[catstuart7]

#1059057

My doctor acts like RAI is no bid deal. She even denies that there’s any increased cancer risk and that the risk of the eye symptoms getting worse is no big deal. Yet on the internet I’ve found multiple sources saying there is a small cancer risk increase and absolutely the eye symptoms can get far worse. I’ve also found story after story of people saying they are never the same after, getting their replacement hormone sorted is a nightmare, reactions to replacement hormone with problems going on for years. I do not want to go through that. My doctor is well-respected and hard to get in with, so I want to trust her and I don’t want to alienate her. Yet….can all those people on the internet be wrong?

[elf]

#1171848

The simple answer is – because people who feel better (healthier) don’t need forums or places to vent anymore. We don’t go to a diabetes or urology forums to exclaim that we have no diabetes or kidney problems. People who have had RAI successfully don’t need to hang around forums to announce how healthy they are, neither. I certainly drop by this forum only once in a blue moon. The absence of positive RAI experiences is a good thing, or there should have been proportionally more complaints on the net.

Graves RAI recepients receive a negligible doze of I131, comparing to thyroid cancer patients (10-20 mci versus 500-1000 mci), yet the cancer patients are grateful to their recovery, while the Gravers are so preoccupied

[NLBatten]

#1171849

Yes what elf said. Well said….

[catstuart7]

#1171850

Elf, lol at “the Gravers” yep….preoccupied. Doesn’t take much for me to get preoccuppied and filled with anxiety these days. I saw in your sig that you did have the RAI done. Were you happy with it or did you ever wish you had the surgery instead?

And yeah, I guess it would even be obnoxious to go about announcing one’s great health on message boards with struggling people!

[beach45]

#1171851

I like what elf said and I have seen in past posts Bobbi also saying similar about people who had success you will not find them posting on forums.

I have discussed with people I know here in my area and many had RAI or TT with much success and have gotten on with their lives.

I had my eyes checked prior by a thyroid eye doctor, not a regular eye doctor, prior to RAI and with my moderate TED he said go ahead and have it done. They told me very rare do they see problems that we are seeing on the Internet that people are having. It is also important that people do not smoke because it can make TED worse although I’ve seen people do RAI who smoke a lot and no problems years later post RAI!

Eye problems can also occur due to thyroid level problems and people can also develop TED many years after thyroid surgery. The people I know who had RAI 20 and 30 years ago never developed any cancers and feel well and look terrific! I’m sure there are medical studies on this too on patients post RAI.

I had RAI 2 weeks ago and had some hyperactivity and I am as of today doing very well. I feel more normal than I have in 2 years. I am not saying that there will not be problems as I am too new in this game of post RAI. Yet I know of others who had it and looked at me like I was crazy for not having it done and why was I torturing myself being on Methimazole for 20 months of up and down and was miserable. Of course too we are all different and like others have said the people who have major problems are the ones you are going to find posting on different sites about how terrible RAI is and sometimes I find some very positive people yet most of them have lives and do not have the time to be posting information on the Internet. This disease also is not easy to deal with and RAI and TT are not always the magic cure and even my current endocrinologist said he cannot guarantee happiness post RAI. Yet if a person is working with a good doctor who also listens, it can make the journey easier.

Best of luck.

Beach45

[katherinesc]

#1171852

I guess that my “worry” with RAI is that it sometimes has to be done more than one time, correct? It doesn’t ALWAYS shut down the thyroid with one dosage?? Thanks for the input.

[beach45]

#1171853

I am only going by what my endocrinologist told me that if the dosage is calculated correctly after the RAI Uptake is done, then there should not be a problem that a second dosage is needed; plus another endocrinologist here who I know gives a very high set dosage to make sure that the thyroid dies off (30 millicuries). Unfortunately, it may happen yet I thought stats I saw showed not very frequently is a second dosage needed yet a person would really need to discuss with their doctor or do research on stats. Plus unfortunately is it not an exact science and is a reason why the endocrinologist I mentioned gives a set amount that it more likely will work the first time; yet seems all the doctors I know do it differently. I am not sure if there is a discussion on this in the archives?

[Bobbi]

#1171854

Actually, I think the “failure” rates for RAI and thyroidectomies are about the same. At least, they were the same when I was diagnosed and treated 15 years ago. The reason is that if too much thyroid tissue is left after either procedure, the antibodies can stimulate it to produce too much hormone. Some doctors, when I was first diagnosed, tried to produce “euthroid” conditions (i.e. normal thyroid levels) with RAI, or sub-total thyroidectomies. This is always a fragile guess. Sometimes too much is taken out any way, and replacement hormone is needed. Sometimes too little is taken out, and the patients remain hyperthyroid. I once spoke with a surgeon, for example, who believed he could guess quite accurately about how much thyroid tissue to leave behind. Nowadays, given the failure of these euthroid attempts, it seems like most of our doctors go for “ablation.” That term means the utter destruction of the thyroid; not leaving thyroid tissue behind. With ablation there are fewer failures.

As mentioned in a previous poster, determining how much thyroid tissue to take out is a bit of a guess, based on the size of the thyroid, and the percentage of uptake (both factors provided by the uptake and scan tests). But I only had 8 millicuries, and I was hypothyroid in 5 weeks and on replacement hormone. (I had a rather high uptake, and a rather small thyroid.) So, we probably do not need a set dose six times higher in all cases.

[Kimberly]

#1171855

Hello – Just a quick note that the current practice with thyroidectomy is to do a full thyroidectomy – and the current practice with RAI is to give a “fully ablative dose”, meaning enough of a dose to destroy all thyroid function. The theory with both procedures *used* to be that you could find a spot that was “just right” and leave enough thyroid function to keep the patient from needing thyroid hormone replacement; however, the recurrence rate of hyperthyroidism ended up being much higher.

All three treatment options — RAI, surgery, and anti-thyroid drugs — have risks. The key is to do your research and select the treatment option that you are most comfortable with.

[catstuart7]

#1171856

Hi all, thank you so much for your responses. I wish I could respond in more detail but I am having problems with severe brain fog recently.

But Beach, I send you a foggy high five! So glad you are doing well post RAI

[beach45]

#1171857

Catstuart, thanks and I’m sorry you are feeling foggy.

I hope to post every now and then my post RAI progress as I’m very new at the RAI game right now yet so far so good; some joint issues and rapid heart once in a while and headache yet I give things a lot of time as for me this disease takes a lot of time and patience yet so many get there and then get on with their lives.

Take care….beach45

[Author]

Posts