Total thyroidectomy, dual isotope scan told to stop levothyroxine whaaat?

[coco_glitter]

Hi everyone. I haven't posted here in a while. Usually I consider myself a bit of a thyroid veteran after all my experience with it - total thyroidectomy in 2013.

However, I am a bit stumped about this one. I had 1 parathyroid removed in 2013 along with my thyroid. I now have hyperparathyroidism again and new lumps in my neck. I have had an ultrasound and they could not confirm if it was one of my parathyroid glands that was enlarged as they look like lymph nodes apparently in ultrasounds.

So the doctor has scheduled a dual isotope sestamibi scan next month. The only problem is I have been told I have to stop my levothyroxine T4 for 3 weeks beforehand. Apparently you can stop T3 just a week beforehand, but i have found it hard sourcing T3 recently (was buying it online from Greece).

Anyone else with total thyroidectomy stopped their levothyroxine for any length of time? I was always told this was very dangerous and you could die after two weeks of no thyroid hormone replacement?

My TSH was at 60 once and I felt AWFUL, actual zombie!! I dread to think how it will be with 3 weeks off levo HELP!!!!!

[Hidden]

I have no thyroid and had to stop for only two days ( I felt bad) it's stupid information that your have been given there must be another way forward. Leaving off for this long could knock you back months and months.

Did you surgeon explain after your operation about your parathyroids and where he had place them?

[coco_glitter in reply to Hidden]

Thanks Bunny. The surgeon only removed one and left the other 3 intact.

Exactly, I totally agree. I think it's very dangerous to tell thyroidectomy patients to stop there meds. I think 4 weeks off levothyroxine would put me into an instant coma. I have asked them to do another scan for me.