[green123]

#1060755

Hi everyone,

I was wondering if I could get your thoughts. I have been on methimazole and finding the right dosage has been difficult (fluctuating from hypo to hyper). My eyes are affected and bulging.

My main questions are:

1- what is the rationale for thyroidectomy if (as I have read) that it can be difficult to find the right dose of levo after surgery? Does that not put me in the same situation (trying to seek the right methimazole dosage) as I am currently in? What is the benefit?

2- Can thyroidectomy help my eyes? will it make my eyes worse if I become hypo and have a hard time finding the right levo dosage?

3- I read in this forum that the thyroid should be euthyroid at the point of surgery. Why is that? Is there a safety concern? Unsure if I can achieve that as I am having difficulty with the methimazole.

4-How is the recovery from surgery? I read on another post that after the removal, people can still can not return to normal and continue to face tiredness and things like that. What are the short term concerns of surgery and long term concerns?

Thank you so much for your time. I know this is a very long post, but I am hoping to get some information that will help sway a decision.

[Liz1967]

#1184560

I had a total thyroidectomy after six months on methimazole. Best decision I ever made.

A good surgeon pretty much knows where to start you on levothyroxine. It is so much easier to regulate because there is no thyroid pumping out too little or too much hormone with no rhyme or reason. It isnt rocket science. If your levels are hypo, you take more levo, if hyper you take less and antibodies do not effect levothyroxine! I go by my TSH only and I feel totally normal. Once you find your best dose, which for me happened in six months or so, you pretty much stay there. Nearly three years postop, I get labs yearly.

My eyes started after two weeks on methimazole. Studies have shown total thyroidectomy has a positive effect on antibodies and the eye disease. I found this to be true as the eye disease burned out within 6-8 months after TT.

Prior to my TT, I was made slightly hypo on methimazole and was given some kind of iodine solution ten days prior to make the thyroid less vascular. They just dont want you hyper to risk thyroid storm.

I had surgery on Friday about 11a.m. Surgery took an hour or so. I went home that afternoon once they got my labs with calcium levels. The next day, I was tired mainly from the general anesthesia. No sore throat, hoarseness, or really any pain. Incision was glued shut on outside and not bothersome. On Monday, a friend came over to keep me company and we decided to go shopping! I started levothyroxine 4 days after surgery. My initial dose was 100 micrograms and I am maintained now on 88, so you can see how close I was dose wise right from the start.

I had pretty severe eye problems but if I did not have TED, I would forget I even have Graves. Take this little pill every morning, dont eat for an hour or take calcium for 4 hours, and I feel exactly as I felt prior to the Graves diagnosis. I may have some level of antibodies, who knows or cares, because I have no thyroid for them to attack and they are evidently done attacking the eyes! They are no more important than the antibodies I have for polio or whooping cough or tetanus. Levothyroxine is chemically identical to what your body makes. It is not a foreign drug. It has a really long half life so levels dont fluctuate a lot. I also know I will never have thyroid storm, or thyroid cancer or the side effects from methimazole. I dont have to spend any time worrying about labs or doing any crazy dietary things.

If you opt for surgery, choose a surgeon who does about three a week. My surgery was so easy, easier by far than any of the eye surgeries, because I had a great surgeon. It helps if they do thyroid cancer thyroidectomies, because you want to be sure all of the thyroid is removed. I had no need for calcium replacement and no hoarseness and my incision is invisible.

I feel like the TT cheerleader. If I had to mess around with antithyroid drugs and crazy labs and feeling bad while all the eye problems were going on, I would have lost it.

Hope this helps.

[emmtee]

#1184561

1. When I was initially diagnosed with Graves’ almost 5 years ago, I was leaning toward thyroidectomy because it would get me back to “normal” faster than RAI, and is a definitive treatment. At the time, my endo only knew one surgeon who did thyroidectomies, and when I consulted with him, he said he didn’t do them for Graves’. 😡 I got comfortable on methimazole and stayed on it for four years.

Last year, I finally got my thyroidectomy, but it wasn’t for the Graves’. I developed a large nodule that was pressing on my trachea and really needed to come out. It was suspicious for cancer, but it turned out to be benign. Maybe if I hadn’t had Graves’ we would have considered a partial thyroidectomy, but I was really happy to be able to use the surgery to kill two birds with one stone. Fortunately, the hospital had just hired an awesome endocrine surgeon, so I was confident of a good outcome.

When I first started on methimazole, it took about a year to really find the right dose, and then we had to lower it 6 months later. My thyroidectomy was 8 months ago, and I’m still on the same levothyroxine dose that I started with. I do need a slight adjustment, but compared to the rollercoaster I was on with methimazole, the levothyroxine has been smooth sailing.

2. I haven’t really experienced much eye involvement, so I’ll leave this question to others.

3. Ideally patients should be euthyroid before having any surgery. There’s a risk of thyroid storm if they’re hyperthyroid. That being said, I know someone who couldn’t tolerate either methimazole or PTU, and she was able to have a thyroidectomy. I think she said she had to take Iodine. She was probably referring to Potassium Iodide drops. My surgeon prescribed them before my surgery. She told me she only prescribes them for her Graves’ patients. I was supposed to take them for 10 days, but I could only get them 8 days before my surgery and I was fine.

4. Of course everyone is different, but my surgery and recovery were pretty easy. Mine took over 4 hours (closer to 5) because I had such a large nodule. It was actually bigger than the rest of my thyroid. I stayed one night in the hospital. I was told that this is in case patients have problems with bleeding. That night in the hospital, I was able to eat a regular meal. The next day when I checked out of the hospital, I was prescribed ibuprofen for the pain. I worried that it wouldn’t be enough, but it was fine. My surgeon also had me take Tums every few hours to supplement my calcium. This is done as a precaution because, even when the parathyroid glands aren’t damaged, they can be stunned for a while after surgery. I also had some chloraseptic spray, but I only used it once. The pain was much less than I expected.

My surgery was a week before Thanksgiving, and I enjoyed the holiday almost as much as any other year. I ate all my favorite dishes, and I even cooked a couple of them myself. The only thing different was that I got tired earlier than normal and had to cut the evening short. I was also still a bit hoarse. A couple of weeks after my surgery, though, my voice was back to normal.

My surgeon gave me some restrictions, but they only lasted two weeks. I live alone, so I was advised to stay with a family member for the first two nights after I got out of the hospital. I also couldn’t drive for a few days. I couldn’t lift anything very heavy or strain at all. I felt pretty good, but I got tired easily and had to rest frequently – especially the first week. I started on levothyroxine a week after my surgery.

My incision was closed with dissolving stitches on the inside and surgical glue holding the skin closed. The glue was covered with steri-strips. I was told I could get them wet in the shower but that I should only rinse them, not scrub. They were supposed to fall off within two weeks, but mine held on and my surgeon removed them for me when I had my two week post-op appointment. My scar looks pretty good. I have to keep it out of the sun for the first year, so I’ve just been using Mederma with 30 SPF.

My long term concerns are very few. I could take methimazole at any time of day, with or without food, but I have to be more careful with levothyroxine. It has to be taken on an empty stomach. This restriction isn’t really a problem – it just requires me to stick to a routine. I only need to see my endo every 6 months, now. Before, my thyroidectomy, I was seeing her every 2 – 4 months.

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