[currietm]

#1059444

Ugh…. I expected to leave my appt on cloud nine, but instead I’m now scared. I dont know what to do and keep second guessing myself. I still feel surgery is the right option for me, its just all the things that ‘could’ go wrong. Of course I always knew that I would have to take a pill everyday for the rest of my life, but no biggie I take lots of pills everyday. But when he told me if I quit taking the pills I would die within 3-6 months….. ok still not too worried because I plan on taking them. On my drive home my mind was going over everything said and then I jumped out of the box…. what if a major catastrophe hits and I cant get my meds? What if I develop something else in the future that are not compatible with my meds? There is that and then the whole vocal cord and parathyroid issue. RAI just isn’t an option for me… scares me more for some reason AND it has to be redone sometimes. Of course I would like to go into remission but I dont want to wait it out! SICK of feeling SICK. Since I’ve only been on the meds for 2 weeks they didn’t check my blood levels again. I have them checked next month with my endo and the next day another surgical consult discussion. I am feeling alot better, the only thing I can complain about right now is a little bit of muscle soreness, mainly my knees and tiredness and my life long depression issues. I asked the surgeon many questions regarding Graves but it seemed to me he was feeling his way through his answers as he tapped on the computer to answer me. He’s a good Thyroid surgeon, but obviously not completely in the loop about the disease so ALL those questions I wrote out will be repeated to my endo next month. And if I feel perfect next month…. THEN what do I do? I dont ever want to be in that sever hyper state again and then work my way back to normal. One more thing, I asked about the buggy eyes and he said since I’m on meds and they have’t bugged yet they wont… AND that Graves is the same as hyperthyroidism and I corrected him of course only for him to tell me its a gray area…. hence a surgeon and not an endo. I have read it is still very possible to get bug-eyed after any of the treatments sometimes more so with RAI.

[adenure]

#1174728

Hi

I understand all your feelings as I’ve had them all. I had to choose surgery or RAI bc I couldn’t take the ATD’s due to liver issues on them, but that was the hand I was dealt, so there you go I guess. I understand your fears of some crazy catastrophe and not being able to get medicine and all of that; I’ve had those thoughts as well. Knowing I have to take a drug to live IS scary! But, truth is, there are a lot of people in that situation for one reason or another. It’s not what any of us want, but it does happen.

As far as getting another illness that isn’t compatible with Synthroid, I don’t think that’s possible. Levothyroxine/ Synthroid, from what I understand, doesn’t have any issues with other medications. I supposed it’s possible that you might have to take Synthroid far enough apart from other drugs so that it is absorbed properly, but I don’t think there is an outright incompatibility.

Like you, I never wanted to go back to hyper land again. Scary stuff that I never, never wanted to go through again. Like I said, my hand was forced to make a decision between RAI and surgery. I probably would have tried for remission, but I don’t know. It seems like some people are very fortunate with remission, even for many years, but then hyper symptoms come back- maybe not true for all, but it seems to be so for the majority. I knew it probably wouldn’t get any easier to have the surgery as I get older. Apart from Graves, I’m a healthy 38 year old woman, so, I had even contemplated surgery before I knew I couldn’t tolerate the ATD’s. Everyone is so different, you just never know what your body will react best to. Take some time to think it all over, talk with other surgeons if you can and then go with your gut. The post surgery journey isn’t easy, but it is much easier than being hyper! And, it is good to know that I will not go hyper again.

As far as the eyes, I haven’t dealt with that and am hopeful I won’t. But, I know that on this board at least, 2 people have dealt with TED after have been being treated for Graves and having normal levels for years. So, although maybe not common, it can happen. Good luck to you and let us know how you’re doing and what you decide.

[Kimberly]

#1174730

Hello – Yes, unfortunately, this is a difficult decision, since ALL of the three treatment options have risks.

If you haven’t already, you might check out the “Treatment Options” thread in the announcements section of the forum. There is a link to a guidance document from the American Thyroid Association and American Association of Clinical Endocrinologists that goes through the three treatment options and also talks about how eye involvement impacts the decision. (This section is towards the end). Treatment with RAI is considered a “risk factor” for progression of the eye disease, but patients treated with anti-thyroid drugs or with surgery can also develop TED.

Also, this guidance document notes that Graves’ is the most common cause of hyperthyroidism, but it is not the only cause.

Wishing you all the best as you review your options and make the choice that is right for your personal situation.

[etleon05]

#1174731

Hello,

I too have come to the decision to have the entire thyroid gland removed. As the Dr. explained the process of both RAI and surgery, I opted for surgery. RAI, the process of RAI scared me, the waiting of 3-6 months for it to work, not taking your meds for 1 week in preparation for it, taking steroids, etc… All this scared me.

I did not know that, you can die if you were to skip your meds after surgery for that long. Honestly, I know I have to take a pill for the rest of my life and so to me this is not a concern.

Though my levels are controlled now, I still feel some of the symptoms, higher heart beat than normal, shaking hands as beta blockers wear off, tired, muscle sourness (mostly my entire back and legs), hot flashes, heavy breathing, anxiety and bulging eyes. My levels were almost toxic at the beginning of the year, I don’t ever want to feel that way again- they high anxiety, body getting hot, no sleep, high heart beat and panic attacks and all the symptoms intensifying scared me. I would rather have my thyroid removed than to feel all this, I’m an active person and all this just wears me down and puts me in a funk.

My surgery is schedule for November 5th. Yes, I’m nervous – complications can happen but I can’t think about them, what’s the point to fill my heads with negative thoughts. It’s all going to be better!

I hope you get more clarifications from both your endo and surgeon. Ask questions and don’t make a decision until all your questions have been answered.

Good luck!!

Emily Leon

[adenure]

#1174732

I guess you could also look at the flip side in the “catastrophic” situation. If you were hyper, you would need the ATD’s to keep your levels normal and it’s possible that pill wouldn’t be available either. Again, obviously a very unlikely situation and basing our decisions on fears isn’t usually a good idea. But, think of all the health issues that require continual medication whether it be Graves for those who aren’t in remission, those with out thyroid due to Graves or cancer, people who need insulin bc of diabetes, people with oxygen tanks etc etc… From what I understand though, Synthroid is the 4th most popular drug in the USA as far as how many people take it. One would hope that, even if we had to do without for awhile, it wouldn’t be for a long amount of time. Fortunately the 1/2 life is 5-7 days, so your body stores it up.

Emily, good luck to you with your surgery! That’s great that you’ve made the decision and are going to move forward with being well! I too am an active person; it was hard not being able to do much besides sitting on the couch all day to keep my heart rate at a safe rate! It is good to be able to live life, be active, exercise, and go about my day now and not worry about my heart rate or muscles getting weak/ sore. Let us know how it goes!

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