[Bobbi]

#1066616

It is always scarey to contemplate the removal of the thyroid. Even I had qualms about RAI, and my mother had been made healthy by RAI about twenty five years before I became ill with Graves. I had seen it work, and work well, but I was still very nervous about it.

The main thing you need to keep firmly in mind, as you mull over your options, is that people can live healthy lives without a thyroid. I have several friends who are thyroid cancer survivors, and I never would have been able to tell from their energy levels and overall health. They have had every last vestige (hopefully) of thyroid tissue removed via both surgery AND huge doses of RAI, and yet they thrive on replacement hormone. So, if your experience is leading you to tend towards removing your thyroid, do know that you can expect health as the end result.

I know that the decision you are contemplating is a tough one, and I wish you well.

[kristi7877]

#1018709

I was diagnose with Graves Disease back in June of 2007, went on Tapazole for a little over a year and went into Remission in Sept 2008 and then back on Tapazole in Feb 2009 and came off in Sept 2009 as I went into remission again. Now I feel like my hyper is coming back. Had labs done 2 weeks ago, Total Tsh? I always confuse these was normal but I was showing a bit hyper. I feel like a head case, really moody lately. Heart palpitations and my eyes are irritated. I will be 33 in July and want kids soon but also want to feel better. Toying between Surgery and Rai. Both scare me but I know I dont want to keep feeling like this. I think I stress myself out more and make myself feel worse over this!

[cathycnm]

#1066617

Kristi – I was also scared about RAI. Unlike Bobbi’s story about seeing a mom heal – my mom died of stomach cancer 2 years later (which had everything to do with things OTHER than RAI). Still, she told my sister and I that maybe, just maybe, it was because of the RAI. I am now a nurse practitioner and have read the research – RAI is in no way is to blame for her cancer. Still, there was major apprehension on my part just because of that. Two years later, I would not trade this route of treatment. I feel totally normal physically and am now healing other pieces of my life (social support systems).

Also – yes, wait until you get better before you conceive but you can be encouraged that pregnancy can be pretty normal other than more frequent labs and dosage changes. So good luck with that part – I hope you heal rapidly and can go on to achieve your dreams. I am a nurse-midwife so I always cheer on those babies!

[Kimberly]

#1066618

Kristi – Here are a few other issues to consider, as you discuss options with your doctor…

1. You mentioned that you have some eye involvement. At last year’s conference, one of the presenters shared a study that approximately 15% of patients who had RAI had a worsening of eye symptoms. This risk can be significantly reduced by taking a course of steroids prior to the RAI — although steroid use does come with its own pros and cons.

2. Again, at last year’s conference, one doctor mentioned that the risk of complications (liver or WBC issues) with Anti-Thyroid Drugs decreases over time as you continue to take the meds. However, if you re-start the meds, your risk is the same as a brand new patient. This is still a *small* risk, but one that should be considered.

3. I have heard mixed reviews from the presenters at our conferences about the value of antibody testing prior to withdrawing Anti-Thyroid meds, but you might discuss this with your doctor. One theory is that withdrawing the meds while the antibodies are still active is more likely to result in a relapse. Also, I’m sure that doctors have different definitions of "remission" — but one of the docs at our conference said that his definition of remission was a period of one year with no meds and normal thyroid levels.

Sorry if I’ve made things *more* confusing instead of *less* confusing — but these are issues that you will want to cover with your doctor when making a decision on a treatment choice.

Best of luck!

[kristi7877]

#1066619

My Endo called me on Friday and Im showing hyper again. She had asked me what I wanted to do and I told her I would like to go the surgical route. She seemed surprised and wanted to know why I didnt want to do the RAI? I told her I was actually scared by it as I want to plan for kids in the summer. She said there shouldn’t be any issues for wanting to try in August if I do this now. I had mentioned about my eyes and I was scared also if I try the RAI and it doesn’t work for some reason since I didn’t respond well to the meds with my luck! I know have a consulation Thursday. Now Im more confused and frustrated as I really dont know what to do. I want to be fixed and feel "normal" my moods are ridiculous.

[Ski]

#1066620

Just don’t let your impatience force you into something you believe will be "quick." There is NO quick fix, no matter what we use ~ everything requires some "wait and see" ~ so don’t add to your frustration by going ahead with a treatment you really don’t want to use. We’re SO lucky to have choices. Try to find some peace and make your decision carefully. You must treat this, you can’t let it go, but do all your research and make sure you are doing what you want to do. It’s true that you can probably still try for a pregnancy this summer if you choose RAI. The MOST important thing is to be regulated, stable, at normal levels of thyroid hormone ~ that gives your pregnancy the best chance of success. You can reasonably achieve that with either surgery or RAI.

[Bobbi]

#1066621

One thing that may help is if you try to block your emotions (briefly) from this decision you are making. Make a list of known, factual pros and cons for both RAI and surgery, and try to put things into perspective. Stick as much as you can to facts, not fears. For example: Neither RAI sucess, nor surgical success depends in any way upon a good result with the antithyroid meds. Your endo may try to address your fears about RAI with factual information you need to hear to make a wise choice for yourself. You might shut him/her out if you allow fears to rule.

Second, start researching surgeons in your area. In order to have a safe thyroidectomy, and have the highest chance of not having damage to parathyroids or your voice, you need to go to a surgeon who (1) does a lot of thyroidectomies and (2) has a small percentage of adverse outcomes. Depending upon where you live, that may be easier (or harder) than for someone else. The thyroid cancer support group (ThyCa) online can provide help with finding a qualified surgeon in your area.

I wish you good luck with your decision, and hope you are soon on the road to good health.

[kristi7877]

#1066622

Well I met with the surgeon yesterday and very impressed with him, very nice and supportive. Basically now the ball is in my court in regards to a more permanate solution. We went over all the concerns that I was having with the RAI and my reasonings for not doing it because of my eyes, wanting to start planning for pregnancy at the end of August and just my overall fear of being exposed to radiation and developing cancer down the road. He advised that graves and hyperthyroidsm is treated very successfully with the RAI and if he were to make the choice personally for himself he would do it and be comfortable with it. He said with anything there are risks. Most of the surgeries that he completes for a TT is due to nodules and cancer, on occation he said he does them for women in their child bearing years who are planning a child in 1-3 months but in my case if I went the RAI he wouldn’t forsee any issues. He looked at my eyes and hes said not meeting you before I would not even be able to tell that you had Graves. At the end, he said he would do whatever I wanted, if I wanted the surgical route he would be more than happy to help me. He suggested that I speak to my Endo again with my concerns over the RAI and then make a decision. I was so deadset in doing the surgery that when speaking to him about everything, RAI doesn’t seem so bad and I can go with the plans I have set for myself. So now Im going to take the weekend to think and waiting for a call back from the endo. Im so grateful that I found this discussion board. Ive learned a lot from many on here and it makes me feel better that I am in good company with people who understand what I am going through.

[snelsen]

#1066623

Hi, I am so glad you had a good experience with the surgeon. I sure can relate to your dilemma and concerns about either RAI or surgery. Knowledge is power for me, so the more I know and understand, the more confident and secure I feel. You are in a good place right now, have a nice weekend to mull it over, (but there is NO deadline!) and you know that both options are good ones! You’ll make a good decision, and it will be the right on.Yea!
I love this site, it has been a great help to me. I was so afraid of having and orbital decompression(OD) and this site helped me so much. I hope I can provide the same help to others! I am ten days out now.

[artbytr]

#1066624

It is a scary choice to make, I chose to remove mine because the meds weren’t working and my heart rate was at times 140, and the tremors were awful , it was scary, but it was easy pretty painless ( I have had a few other surgery’s not related,) but my father years ago had RI and is 72 and healthy ” title=”Smile” /> , I’m sure that didn’t help much but I say go with your gut feeling, I’m happy I removed mine but I know others whom have had RI some 2 times, but it worked also.
and 2 1/2 yrs in I can say hang in there and Keep smiling,

[kristi7877]

#1066625

So I opted for surgery! March 1st. Got some slack from a friend who did the RAI, saying Im out of my mind to do the surgery as Im young. My thinking is, that it will be over and done with, either way I will end up hypo so lets move on and be done!

[Ski]

#1066626

ALL of our treatment choices can return us to health. Any choice we make will be second-guessed by those around us, but we’re the ones who have to live with it, so we get to make the choice for ourselves. I’m glad you feel good about your decision!

[leggymummy]

#1066627

Hi, hope your OK… ” title=”Smile” /> I am 30 and had two doses of RAI (think thats the correct abbreviation) when I 19, then again at 22. I now have hypo, and have thyroxine with regular bloods about every three months. I never got pregnant in my early twenties I was a mess emotionally and not very good at coping with a problem NONE of my friends had heard of. It feels great not be hyper, they monitor my bloods and I got regular periods and ovulation from about age of 22, ( I did not have any until 17 nearly 18) I just never thought I could get pregnant after being so ill. I have two lovely boys whom have been brought into this world with me taking my thyroid meds everyday and I feel fine. I would say go for it, I have to take tablets for the rest of my life but it is so simple, it could be so much more worse. My babies are healthy, very very bright (advanced in some ares) and doing fine, no thyroid problems. My TSH is a little high but I feel good. I have never put any weight on but I have a naturally fast metabolism so no problems there, better to feel well than live in hyper it is very emotional and stressing to be there I do understand!! I hope this has answered your question I am new on here but I have been living this for 16 years now so if I can help pls let me know, I’m Jo xx

[enough3]

#1066628

I’m 31 and had RAI in Nov. All and all I had a really good experince. I, too, thought about surgery, but I’m soooo glad I did not go that route. I personally thought the risks were much greater having surgery. The Surgeon I met with said that he would not want me to go that route either. I have had some issues with the eyes, but not severe. You would not know that I have Graves by looking at them. My eyes look much better than when I first got DX.

Good luck with your decision! ” title=”Wink” />

[kristi7877]

#1066629

Thank you! I feel more comfortable with my decision now. I flip flopped back and forth for a couple of days because I did have the RAI scan and uptake all set for next week. Im just all set with it. Lol. My eyes have been really dry, gritty, bloodshot and irritated for the past 3 weeks. They were doing good for a while. I think back in 2007 the first time the meds failed I should of gone the RAI route. However this is the best thing. Im really comfortable with the surgeon and although there are risks like anything, everything Ive read is that they are pretty minimal.

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