Choosing between PTU and RAI: Hi there I have... - Thyroid UK

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Choosing between PTU and RAI

Littlegrass profile image
6 Replies

Hi there

I have recently had a miscarriage with result in a Graves relaps. Since I don't have children yet, my endocrinologist recommended RAI which means I need to wait for 6 months until I can start to get pregnant.

Although he is happy I start on PTU if I plan to get pregnant sooner, given my fertility history ( being 32 with 2 miscarriages and Diminishing ovarian reserve) I really want to start now and leave the RAI may be at a later stage.

I have read PTU has lots of side effects, I am wondering whether anyone has experience with PTU? What do you think?

Currently I am on Carbimazole with normal T3 and T4 level with TSH still very low (<0.01).

Thanks!!

Littlegrass

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Littlegrass
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6 Replies
Cmat profile image
Cmat

Hi there, I'm so sorry about your miscarriage.

Back in my late 20s I had a bad bout of Graves and was on PTU. I much preferred it to Carbimazole which had brought me out in a rash. I didn't have any side effects on PTU that I recall, and my thyroid stabilised after 6-9 months (various attempts coming off and going back on but eventually it was ok). I had about 10 years of being stable and now hypo, but I'm very grateful that I was able to avoid the RAI treatment. Good luck xx

Littlegrass profile image
Littlegrass in reply to Cmat

Thanks Cmat that's very good to know! Xx

Qwerty12345 profile image
Qwerty12345

Hello. I was on carbimazole but developed hives and was switched to ptu. I had no side effects during the year I was on it. Now in remission (graves) and have been on no treatment for a year.

Littlegrass profile image
Littlegrass in reply to Qwerty12345

Thanks Qwerty12345, that's very reassuring! Xxx

glo42 profile image
glo42

I was diagnosed hyperactive thyroid and began carbimazole and have had no side effects

at all. My Endo was very informative on my first visit. I haven't see him since and other doctors in the thyroid clinic try to push the RAI or surgery on to me. I don't want either and some appointments have been very upsetting, but I am sticking with my decision.

In the clinic I am told that after RAI or surgery I just need to take a tablet daily and will

be fine......... after listening to others on this brilliant site, I know this is far from true.

Go with whatever you feel is right for you and try not to be intimidated by doctors.

So sad to read about your miscarriage, I hope things will work out well for you in future. xxx

Littlegrass profile image
Littlegrass in reply to glo42

Thanks glo42! Yes, my endo basically was telling me there is no side effect apart from needing to take pills for the rest of my life and that I need to wait at least to get pregnant again. However, I am just not very comfortable the thought of RAI esp. my symptoms are easily controlled by meds. Thanks for your wishes! xx

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