[Ski]

#1062437

We understand, believe me. The first thing you should know is that this is not a signal that you are receiving substandard care. This is the course of the treatment, it’s very typical.

RAI takes six weeks to do most of its work, but in addition to that, it takes up to six weeks just for your body to flush out the excess thyroid hormone that existed on the date of the RAI, so we don’t typically feel much relief until after that point, and even then, it tends to be gradual.

I understand you’re just beyond the six-week mark, but even so ~ depending on the dose you were given (which is part calculated science, part the art of experience by the radiologist), the RAI can take up to six months to do everything it’s capable of doing to your thyroid. Given those facts, most doctors will wait and see for at least that period of time before they consider another course of treatment. Keep in mind that doesn’t mean that until the 6-month mark you’ll be feeling the same ~ your thyroid hormone levels should continue to drop, and ultimately you should go hypo, if you were given the right dose of RAI (and these days they’re FAR more likely to hit the right dose than when I took it, 12 years ago).

If taking methimazole right now gets you through a brief period of hyperthyroidism before your thyroid ultimately gives up, then it’s not the same thing as committing to a 2-year period (as if you chose ATDs in the first place). It’s just keeping your thyroid hormone levels in the normal range to allow your body to heal from the hyperthyroidism.

I know it gets old, I realize it’s hard to feel crummy ~ I felt that way myself, as did many, many, many of us. As a matter of fact, I’m one of the few who DID need a second dose of RAI, so I wasn’t feeling TRULY well for at least 3 years after my initial diagnosis. In fact, though, I did continue to feel better and better during that time, so it wasn’t really "lost time," it was just not perfect.

Thyroid disease is tricky, treatment is a process, not a one-time event, and it’s important to know that. It’s hard not to feel impatient, but try and hang in there. You’re getting there, I promise!!

[Suz01]

#1018054

I had rai 2 months ago and still hyperthyroid. I was taken off the methimazole ( March 8th) and at that time free t4 was 0.99
Now it has gone up to 3.16 and I had to increase beta blockers back to 50 mg twice a day. As usual the endo was not in today but I won’t go back on the methimazole ( I didn’t like the side effects).
I want to know how much time I have to wait to have the surgery to have my thyroid removed.
I’ve decided that I won’t have a 2nd round of rai.
I wanted to have surgery instead of rai originally but the endo discouraged it.
I was diagnosed 6 months ago and feel my recovery has gotten no where.
Maybe it’s time to start looking for a new DR.

[Bobbi]

#1062438

I’d like to chime in and reinforce Ski’s comment about taking the methimazole. Like you, I hated the side effect of the antithyroid drug I was on (PTU), so I do think I understand your disappointment right now at the prospect of having to go back on the drug once again. But the enemy is hyperthyroidism. Every day that you allow yourself to remain hyperthyroid is a day that your body is damaged. If a wee bit of methimazole prevents that, you are helping yourself in a huge way.

You may ultimately need either surgery or another RAI to remove what is left of your thyroid, but it is much too soon to tell. Please try to be patient –and, yes, I do know it is hard. But RAI is a process not an instantaneous event. You need to let it play out.

[lammie]

#1062439

Hi, I just responded to a post above (I think the subject line is post rai – changing symptoms) anyways I basically am letting others know that I went to hypo stage 9 weeks after RAI so maybe you were almost there but you weren’t supposed to get off those meds. I was on 2 Carbimazole and now I am hypo. Please have a read if you like.

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