[Gloriamve]

#1059733

My specialist wants me to have radioactive treatment I am not sure if I want this treatment can anyone tell me the side affects of this treatment I don’t want my thyroid removed either if I don’t have these treatments am I at risk to my health

[snelsen]

#1177150

In a word, absolutely yes, you are at risk. If you choose to remain completely untreated, you are in real danger.

It seems like you should begin by understanding Graves’, reading the references on this site, and make a big list of questions for your endocrinologist. When we are sick, we need to understand the pros and cons of the treatments. Many on this site have had RAI, many have had surgery, and a few are taking ATD’s. And, after treatment, we move ahead with our lives, taking the amount of thyroid hormone that our very clever bodies used to do without our help! before Graves.

Seems like there is a lot of learning and understanding that needs to happen for you so that you have a clear picture of what Graves’ is, and the treatment options available to you. You have named two of them, and the other option is continuing with ATD’s (anti-thryoid drug)
The standard of care over many years has been that the purpose of ATD’s has been to get us in a safe range (not hyperthyroid, which is dangerous) more to a euthyroid (normal) state with the amount of thyroid hormone we are producing. There is no defined time to be on ATD’s, but historically, it has been regarded at the interim measure to have us be safe to move forward with a permanent treatment. After being on ATD’s for a while, the treatments which has been regarded as permanent, have been RAI and thyroidectomy.

However, in recent years, a small number of people have remained on ATD’s, having both thyroid labs (and liver function labs.) As you may or have not learned by now, there are pros and cons, and risks with each treatment. With ATD’s, primarily at the beginning, additional labs should be done to check liver function and a CBC. The extremely small risk seems to dissipate
after a few months.

It would be helpful to know how much you do know and understand. Sounds like you have been under the care of your doctor. Are you on ATD’s now?
ARE you still hyper? (It is hard to think clearly when we are really hyper.)
Shirley

[vanillasky]

#1177151

I know it’s difficult to deal with because we all have it, but aside from Tapazole and PTU, you have either the option of RAI or total thyroidectomy,

Sometimes I try to pretend it doesn’t exist and I don’t have Graves’, but the antibody tests unfortunately don’t lie.

My decision thus far is RAI. No picnic, but like you, I don’t like the idea of surgery.

You can’t let a disease like this go because there are so many horrible things that can happen.

One is thyroid storm. That can be fatal. Another is damage to the heart muscle. Marty Feldman, who had Graves’ died at 48 because of a heart attack.

A friend of ours, had Graves’ and ignored the symptoms. It went into thyroid eye disease and now she is legally blind. Please don’t dismiss Graves’. It can be a devastating disease and just not feeling well, (being hyper) is Hell to me. I have just about lost my mind during that state.

Karen

[Kimberly]

#1177148

Hello – You already received some great info from Shirley and Karen. I would also suggest reading the “Treatment Options” thread in the announcements section at the top of the forum. That includes two good links that go into the pros and cons of each of the three treatment options.

This is an important decision, so you definitely want to research all of your options before making a final choice!

Take care!

[Zoya6]

#1177152

I agree with everyone else research, research, research. The more you understand the disease the easier time you will have getting to that normal range. I was diagnosed 7 years ago. I was in the thyroid storm. I chose RAI because that is what my doctor recommended. Afterward she put me on hormones to regulate my body. I just did what she told me. I didn’t take the meds the way I was supposed to didn’t like the way they made me feel (made me nauseous). I went a while feeling better but eventually I started having the same symptoms as before. I went back to my Dr and she let me know how devastating it can be when not taking the meds. I had no idea that even after RAI it takes sometime for the doctor to get the right dose. That’s why it made me feel nauseous. I am just now where I only need my levels checked every 6 months used to be every 6 weeks. I have done lots of research about this disease and now know it effects a lot.

My sister has recently been diagnosed and she takes me to all her appointments to help her with questions.

Again I cannot stress enough find out as much about the disease as you possibly can.

Good luck
Zoey

[Megtimhart]

#1177153

You have to do your reasearch. My wife was diagnosed with graves less then 2 months ago and we scheduled her surgery for monday. The main reason we choose surgery was because we want to start a family. If we went the RAI route the doctors told us it would be a mandatory 12 months waiting period before we could try to concieve. Surgery is faster depending on how fast our endocronologist can find the right dosage of meds. It all depends on your reasons for choosing one over the other. Ours was children so it was easy for us to pick surgery. Good luck!
Tim&meg

[Gloriamve]

#1177154

Thank you all for your kind advice . I am hoping if I keep taking my carbimazole I my thyroid will be cured I am hoping to avoid surgery. Thank all

[adenure]

#1177155

Hi Gloria,

Definitely take the carbimazole and get labs done every 6-8 weeks until your thyroid levels are normal and stable. Unfortunately, our thyroids won’t be “cured” per se. You might go into remission and be able to maintain normal thyroid hormone levels without the carbimazole at some point. Usually, after you’ve been on the meds. for a year or so and stable, your doctor might try to slowly wean you off of your dose and see how your levels are. Some people go into remission, some relapse. Some go into remission for years, but then relapse and go hyperthyroid again. That does seem to be the norm unfortunately. I don’t know many stories of very long term remissions where a person has never relapsed. If that happens though, you could always start the carbimazole again.

I think many people choose RAI or surgery because they get tired of the roller coaster and frequent blood tests/ dose changes with the ATD’s. After surgery or RAI, blood tests and getting the Synthroid (thyroid replacement hormone) dose is important, but it is easier to manage and stabilize than ATD’s.

Do your research and find the option that feels best for you and is medically sound for your circumstances.

[Gloriamve]

#1177156

Hi members I have been off all medications for my graves disease and overactive thyroid for three months feeling great now . Does this mean my thyroid is cured now and if not when would I expect another episode . If I am cured does this also mean no more graves disease. I find it all a bit confusing as suddenly I am cured after five months of feeling terrible. Thank you for your replies. Gloria

[snelsen]

#1177157

I think your best answer is right above your last post. The one from Alexis, or adenure. ANd the take your question to your doctor, along with her post for your own background.

Rarely, if ever, we are cured from Graves. I think it is WONDERFUL that you have been off meds for three months now, and feeling great. It is possible you may be in remission. It is equally possible that Graves’ and hyperthyroidism may come to visit you again. It is certainly worth a try with no meds, if you are feeling like your ole’ self Maybe you are one of the very lucky ones!
But be aware of your Graves’ history if you begin to recognize the hyper symptoms,and get some labs.

You have been taking the carbimazole only 2-3, weeks, is that right? ANd now you are off it completely? That is not very typical. Has your doctor done another set of labs since you began the drug? Was the decision to discontinue the drug after a bit over 3 weks, your doctor’s decision, or did you feel better and decide to stop taking it?

Shirley

[Kimberly]

#1177158

Hello – Agree with the comments from Shirley and Alexis. I would really encourage you to get a set of labs run to see where your thyroid hormone levels are *and* your antibody levels.

It is possible to reach a temporary state of euthyroid “normal” levels after a period of taking anti-thyroid drugs like Carbimazole. *However*, If antibody levels are still high, a recurrence of hyperthyroidism is highly likely. And you really want to catch this sooner rather than later, due to the risks of remaining in a hyperthyroid state (including bone loss, muscle wasting, and a significantly increased risk of thyroid storm, a potentially life-threatening condition).

Take care – and please check back to let us know how you are doing!

[mwhitney]

#1177159

Hello, I did the RAI 3 weeks ago.

I should tell you that the meds are not a cure for Graves, you can prolong other treatments with them and hold down your levels, but it will not make it go away forever.
My understanding of the treatments for graves is that the end result is being hypothyroid either eventually with RAI or surgery.

As I said I did RAI 3 weeks ago and I was VERY scared and concerned about it. I felt better after I was able to call the hospital and ask the technicians any question or concern I had about it, right down to the mouth guard I wear at night. haha. They told me that after 3-4 days any radiation left over dissipates. You might consider calling the local hospital to see if you can ask questions.

After 5 weeks on methimazole, I had to make a quick decision, without more time to interview surgeons, I had to go with RAI. The med made my very sick. I didn’t like the idea, but my time was over and a decision must be made. If you’ve done an uptake, it’s pretty much the same experience- go in, take pill, go home.

Mine was completely uneventful, other than staying away from people, it wasn’t that inconvenient or scary as it sounds, the hospital gave me a very small list of things to follow, most of which were hygiene related and anything that touched my nose or mouth to be disposed of separately.
If anything I took a nap my first day and drank more water than I knew I could.

And I found out that my RAI has worked wonderfully, at 2 weeks my labs were already at the high range or normal, I am already out of the hyper zone. I don’t think this is a typical case. I’m going in for tests tomorrow, I’m hoping I dropped lower again so I can start the synthroid.

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