[Kerrie Mccaffrey August 16, 2024 at 8:35 am Post count: 1]

#1186766

Hello

I had GD for 17 years treated with Carbimazole then PTU. I had some remissions in this time that lasted no more than a year or so at a time.

The PTU stopped working properly at the start of 2023 and I had a thyroid storm. I then received 600 Mbq of radioiodine treatment in July 2024.

At 3 months post RAI thyroid function was normal and goitre nicely shrunk. I had no anti-thyroid meds or replacement meds at all immediately following RAI. Endo stopped all meds completely.

By May ‘24, GD symptoms raging again, Dr was adamant that this was impossible and suggested that I must be drinking too much coffee or was suffering from anxiety not related to anything thyroid. Eventually persuaded her to do a thyroid function test! Obviously i was correct after living with GD for 17 years!

Consultant said that the RAI had failed as the GD relapse occurred more than 6 months post RAI and wanted me to receive another dose.

Was put on 30mg Carbimazole, reduced to 20mg. Goitre growing again.

Have just had consultation today and I am now hypothyroid a year later.

Consultant said that he doesn’t know if the Carbimazole dose was too much and this is the cause of going under.

Has anyone had an unusual thyroid pattern post RAI and what was the cause/outcome?

He has told me to stop the Carbimazole immediately, have bloods in a month and see where it’s at.

Thanks
Kerrie

[KimberlyOnline Facilitator August 16, 2024 at 9:39 am Post count: 4294]

#1186769

Hello and welcome! I’m not sure about your timeline (guessing RAI in 2023?), but if there is living thyroid tissue left after RAI, it can regenerate – and hyperthyroidism can definitely recur. Dosing with antithyroid drugs can take some tweaking to find the right dose that will keep your levels normal. Has your doctor tested antibodies? I’m guessing you are overseas (as we use a similar drug, methimazole, here in the USA), but in the USA, it’s recommended that antibodies be tested before withdrawing antithyroid medications. If the antibodies are still raging, hyperthyroidism will eventually recur. Keep an eye on your symptoms, and call your doctor’s office ASAP if you feel the old hypER symptoms coming back.

This forum is a little quiet right now, but you might also want to pose this question in our closed Facebook group, as it tends to be more active. If you are on Facebook, search for @GDATF and select “Join Group”. Answer all 3 membership questions and agree to the group rules. We usually approve memberships within one business day.

Take care!
Kimberly

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