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Completely Confused - Help!

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Old 02-26-2011, 12:05 PM   #1
Join Date: Feb 2011
Location: Bethlehem, PA
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ann85 HB User
Completely Confused - Help!

About a year ago, they found a 3 cm. nodule on my thyroid. I had an inconclusive biopsy, so that endo recommended surgery. I freaked out, decided to wait, and a second endo has been monitoring the nodule. She also did an uptake/scan and found out that it is hyperfunctioning, so miniscule chance of cancer.

For the past few years, way before they found the nodule, I have had anxiety, night sweats, fevers, awful brain fog, depression, racing heartbeat, mood swings, chronic throat problems... and the list could go on. The first endo told me that these things weren't likely related to the nodule. The second didn't really address them or explain why I have this nodule, or anything. I'm so confused because I'm tired of living life like this, not having been myself for years. I feel like I can't clearly communicate to my doctor or something, or like these symptoms keep being shrugged off. My TSH was "normal," every time, once .39, once 2.2, once 1.3. I'm on no medication or treatment, I just go see the endo again in about a month. This time I want something to be done. I want to get to the bottom of this so I can live normally. I'm just baffled because I feel stuck. My endo did tell me this could affect my chance of pregnancy in the future. I am 26, married, and want kids in a few years. Has anyone else had an experience like mine? (I haven't been diagnosed with a disease or anything. They never really tried to figure out why I have this nodule, it seems.)

One final question. Has anyone heard of surgery fixing a situation like this? I'm scared of all the horror stories I've read about, with people going hypo after surgery and feeling worse than before and nightmares with meds. I just don't know what to do!!!! I appreciate any help and input.

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Old 02-26-2011, 12:49 PM   #2
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cd37 HB Usercd37 HB Usercd37 HB Usercd37 HB Usercd37 HB Usercd37 HB Usercd37 HB Usercd37 HB Usercd37 HB Usercd37 HB Usercd37 HB User
Re: Completely Confused - Help!

Most of the population develops thyroid nodules at some point in their lives. It's only because of tests "in the area" that many of them are discovered.

Some people can have hyperfunctioning nodules that will throw off thyroid hormones and cause symptoms such as you've had.

Not sure what doctors do about this - somewhere along the line, I thought I'd heard of surgery to remove the nodule.

I'm also not sure how pregnancy might be affected by a nodule although I do know it's important for thyroid hormone levels to be towards the high end of the range to have a successful pregnancy.

The people who have had good outcomes with thyroid surgery are those who have partnered with an experienced surgeon....and a doctor well-versed in proper thyroid medication protocol.
Dx'd Graves' June 2007..used ATD's, achieved remission Nov '09....went hypo Mar '10

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ann85 (02-26-2011)
Old 02-27-2011, 06:45 AM   #3
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Re: Completely Confused - Help!

There are two options with a hyper-functioning nodule that I've seen on these boards which is either taking a radioidine pill to destroy it, or surgery.

The issue with the radioiodine (rai) is that it kills the thyroid tissue without precision---it's expected that the nodule will take up the iodine and destroy itself, but it can slowly kill off more tissue, and your entire thyroid as well, making it difficult to manage medication.

The other option is surgical. The issue maybe if your blood work is hyper, you may have to take certain medications to keep you safe during the surgery. This way you can just take half of the thyroid out (the side with the nodule) and usually the other lobe of the thyroid can handle the needs of your body for the rest of your life.

I would opt for the surgery for several reasons. First, that is a large (a thyroid lobe is typically about 3.5 cm and your tumor is almost as large as your lobe) and if it is cancer if it grows it can become more aggressive. If you did RAI instead of surgery, you would never know if that were cancer, and it could remain behind in the tissue that remains behind.

Second, since you can live fine with removing one lobe (fine with removing the whole thing too), you can get your thyroid levels managed without worry of that nodule spilling extra hormone in your system, and you can go on to your child bearing without worry of your thyroid or a tumor growing.

I think you need another opinion---you need a good surgeon ---an ENT, you can ask your endo. for the best s/he knows----with tons of thyroid experience at a good hospital. I don't think it's a good idea to "watch" such a large hot nodule that is giving you symptoms.

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ann85 (02-27-2011)
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