• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Post thyroidectomy impact on CFS?


Senior Member
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?