I saw my endocrinologist today. I am leaning toward RAI after meeting with the surgeon a few weeks ago. He said it was important to really monitor my blood levels and not go hypo after RAI which could flare up TED. I had never heard of this before. I have painful eyes with pressure behind them, but very little swelling. My endo isn't concerned with RAI for me.

He mentioned the increased risk of cancers including leukemia, breast, bladder/urinary and stomach. Has anyone dealt with cancer years after RAI? I choose RAI because I can get it done within the month. Surgery would probably be a year away and the Tapazole really bothers me since I take 40mg a day, just went down to 30mg a day. I am in a lot of pain, so RAI within the month sounds good!

I am concerned for my cats. I am thinking about staying in a hotel for a few days.

When leaving the office a patient told me our endo was great with the ablation and it wasn't painful at all. Why would the endo do the ablation? I thought it was taking a pill or liquid? Is there another method of radioactive ablation?

I also don't like the fact that I could get Grave's again after RAI. I am thinking I am at increased risk having had Grave's 3 times and having high antibody levels. I also don't want a huge dose of radiation. It took me 7 years to decide on RAI and I made the decision today to do it.

I have lost so much having this disease and I am sure everyone can relate! xoxo

My TED went from mild (only noticeable to me and my specialists and immediate family members), to moderate the same week I went hypO six months after RAI. I posted on here that week, because I was scared and feeling awful. Kimberly told me:

Hello - There was a study done in 2005 out of the UK that concluded that for patients with minimally active TED, RAI was *not* associated with a worsening of symptoms *if* T4 was administered early to prevent hypothyroidism. To my knowledge, this study hasn't been replicated, but it will be interesting to see if you receive other responses from people who have had this same experience.

I was almost annoyed at first (since my endocrinologist never started me on T4 - why would he? I went from euthyroid/slightly hyper to seriously hypo within a week or two, no warning, very sudden) but later appreciated her comment. I think Bobbi chimed in that this research was never replicated or something to that effect. Either way, MY TED became quite bad the same week I went hypo. Whether or not the two were related…we'll never know but I suspect they were.

I think your best bet is to see a neuro-ophthalmologist or an ophthalmologist who treats TED before you make a decision on RAI. Your endocrinologist should not be the one making decisions about your eyes. Pain and pressure can be just as serious as external swelling where TED is concerned. Your endo and ophthalmologist need to be in communication about your eyes and what, if anything, RAI could do. For me, the RAI had no effect on my eyes but the wacky thyroid levels did.

As for the RAI, I have a small dog who went to his sitter for a long weekend (Friday morning to Monday evening) as I had my RAI on a Friday afternoon. Can you do this instead of going to a hotel? Either way, it might be a nice getaway to spend a weekend on someone else's maid service! But yes, you definitely don't want your cats around you for a few days. Just send them to a sitter or nice boarding facility (I sweat - the place my dog is going this weekend while I'm at an out-of-state wedding is nicer than my hotel!). Or splurge and let them stay at home while you go to a swanky hotel.

What the patient probably meant is that your endo is good at determining how much RAI to administer in order to kill your thyroid…but I wouldn't listen to other patients in that arena. It's too vague. My endocrinologist's office was licensed to administer nuclear medicine, including RAI. However, I was working for the hospital and my insurance required me to go to the hospital's nuclear medicine department to take the pill. It is not uncommon for endocrinologists' offices to administer the RAI, but I was under the impression that - if I had done it at the office - a nuclear medicine specialist would be the one actually handing me the pill, not my endo. Ablation is not really a procedure - it's the act of taking a capsule of I-131 to destroy the thyroid tissue. By the way, I received 10 mCi (considered a small dose) and it did the trick. I am 18 months post-RAI and have no remaining thyroid tissue.

When you say you are in pain, are you referring to more than your eyes? RAI was painless for me except for the strep throat feeling that started on day two post-RAI and lasted about 36 hours. For that, I just took Tylenol and drank lots of broth, tea, and sucked on hard candies round-the-clock. No biggie at all.

I'm not at all familiar with how or if Graves reoccurs after RAI. I know this is some disagreement about whether or not we have Graves once we are treated, but I prefer to tell people I'm in the Graves club rather than the hypothyroid club to avoid as much judgement as it seems nowadays everyone likes the blame their laziness and obesity on “a thyroid problem.”

Good luck!

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

Hi gatorgirly, a couple of questions and clarifications for you regarding Graves' and RAI and TED that came up in your last post.
I will say at the beginning that this may be entirely a communication issue,and the points I raise below are based on what I read in your post.

I am hoping Kimberly will see the post, and send the very recent studies and references on this subject of TED and RAI. This,in my recollection, contradicts to what you attributed to her in the reference in your last post. That was seven years ago.

To begin with, I do not think there is a final recommendation AT THIS TIME on the standard of care for a person with TED, whether or not to proceed with RAI, and what treatment to give before RAI if it is done. As I recall, a round of prednisone has been suggested pre RAI if that route is taken. But in the past 2-3 years, much more caution has been raised with deciding to proceed with RAI if TED is present prior to treatment. I really don't know one way or the other, but I believe she has referenced some valid studies, and recent information, that definitely have shown that if a person has existing TED, especially any degree except very mold TED, that there should be a lot of reservation about administering RAI.

In another area, it is my impression, despited some of the posts which infer otherwise, that other than anecdotal reports, there is no evidence that being hyper or hypo great impact the severity, or degree of TED. My information is also anecdotal, for I have simply asked the endocrinologists who tread Graves', and the members of a couple groups of ophthalmologists who treat TED, and the conclusion from both groups was that (other than having reservations about moving forward with RAI when a patient has significant TED) neither specialty pays much attention to this relationship. It has certainly been my experience, which is, of course, just my experience.

I also checked with the nuclear medicine department. Maybe they are wrong, but they basically said the it would be a cold day in hell when I131, ie RAI, was managed and administered in the endocrinologists' office. They said they were not trained or legally allowed to do it,not did they have the equipment and resources to do it. That they were not nuclear med docs.
THat it was a Nuc Med procedure. So all of this puzzles me.

So, in summary, I raise these points to try to clarify them, if this is possible.
One other point. When a patient does have a thyroid SCAN, they also go to Nuclear Medicine for that. It is not done in the endo's office. Unless, of course, there is a nuclear medicine department, with the proper machines, and nuc med docs who are radiologists trained in nuc med, in the same office. But I would posit that is highly unlikely. Endocrinology and nuc med are different departments.

Regarding dose-it is my understanding that the endo suggests the dose to nuc med, based on scan results, and frequently there is disagreement from nuc med regarding the dose, and the come to some happy compromise about it.

I have not taken the time necessary to explore either of these topics thoroughly.
Shirley

From my experiences talking with my doctors, also, if thinking of Graves being there post treatment, my thyroid eye doctor explained to me last week that at least 3-5 years post RAI those antibodies are active. Why even though he said that post RAI that hypothyroid should not considerably worsen TED yet he has specifically said in past that thyroid levels need to be as balanced best as possible for the patient. So I hear from these doctors well antibodies are still there post RAI or TT yet a hypothroid condition is most of the time created post treatment yet we become eurothyroid when we go on the right amount of thyroid hormone; which in working with a good doctor we are then neither hyperthyroid or hypothyroid as long as our thyroid levels are kept in the right lab value ranges. Hopefully this makes some sense!…beach

I'm not an expert, just a patient who went through RAI. My uptake scan was done at my endocrinologist's office. There is a nuclear medicine department within the office, since the facility houses internal medicine, endocrinology, rheumatology, infusion therapy, laboratory, physical therapy, sleep studies, and of course, radiology (under which nuclear medicine falls). So although you say this is highly unlikely, that was the case at this particular office. It was like a mini hospital. The only reason I couldn't have my RAI there was because of my insurance - I worked for the hospital and my endocrinologist's office was not affiliated with the hospital, although the physicians had practicing rights there (you as a nurse will understand this, others may not - semantics). As we know, medicine is practiced differently all over the country. I think you are the one who posted that your oculofacial surgeon ran all of your TED tests, when usually a neuro-ophthalmologist does that. In Florida, where the RAI was given, I had my choice between having it at my endo's office or the hospital. There wasn't much of a choice between paying out-of-pocket and letting insurance cover it, but it was a choice nonetheless. In Florida, I had a neuro-ophthalmologist. Here in MA, I do not. My TED is stable and in the cold phase, so my surgeon is handling all testing leading up to my OD.

My endocrinologist recommended 10 mCi to the nuclear radiologist. The radiologist refused to give me anything until he spent two hours reviewing my full medical history. It was frustrating and a long wait in the hospital, but I'm glad he reviewed everything before giving me the pill that would destroy my thyroid. Like you said, there was probably a bit of discussion between he and my endo during those multiple phone calls back and forth. My endo felt I only needed a small dose based on my uptake results, and the radiologist agreed in the end.

I don't think I said anything about a standard of care for people with TED. I only gave my personal experience. I forgot to mention that I did take prednisone a few days before and after RAI to reduce the likelihood of a sudden TED onset, and it worked for that time period. My TED was very mild before RAI, and that's why my team decided to proceed. I did not want surgery for a multitude of reasons, and remission via ATDs was not happening - we tried.

As I stated, there is no evidence that suggests being hypo caused me to develop moderate TED. Also as stated, I felt it did because the timing was simply just too close in my case. Again, I'm a patient and not a doctor, but I know my body. The same week I started feeling all those hypo symptoms was the same week my eyes swelled out of my head with extreme pain. I got labs done that week confirming hypo and also had an MRI that week confirming TED.

I'm offering VanIsleGal my personal experience as that's the best I can do without being a physician. I know for me personally, this board has provided first-hand knowledge of Graves and related procedures and issues that my physicians can talk to me about, but not having lived it, they don't always provide the entire scenario. For example, no one from the endo's office or the hospital's nuclear med dept ever told me to suck on hard candies after RAI, but multiple people on here did. It helped a lot. And no one from my surgeon's office told me about sleeping with my head elevated after surgery, but I think it was you and someone else who did.

I didn't think we needed to provide full disclosure in every post that we are speaking from experience rather than medical expertise, but here is that disclosure: I am speaking from experience rather than medical expertise.

I hope that Kimberly will provide the study she referenced in my post from last summer.

I know what you are saying Gatorgirly. I'm careful only because on some other forums people talk like certain things are gospel and I think all of this Graves and TED experience is also based on personal experience and there are studies done out there and also on what each individual's endocrinologist / doctor feels about how to go about this or their experiences with Graves or TED. I have been to four endocrinologists, one internist, ENT surgeon who would have done a TT for me, and a Integrative doctor (who is also a regular MD),and they all had somewhat differing opinions on Graves and/or TED treatment based on their experiences in their practices and what they learned through the years. Similar as there are standards yet different. Also the thyroid eye doctor who prior was an internist and he has a wealth of knowledge as I was kind of surprised yet he specializes in TED also so should know! Anyway, I always now back myself up with medical journals or what the AACE or ATA says because dealing with so many doctors myself, I find this works with them. So why I always also like what you are saying, I tell by experience and even if the research shows xyz, we can each experience what goes on our journeys differently. I have discussed this to the max with these doctors as when they see me coming they hide I have so many questions yet this is the only way I learn having an autoimmune disease which has affected my eyes also. Another practitioner said to me, your doctors don't offer to you what can possibly happen post RAI or what you need to do like the hard candy thing or what happens as far as when you get signs of hypothyroid(?); no I say, I found out for myself either asking tons of questions or researching sites based on other's experiences. In all my doctor visit experiences with this disease, sadly, no one prepped me very well and I'm still asking questions. Well in my mother's day it was just a “trust me” thing with the doctor and just that things should be fine and go on your way and deal with whatever after! I kind of like to know why to be prepared and forums like this one is very beneficial to me and people like gatorgirly and so many others I too have learned a lot from and I keep learning! I too like to cover myself also as I'm not an MD. Only my experiences….beach

Also my thyroid eye doctor said people who do develop severe TED after RAI with having moderate TED like myself prior, the percentages are very low.
That I am worrying needlessly and to just get regular check-ups every 6 months now 3-5 years post RAI when antibodies are most active. So I said no worries; he said never say never as of course he said anything is possible. Nice. I unfortunately know of people who did get TED post RAI who did not know they are inclined to. I think there is all kinds of information out there based on personal experiences though re: TED and RAI here and on other forums. For me post RAI so far so good and I'll see where this journey takes me!…beach

Gatorgirly, I was simply trying to understand as much as I could. No confrontation, no nothing, intended.

I write about my experience, too, am not a medical expert. Just sharing my perceptions and trying to "get it.

I genuinely was trying to learn. It certainly is true in all of our health care worlds, that we can get 2nd opinions from different doctors. Not too mention third and fourth.

I developed severe, super TED 50 years after I had super severe Graves.
I hope this does not happen to anyone else. IT is ruling my life, and making me miserable every hour of every day.

I am writing a brief not now, for my old computer and my new computer (i am at the Mac store now) will both be gone for 1-2 days. I did not want to wait to write a short note.

If apologies are needed, the are certainly given.
Bye
Shirley

Shirley - no apologies needed. I knew what you meant and hope I didn't offend either. Congrats on the new Mac…I'm jealous! You deserve it.

Beach - sometimes it's exhausting to explain myself and explain Graves to people who don't get it, even my primary care physicians. I've had several specialists tell me I seem to be well-educated on Graves and all things thyroid and TED. After 2 1/2 years of this, I would hope anyone in my shoes would be well-educated on their own disease but I guess there are plenty of idiots out there who chose to ignore their problems or take a single physician's word as gospel. I have to credit this board for that. Sure, I can do my own research but I have a busy job and better things to do with my free time, and I learn a lot of evidence-based facts and “insider” tips right here in this forum. Let's hope and pray that you never are in Shirley's TED boat or even mine.

VanIsleGal - as you can see, there are lots of different opinions and experiences but you and your medical team know you best. So take our words into consideration, but don't let our very personal and individual experiences sway any medical decisions you make.