need help with decision on treatment

[tracybug2002]

I have had Graves disease for about 5 years now and am getting ready to get treatment with surgery.   I don't know how to put this but I am looking to see if I am on the right track with getting the surgery over the RAI treatment.  I just want some personalized advice but it seems when I do want to talk about my concerns with my Dr. he teases about me overreacting or "overthinking" the options.  
My concern is I will not go into remission with the medication, its not making me feel better so I have to choose an option because I've been feeling really bad lately. My primary care physician doesn't agree that nothings been done for me yet.  So my Endocrinologist put me on 3 methimazole and one synthroid to shut down my thyroid and supplement.  I will be seeing a surgeon but it seems suggested against to do surgery if RAI is available to me.  This is what I don't like about RAI....
I have two small children ages 2 and 3 and I'm an at home mom, it would be nearly impossible to stay out of contact with them for the time frame that I need for RAI
I am going to be 30 next month, young and don't know if I want more children.  I don't like what RAI can do if you get pregnant within the 6 months to a year time frame.  I conceived my daughter taking precautions and it can happen again.  
I don't like the ratios and concerns with patients that need the treatment twice and the concerns with having it a second time and if I did how much longer I would have to wait if I did want more children.    
With this being said, being these questions haven't been answered no matter how many times I have asked them....there are no other options for dr's in my area so I need to know, do I have validity in having the surgery instead of the RAI or am I over reacting?

[tracybug2002]

Thank you so much.  That is the support I am talking about.  In either decision, I just want to know that I can make the right decision with some discussion or help from a few friends coming from the same place.  I do appreciate your input.  Thank you so much.  I don't know why, but after being told about RAI, i was just really concerned for my kids.  You have to wait 6 months to a year to conceive....no if ands or buts because if you do conceive even on accident, you will kill the baby's thyroid and completely reconstruct their dna.  True or not....I don't know...its what I was told my my endo.  As well, as a stay at home mom I was told I would have to "not have close" contact with my kids after RAI for 6 weeks and completely make no mistake at sharing fluids in any way.  I share breakfast with my kids, sit on the same toilet and potty train them.  It just seems like life would flip upside down for me and my family.  I hate the thought of harming them.  I know there are more risks to the surgery but I need to know other people in my place that might of come from the same place.  

I am still looking for comfort, questions or help from anyone.  My apt and consult with the surgeon is on the 12th.  Please keep talking to me about any advice out there.

I am pretty scared as it is....its going to be tough.

[tm514]

I chose to have surgery to treat my Graves disease permanently and have had no regrets in nearly 2 years since the TT.  I had a few reasons - I didn't like the idea of Radioactive anything in my body.  I didn't like the idea that my thyroid would still be there for antibodies to attack even if it had been killed off by RAI.  Most of all, I also have Graves Eye disease and RAI sometimes makes that worse and I didn't want to go there.  Further, I agree with your statement that drugs probably will not put you into remission if you have been on them for 5 years (maybe I misunderstood that part).

Yes, having surgery can't be undone, but neither can RAI.  Either way, I figured I'd be on synthroid every day for the rest of my life.  My endo didn't discourage surgery, especially with the possible eye implications.  My surgeon did a wonderful job, I have had no problems with any thyroid tissue left behind causing problems.

I think your concerns are valid.  If you feel more comfortable having surgery, then that's the right choice for you.  I think I have read you'll have to wait 6 months after RAI to conceive if that gives you any idea.  Find a surgeon who does several thyroidectomies per week, not one who just does them occasionally.   The surgery for me and for many others wasn't a big deal - no lifting for a week or so, no driving for a couple of days, I was back to work a week after surgery.

Good luck in your decision.  I wish you the best.

[tracybug2002]

I don't understand.  You say I have made up my decision already but if I had I would of never come on here in the first place.  I don't know what to do and I know I am over reacting but I also know no one is in my position.  I don't want my mind to be made up.....I am scared of the RAI but I came on here for support in my position, not as a position of a Graves patient.  I can deal with whatever comes my way....I do not want to cause harm to my children now or the children in my future, If I happened to get pregnant.  

I told my concerns....I know there are risks either way, I know my risks but I can handle as a mother what I get.....I would rather do the RAI if it didn't cause dangers to the people or children around me....I can't depend on what I don't create.....I can say now, I can get someone or my husband to take care of my kids but what happens if they don't take it seriously....

Oh nevermind.....I don't know what's best for me....I don't want either but if I could choose one....I would rather sacrifice myself than the people around me....I know what  I have but I was looking for advice on what other people would think was best too.....I don't know if I'm making the right decision....I need support not pros and cons...I know the pros and cons and I am asking on behalf of my children now....what would you do????  

[GravesLady]

Seems to me you are over reacting. However, go ahead do the surgery.  Your mind will be more at ease and it seems you have already talked yourself in favor of the surgery anyway.

Facts about surgery:
Thyroid surgeons tend to leave a portion of the thyroid intact, in order to avoid damaging parathyroid's or the nerve that runs through the thyroid that works the vocal chords. Even with the most meticulous surgery, small amounts of thyroid tissue are often left behind to help preserve the integrity of critical structures that lie beneath the lobes of the thyroid.  As long as there are thyroid tissue/residue left behind, antibodies can still attack the thyroid causing havoc and symptoms.  The thyroid can grow back due to the antibodies,  then you will find yourself back to square one with symptoms and facing another treatment of choice.

None of the treatments are a 100%.  All  equally have their pros and cons. We chose the one that best fits our life style and that we can live with.  That's the best we can do.
No one can make your decision.  Its all yours, for better or worse.

If you prefer surgery, than go for surgery!

Good Luck!

GL,

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