Post # 1
I was diagnosed with an overactive thyroid five years ago (when I was 22), which is being controlled with carbimazole/methimazole. I’ve been putting off thinking about “permament” cures (read: turn it into an underactive thryoid) BECAUSE I don’t consider them cures.
However… my levels have been a bit unstable recently and today my doctor recommended that I have RAI sooner rather than later. She said that my meds are not good to be on long-term.
I’ve read conflicting information about RAI, mainly regarding the percentage of patients that develop an underactive thryroid afterwards. My specialist says 40%, but other research says at least 80-90% develop an underactive thryroid, which then has to be controlled with thyroxine indefinitely.
I guess I’m just looking for reassurance and “real life” stories. Have any bees had this treatment, and what effects did you encounter? Mainly – did you suddenly become a depressed overweight ball of depression?
Signed, Nervous Bee.
For those that want to answer anonymously, I’ve added a poll. Thanks!
Post # 3
@DarlingClementine: Is there any possibility of moving to PTU instead of RAI? I had Graves and was on PTU for four years before my levels were considered good enough to stop. My sister also had Graves but wasn’t as stable on medication and eventually had the surgery (instead of RAI). Personally, if my Graves comes back and cannot be controlled by medication, I would opt for the surgery as I don’t want to put unnecessary radiation in my body (especially as a woman of child bearing age). By The Way, my sister did not turn into an overweight ball of depression. She’s doing really well and actually lost weight after surgery.
Post # 4
@AstoriaK: interesting, thanks for sharing. I knew PTU was better during pregnancy but I hadn’t thought of switching to it right now because I’ve been doing really well on carbimazole, but unfortunately both times I’ve stopped taking meds, the graves has come back 🙁 Glad to hear your sister is doing well! A friend of mine also had surgery and she’s fine, but I don’t think it’s for me… I’m scared of operations!
Post # 5
- Wedding: November 2013 - St. Augustine Beach, FL
@DarlingClementine: A friend of mine had RAI done almost 30 years ago and while she still has hyperactive thyroid, it’s more easily controlled with meds now than it was before the procedure.
On the other side my mom has hypothyroidism that has to be controlled with synthroid and she had a healthy pregnancy at 40. She has had some problems with depression but they were more influenced by being in a bad marriage than hypothyroidism.
Maybe get a second opinion from another endocrinologist for reassurance. Make sure to see someone at a separate practice (in another town if you can swing it.)
Post # 6
@DarlingClementine: Ah, I see. Well, I think it’s worth getting a second opinion if you are able to. I’ve found that doctors often push RAI on patients very early (my endo included) and it’s not a decision to take lightly as you obviously know. Good luck!!
Post # 7
Thanks for your replies. I’ve decided to go ahead with the treatment at the end of this month! I’m a bit nervous but I see no real alternative. Looking forward to getting off anti-thyroid meds in any case, as I don’t think they’re very good for you long-term. The specialist says that in the UK they give a lower dosage of radioiodine, with the hope of leaving enough thryoid remaining. In the US the aim is to kill off the thryoid completely and rely on thyroxine afterwards.
I’m excited to be doing something definite rather than putting it off, so yay!
Post # 8
@DarlingClementine: Good luck with the treatment! It will feel so good once your levels are more in check! 🙂