem, I have lumbar facet disease and degenerative disk disease and have had nerves burned in my back and neck to get out of pain. I am tired of all the things and had hoped after the thyroid removal that things would get better.

LOL, I guess it is just part of growing old.

Thanks for the post and I wish you the best of health. I will post again when I learn anything new.

Roxanne

[skleespi]

#1070853

LaurelM wrote:A friend of mine had thyroid cancer. For five years following her thyroidectomy and RAI, she had full body scans done to detect if there was any residual thyroid tissue ANYWHERE in her body – not just her neck. Apparently, some people do have thyroid tissue in other areas of their bodies. She had to do the NO iodine diet prior to the scans so that the test would really ‘light up’ any lurking thyroid tissue. Fortunately, her scans all came up clear but if they hadn’t she would have had to do RAI again to kill off the remaining tissue.

Hi Laurel,
Out of curiosity did your friend have PET scans done? I am curious what type of scans were performed. My insurance is pretty picky about the test’s that can be preformed.

Thanks,
Roxanne

[skleespi]

#1070854

Thank you everyone for your replies. I joined the BB when I was first diagnosed all those years ago and am glad to be back again. This is a great community and I am so grateful for all your ideas and thoughts.

I will updateon the BB when my Dr. Figures out what our next step is.

Best wishes to you all,
Roxanne.

[LaurelM]

#1070855

Hi Roxanne,

I am sorry that I can’t say for sure what type of scan she had. I had assumed it was similar to the RAI Uptake due to the no iodine diet. She needed to clear all of the dietary iodine out of her system so that when she had the scan done any remaining thyroid tissue would suck up the radioactive iodine and therefore would show if she had any active thyroid tissue.

Sorry it took a couple of days for an answer. I am a healthy lurker on the board. I have been in remission for a couple of years now and only scan the posts every few days as time allows.

I hope that was somewhat helpful.

Laurel

[Author]

Posts