beach45
    Post count: 178

    Hello,

    I am post RAI 15 weeks. Not hypothyroid yet; FT3 and FT4 dropping into range back at 11 weeks; I am sure more changes as feeling hypothyroid now at 15 week blood work.

    Have moderate TED diagnosed prior to RAI; no steriods for me as per a thyroid eye doctor specialist who said go for the RAI.

    Thyroid eye doctor told me last week generally going hypothyroid will not cause worsening of TED. His physician assistant said most hypothyroid people are not affected with much worsening of TED yet anything is possible. A thyroid specialist I consulted with said for TED just make sure I watch levels carefully post RAI and to avoid a hypothyroid condition. Right now I am tested post RAI every 4 weeks.

    I have two friends; one had RAI 20 years ago; another 30 years ago. No cancers.

    They had small doses like me; I had 15 millicuries.

    The ablation done by either taking a pill or liquid (the I-131) I had done in my hospital given to me by a nuclear doctor who did this as per the order given to him by my endocrinologist. Don’t know why the endo is doing the ablation yet sounds like your doctor’s choice to do it that way(?).

    I could not get into remisson 20 months up and down on Methimazole; either too hyper or too hypo even with minimal doses up and down; yet I see from my records I was subclinical hyperthyroid for years and no doctor further tested antibodies.

    I was concerned as I felt I had a stubborn case and at a couple months post RAI my endocrinologist(s) were concerned that I was not going toward where I needed to be post RAI. I was very surprised at my 11 week blood test numbers had changed drastically. So no more rounds of RAI for me; my endocrinologist said he would have given it 6 months. I know of two people it took one year to go hypothyroid post RAI; some actually go eurothyroid yet my endocrinologist said not often. I had pretty high antibodies too.

    I have two cats. With the 15 millicuries I was told stay away from husband and cats two whole days. I did 2-1/2 daysjust for me thinking I’d be safer. My cat’s vet said stay away from my cats, except short period of times, total of six days. So I definitely shut the bedroom and kept them away from me as they sleep right by me. I probably did a little extra isolating than some people may be advised.

    Yes I can relate and you have gone through even more years than I. It is now total about 27 months for me. It has been a nightmare yet I think the light at the end of this tunnel is getting there for me hopefully. Why some have an easier time on this journey than some I do not know. I know people who had absolutely no issues post RAI and no weight issues, for instance, yet I’m struggling with the weight issues and starting on that drug Methimazole/Tapazole.

    I wish you the best in your continuing journey; I would say though overall now post RAI things are going well for me with just the above mentioned issue and maybe a couple minor things. Good luck!….beach45