catly
Senior Member
- Messages
- 284
- Location
- outside of NYC
Hi I'm new to this site, so if I'm posting this in the wrong place, please let me know.
I was just "officially" diagnosed with CFS in May 2013 and am on Valcyte prescribed by a CFS specialist due to high HHV-6 antibodies. I had an sudden onset of symptoms 2/2012 so my CFS dr. was hopeful I would have a good response to Valcyte. I was starting to feel better this summer when I found out I had a "suspicious" nodule on my thyroid and as a result, I had a partial thyroidectomy on 8/13/2013 due to a nodule being "suspicious". The final pathology showed papillary cancer-Stage 1. My endocrinologist now wants me to have the other side out and possibly undergo RAI. I am scheduled for a completion thyroidectomy on 10/1/2013.
As you can imagine I am really scared and on the fence about this. I made it through the first surgery OK but am concerned about the longer term impact of not having a thyroid on my CFS--dealing with getting thyroid meds right-suppressing TSH etc. So I'm trying to do some research on CFS/ME patient experience with total thyroidectomy. I found one thread on this site from 2012, but no real answers to my question.
Anyone out there who has either had a thyroidectomy or know of others who have and what were the longer term impact on ones CFS?
Thanks!!!
I
I was just "officially" diagnosed with CFS in May 2013 and am on Valcyte prescribed by a CFS specialist due to high HHV-6 antibodies. I had an sudden onset of symptoms 2/2012 so my CFS dr. was hopeful I would have a good response to Valcyte. I was starting to feel better this summer when I found out I had a "suspicious" nodule on my thyroid and as a result, I had a partial thyroidectomy on 8/13/2013 due to a nodule being "suspicious". The final pathology showed papillary cancer-Stage 1. My endocrinologist now wants me to have the other side out and possibly undergo RAI. I am scheduled for a completion thyroidectomy on 10/1/2013.
As you can imagine I am really scared and on the fence about this. I made it through the first surgery OK but am concerned about the longer term impact of not having a thyroid on my CFS--dealing with getting thyroid meds right-suppressing TSH etc. So I'm trying to do some research on CFS/ME patient experience with total thyroidectomy. I found one thread on this site from 2012, but no real answers to my question.
Anyone out there who has either had a thyroidectomy or know of others who have and what were the longer term impact on ones CFS?
Thanks!!!
I