Hello – I don’t recall when I posted that study for gatorgirly, but there was guidance released last year on RAI and TED from the American Association of Clinical Endocrinologists and the American Thyroid Association. Their recommendations are based on whether the patient has visible and active eye involvement, how severe the involvement is, and whether the patient is considered “high risk” for worsening eye involvement. (Smokers and patients who have extremely high T3 or antibody levels are considered “high risk”). For patients with no risk factors and no active eye involvement, the guidance says that all three treatment options (RAI, Anti-Thyroid Drugs, Surgery) are equally acceptable. For patients with mild and active eye involvement, RAI is considered an “acceptable” therapy, although the guidance recommends that patients who are “high risk” should receive steroid therapy concurrently with the RAI treatment. For patients with active and moderate-to-severe or sight-threatening eye involvement, the guidance says that methimazole or thyroidectomy are the preferred treatment options. You can access the full guidance in the “Treatment Options” thread of the announcements section of the forum; the section on RAI and eye involvement starts on page 622 of the journal article; page 30 if you download the guidance as a PDF doc.

Following is a link to the study that I originally mentioned. I don’t know if it has since been replicated, but in the section on RAI, the ATA/AACE guidance notes that post-RAI hypothyroidism is a risk factor for worsening of GO, so there must be some belief among the authors that there is some connection between TED and Post-RAI hypo.

(Note on links: if you click directly on the following link, you will need to use your browser's “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://jcem.endojournals.org/content/90/9/5321.short [jcem.endojournals.org]

Finally, on the in-house RAI procedure, I actually spoke with two doctors at a conference this spring who had installed facilities to be able to administer RAI in their offices. I have no idea, though, what the personnel, safety, and certification requirements are to get something like this set up outside a traditional nuclear medicine facility.

Wow you guys/gals are so awesome as usual! I am still reading everything here! I have called my endo asking to see an eye specialist prior to the RAI. Haven't heard back yet as his office is closed for lunch right now. The doctor put a rush on the RAI and wants it done within the month. It is done at the hospital. I still don't know what the lady meant about my endo doing it and it wasn't painful. This doesn't make sense to me at all.

I have never smoked and I don't know if my antibodies would be considered very high. They are 79.8 with normal being below 1.8.

Ugh going to the beach! Will read more later! Thanks everyone! xoxo

Hi, this site may help with partial response to your questions from ATA which I believe is okay to supply this link: http://www.thyroid.org/faq-radioactive-iodine [thyroid.org]

I had spoken to a woman who had RAI 7 years ago and she said that the nuclear doctor and tech wore like space looking protective suits, brought the pill in a suitcase, and it was very contained. Then they ran. There are still precautions yet my nuclear doctor and tech wore regular doctors clothing and they claim that anything under a certain amount of millicuries (mCi) are not as strict guidelines as prior as my friend's dosage 7 years ago was 10 millicuries. Yet it was still in a sealed container and after I swallowed it I had to leave the building immediately to go straight home and not to be in close contact with anyone. They gave me a sheet a couple days before with guidelines as I had another RAI-Uptake and scan prior to the I-131, so I was prepared. That part was painless for me and the pill was regular size unlike what my friend took back 7 years ago. I personally though always heard of it being taken at a hospital in the nuclear department yet only my experiences in this area I live in. Best of luck!

Gator girls, I love this forum too!,, any chance you will plan to attend the big conference sometime? I could not go last time to Boston cause I had just had grafts from my hard palate to my lower eyelids. But I am going this year

I was planning on attending this year's but it is exactly one month after my OD and I'm not sure how I'll be by then. If I have a quick recovery and don't blow through all my PTO at work, I'll book a flight sometime in October. I'm also trying to find the funds for it. I have maxed out my health insurance every year since my diagnosis so it's been tough, as many on here can probably relate.

Like beach, my RAI pill came in a crazy looking container (I think it was lead, which reminded me think of the only way Superman could be around kryptonite, and that made me feel like a superhero) but the tech just handed it to me and made sure I swallowed - it was a regular-size pill and there was no pain involved. The nuclear radiologist came in and talked to me but left the room before the tech brought the pill in. I had to wait 30 minutes in the waiting room before I could go home because they told me that was when a thyroid storm would happen, if it happened. Since it didn't, I went to the Steak & Shake drive-thru for a milkshake and went home and got into my pajamas and my bed simply because I could…for three whole days.

VanIsleGal - let us know what happens with trying to get in to see a TED specialist. I also have never smoked and never had my antibodies tested (that I know of - maybe they were early on. My uptake and other labs spoke for themselves).

Hi everyone,
I just found this forum today and the question about hypo raising TED risk caught my eye. My story: I am 54 years old and was diagnosed with Grave's over 15 years ago. I had RAI immediately and, since then, have been on a roller coaster ride with my thyroid levels, spending more time than I have liked being either hypo or hyper although my levels been better, and I have felt better, since I started on Armour Thyroid.

Last summer, after 15 years of NO eye symptoms at all, I developed TED. I am not a smoker but was hypothyroid at the time - unknown to me.

Although I am new to this forum, I read everything I can read on Grave's and RAI and TED and have for years, and have read many people's stories and what I think is that anything can happen! TED can happen if you are hypo or hyper, if you have had RAI or not. And, judging from the number of people who post here and on other thyroid forums, thyroid problems are challenging to figure out, and many of us don't feel well, and many seem to have doctors who don't know as much as we do about our thyroid disease.

For me, Grave's Disease is a piece of cake compared to TED. And I wish I had tried the meds before RAI, but that's just me, and what is done is done.

Carol

My RAI is scheduled for September 7th and I was told I could expect to be at the hospital for 2-4 hours. I am supposed to have 14, I-131 with the highest dose for Grave's being 15 I believe. I opted not to see an eye specialist because this was going to delay the RAI and I just want it over with. My endocrinologist did not recommend I see an eye specialist 1st, he said he would refer me to one to make me more comfortable with the RAI.

I think the endocrinologist said the 1st 2 days were critical in staying away from other people and pets. About 95% of the radioactive 131 leaves the body in the 1st 2 days? I have the RAI Friday morning and have an event to go Sunday afternoon and will be out with people. I don't plan on cancelling my event Sunday.

Wow Carol. 15 years is a long time to not stabilize! My endo said he would be with me until I stabilized after the RAI.

I am glad some of you told me the pill comes in a weird container. I think knowing about any weirdness now will help me cope at the hospital.

Kimberly, I wonder what the definition of high antibodies is? Mine are 79.8 with normal being below 1.8.

Gatorgirly, I am in pain all over I think from Tapazole. I was on 40mg a day but am now on 20mg waiting for the RAI. I don't like hard candy but will be buying some in preparation! I trust my endocrinologist and if he feels an eye specialist isn't necessary than I will wait to see one. I won't get in until after the RAI I suspect.

Beach, I have 3 cats and am scared they will scratch down the door! I don't want the expense right now of a hotel or placing the cats somewhere else. Sounds like you had problems on Tapazole too.

Hope everyone is doing okay! xoxo

VanIsleGal
Kimberly, I wonder what the definition of high antibodies is? Mine are 79.8 with normal being below 1.8.

Hello - the guidance does give a definition of “high antibodies”, but unfortunately, I'm not familiar with the measurements they use:

>50% TBII inhibition or TSI >8.8 IU/L

In the lab results I've seen, TSI is expressed as a percentage, and I haven't seen the TBII run very often in other patients. This would be a good question for your doctor, although keep in mind that the guidance I referenced was issued in the U.S., so that might make a difference as well.

Take care!

VanlsleGal,

Best of luck with this; I personally did fine; things worked out okay so far for me and now at 15 weeks post RAI I just found out today I am severely hypothyroid (I had 15 mllicuries/15 mCi). Actually two endocrinologists told me that they give even higher for Graves like 20-30 mCi to make sure it is totally destroyed from what I was told by them.

I only started experiencing eye issues this past weekend and I have moderate TED; I just found out my blood work from 8/15/12 (I have it mailed to me) is very hypothyroid; I see my endocrinologist this Wednesday and they told me to sit tight as I will be going on Synthroid either tomorrow or Wednesday. I was wondering why these really crazy symptoms which were starting to get my attention this past weekend and my eyes are getting really puffy.

Nurse just told me hang on as once I get on Synthroid and in time, things will get better; she said the weight thing will be last!

Just to say, my TSH in one month went from 0.005 to 52.540 as I won't even go into the other numbers for FT3/FT4 (!) yet nurse said these exaggerated numbers will happen with thyroid die off, not to worry.

I had to put a stopper at the bottom of my bedroom door to keep the one cat from pulling the door. He's a momma's boy; my husband took good care of them yet they prefer me. I did not want to put them into the vet to board as that is just even more stressful for them. I had thought of the hotel yet I opted not to last minute.

I had an interesting ride on Methimazole/Tapazole. 20 months of trying and working with two different endocrinologists (one left my area) and an internist yet never could get me right or moving toward remission. Lots of weight gain and extreme moods.

It will all work out just fine. I was anxious and concerned pre and post RAI. Now after talking to the doctor's nurse today I really feel there is going to be a light at the end of this tunnel! Sending positive vibes out to you and please keep us posted…beach