Grave's Disease

My friend took the radioactive iodine and it over-corrected her thyroid problem so that her metabolism was too slow and all the other issues that accompany hypoactive thyroid. She has said numerous times that she wishes she would have explored alternative treatments before doing the radioactive iodine. I know she is seeing a new doctor now who wrote some great book about thyroid issues. If you are interested, I can get the details for you.

Sorry to not be of more help, but this is all I know. My friend would probably be glad to email you more about her ordeal-- if you would like her contact information, send me an email.

Good luck...K. W

My cousin has it too.I don't know a lot about the disese but she did tell me that the radioactive iodine just stuns the thyroid and it can stop working and you will be dealing with the same problemsonce again She decided to go with the surgery. I don't know what the risks are for thesurger but i d know that if you want to have more children the surgery might be a little safer than the radio active iodine.

Sorry to hear of your recent dx., I too was just diagnosed with Grave's, I'm going to try and do anything I can not to have the radioactive iodine. The RAI sometimes effects the eye's (which I have problems with) and with Grave's you have to be careful of that, also I have a two year old and can't stand the thought of not being around him for a week or so, depending on the amount they give you. Grave's is an autoimmune disease and the RAI will make you go hypothyroid, from what I have researched on the web it doesn't help with the autoimmune part of it.

I am also trying to get pregnant, I am 42 and that is why I do not want the RAI I don't have a year to wait. It is hard with a thyroid problem and it sometimes will cause miscarriages. Here are some of the websites I have found.

www.geocities.com/ibayoa/index.html
www.ithyroid.com
www.tsh.org
There is also a support group on Yahoo groups for Graves.

Good luck
R.

S.,

I was diagnosed with Graves disease back in 2000 (when I was 29). I did the radioactive iodine and had no trouble at all--no side effects, and it worked well. My gyne suggested waiting to attempt conception for a year though, instead of 6 months "just to be sure". I got married about 6 months after the iodine treatment and we were eager to start a family...so that extra 6 months was hard...but I got pregnant the first time we tried. That one did end in an early miscarriage, but I have another autoimmune condition that was probably more to blame (plus I had a lot of other stress going on at the time) I have since gotten pregnant two additional times--both on the first cycle we attempted--and have two beautiful and healthy boys.
I also happen to be a nurse in an OB-Gyn office and when a patient calls me with these questions, I tell her this. When you hear about trouble conceiving or recurrent pregnancy loss with Graves Disease, it is likely referring to untreated Graves. When the Graves is active and untreated, everything is running on "hyper mode"; some women's periods get irregular or they don't ovulate when that happens--that is where the trouble begins. Similarly, when pregnant, the hyperthyroid state in untreated Graves may trigger pregnancy loss--maybe due to the "hyper" metabolism of everything in your system, or maybe due to the autoimmune component of the disease. Besides, if miscarriages occur after the Graves is in remission, there are a few medications that can be taken during pregnancy that really decrease the chance of it happening again.
Incidentally, the practice I work for has had several cases of women who got pregnant and we diagnosed their Graves through a routine early pregnancy thyroid screening test. So there are women who indeed get pregnant with no trouble even with active Graves. (Those moms are started on the pill treatment so their Graves doesn't go out of control while pregnant--and every one of those babies has been fine too, even when mom is on the anti-thyroid pills.)
My advice is to get treatment. Your future fertility should be just fine. (I initially tried pills to treat mine but that only kept it shut down for about a year. The RAI worked...I am now on daily thyroid medicine for the underactive state you go into when the Graves is stopped and get my level checked yearly.)
Again, I had no ill effects from the RAI and have had no trouble getting pregnant over the past 6 years. My boys are just fine.

Good luck and let me know if you have any more questions.

C.

My sister has graves disease and she did suffer a miscarriage a few years back..if it was related, I do not know. She is pregnant now and due the end of May. So far everything is normal and uneventful. Good luck!

My cousin has graves and didn't find out until she was pregnant (unplanned). Her pregnancy was uneventful and she had a beautiful son.

One of the other issues with untreated Graves is low milk supply. She was unable to nurse her son.

I understand the other treatment is surgical. Perhaps this would have fewer side effects in the long run?

S. -

I have a friend who went through this recently. She did not choose the route you have, but I know she really struggled with her options. If you'd like to speak with her, let me know and I'd be happy to pass along her e-mail address. (I'm at ____@____.com)

S.

Hello!

I don't know know much about Graves disease. What I do know is that my aunt was diagnosed with it some years ago. I just wanted to advise you to be careful and research the side effects of the medicines they give you. My aunt won the battle with the disease but the medicine she was given destroyed her liver. She is now on a waiting list for a new one. You are in my thoughts and truly educate yourself about this.

S. - both my best friend and sister in law - had the same treatment you are thinking about having. They both have subsequently had children! Good Luck! P.

You can find out more information about Graves' Disease by contacting the National Women's Health Information Center (800-994-9662)

My sister had the same problem after having her first girl. She did the radioactive iodine and waited a little over 6 months to start trying. She didn't get pregnant right away but it only took a couple of months of trying. She now has a perfectly healthly girl who is almost 9 months old. I don't think you have anything to worry about with the health of your baby aspect but she too was also worried. Good luck! She does still have trouble maintained her thyroid levels though. Make sure you pay attention to your body and symptoms. She just gets her blood checked frequently.

Can you save your eggs before you start treatment?

Hi S.-
My sister was just diagnosed in Nov and she only found out because she was trying to get pregnant..She is 32 and did not want the radioactive iodine, there were too many scary side effects and she wanted to get pregnant fast, so she choose to have her thyroid removed and did that the day before Thanksgiving and now is 3 months pregnant with so far a very healthy baby...She will forever be on medicine now that she has a hypothryoid, but is feeling MUCH better and still feels that she made the right and best decision...
GOood luck and if you need any advice I will give you my sisters email addres..
M.

hi i'm M. 22 and i also have graves disease,i was diagnosed with it almost 2 1/2 years ago i was told that it was going to be very hard for me to have children and a while after i was told that i wasnt going to be able to have kids at all because my disease was too advanced. then i started getting alot of tests due to 2 cysts i have in my thyroid to see if they were cancer, so before i was schedualed to get a nuclear test the dr says, "i know u cant get pregnant but be careful just in case."i was like yea what for i cant get pregnant! so i get the tests to come to find out i was pregnant all along! my pregnancy was good, high risk but good.so dont believe ALL that dr.'s say and if it was meant to be u will have another. i was just told yesterday that i will be getting a surgery to remove my thryoid because i have a big risk of developing cancer.oh and my baby (6mths) is very healthy! let me know if u have any ?'s i've been thru it all!