Had RAI treatment after 15 months of hyperthyroidism that didn't respond well to meds. At time of RAI, I was sort of in normal range. Two weeks after treatment thyroid was hypo but dr kept me on methimazole anyway. Six weeks after that, my thyroid was way hypo with a reading of 95! Went on levoxyl, and have been on it ever since. Doc will not take me off meds. My understanding was that the RAI was going to balance out my thyroid with a great chance that my thyroid would go hypo eventually. But it seems my doc is assuming that I will be permanently hypo. Shouldn't the doc take me off meds to see how my thyroid fares on its own?
RAI is not an exact science. The hope is to damage enough of the thyroid to keep you level. BUT the REALITY is usually it damages it too much/kills it and you will remain on thyroid replacement for the rest of your life.
Your doctor is correct in keeping you on the med. He is not assuming you will be perm hypo...that was the intent of the RAI...to make you perm hypo.
Your thyroid has been damaged by radiation and no longer functioning. It should have been explained to you that most people under go RAI and are on replacement hormone for life. Very VERY few hit that magic jackpot of damaging JUST enough to no longer need meds.
You will need to have a least yearly TSH and FT-4 levels drawn to keep an eye on how you are doing. The doctor will adjust your dose accordingly.
Before having the RAI a year ago, I asked my endo doc about side effects. He said there was only a possible mild sore throat .Nothing was said about the taste. When I mentioned it after the treatment, he said it sometimes happens, but "It should come back." Yeah, the doctors should warn about that. It is an issue affecting life quality! I, too, taste "by memory." I just remember what things taste like. My sense of smell hasn't been all that acute either, since the RAI.
Its tragic we are not warned of this ahead of time. I can't do simple things people take for granted. I can't sniff the food/taste it to tell if its bad. I have inadvertently given my children spoiled stuff. It breaks my heart.
I've eaten things and had my husband come along a few min later and say, I tossed out the ____ it tastes funny.
The worst story I have come across is a professional chief who was not told ahead of time. It ruined his career.
Taste sure didn't seem like such a big deal before, like if you had to pick a sense to loose which one would you choose type of choice. Its very hard to deal with smelling delisous stuff and not being able to follow it with the taste connection.
I have dealt with it like I said "braille" food and eating for the hot/cold sensation in my mouth/stomach.
And I retrained my brain with this simple mantra. "this is the way food is supose to taste."
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