Thyroidectomy

[liz56]

Hi, Everyone.

I found out yesterday that I will likely need to have a thyroidectomy in the next year or so-- no cancer or emergency, thank goodness. However, I have a multi-nodular goiter that may interfere with swallowing / breathing. So, my endocrinologist thinks that the whole thyroid should come out; though the one side has the large nodule, there are nodules on both sides.

I am apprehensive, of course. I'm afraid of a 2 1/2 hour surgery that might give me a corneal abrasion or cause an erosion. (I really don't think that I am out of the woods on erosions.) Plus, after the thyroid is removed, I'm concerned that the replacement hormones will be difficult to regulate and that I will go through periods with my dry eye worsening.

Has anyone here had their thyroid removed or otherwise shut down, like in radiation treatment for Graves' Disease? If so, what sort of things should I expect? What are ways to cope without having this hormone produced naturally?

Any help or advice is greatly appreciated.

--Liz

[Toril]

Hi there!

I have both undergone thyriodectomy (but they didn't remove all of the gland), and treatment with radioactive iodine (about 2 years later). The operation was in 1997 and radioactive iodine in 1999, so at that time I hadn't developed dry eyes yet. But assume you should informe the doctor and nurses well that they need to put lubricants in your eyes during the operation to keep them moist.

I don't produce any thryroxine anymore myself (the thyroid gland went totally dead some weeks after the treatment with radioactive iodine), and I've been on Levaxine ever since. Took some time to find a good dose, but now it's quite stable. I take blood-tests every 5-6 weeks to check my thyroid levels, and if there are changes, I chance the dose a bit (if the doctor agrees on it).

I've found a very good site for people with Grave's disease just recently, and the address is www.ahsta.com

Good luck!

Greetings from Toril

[liz56]

Thank you.

Hi, Toril.

Thanks for replying. I was also thinking of requesting a BCL for during the surgery (that is, if / when it occurs). I'll ask my corneal specialist about it.

What kind of thyroid medication do you take? Do you have any advice about diet, exercise, other things that will help me to continue to feel normal and not lethargic?

I am looking at a likely total removal of the gland. It's really nice to know that someone has had this situation and is still doing well over ten years later. I really want to keep working and being me.

Thanks, so much, Toril.

--Liz

[Toril]

Hi again!

For me to just get the gland stop working was the best thing...because it's was crazy and living it's own life, even if they removed parts of it. Now..that it's not working, it's easier to control the hormon-levels as I get everything through medication. I use Levaxine,..these days I take 800 microgram per week. As I also developed thyroid eye disease along with the Grave's disease, my TSH-level is kept a bit high (so it won't trigger the thyroid eye disease again).

Hmm.. I can't really remember what I did back then when it came to food, excersise..etc...actually I don't think I did anything special. I sure didn't feel well for long periods, rapid heart beats, little energy etc, but I managed to finish my study at college, being social with friends, etc. The last years I have been more focused on eating healthy and doing work out though. Now I feel it's necessary. I've also got rheumatoid arthrisis (along with dry eyes), and I need to lead a healthy lifestyle. I don't follow any special diet, but I try to eat much fruit and vegetables, fish, dark bread, etc. and I take vitamin and mineral-supplements and flaxeed oil. When it comes to excersise, I love asthanga yoga (power yoga) and going for long walks. I also go to the gym for classes sometimes. And..I need to sleep a lot. Without enough sleep...I'm really not functioning.

It will take some time to recover from the operation, get your thyriod hormon levels right, etc...but for me it made my life better living without the thyroid gland as it was impossible to control, and instead use medication.

Again...I would recommend you to read posts and articles in www.ahsta.com Much very good information there!

Greetings from Norway,

Toril

[Lucy]

Liz, my daughter had a thyroidectomy for Graves Disease and it sounded very much like Toril's situation. This surgery followed a year earlier diagnosis of Type I diabetes. Both are autoimmune. My daughter has taken Synthroid since the thyroid operation and has had no problems relating to that surgery. She wears contacts on a daily basis and I haven't heard her complain of dry eyes. Lucy

[woodart]

Thyroid Eyes

I can only tell you that I had dry eyes before and they were the same afterwards. Medication adjustment for me was no problem. As for the operation suprisingly it was not that bad. I expected it to be much worse than it really was considering the throat area. I asked for lacrilube for my eyes because they do not close properly and I could tell they did what I seked.

[liz56]

Thanks, again Toril. I looked around on the forums there, and they had some very helpful things. I'll keep checking it.

Lucy and Woodart, thanks! Your stories are helpful. I'm nervous about this, and it looks like although it will not happen right away, it will happen. So, it means a lot to hear of successful stories, especially when it comes to dry eyes. I was afraid that they might get even worse than they are, and that is on top of everything else.

Thanks, again,
Liz