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Total Thyroidectomy, Trying to decide on Treatments?

bosmom
Posts: 2
Joined: Aug 2009

I have been fighting an "issue" of some kind for two years that I can identify with. I had two surgeons and two different endocrinologist tell me that according to my 3 biopsy's I didn't have much to worry about in terms of cancer. I elected in July to have a total thyroidectomy and low and behold, pathology revieled Papillary Microcarcinoma with lymphovascular invasion. I was put on sinthroid 125mcg and sent to an endo. Hence, the one that said I was fine no worries. Now they are suggesting that I go on Liothyronine Sod 50mcg/daily (Cytomel) is what I am gathering this is. Low iodine diet and RAI treatment. After my research and reading this feed, I am realizing there may be many side effects and risks accossiated with radioactive iodine. I have started the med's and I am a bit confused as to what route to take. I also have hurthle cells present, my doc does not seem to feel concerned that they are malignent. He has not difinitivly said they are not eiather. I am wondering if having a body scan before RAI is a more progressive/healthy approach to try and determine what stage I am in. A,also, no word on my Tg levels?
Anyone, that could shead some light on my situation would be appreciated.

caitlynm
Posts: 3
Joined: Aug 2009

First of all, let me say how sorry I am. You knew something was wrong with your body, but the people who we are supposed to trust did a disservice to you. Unfortunately as I have found out, you have to be your own advocate. I was taken off the syntyroid and given cytomel for 6 weeks before my body scan...I had little if any energy and they wondered how I was functioning. They did the body scans, I had the I131 treatment and then had a 2nd set of body scans. Whatever was in the material for the body scans nd I131 has made me incredibly sick. I can't have body scans anymore and have had 2 have 2 surgeries because of the damage from the I131 treatment. Go with your gut and decide what you think is best for you and your family.

jcvolt
Posts: 69
Joined: Mar 2009

If it were me I would definitely go with the body scan first. TG levels will only give them a baseline right now to watch for elevation. It won't be zero if you still have thyroid tissue in your body.

bowlwarej's picture
bowlwarej
Posts: 18
Joined: Aug 2009

It seems that your doctors aren't giving you enough information to make a decision that you need. If you were sent back to the doc that told you that everything was ok, when it wasn't, maybe another opinion would be a good thing to consider. I took the RAI twice. And nothing happened to me as far as side effects. Everyone's body is different, and it's not possible to know what to expect when you take something unknown, but I have much comfort after the radiation because I know the cells were destroyed. I also went on the Cytomel, did the 2 week (hideous) diet, and swallowed the iodine in the form of a radioactive pill. Having a body scan may help ease your mind, but I would think they would know what stage you are in because they have taken the thyroid out already. I would call and ask them every question that is bothering you to get some answers so you can make a sound decision. Best of luck!

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