How long has it take RAI to work for you?

[MadM24]

Hi All,

My hyper battle has been ongoing for 4 years. First time it settled quicky with Carbimazole and relapsed after stopping, I have now been on Carbimazole for over 3 years, with the only break being for my RAI treatment.

So my RAI treatment was 10th May and I restarted Carbimazole 20mg a day one week after (which was my maintained dose before RAI) 4 weeks on I was Hyper and had to increase dose to 30mg a day. Fast forward another 3 weeks or so and I am feeling terrible. The palpitations, the heat intolerance, the breathlessness, tremor is back. I have had to stop running. My resting HR is higher and my fit bit keeps telling me I'm in the fat burning zone when sat in the chair!

So have spoken to consultant and had another blood test, T4 is 30, T3 is 11.4, both higher than last time. I have been told to increase my carbimazole does to 50mg a day and to start propanolol 40mg 3 times a day, yet they still say the RAI might work?

How long have you found its taken for RAI to have effect?

Have any of you have issues with Carbimazole needing to go up before it can come down?

Feeling really down.

[bantam12]

RAI worked within 4 weeks for me, I was severely hypo by the time my follow up appt round.

[MadM24 in reply to bantam12]

Thanks. Hope managing Hypo is going okay. I guess that's the other challenge.

[bantam12 in reply to MadM24]

I had RAI around 20 years ago and been fine on Levo since. Hope you get on ok.

[PurpleNails Administrator]

It’s individual for everyone. The information leaflet many hospitals give out (I’ll add link) says most (two thirds) become hypothyroid within a month - but the full effect can take a year or even beyond.

There is no single correct dose, hospitals administer a fixed dose rather that calculate a dose. About 10% of patients need a further dose.

Were you advised of this?

Stopping carbimazole prior to treatment ensures the thyroid is working to take up the iodine, but that can cause a rise. It might have caused the thyroid to “take off” again, with treatment adding stress and strain to thyroid it’s possible a rise in levels could occur.

T4 is 30, T3 is 11.4 what is the lab range? By most ranges it’s high, 50mg of carbimazole is quite a high dose, what we would expect someone 3x normal range might be taking. I doubt you will need to stay on that level of dose very long. Has another test been scheduled soon?

Propranolol will help relieve symptoms (not the underlying cause). If you are new to propranolol make sure you reduce slowly when deciding to stop.

Making sure you have regular blood test to adjust medication is very important.

What was the cause of the hyper? Any related eye issues?

btf-thyroid.org/treatment-o...

Also have folate, ferritin, vitamin D and B12 been tested. These can be low when thyroid abnormal.

[MadM24 in reply to PurpleNails]

Hi!

Yes I was advised sometimes a second does is needed, but that it can take months for the effect happen, just seems lots of people get results quicker. I have the info leaflets given prior to treatment.

Cause of the Hyper is Graves, no eye disease or nodules or anything. Its been in my family, grandmother had to have 2 lots of RI many years ago.

I don't know what the lab range was, those are just the numbers the nurse gave me when she called today. As far as other blood test, I have regular ones for cell counts etc, but no idea if any that you mention have been done. next test is in 4 weeks.

Its so frustrating as I was actually feeling good just before the RAI, had started running again, was sleeping okay...hair was growing back (since had another major moult :-() And now I feel as ill as when I was diagnosed.

[pennyannie]

Hello MadM and welcome to the forum ;

I was given the toxic drink in 2005 and hypothyroid in weeks and prescribed 100 mcg T4 - Levothyroxine.

You might like to dip into the Elaine Moore Graves Disease Foundation website if you wish to research this poorly understood and badly treated auto immune disease further.

I can't believe you are still thinking about ' running ' as from memory I was simply exhausted for a good couple of years and I'm not sure my energy was every restored and I simply just adjusted to my new situation, living without a thyroid.

The measure of RAI is not as exacting as you might think, and some people do need to have a second dose and can only imagine this treatment has triggered your immune system to ' take off ' again.

Ultimately the RAI burns out the thyroid gland is situ and you will become primary hypothyroid and discharged back out to be dosed and monitored in primary care.

Please ensure in primary care that you are dosed and monitored on your T3 and T4 levels.

In primary care the yearly 'thyroid function test ' is just ' a TSH reading - which is not sufficient for any patient, and especially so for people without a thyroid and living with Graves Disease.

elaine-moore.com

[MadM24 in reply to pennyannie]

Thank you I will check that out.

Yes I was feeling good and on the level before, but it did take a long time after diagnosis, now I puff going up the stairs.

Apparently my Grandmother had 2 does of RAI so maybe I just need more.

I wait to see what happens after the next test in 4 weeks