RAI didn't work-what now?

[PackersH]

Hi,

Hyper-diagnosed in March '11 with T4 at 94, issued 30mg Carbimazole and beta blockers until Novemeber '11 when I had RAI treatment. I just got my first blood test results back since the treatment and they're T4 at 60.

Prior to RAI my levels were stable at around 19, 8 weeks post treatment I'm back at 60.

What happens next? Is it worth having another RAI dose or is the Endo likely to suggest tyroidectomy?
I just want to know what is the usual course of action so I can get my head around this. Before the RAI my Endo said it has a 70% CURE rate!!!! So this was the last scenario I was expecting!!

[CAppleD]

I know the frustration! I was hyper (with Graves', also) for 4 years, finally had RAI, they said it would 'cure' me, but after over a YEAR, I was still very hyper, so had the RAI again, then within 2 months, I hit the floor of thyroid hormone levels, have been hypo ever since.  I agree, give it some time, be patient (as possible) and keep trying, its much better than the risk of surgery and a storm.

[lesley007]

I had rai 10 yr ago. Cannot have worked. I am on no tablets and thyroid functions are normal

[Ericamegan]

I had RAI (32mCi) in Feb 2010.  I felt even more hyper for awhile and then began feeling hypo about 4 months post RAI.  It may take your thyroid awhile to die off depending on your mCi dosage. Everyone's different....I'd give it some more time to work!

[Kristina538]

Sorry, re-read your post and you have got all the dates.  Similar to me, I had RAI in Nov... between March - May I became euthyroid.   Were your TSH levels that high before you went on carbimazole?  and/or what is the range for TSH as it does seem high..

[Kristina538]

I was able to continue my carbimazole from two weeks after RAI  on a low dose (the doc's prefer you not to, but I'd been hyper for a long time and had other complications).     On only 15mci of RAI (lower dose for toxic nodule) it took just over 3 months for me to become euthyroid, and I stayed stable for another 7 months before starting to go hypo.    Everyone is different on the uptake of RAI, but from what I remember, they like to wait 6 months before considering another dose of RAI.  

Get your FT3 and FT4 done also, and if necessary, ask if you can take a low dose carbimazole again (if you're uncomfortable).  However, I did start going hypo because of the combination of carbimazole and becoming euthyroid from the RAI, so ensure your levels are monitored closely.  

The first bloods are taken 6ish weeks after RAI  - have you been six weeks (without the carbimazole I would've still shown hyper, and given that your hyper levels were being suppressed with the carbimazole prior to RAI, it may be that it's your true 'hyper normal', although not knowing what meds you're on, how much RAI you took, the FT3 and FT4 results and the time lapses, I can't even try to be of any real assistance.    Don't give up on the RAI yet as it's slow moving, but I suggest you make an appointment to discuss your levels and any symptoms, with your doctor.   Best wishes.

[goolarra]

I'm no expert on hyper (I'm hypo), but from what I understand from other members, you shouldn't panic yet.  After RAI, the thyroid continues to die off for quite some time (can take a year).  During that time, thyroid hormone is being "dumped" into your bloodstream as the thyroid cells die off.  During this process, you can still be quite hyper.

Have you talked to your doctor yet?