7 weeks after rai treatment son is overactive and hospital saying the treatment hasn’t worked … am I right in thinking it still could work?

[Littleone01]

my son has recently had rai for Graves’ disease and following his first blood test since the treatment he is very overactive again … they are saying they can’t put him on carbimazole for another month and that the treatment hasn’t worked? I’m hoping that it still could kick in as only 7 weeks since treatment and not sure why they are waiting to put him back on carbimazole if they say it hasn’t worked. Anyone else go over before going under … thank you … an anxious mother … he is an adult otherwise I would have asked these questions myself when the hospital phoned and he himself is just upset he’s still over so hoping he misunderstood as he wasn’t expecting her to say he was still over. They are going to do blood tests every 2 weeks from now.

[PurpleNails Administrator]

Welcome to forum.

Yes, It can take weeks, months even longer for full affect of treatment to manifest, so it’s still possible for levels to drop.

If drs were certain the treatment hadn’t worked I believe they would recommence carbimazole as wouldn’t make sense not to.

I think it’s more likely the TSH is still low so they believe his levels are hyperthyroid, but are waiting to see if that changes.

Does he have hyper symptoms? Any new / changing symptoms.

What are his results? He is entitled to all his results, either online or a printed copy with lab ranges.

He should have the following -

TSH, FT4 & FT3.

Have antibodies been tested prior to treatment? TPO, TG, TSI, TRab.

Very important to test folate, ferritin, B12 & vitamin D.

Has he been screened for gluten allergy?

[Littleone01 in reply to PurpleNails]

thank you so much for replying. They’ll send a letter confirming the conversation so will have actual levels then but he was so upset it hadn’t worked that’s all he was focused on … he’s been on carbimazole for about 9 years never managed remission and as soon as he got down to 10mg he would spike again so they’ve been trying to persuade RAI for some time now hence he’s so upset when he actually goes for it they’re now saying it hasn’t worked. As for symptoms he was on 20mg before he stopped the week before RAI and symptoms came back quite quickly and for about two weeks after he had all the usually ones … hot, palpitations. Jittery and couldn’t exercise like he had been but he had been saying he felt good in the last couple of weeks so felt it was working. Blood test was Monday just gone and they phoned today saying he was over and it hadn’t worked … apparently she said she was surprised as in 90% of patients it does and it was rare it didn’t … but I’m still hoping it’s too soon to say … they are going to do 2 week blood tests now so I’m really hoping it starts to do what it’s supposed to. I will post his levels as soon as I know them.

[Littleone01 in reply to Littleone01]

Oh and he is celiac which was diagnosed at the same time as the graves

[PurpleNails Administrator in reply to Littleone01]

I wouldn’t be surprised if the doctor letter omits the lab range, that’s usually what they do. He might have to chase up exact results.

Usually hospitals hand out a leaflet about RAI by the BTF. It’s does explain 10% require further doses. So it’s not entirely unexpected but really unfortunate.

Does he have beta-blockers eg propranolol to help with symptoms?

[Littleone01]

She did say she was really shocked … they offered beta blockers again but he hated them before so would rather deal with the symptoms.