[Clarebear8199]

#1059713

Hi everyone! I am so glad to have found this site and forum, as it has been very helpful reading everyone’s experiences. After a few months of weight loss and loose stool, I finally went and saw my dr, who had blood and stool tests run. Blood tests indicated hyperthyroidism. After that, I had the uptake tests, ultrasound, and more blood tests, after which, during my first apptmt with my endo, she told me I had Graves’, with a goister. I also have the antibodies for Hashi’s…

Anyway, before my first apptmt., and initial internet surfing, I was hoping that with proper diet, nutrition, vitamins, and supplements- my Graves’ would go into remission. My endo told me that she is as naturopath as one can be, but my condition will always be there. Knowing that I want more children in the future, she suggested TT. I’ve read the risks with the ATDs during pregnancy or otherwise to mother and child. And I feel that I rather have my thyroid taken out and take hormone replacement, than be on the methimazole. I did read some posts on those recovering directly after TT, but what about the months and years after? What can I expect? How is that going to affect the rest of the goings on in my body? And after having your thyroid removed, does that make it more difficult to conceive? Is menopause going to be even crazier?

I’m a 31 yr. old mother of 4, ages 7.5, 5, 3, and 10 months. My hyper symptoms were mild, with only what I mentioned above. Other symptoms could be attributed to mother of 4, adjusting, not taking care of health as well(this shocked me into realization- suppose that is what it takes sometimes!), baby, etc… But I have not experienced anxiety, trembling, heart palps., etc….
My husband has been very supportive and also with discussing the treatment options with me, very grateful for that. I have family and friends who suggested trying to take a more natural or alternative treatment options, but after reading on here and a few other places, plus what my endo said, I have no faith in that being a successful option for me. Unless, through some grace of God, I am healed, I plan to proceed with a TT, once the dr says I can. Currently taking 10 mg of methimazole. Reasons for avoiding RAI- pregnancy, confined from everyone, and the risk of having to do it maybe a second or third time… I do know that the surgery comes with its risks as well… So one can go into remission, but I can’t play the when or for how long game? Maybe if I was done having children, maintaining levels might be a little easier….
My endo doesn’t want me to rush into making a permanent decision… I found out I was hyper mid. Jan of this year, diagnosed with Graves beginning of Feb., and just started taking methimazole now for over a week… In about a month, I’ll have another lab done and then a follow up apptmt two weeks later. We know having a TT is no easy task either, but weighing it against the worries of the risks of the ATD’s and the constant monitoring… Rather have my thyroid removed… I’d like to hear your two cents if you have time pleae…

[sloafr]

#1176976

I had a TT Total Thyroidectomy 6 days ago and I wish that I had had it sooner.
I was diagnosed with Graves Disease a year and a half ago.
My endo wanted to see if we could get the Graves to go into remission by taking methimazole for 1 year.
After a year, I went off the methimazole & my hyper symptoms came right back. I was uncomforatble staying in the methimazole because of the (rare) side effects of the drug. My system is very sensistive and I was having some strange symptoms (twitching muscles, painful joints, etc).
I was fearful of the radioactive iodine as a solution because of how sensitive my system is and I did not want to run the risk of having any eye problems as a result.
So I choose to have a TT.
I wish that I had done it long ago!
After 5 days post surgery, I felt better (mentally & physically) than I have since being diagnosed with Graves.
I had the procedure at Mass General and Dr. Randall Gaz was my surgeon. He is one of the best (if not “the” best!).
Let me know if you have any questions, as I just went through the surgery…
Good luck

[Clarebear8199]

#1176977

Thank you Slofar, your post is encouraging. I have to remember in reading the various stories online is that each patient is different. And of course, there is the worry of what I will be like after TT. All the what ifs in various situations. And the main “what if” are the risks that ATD’s have to a pregnant mother and child are small, but worrisome enough… Gotta take that out and move on with life and hope for the best, right? What can I do to prepare or expect in all areas for TT before and after?

[Kimberly]

#1176978

Hello and welcome! The “Treatment Options” thread in the announcements section of this forum has a couple of good links for sorting through the pros and cons of the three treatment options.

I wish I could remember who said this so I could give proper credit, but we had a poster a while back say that her doc had started her on Methimazole and wanted to get her levels stabilized before she made a final decision. The doc said that he wanted HER To make the treatment decision and not the Graves’!

Since it seems that future pregnancy is a major overriding concern in your decision, this guidance from the American Thyroid Association will be of interest.

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/thy.2011.0087.pdf

The section on Graves’ starts on page 1094 (page 14 if you download the doc as a PDF).

We have had members here who have had healthy babies following all three treatment options: ATDs, RAI, and surgery.

Also, this link from the American Association of Endocrine Surgeons has some great info on thyroid surgery:

http://endocrinediseases.org/thyroid/surgery.shtml

Hope this helps!

[adenure]

#1176979

Hi!

You sound a lot like me! I have 4 boys (9 years old, 8 years old, 5 years old, and 15 months old). I was diagnosed with Graves after my 4th son was born and was started on 5 mg. of methimazole. I was on it for 7 weeks before I had labs done. It did get my thyroid levels normalized, but unfortunately, I was one of the 1% who had liver issues on it. My liver enzymes were 8 times the normal amount on the 5 mg., so I had to stop the meds. ASAP. Of course, I was freaked out! I didn’t know what to do (whether RAI or surgery). I didn’t want to try PTU bc it has a higher chance of liver issues. I was also breastfeeding my baby (and still am. ). So, RAI wasn’t something I wanted. I didn’t want to be away from my family for a week after RAI or have to stop breastfeeding. I also didn’t want to worry about waiting to conceive. We don’t plan on having any more children, but we are always open to whatever happens.

So, surgery it was! I had surgery 6 weeks after I stopped the methimazole. That was 8 months ago. I’ve been on Synthroid since day 2 after surgery with one dose adjustment 6 weeks into it. I’ve been on that dose since and doing pretty well. I am much healthier now than I was when I hyperthyroid, and when I was on methimazole. Methimazole was good, but I didn’t feel great on it. I might have tried for remission, but having the liver problems pushed me into a decision quickly. I think it was a blessing in disguise. My liver enzymes went back to normal and everything is fine there now.

I have a good amount of energy- enough to homeschool my older 3 children and take care of my baby everyday. I exercise- 30 min. of cardio 4-5 days a week and live a normal life.

I think the choice is up to you. If you want to be “done” with this so to speak, choosing surgery or RAI is the way to go. You’ll still have to be monitored on occasion for your Synthroid dose, but it is not as frequently and much easier to stabilize I think than methimazole. I’m happy with my decision and grateful that I had the surgery. If you do opt for surgery, make sure you have the best surgeon you can find who does A LOT of thyroidectomies. I was very lucky there; I had no complications at all from the surgery. If you have any other questions, feel free to PM me. Good luck!

[Clarebear8199]

#1176980

Thank you, Kimberly! Both links are very helpful! And thanks for the heads up on other posters’ healthy babies…

Adenure/ Alexis(right?)- thanks for your reply. I’ve been reading a lot of your posts and they have helped answer some questions and have eased some qualms I may have had. It is encouraging to know that despite having your thyroid taken out, the hormone you are taking seems to be providing enough to keep up with boys, homeschooling, little ones, and all that it encompasses.

My reasons for wanting to avoid RAI are pretty much the same as yours, and who knows, after my lab results are done in about a month, we will see how the methimazole has fared…

You are right- I do want to be “done” and move on to the next stage…

Thank you for continuing to post, as I am sure I’m not the only one in a similar position, who has found your experiences to be of great aid.

[snelsen]

#1176981

Hi and welcome!
Just to reflect Alexis, I also had a TT, many years ago, had an 8 month old, wanted to “get busy” and get pregnant, and this was the right decision for me.
I think I may have written about post op experiences recently, but briefly, it sure is nice to have help for a couple weeks, that is for sure. The cooking, laundry, meal planning, all the stuff, done by others. YOu can spend time with your kids, take naps, and by the 2nd week, you might feel that you feel great, but keep the help if it is available.
It can be an experience everyone can enjoy. My incision is not detectable by anyone, never has been. It would not have been a decisive factor for me if it was a possibility. I was breast feeding (wrote fairly recently about that…missed a couple of feeds, pumped milk for those.)
Shirley

[Clarebear8199]

#1176982

Thanks Shirley, I’ve been reading your posts as well, and they have also been helpful, and encouraging. Thankfully, I have friends and family around me that will help with meals at least. So things to be aware of, besides the initial risks of the surgery: have help when I can, it will take a little while to recover from surgery, and it may take some time to find the right dosage of hormones for me.

I’m so glad to read that both of you are happy with and don’t regret your decisions to do the TT. I hope to be in the same boat, as I don’t question the reasons for my choosing TT. Now, we just wait for the next labs and endo visit…

[snelsen]

#1176983

Sure. We ended up with three children. You are BUSY! I imagine the washer/dryer is humming all the time! Even if you probably don’t use cloth diapers as I did. I actually loved sitting on the couch and folding them. Go figure!
Shirley
I’m prepping for income tax right now, so I hop over to GDATF for a nice little break!

[Clarebear8199]

#1176984

So confused. Still waiting for my next visit with my endo in a month… If my symptoms are mild, should I give it time to hopefully go into remission? Even if I am on medication, can my goiter get larger? Should I get pregnant, then I would have to worry about what could happen during pregnancy. But then again, even during a healthy pregnancy, anything could happen. Do your symptoms worsen after each pregnacy? Is it possible after a TT for the antibodies for Hashimotos to kick in? If you are already hypo then , does it make a difference? For those who have had a TT, what have you had to deal with in the years following? Trying to figure if I should try ATDs for a while before choosing the permanent treatment of surgery. Of course, my goiter or liver levels could push my in that direction sooner, depending on what happens… Then there is the dilemma: would I be wondering years down the road,- should I have given remission a chance before jumping to surgery? Or if something were to happen during pregnancy: I should have done surgery… Oh- all the what ifs! What choice to make and the rest to trust in God’s hands…

[Clarebear8199]

#1176985

Shirley,yes, my kids keep me busy! And the laundry does pile up if I don’t do anything about it. . Some of my friends do cloth diapering, but I choose not to.

[Clarebear8199]

#1176986

I am anything, but “crunchy”, but a friend of mine is so determined to find another route via diet to treat her son’s diabetes 1. To each their own, but it made me wonder if I was making my decision to do TT too quickly, without trying to give remission a try, were it possible. But realistically speaking, with having multiple children in the future- hopefully- is that possible to achieve? Hormone levels up and down- pregnancy, post- pregnancy, and repeating that again…

[adenure]

#1176987

The “what if’s” will drive you batty. I’ve been there. So many what if’s… but, you have to try your best to focus on the here and now and what the best option is for you right now. Trying for remission isn’t a bad idea and you can take PTU during pregnancy (and methimazole the 2nd & 3rd trimesters if needed). You can breastfeed on both drugs. So, as long as your body tolerates ATD’s, you can do it.

I had to decide on a definitive treatment bc of my liver issues with ATD’s. Part of me is grateful for that odd blessing in disguise as now I don’t have to worry about going hyper again. Not that the other end of the surgery rainbow is all perfect. But, it is much, much better than being hyperthyroid!

When I found out I had to stop the ATD’s, I did think, well, if I were to get pregnant again, at least I wouldn’t be worried about taking ATD’s during pregnancy or going hyper after childbirth again. We’re not planning on having anymore children, and it isn’t to say the above would necessarily happen, but for some reason, it was comforting to know that hyper- hell was going to be behind me for good.

I still have “what if’s” that buzz through my head. I worry about TED. Kind of silly since I don’t have any symptoms except for dry eyes sometimes that drops take care of. But, it looms in the back of my mind sometimes. I want to be healthy and strong and be here a long time to take care of my children and see them grow into adults and enjoy life. I do enjoy life, but I hope to have a long, healthy life just like the rest of the world hopes for.

I guess the best advice I can say is go with what feels right to you. You’ll never be 100% sure, but you will find a peace deep down with what feels best. That’s how surgery was for me. Even before I had liver issues, I knew that if I went the definitive route, I wanted surgery. Just was that way.

[Clarebear8199]

#1176988

Thanks Alexis, it is driving me batty! At first, I was ready to go for surgery. Then there was the suggestion,”You’re young, newly diagnosed, mild symptoms. Why don’t you try for remission before making the permanent treatment choice?”. If I go for surgery now, will I always wonder if I should have tried for remission first? Or just stay with the ATD’s? Having to worry about the possible side effects during pregnancy is not something I want to deal with either… I’m praying for a sign to direct me…

[Kimberly]

#1176989

Hello – Definitely lots of “what ifs” here, and unfortunately, no easy answers! Goiter is generally associated with being either hyper or hypo, so assuming your levels are stabilized, you shouldn’t see this get worse while on meds.

I’ve not seen any studies connecting Hashi’s antibodies and TT.

It *is* somewhat common for patients in remission to relapse after a pregnancy — we have a couple of members here who have gone through that experience. But, of course, all of the treatment choices have risks and benefits. Sometimes a good old-fashioned “pro” and “con” list can help you sort through the options!

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