I am scheduled for a total thyroidectomy on 1/10/13. About 5 months ago, I discovered that I have a multinodular goiter after having a MRI on my neck for bulging discs. I went to an endocrinologist and he ran blood work (normal TSH and Free T3 and Free T4).
He then sent me for an ultrasound which revealed that what was thought to be many small nodules on the left lobe is actually a solid 3.9cm mass encompassing nearly all of the left lobe. On the right is a solid 2cm nodule and a smaller 5mm one. He then sent me for a biopsy which came back as benign for the left and indeterminate for the 2cm one on the right due to "scattered follicular cells with mild atypia and Hurthle cell features." I was told that it not a neoplasm, however. My endo was going to have me wait 3 months and redo the biopsy and possibly get the Afirma Veracyte test done.
However, I asked him to refer me to a surgeon for a consultation because the pressure in my neck is getting uncomfortable and I have problems breathing when I lay down on my back. (I stopped sleeping on my back 3 years ago when I had a couple of episodes of waking up feeling like I was being choked). The surgeon ran a scope up my nose so he could see down my throat. He said that my thyroid is compressing my trachea and is obstructing 35% of the opening of my airway. He recommended total thyroidectomy but said it is not urgent at this time and that I can wait until it gets bigger and the symptoms get worse. He left the decision up to me. I asked him to schedule the surgery.
But I am having second thoughts and worry if I am making the right decision and worry about the after effects of not having a thyroid. What would you do in this situation? Anyone who had a total thyroidectomy that can tell me what lies ahead for me if I go through with it?
I have not had a TT but I can tell you after removal of the thyroid, that you will go through many Hypothyroid symptoms unil you get to a level where you are symptom free, and finding the right MD that will treat you based on the actual hormone levels of Free T3 and Free T4, your thyroid produces t4 hormone and your body converts this to T3, which is the hormone your body needs to function, you will be taking replacement hormone medication for the rest of your life, but even without a total removal, you most likely wouyld have thyroid level disfunction anyway. But finding the right MD is half the battle, most just treat by TSH and not the hormone levels mentioned above. TSH is just a hormone sent by the pituitary in the brain, to the thyroid telling it to produce more T4 when the T3 is low/ You can be "In Range" with TSH and the MD will say "OK You are normal" but in reality you are still having Hypo symptoms and still sick. The other issue is the fact that you have to make sure this surgeon is experienced at thyroid removal, and not just a throat specialist, located right behind the thyroid are located small parathyroid glands, they have nothing to do with the thyroid, but without an experienced thyroid surgeon, they can be removed or damaged, and this causes more problems. I know you need to have it removed, since it is obstucting your airway and the issue of the state of your thyroid you should have it done, but most MD's don't inform you of the issues you go through afterwards, you can look up Hypothyroid Symptoms and read about it. Just make sure you have a good surgeon with experience. Best Wishes FTB4
Thanks for the advice. My surgeon is one of the top thryoid surgeons in California and does about 104 thyroid surgeries and 104 parathyroid surgeries per year so I think I would be in good hands. Hopefully, my endo will run the right tests and treat me based on symptoms.
If you have compression due to the nodules that effects your breathing I would consider fixing that. I do want to advise that prior to the surgery you require your doctors to run every thyroid test possible to check for any autoimmune issues.
Request: TSH, Free T3, Free T4, TPOaB, TgAb, and TSI labs
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