Hypothyroidism and Hyperthyroidism

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Newly diagnosed Hyper with Toxic Nodule

mom2tek
mom2tek Posts: 75 Member
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I'm looking for some advice. Has anyone else been diagnosed with Toxic Nodule?? I've recently found out I have a hyperthyroid and it is Toxic Nodule. My doctor has recommended either having half of my Thyroid surgically removed or going through radiation tx. I'm not very excited about either choice of treatment. Has anyone had the surgery or the radiation tx's that may have some advice to share??

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  • islandmonkey
    islandmonkey Posts: 546 Member
    I'm looking for some advice. Has anyone else been diagnosed with Toxic Nodule?? I've recently found out I have a hyperthyroid and it is Toxic Nodule. My doctor has recommended either having half of my Thyroid surgically removed or going through radiation tx. I'm not very excited about either choice of treatment. Has anyone had the surgery or the radiation tx's that may have some advice to share??


    Ok, so it sounds like what they're saying it that you have hyperthyroid not caused by graves disease, but caused by toxic nodule...? Have they tested you for Graves antibodies and for TSH antibodies to confirm this?

    Also, what are the results of your free T3 and free T4 tests? If they haven't tested these I'd ask for them to be done.


    Is there a reason that anti-thyroid meds won't work?


    RAI (radioactive iodine treatment): I would NOT NOT NOT do this. I have heard nothing but horror stories. Your entire thyroid will die off, and it can take years to do so, leaving you swinging back and forth between hypo and hyper. As well, if they haven't tested for graves antibodies and you have any TED (thyroid eye disease) it can create huge problems. Do you have kids, or are you wanting to? If "yes" to either question that's yet another reason NOT to do RAI.

    Surgery: I had a total thyroidectomy about 2 months ago as treatment for graves disease (that stopped responding to anything else). It was scary before hand, but I'm recovering great and have had zero issues or complications. If you want more info just let me know. But I would ask about anti-thyroid meds first.
  • cuterbee
    cuterbee Posts: 545
    That is what happened to me. They couldn't biopsy the nodule so they removed half my thyroid. Now I apparently have normal thyroid function, which is unusual; most people have diminished thyroid hormone if they remove half. I do feel like I have no energy, but maybe this is due to having been supercharged for apparently quite a long time.

    If you have normal body weight (I didn't, still don't), they can do the surgery so that there's no scar. It's been a year and a half; I don't recall them offering radiation as a choice (possibly because they couldn't get a biopsy to make sure it was benign in advance). The scar is not bad; I used Mederma and silicone strips and you can barely see it.
  • go2grrl
    go2grrl Posts: 190 Member
    I was subclinical hyper for years and a couple of years ago RAI was initially offered as a "solution." But turned out that my entire gland was carpeted with toxic nodules. Biopsies were determined to be "indeterminate," so a TT was presented as my only option to find out if any of them were cancerous. They were not, so I'm stuck on thyroid hormone replacement. Has your dr mentioned possible cancer to you? There's a test called AFIRMA that looks at gene markers if a biopsy cannot be successfully performed. You can read about it here: http://thyroid.about.com/od/cancergoiternodules/a/veracyte-afirma-thyroid-analysis-nodules.htm

    Had my endo known about this test, I might still have my gland or at least held on to it until I went fully hyper and risked cardiovascular damage. My only advice is to avoid the RAI poisoning and do whatever you can to hang on to your gland for as long as you can!!

    -Cynthia
  • islandmonkey
    islandmonkey Posts: 546 Member
    That is what happened to me. They couldn't biopsy the nodule so they removed half my thyroid. Now I apparently have normal thyroid function, which is unusual; most people have diminished thyroid hormone if they remove half. I do feel like I have no energy, but maybe this is due to having been supercharged for apparently quite a long time.


    "Normal" to doctors just means "within normal range", NOT optimal. You are probably hypothyroid. If your doctor is only testing your TSH, you need to ask for a free T3 and a free T4 test. These should be in the top 1/3 of the range your lab uses - anything lower than midpoint is hypo.

    If you have no energy, you are probably hypo. It's VERY unusual for half a thyroid to actually be able to pick up the slack.
  • shvits
    shvits Posts: 249 Member
    I had 1/2 of my thyroid out as I am allergic to iodine and could not have radioactive treatment. Best thing I ever did! glad I did not go radio active. I used to be hungry all of the time and now I am no longer am hungry all of the time. (from my multi nodular toxic goiter). I am much more relaxed. There was no pain post surgery as Dr. Duh is one of the best in the world, injects pain relief into the site at time of surgery. Taking out half is recommended rather then taking it all out at once which is much more dangerous and has serious potential side effects as loss of voice. I took anti thyroid drugs for a while as I did not want surgery or radioactive stuff and lost a lot of hair and it did not really work well. It is not an easy decision. I know, but I was able to make it finally. And once I decided what I needed the decision was fairly easy.

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