New diagnosis--- looking for support!

[OriJo]

Hi everyone,

I've read your posts and know this group is very helpful and informed, so here goes:

I was just diagnosed today with a toxic nodule (producing excessive amounts of thyroid hormone) with the added bonus of additional, smaller nodules growing but for now, not producing. This toxic nodule has been with me and benign for years; it has just recently started misbehaving.

My endocrinologist is saying I can use hyperthyroid meds to "wait-and-see" if they will treat the nodule as they would my thyroid. Her other choice for me is to irradiate and demolish the nodule and probably my thyroid in the process. She explained that it is not urgent, as I am a young patient for this syndrome (42 yrs.old), but that the chances that the meds work are only 50%.

She did not mention surgery as an option, or at least not one that she'd recommend.

• Has anyone had success with meds and a toxic nodule (making blood tests look as if I'm hyperthyroid)?
• Are anyone's docs recommending surgery for them instead of radiation?
• I have also suffered from major weight GAIN (oh, the irony is not lost on me!!!). Has anyone else had this experience?

Thank you so much for your candor and support!!!

OJ

[OriJo]

Sorry I didn't address the last post properly... I am sending you this so you know I've responded.

OJ

[OriJo]

Hello again!

Thank you all for your answers! I guess I could fill in some blanks.

I have had the whole battery of tests: the needle biopsy, the ultrasound, the radioactive iodine uptake scan, and blood work. All levels are up, so that puts me in the "hyperthyroid" category. From the results of the scan, the nodule is taking up the iodine, too, so it is a party to the high levels of thyroid hormone present in my blood work.

The RAI would work to destroy the nodule (so they say) because it is now behaving like a thyroid glad, absorbing the iodine and producing the hormones. And I was warned that the RAI would all but destroy the thyroid while destroying the nodule.

Within the last several months, I went from having the one benign nodule to now having a toxic nodule and two little "pups," both of which I have been informed are now more likely to become cancerous.

I guess I'm wondering if anyone has had success with the hyperthyroid meds eliminating the problem NOT just in the thyroid but in a toxic nodule. My doc said that chances were only about 50%, and this after 18 months of wait-and-see, and if the meds don't work, then it's back to RAI anyway. I'm also wondering if it is worth waiting, or if I should slash-and-burn and go right for the RAI on my own clock.

For Lori 0220, I feel you pain, sister! Thanks for the calorie counting tip, I'll try some discipline.

And for the beautiful redheadaussie, thanks for the specifics and thanks also for posting your pics. You can't know how meaningful it is to see what you've shown us!

898-- Thank you also for being here. And Tutta, Thanks especially to you for being so thoughtful as to respond because I needed it!!!!!!

Hope you all have a good weekend. It's raining here, so the weather is matching my mood.

OJ

[Lori0220]

I'm new myself and I have been to one medical thing or another (1-3 appointments per week) throughout Oct with earlier tests back in the summer.  With all the different visits, I'm getting a lot of conflicting info.  The endo seems to favor radiation in my case (hyper due to hot nodule).  The surgeon suggests surgically removing the entire gland, not just the "hot" side on the theory that it too has or will have nodules.  Per the endo, radiation gives you about a 4 out of 5 chance of becoming hypo.  The surgeon says just the opposite (1 in 5).  Not sure who is right or what to do.  Not even sure if I should do anything since the only reason the whole thing came up was because of a routine test.  I've got very little in the way of symptoms.  I've been losing some weight, but (sadly) not with it just melting off effortlessly (wouldn't that be nice).  Just what's coming from the diet and exercise I started over the summer.  I have seen articles that say that hyper leads to increased appetite which can in turn lead to weight gain and that counting calories should control it.  I don't know if that helps.  Anyhow, I wish you the best.  I know first hand how scary and frustrating it is.

[redheadaussie]

Do you know what your levels are? TSH T4 and T3? Do you know if you are hyperthyroid or is the doc giving you a dosage usually for hyperthyroid?
Any misbahaving nodule needs attention. RAI is one option and as 898 says a biopsy is more than likely needed to see what it actually is. The list is long!
  Welcome to the group and you will find very quickly that we are a supportive bunch of bananas!

[898]

If nodule started to 'misbehave' , it would be a good idea to do biopsy for it. If result is benign, SMALL dose of RAI is good alternative to surgery as it would target this nodule, not the rest of the thyroid.

[Tutta]

Hi OJ.  I an a newbie myself.  I have hashimoto's and don't know anything about hyperthyroid.  Weight gain, however, I do!  Uhg!  Anyway, I wanted to post so you could have a response right away.  One of the hard parts of finding out "medical issues" is how alone you feel.  You are not alone!