[Anonymous]

#1020346

Hello All,
My name is Wanda and I’m new to the board. Reading your posts has helped me a great deal.

I was diagnosed with Graves’ Disease in 1995 and have been hyperthyroid for at least eleven years. After this length of time I feel that I pretty much know what to expect and have adjusted to being hyper. I have been taking Tapazole and Propranolol off and on during this time. Also, I went into remission for a while.

I have been pressured to be treated with RAI again and again. I have always said no. These docs are very pushy. I feel like I’m simply trading one set of symptoms for another that is unfamiliar, and frankly not attractive. I’m not down for the rollar coaster ride of trying to get euthyroid after RAI. I’m weighing the options nevertheless.

One question in particular has been plaquing me. If I have to take such precautions after RAI to keep others out of danger- why is this not dangerous to me?

Also, a great many of you have said you have joint pain and muscle aches, weight gain, and absolutely no energy- having to take naps between the car and house.

Is it possible for the RAI to leave some of the thyroid functional so that it isn’t necessary to go hypo?

Thanks so much for any feedback.
Scared and pressured,
Wanda

[Anonymous]

#1076836

Hi Wanda

Let me see if I can answer your questions for you. I think the reason the doctors seem to be pushing RAI on you is that being on anti thyroid drugs after a time don’t solve anything. As you said you have been on and off of them several times and have already been in remission. To go into remission a second or third time is rare. Now they want to put a stop to the fact that you have been going hyper after a time.

After you have RAI you really aren’t a danger to other people or yourself. Just the chance of other people and especially small children possibly being expose to radioactivy that can be avoided. You really aren’t not getting a huge amount. People that are treated for thyroid cancer get a much larger dose then we do. It is just a precaution. We do not set off airport alarms or anything like that. It is just like the exposure we receive when we would get an x-ray. That is all.

Yes afterwards there are some people who have problems. You need to be aware that the people who post here are the sick ones. The ones you do not have problems do not post, or once they begin to feel better they move on and do not post on the board any longer.

It is still your choice and yours alone as to if you want to receive RAI. If you decide you do not then that is what you have decided. Do not let the doctors push you into anything you do not want. And don’t think of it as pushing but suggesting that this is what they feel is best for you now. They need to let you know what your opions are then you decide.

Diane B On-Line Facilitator

[Anonymous]

#1076837

Ohio,

Who in the world told you that after RAI you were going to set off bells at the airport for 3 months? Not true.

[Anonymous]

#1076838

Hello Wanda,

My thyroid was removed by surgery. The choice was only because I have thyroid eye disease, otherwise I would have done the RAI. It’s been a year since surgery and I’m still fine tuning my replacement hormone dose. I have had joint pain and muscle aches, weight gain, and times when I’ve parked my car to take a nap. I’m better off than I was two years ago but the improvement has not been as fast as I had anticipated. I had been suffering from Graves and Hashimoto’s for a long time before diagnosis — perhaps this is why some of us take longer to heal. I suppose if I had used RAI as a method of treatment and ended up where I’m at, not well yet — I’d blame RAI.

BTW — I’ve taken three airplane trips since being diagnosed with Graves and set off the alarms every time, before and after surgery. Go figure.

If you don’t want the RAI there’s always the surgery. I thought it was a very easy recovery.

Linda

[Anonymous]

#1076839

Wanted to answer your question, I did earlier today but for some reason the post is gone, my Endo is the one that told me that and advised me that I would have to carry a card stating that I had gone through this procedure, I see that someone else has posted that they set off the bells and whisles during their travels, Don’t know what is correct, in my research I have found mention of this in other sources.

[Anonymous]

#1076840

Just one adjustment to the good advice Diane gave you: it is possible, depending on the calibration of the machines used in airports these days, for airport radiation detectors to set up an alarm SHORTLY after someone has had the RAI treatment. Or not. We’ve only heard of it happening rarely and I don’t know if that is because people usually are not travelling right after RAI, or if the machine calibration is a major issue. But, people have been advised to carry a doctor’s note if they are travelling within weeks of RAI, not “months,” just to avoid hassles. The I131 we are given in the treatment form has a half-life of only 8.1 days. We get — as Diane told you — a relatively small dose of RAI. Of that dose, a portion will just flush right through your body (your uptake test will tell you what percentage of the dose should stay in your thyroid) — after that, every week (well, truly every 8.1 days) half of what is in the thyroid is gone. So there is only 1/64 of it left after six weeks, and 1/128 of it after seven weeks, and so on. After five half-lives, scientists believe any radioactive material is essentially gone, from what I’ve read. Whoever gave you your info was only partly right, in other words.

I had RAI, and it made me well, and I’ve regained my health. My mother had RAI over thirty years ago, and, the same held true. Please do not let the scare-mongers on the web panic you with half- truths and horror stories. If you have questions about the validity of what your doctor is telling you, you can get your best advice by consuling with another doctor to get a second opinion. There are potentially three treatment options — although not all of us should do any of them. There can be extremely good medical reasons for doing one over the other. My only advice is that you focus your attention on never being hyperthyroid again — not even for a short period of time — and doing whatever treatment your doctors suggest for accomplishing that. Having hyper levels of thyroid hormone is HORRID for you. And over time, repeated bouts of hyperthyroidism can seriously undermine your total health.

I do wish you good luck and good health.
Bobbi — NGDF Online Facilitator
Bobbi — NGDF Online Facilitator

[Anonymous]

#1076841

Thank you very much for the statistics on when the radiation treatment leaves the body, what you are saying makes a lot of sense, why my doctor said three months, I don’t know, sounds like it only really the first 8 days that I will need to worry about, thanks for the peace of mind on this subject.

[Author]

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