# Rethinking the surgery..



## soontobeamommy87 (Jan 30, 2014)

My name is Julie 26 I'm new to this site.I was diagnosed with graves when I was 14. Doctors kept switching my medicine around because my thyroid levels would switch from hyper to hypo. When I was 18 I stopped medicine because I did not have insurance. I know my thyroid never went away but I felt fine. I just had a baby five months ago and all through the pregnancy my levels was perfect. But as soon as I had my daughter guess what was back yea hyperthyroid. My doctor started me on methimazole and I gained twenty pounds in two months! And I became HYPOactive. So she wants it to just be removed. I have always been over weight and I have read nothing but bad stuff about the surgery. Stuff like be prepared to gain massive amount of weight. And it will be more difficult to have another child. Is any of this true? I'm starting to think I rather let it go the way I have been with it untreated than to gain more weight and not have another child.


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## rmunoz (Jan 26, 2014)

I thought I would post why I decided to have a TT so that you can have some data to work with.

I was Hashi's for 15 years consistently taking levothyroxine up until the last year, at which point I was diagnosed with Graves disease. The first couple of months of the Graves diagnosis, I tried methimazole and thought it was going to be the treatment for me until I broke out in a rash and started itching, so that went away immediately. My endo then recommended a TT, but gave me some time to ponder my next course of action over a couple of weeks...PTU, RAI treatment, or TT. After doing some research, here are some of the major reasons that I chose TT:

1. As mentioned, methimazole was not an option due to rash. Because of the significant probability of getting a rash on PTU if one gets a rash on methimazole, my doctor recommended (and I agreed) not to try PTU since it had a significant probability of wasting time with treatment.

2. RAI treatment was not considered since my thyroid antibodies are off the charts. I can't give you the exact antibody names (I believe TSI is one of them), but its the antibodies that really affect my eyes. They don't protrude...just dry out, itch, feel tight, and turn red so much that I can't wear my contacts. Based on what I've read, these antibodies usually increase during RAI treatment causing the eyes to get worse and sometimes with high antibodies after treatment.

3. Although a TT won't get rid of the antibodies, I have read that a TT can significantly reduce them (and hopefully enough such that I can put my contacts back in). I have read that one of the drawbacks of TT is without a thyroid for the antibodies to attack, the antibodies will sometimes compensate by attacking something else in your body. I was willing to chance this one because it seems less probable to happen.

4. Based on what I've read, RAI treatment has a significant probability of not working the first time requiring multiple RAI treatments. Ultimately, one goes through more thyroid highs and lows with RAI than with TT. I didn't want to stay on the roller coaster longer than I had to.

Right now, I'm 6 days post TT and my concern is the 'brain fog'. This wasn't from the surgery since I had it before. I think that I just have to let my body drain the extra thyroid hormone. They were able to keep 3 out of 4 parathyroids intact so I haven't had the calcium issues that some have (I feel very bad for those with the calcium deficiency because it sounds horrible). I consider myself lucky because my surgeon was one of the top thyroid surgeons in the world. He is a professor at University of Washington (top primary care medical school in the country) and always seemed to have 3 other endo's for face-to-face consulting and a handful of residents following him around religiously. This could be another factor into your decision for TT...a good surgeon. I had to travel a few hours instead of going with a local surgeon. Even though my surgeon was an out-of-network insurance provider, I still went with him because I figured that my body is worth more to me and I deserve to be in better hands. I highly recommend travelling if you can to get the best surgeon and subsequent care.

This is all just data. Whether or not any or all of this is true is disputable since everybody is different and not all procedures (such as surgeries) are created equal with different doctors and methods.

Sounds like you don't have that methimazole rash problem and you have the option to go that route to get stabilized by working with your doctor and adjusting the meds. I thought it was going to be my salvation until I broke out in that rash.

I don't think that I can help you with the pregnancy concern because I was just the guy getting yelled at, and deservedly so, when my kids were born. I haven't found any necessary reason to research that one.

Hopefully something here can aid you in determining whether a PT/TT is right for you.


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## joplin1975 (Jul 21, 2011)

Having a TT was one of the best choices I've ever made. My quality of life is infinitely better. I have no reasons not to recommend it.

The key to your concerns is getting properly medicated after surgery. It can take some time after surgery to find the right medication and the right dosage. I think people want immediate results and it's unlikely you'll get those immediate results - it can take months. But, if you look at long term outcomes for post-TT people, you'll find the results generally are positive.


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## Andros (Aug 26, 2009)

Welcome to the board. Your doc has given you the very best advice. I have Graves', have no thyroid and have no trouble maintaining a normal weight for my age and height.

Everyone is different so you have to find what works for you. We all will be glad to help you do that. W/proper thyroid med replacement and proper diet w/exercise, you and do it.

Congratulations on the new little family member!


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## jenny v (May 6, 2012)

Ten years ago I started out with a severe case of hyperthyroidism that morphed into Hashi's disease and I've been fighting my thyroid ever since. By the time I got it taken out about 4 months ago, it was so damaged and swollen that it was difficult to remove and had caused a curve in my esophagus.

I'm still trying to find my right dose of replacement medication (and it could take a few more months) but my system has calmed down immensely already and I haven't gained much weight so far, even though I'm still hypo at the moment. I actually feel like it's going to be easier for me to lose weight in the next few months because I'm not swinging between hyper and hypo anymore and I'm not having to constantly adjust my meds.

It can be a tough decision to make, but look back on all of your symptoms throughout the years, how you felt, etc. Hypothyroid is not fun, but hyperthyroid can be dangerous to your body in the long run, esp. if untreated. It's much easier to treat hypothyroid with meds when your thyroid is gone and isn't fighting off the medication or fighting with your immune system.


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## kmaplepark (Mar 4, 2012)

I struggled with Graves for two years before I finally had surgery. I was at the point of taking steroids for pain in my eyes more than doctors wanted me to. I was begging for orbital decompression surgery to alleviate pain and swelling in my eyes. Yes I had been on medication, up and down on my levels as is often the case. Doctors kept saying to wait for eye surgery until I was stable for a year on the meds.

Radiation was ruled out because of my eye condition. I guess once your eyes are that bad, it is not an option.

Had a TT and now one year later all I can say is, why didn't I do this first?

I have had some botox in my eyes to make the eyelids close more. I still have a little double vision, but my doctor says not enough to bother correcting.

So by having my thyroid removed, I eliminated two risky eye surgeries. One to reduce swelling around optic nerve and one to realign eye muscles for double vision.

I wish someone had told me to go for TT in the first place.

Yes, I gained all of the weight I lost back. Yes it was great being thin. But being sick with heart racing, tremors, eye pain,etc. is not worth it!

Good luck to you!


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## Andros (Aug 26, 2009)

Boy; I could not agree more w/what you have said. I wish I could make my own decisions over. I took anti-thyroid for 2 years and was so so sick. Just a different kind of sick. And I had Prednisone induced Cushing's Disease. It could not be helped though; the Pred saved my eyes.

Hugs,


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## webster2 (May 19, 2011)

I had half of my thyroid removed in 1990. Initially I went to the doctor because I kept having miscarriages. Almost a year to the day of having it removed, I gave birth to a 10 pound boy. My current endo feels that was the beginning of Graves disease for me. I was not diagnosed with Graves until 2011. I have bone density issues from being hyper all of those years. I also thought I was bipolar during that time. The remaining half left in 2011. I have not felt this well in a long long time. I exercise everyday. I may be a bit heavier than I used to be but I am happier and healthier than I have been in years. I have never regretted evicting the thyroid.


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