[VanIsleGal]

#1059291

Thanks again for all the responses to my last post! I am digesting them slowly as RAI was a no go for me until yesterday, so I feel I can’t take everything in all in one day! So I will read and respond soon!

My endocrinologist said he would book me an appointment with an eye specialist since this was my request. I asked him if this was his recommendation and he felt I didn’t need to see an eye specialist but if it made me feel more comfortable with choosing RAI he would book the appt. for me. I seriously might drop my endo a note for being so compassionate! This appt. would delay the RAI so I said no to it as I just want this RAI over with if I can even bring myself to do it!

He said my dose of RAI would be 14 and I read the max dose for Grave’s was 15. It is like jumping off a cliff! I feel like I will be taking a cancer pill, a dose of radioactive crap that will kill an essential organ! I feel like a complete idiot to even be considering this method! Keep in mind I have had Grave’s 3 times and have refused RAI for over 8 years.

I am scared I will get to the hospital and refuse to take this pill! I might run out of the room! I don’t know if I can do this…take the pill! And if I ever get cancer or one of my cats gets Grave’s I will blame this pill. I am so confused right now. I know it is not the 1st choice of treatment in Japan, Morocco, and all/a part of Europe.

I did have a beautiful day! I was at the beach beside my house harvesting seaweed, the bright green lettuce variety. I follow the harvesting guidelines so I know it is safe. I have tasted it, very yummy, but know it is rich in iodine, so won’t cook with it having Grave’s. I really felt that the beach recharged me today!

Anyone else ever fear not being able to take this radioactive pill when instructed to do so?

xoxo

[beach45]

#1173914

Hello VanlsleGal,

Yes I had fear back this past Spring when told I needed to do this when 20 months of terrible up and down on Methimazole/Tapazole (MMI) did not work to get me into remission. I was crushed as I was hoping for remission. I was also miserable on MMI (that is me though). Yet for me I was in terrible shape when I started the MMI to begin with back August 2010 and possibly I had too high hopes as it works for some better than others and doctors were not willing to give me extremely small amounts either upward or downward to find where they could maintain some balance. TT was out for me; I had a miserable 9 month recovery after I had one ovary and a cyst removed in Spring 2009.

I thought the same that last minute I would bolt when the pill came out in the hospital and that I would contact this excellent surgeon here I already had met with who has a excellent success rate with TT. Yet then I started to calm down. I did my research and talked with many medical practitioners, people who had RAI and reading different medical journals and decided I would be very surprised if I developed cancer; like I said I know people 20 and 30 years post RAI, no cancer, living healthy lives; in fact I just spoke to my husband’s cousin, a doctor who had RAI 20 years ago; she talked to me this is no big deal and why would you have wanted to stay on MMI so long and why all these women who she puts under, she is an anethesiologist, for Graves she is very surprised as RAI is so simple. She took the pill a couple days later back at work, gained no weight and is in her 60s now (and watches diet and exercises) and to me like no big deal. She is very healthy. I saw her this past Spring and yes looks very healthy. Okay, yet her experience, her opinion.

Yes there are exceptions and people on any forums are the people who do have problems post RAI or TT and she admitted we are all so very different. She said the majority of post RAI people she runs into are doing great years later. Like I explained my weight issue especially in the middle to her; she did not have that at all post RAI. Yet I am also going into the change of life now in my 50s.

I would never try to talk anyone either into this as I could not be myself. Yet because my heart rate was so very fast, I was so heat intolerant, my moods were all over the place, before MMI my hands shook like I was an alcoholic and I could not write, my legs were just about to collapse under me and my internist originally brushed it off that it was just “hormonal” and I waited about 4 months before I really got tested for Graves. I was developing afib and could have gone into a storm eventually. When I look back at that and how calm I am now 15 weeks post RAI and from my research and everything I mentioned, I feel much better about this decision.

I am also seeing that my eyes may have actually been worse pre-RAI with my levels going up and down too much on MMI. That is me though and research apparently has not confirmed that thyroid levels changing effect the TED, yet there was something up; my vision may be improving as I had problems starting with my eyes way before Graves came out. Yet I also do acupuncture for my eyes and it may be helping and my doctors are okay with it as I am not going to promote natural means here though and I tell my doctors everything.

This is all very natural at least it was for me. I had relief once it was over. Now I hope for relief of my one issue mentioned moving forward once on T4 with a good diet and exercise plan which I already follow.

You hung on a very long time. I wish I had achieved some balance on a very low dosage of MMI. Yet three endos were telling me RAI or TT as it did not look promising for me and it was very difficult to deal with in my mind. I have to be careful not to read too much or listen to worse case scenarios as that was not helping me either. Or like a nurse practitioner told me from where I moved from, that the final choice is mine anyway! I had to weigh out risks vs. benefits based on everything I knew and talking with my medical practitoners. Maybe I could have found the perfect doctor to keep me on MMI indefinitely or maybe I should have chosen the TT route. Yet I made my decision and overall I am happy with my decision and I see a light at the end of this tunnel coming and you will too.

The beach sounds lovely by you! I live in the south here about 1-1/2 miles from the beach. Good place for me to sit and gather my thoughts and meditate.

Best of luck. Please keep us posted. Hope this maybe helps or sorry for rambling as I type very, very fast.

Beach

MMI 20 months (varying dosages, drug induced hypothyroid 2 times)
RAI May 2012
Moderate TED – no steroids prior to RAI per thyroid eye doctor
Normal FT3 and FT4 ranges and very low out of range TSH 11 week post RAI blood work
Not an MD or medical practitioner

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