I am having RAI done due to heart problems...not because I want too but because I have too...basically to stop anymore thyroid storm and drug sensitivity with ATDS.
I have heard of some who go into remission but that doesnt mean they are cured.
Graves Disease is there for life...my sister is living proof of it.
Autoimmune Disease is there for life and if remission is found, there is no guarantee it wont come back.
People have RAI for many reasons......this is my reason.
I hate being on a yo-yo and going from HypeR to HypO every 2-3 weeks even on the minimal dosage of Carbimazole (methimazole).
I want ME back or at least the person I was BEFORE Graves.
I know people who have gone into remission and 25 years later are still in remission (euthyroid).
Other people, myself included, eventually become hypothyroid. Their thyroid burns out to one degree or another. I'm now on a very low dose of levethroid.
Having Graves (if that's what you have) is a very difficult situation and can take a *very* long time to get back to normal. It takes a stubborn individual to get their doses correct, and cooperation from their doctors, such as frequent blood tests. I have even been on a dose regimen that would be every other day for meds at the lowest dose.
In the US, RAI is the choice for treatment. But it can have terrible, long term consequences. In Europe and Japan, medication is the treatment of choice, and people are on it for decades without problem. Each patient is different, responds differently to drugs and you have to stay on top of things.
I cannot stay on ATDS as it has affected my Liver Enzymes badly.
I have watched my sister with Graves for the last 12 years so know all there is to know in regards to Lab levels and HypO and HypeR.
I have been prescribed many different dosages of Carbimazole but the last 3 months, it is ME who has got the levels so that I am NOT plummetting down to HypO OR rocketing to HypeR too fast.
I was currently on 5mg daily (2 weeks ago) then cut it down to 3.75mg daily as I felt I was heading for HypO.
I see an Endo for a first visit tomorrow after waiting 5 months to get in to see one (Australia dont have many Endo's) and will be asking her to do RAI.
I know I am HypO at the moment and wont lower the dosage as I need to be HypO to have RAI so will wait and see what she says tomorrow (27th May).
I think we all want some peace of mind and quality of life and at 48 years old, I refuse to be on a rollercoaster of ATDS where it is destroying my Liver and I have NEVER been a drinker.
I realise its not the choice for everyone but its the choice for me as surgery is out of the question with the heart problems.
Im not going in blindly hoping there will be no hiccups as I know there will be but to keep going from HyeR to HypO so fast and be so symptamatic with it too ...along with the extremely high ALP enzymes...then its time for something to be done.
I've tried for nearly a year now and ATDS are not working for me.
As for remission.....yes Stella, I think Remission is when you dont even know you have it (it is in my eyes).
What I mean by that is ...no symptoms.
If Remission is just by going on the TSH level...then thats not remission for me.
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