[Anonymous]

#1127785

Well, you are definately not alone. I am 1 year post RAI (never tried the anti-thyroid drugs because I already had occ. bouts of low white blood count). It took me 3 months to go hypo. We have been working on my dosage since then. I definately feel better than I did before the RAI. However, I just had a flareup recently and got my meds lowered. So, I guess there are never any guarantees. My endo listened to me and lowered them before the labs showed that I was out of normal and so I only suffered hyper symptoms for a few weeks this time. Hang in there!

[Anonymous]

#1039475

Hi, I’m new to this board, but I’m sitting here, thanking God that I am not losing my mind. I went to all kinds of dr.s occasionally and they told me I had depression. I went to a cardio. dr. and he sent me to a thyroid dr. That dr. told me at my first visit that they cut the thyroid out in surgery. I didn’t even know what a thyroid was, I just got out of there as quick as possible and didn’t go back. I continued to have problems like a rapid heartbeat with an occasional “Kick.” (I can’t explain that one, only that it feels like your heart is beating fine, then all of the sudden, it beats hard for a beat or two, then back to normal.) Anyhow, I was also very depressed, and felt scared all the time. I would have times of nervousness, and emotional battles. I just didn’t know what was wrong with me. I went to another dr. in 1996 and was diagnosed with hyperthyroidism/graves disease. I was put on Tapazole, which controlled it and I went into remission. Then it flared up again. Back on Tapazole, back in remission. Now I am having symptoms again. I’m in a mental battle again. Heart racing and “kicks” every now and then. Back on Tapazole. (two 10 mg. tabs per day. I’m not feeling too much better yet. I started taking it Tuesday, March 21, 2000. I am ready for RAI at this point if it will make me feel better. Just want to let you all know that I appreciate this Board and am glad you are here. I feel so alone and in agony.

[Anonymous]

#1127786

Angie! You say you are 1 year post RAI. Then you went hypo before things evened out. You say you recently had a flare up of hyper again? How can this happen? If you have RAI, and your thyroid doesn’t work anymore (I am understanding that RAI destroys most or all of the gland) how can a person become hyper again after RAI treatment? All of this information is overwhelming to me and I don’t know what to do. I am so confused, helllp?!! DJP

[Anonymous]

#1127787

RAI has an initial “blasting” effect that destroys varying amounts of thyroid tissue, depending on the dose given and how the body responds to it, which doctors haven’t learned how to predict very well. The RAI has been mostly eliminated by the body a week or two after it’s given, and can’t damage the thyroid further. However, the remaining tissue has suffered radiation damage, which results in a kind of “premature aging” effect that results in the thyroid dying out gradually over varying periods of time. Autoimmune antibodies add to this effect (even people who go in to remission with antithyroid drugs tend to end up with hypothyroidism eventually).

After the initial “blast”, sometimes people become mildly hypothyroid for awhile, but their glands recover enough to become hyper again, usually fairly early on. This is more common when smaller doses are given.

Most people have at least some of their own thyroid function following RAI, since about 2/3 of the time a small or moderate dose is given, which aims to make the person euthyroid (normal thyroid levels). Although sometimes this objective is achieved, it is usually temporary. Even with the smallest doses of RAI, ten years later 40-50% of people are on thyroid replacement hormone. The percentage is higher than that with the moderate or large doses of RAI. Most people end up somewhere down the road with little or no thyroid function of their own.

There are potential advantages and disadvantages with the smaller and larger doses of RAI, and I would have liked to have been aware of these and been given a choice which I wanted to do. That subject is another post, however.

This is probably more than you wanted to know.

Dianne W
NGDF Asst. Online Facilitator

[Anonymous]

#1127788

Don’t mean to be confusing although sometimes this disease confuses me too. I am on thyroid hormone replacement. I was on 100 mcg for four months but then I began having hyper symptoms again recently and my tsh was going steadily down while my T4 was going steadily up so we have lowered my dosage. My hyper symptoms coincided with a mild TED flareup.

[Anonymous]

#1127789

Angie, Thanks for responding. What is TED? Are you feeling better now that your meds have been adjusted? Please write back and let me know. I am feeling a little better today, I guess the Tapazole is working now. I am going to discuss RAI treatment with the dr. in two weeks. I’ll keep you posted, and you do the same.

[Anonymous]

#1127790

Sorry for the acronym; should have remembered you said you were new to the board. TED is thyroid eye disease. This was my second mild bout with it. My left eye sticks out more than the right but it isn’t noticeable or maybe it got a little better now that the swelling has gone. I had swollen eyelids, eye pain, and difficulty looking upward and to the left. That lasted for a couple of weeks but has gotten better as have my episodes of heart palpitations and fast heart rate.
I am not doing any better with sleeping at night but it seems like some symptoms just take a little longer to go away than others.

If you have any eye symptoms you may want to discuss them in particular as regards the RAI. I believe that there is some evidence that RAI worsens the eye symptoms unless you take a course of something like prednisone.

Glad that you are starting to feel better.

[Author]

Posts