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 Post subject: thyroid nodules
PostPosted: Thu May 15, 2014 9:25 am 
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An ultrasound revealed a pair of nodules on my thyroid. I start followup appointments with my doctor later this week, and with an endocrinologist in early June.

Has anyone ever dealt with this? I'm anxious.

Could these be related to my constant symptoms of hypothyroidism (even with a very low TSH)?

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 Post subject: Re: thyroid nodules
PostPosted: Thu May 15, 2014 8:50 pm 
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I'm dealing with it now. I actually just had an ultrasound this morning, and had a scope put down my nose/throat last week (yuck, I know). I am leaning towards having surgery to remove half my thyroid (this is assuming that they don't discover it is cancer, but it wasn't when they did a fine needle aspiration biospy on it about two years ago). Thus far, every time they have tested by thyroid function, it has been normal, despite a strong family history of hyperthyroidism. I think some nodules can be "hot", wherein they are producing more thyroid hormone.

I go back to the doctor to find out the results of my ultrasound next week. The doctor wanted to know if the nodule has grown in the past two years and I really don't know (I only have the one, so it's kind of hard to compare it to anything!), so he is going to compare this new ultrasound to the one I had a couple of years ago. He said that surgery is up to me and that it's a quality of life issue. For me, my nodule is fairly large (I think) and I can feel it every time I swallow, plus I get hoarse a lot. My nodule is fairly noticeable--it is visible even without feeling my neck.

The alternative to surgery is having the nodule biopsied every 1-3 years for the rest of my life.


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 Post subject: Re: thyroid nodules
PostPosted: Sun May 18, 2014 1:55 pm 
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Tzippy, that sounds scary. I'm so sorry that you have to deal with all of this, and the prospect of surgery.

It sounds like I have two nodules--one big, one small, and I will have an appointment with an endocrinologist in early June, and will get both biopsied. What was your experience with the fine needle aspiration biopsies? It all sounds scary.

I'm confused because my TSH reads as the low end of normal, but I have every evidence of hypothyroidism, all of which has gotten noticeably worse in the past two years. My regular doctor says if the TSH is normal, then there's no treatment to give. She said it could be depression, but I've been through that before and am not depressed at all now. So I am very frustrated. I have every listed symptom for Hashimoto's, except the TSH level. I don't know if or how these nodules fit in to any of this. I'm hoping to learn more with my endocrine specialist appointment.

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 Post subject: Re: thyroid nodules
PostPosted: Sun May 18, 2014 2:41 pm 
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Have they also tested your t3 and t4? I heard those can reveal more about the symptoms. I've been on thyroid meds for hypothyroidism for years and I'm experiencing some shitty sptins now even though I'm on meds and the TSH levels are "normal". Don't give up trying to push for an answer. Your symptoms are just as important as the test results if not more so. I'm sorry you guys are going through this!


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 Post subject: Re: thyroid nodules
PostPosted: Sun May 18, 2014 7:43 pm 
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The fine needle aspiration biopsy wasn't terrible, but it certainly isn't something I want to repeat every 1-3 years for the rest of my life. They numb the area first, but they use a needle to do so, which hurt. I was convinced it hurt more than just doing the fine needle aspiration without numbing it would have (but of course I have no way of knowing that!). It hurt to move my neck much for the rest of the day, but it was fine the next day. At the time that I did all of this, I didn't have health insurance, so I was also terrified of the financial aspect of possibly having cancer with no health insurance. I am sure that added stress made the biopsy seem even scarier than it was. Now I have health insurance, but there isn't an endocrinologist in network for me (unless I want to drive an hour each way), so I am seeing an ENT.

Other than being a little underweight (but no weight loss--I've always been small) and night sweats (which I've had most of my life), I really don't have any hyperthyroidism symptoms, so doctors haven't been interested in doing more than the basic thyroid tests.


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 Post subject: Re: thyroid nodules
PostPosted: Wed May 21, 2014 8:27 pm 
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I had my follow-up appointment today. The good news is that my nodule hasn't grown in the two years it had been since I'd had an ultrasound. It is 3 cm, though. My doctor said if I had come to him 2 years ago and had a nodule this big, he would have wanted me to have surgery ASAP. Since it hasn't grown in that time, though, he's not as concerned, but is still in favor of surgery. Apparently my nodule is follicular and the fine needle aspiration biopsy isn't as accurate for that type, so monitoring it that way for years isn't desirable. I don't really think in terms of centimeters, but I converted it to inches and it is 1.18 inches...that seems rather large to me!

I'm leaning towards surgery. The surgery scheduler is supposed to call me in a day or two to see if I have decided, but the doctor said I am free to tell her I want more time to think about it (or to just say no to surgery at this time).

molasses jane, are both your nodules on the same side of your thyroid?


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 Post subject: Re: thyroid nodules
PostPosted: Wed May 21, 2014 9:16 pm 
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Hey Tzippy, here's my story, but I don't know how it relates to your issue. No one every talked about nodules to me, rather goiter, but 5 cm sticks in my mind. It was glaringly obvious but soft, but never bothered me, although at the end my ultrasound technologist told me it was infringing on my esophogus and needed to be dealt with. My Kaiser Permanente endocrinologist did a needle biopsy yearly for many, many years - and it never grew - but all he got were watery fluids and an 'inconclusive' diagnosis. I've since heard that biopsies taken without ultrasound are a 'shot in the dark' and pretty useless. The only option that Kaiser (10 years ago) was willing to offer me was complete removal of my thyroid if they went in, so I opted not to.

Both of my sisters have had thyroid cancer (one with 5 nodules affected), so it was stressful. Finally, I was able to change insurance providers and got constructive help. I had debilitating autoimmune problems for 30+ years, which 1 day after switching to a new provider was diagnosed as hyperparathyroidism. They found which parathyroid gland was causing problems (we have 4 surrounding the thyroid, and this was a tumor on one of them,) and while they were removing it, also removed and biopsied the 1/2 of my thyroid that had a goiter. It was benign. But the out-of-control parathyroid hormone generated for so many years by the parathyroid tumor basically destroyed my bones, plus a host of other nasty irreversible problems.

My non-Kaiser endocrinologist was also able to tell me, with advance testing, that I was unlikely to need supplemental thyroid hormone if I had a 1/2 thyroidectomy, which is why I went forward with it. I've had several friends who also had benign nodules removed who weren't so lucky. And I know from both of my sisters, thyroid meds aren't a perfect replacement for your own.

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 Post subject: Re: thyroid nodules
PostPosted: Wed May 21, 2014 9:41 pm 
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Hey, it wouldn't let me edit! I wanted to say that both of my sisters had follicular thyroid cancer. One had surgery at 32 (but we think she had it for 20 years by then) and the other (w/ 5 nodules) was diagnosed at age 60. Older is not as good for survival. The former has now survived for 33+ years and the older for 7 years, but with yearly body scans recommended. And she also had radioactive iodine treatments.

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 Post subject: Re: thyroid nodules
PostPosted: Thu May 22, 2014 11:11 am 
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Jill, what was recovery from your half thyroidectomy like?


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 Post subject: Re: thyroid nodules
PostPosted: Sat May 24, 2014 12:16 pm 
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Tzippy, that sounds stressful! How are you doing about all of this? Have you decided on surgery, or something else? I've never heard of a follicular nodule, but this is all very new to me. I'm sending you good thoughts as you work through the decision-making process.

I have two nodules, one on each side, one bigger than the other. I'll learn more when I go to the endocrinologist June 4.

Jill, your story leaves me feeling anxious, as I'm set to meet with an endocrinologist appointment at Kaiser Interstate in PDX. I've had what I think are thyroid-related problems (hypo) for years and years, and no one has taken me seriously at Kaiser and I'm frustrated, but it's the insurance I get free through work so I feel stuck.

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 Post subject: Re: thyroid nodules
PostPosted: Sat May 24, 2014 4:47 pm 
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I'm leaning towards surgery, and went ahead and scheduled it for June 26 (but I can still cancel it if I change my mind). I've been thinking about the surgery for over a year now, but I didn't have health insurance until this year. I just want to be able to stop thinking about the nodule every day!


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 Post subject: Re: thyroid nodules
PostPosted: Wed Jun 04, 2014 1:28 am 
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Tzippy, where are you at? Still planning on June 26 surgery?

I have my endocrinologist appt. tomorrow. Nerves.

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 Post subject: Re: thyroid nodules
PostPosted: Wed Jun 04, 2014 7:26 am 
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Yep, still planning on the surgery. I'm waiting to see if my momma will be able to come up for the surgery. She's been having some issues with her Crohn's Disease and her doctor's appointment is today. She asked me last week if I wanted her to come and I got her to agree to wait to decide until after her appointment today. I do really want her to come, but I don't think it's fair to ask her to if she's not feeling well herself.


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 Post subject: Re: thyroid nodules
PostPosted: Wed Jun 11, 2014 12:30 am 
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One of my nodules is 3cm, the other is smaller. I have a biopsy scheduled for later this month. I'm anxious.

Endocrinologist was a crasshole and told me to eat meat, and that there was no way I have thyroid problems. Then she told me to count calories. I'm so flipping mad.

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 Post subject: Re: thyroid nodules
PostPosted: Wed Jun 11, 2014 6:40 am 
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I was just coming here to ask how your appointment was! I'd be mad about that endocrinologist, too. Do you have the option to see anyone else?


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 Post subject: Re: thyroid nodules
PostPosted: Fri Jun 27, 2014 8:07 pm 
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i had my fine needle aspiration biopsies this morning. it was so scary and it hurt so much. they had to make four pokes in and out of the right big nodule, and the smaller one of the left is on the back, and they couldn't see it clearly in the ultrasound so gave up after poking around a bit. i was in a lot of pain and started crying. they gave my two xanax to take before which have knocked me out all day, and know there's a huge bruise on my neck and it hurts.

now the waiting. i really hope it's not cancer.

i stayed with the same doctor for now, and she wasn't awful today, though i still don't like her.

having this kind of needle poking going around in your neck is just so freaky. i'm not sure why. i don't think it would have been as bad in my arm or my leg.

i'm really tired.

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 Post subject: Re: thyroid nodules
PostPosted: Sat Jun 28, 2014 10:31 am 
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I'm sorry it hurt so much :-(

I had my surgery on Thursday. Recovery hasn't been as bad as I thought. I haven't taken oxycodone since dinner last night and am getting by with Tylenol now. I'm not sleeping super well, but am able to nap a lot. My momma came in the day before the surgery and left this morning and I have my boyfriend helping me. It might be different on Monday when he has to go to work, as I am not allowed to lift more than 5 lbs. They took out the drain yesterday and I'm glad it's gone, as that was kind of gross. I go back to the doctor on the 7th.

I look forward to being able to shower!


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 Post subject: Re: thyroid nodules
PostPosted: Sat Jun 28, 2014 11:57 am 
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Oh wow, Tzippy! Congratulations on being done with the surgery. That must bring some peace of mind, at least. You just had half removed, right? And now what happens in terms of treatment and moving forward?

I hope you are resting and doing some fun internet window shopping/recipe reading while you are recuperating.

I feel a bit better today. Groggy. Now the waiting game. Nervous.

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 Post subject: Re: thyroid nodules
PostPosted: Sat Jun 28, 2014 12:23 pm 
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molasses jane wrote:
now the waiting. i really hope it's not cancer.

how long is your wait? fingers crossed.

I hear you about it being painful. I think it's probably the worst procedure I've ever had.. I remember trying to mentally take myself away from it all so I started singing (in my head) "heaaaads, shoulders, knees and toes! knees and toes" but the first two were too reminding me of what they were doing with my neck..so my song ended up just being "KNEES AND TOES KNEES AND TOES KNEES AND TOES"

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 Post subject: Re: thyroid nodules
PostPosted: Sat Jun 28, 2014 2:43 pm 
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They only took out half, yes. They are still sending it off for a full biopsy, but they are almost certain it wasn't cancerous and that I can keep the other half of my thyroid. When only half of your thyroid is removed, the other half is supposed to take over the full function, so I shouldn't need to be on synthroid or anything at this time. I have my follow-up appointment on the 7th and will hopefully be off lift restrictions by then, as well as allowed to get the surgery site wet. I have more side to side movement in my neck today and I'm off the narcotic painkiller, so I think I'll be driving by then.


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 Post subject: Re: thyroid nodules
PostPosted: Wed Jul 02, 2014 1:05 am 
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Doctor called and results are that I have something called "follicular neoplasm." I'm not sure what this means. She said it's indeterminate, but I could have cancer, or I could not have it. We have an appointment tomorrow to discuss options. From what I read online the most frequent treatment is to have surgery to have half of the thyroid removed, or sometimes all of it.

My nodule is 3cm too. Is follicular neoplasm what you had too, Tzippy? I have another nodule on the left side, smaller, but she couldn't get it with the needle during the biopsy.

I'm so stressed with my career right now and this is all too much.

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 Post subject: Re: thyroid nodules
PostPosted: Wed Jul 02, 2014 8:05 am 
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I know my doctor said mine was follicular, but I don't know if he used the word neoplasm. If, during my surgery, they had done some sort of quick biopsy and discovered that I did have thyroid cancer, they would have taken out the other half. If that biopsy was negative (which it was), they would stop with the half that had the nodule on it. If the biospy was inconclusive, they still would have stopped and then done a full biopsy on the part they removed to decide if I would need to have another surgery to remove the other half. I'm not sure if your doctor will present different options to you, though, since you have nodules on both sides, though of differing sizes. My nodule was apparently golf ball-sized (though more ovoid-shaped) and up against my throat, so I still think surgery was the way to go for me. Recovery has been easier than I thought it would be. I'm still on sick leave, but am really not in much pain...I'm more itchy than anything.


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 Post subject: Re: thyroid nodules
PostPosted: Wed Jul 02, 2014 9:49 pm 
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Talked to the doctor. Definitely have to get the half of the thyroid with the 3cm nodule on it out. They want to do another FNA biopsy to try once again to take a look at the 1.44cm nodule on the back of the other side of the thyroid. So I'm for certain getting one half out. Maybe all of it. They'll test the 3cm nodule after it's out to see if it's cancer.

Stress. Freaking out.

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 Post subject: Re: thyroid nodules
PostPosted: Thu Jul 03, 2014 10:17 am 
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I'm sorry to hear that. From what I've read, the vast majority of thyroid nodules are benign, so I'm hoping you're part of that majority.

I know you don't want to to the FNA again, but at least you have a better idea of what to expect this time.


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 Post subject: Re: thyroid nodules
PostPosted: Mon Jul 07, 2014 9:03 am 
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Well now I'm trying not to freak out. I had my follow-up doctor's appointment this morning (although they accidentally made my appointment w/ the doctor that assisted mine in surgery, and not my usual doctor). He said they thought the nodule was benign when they did the biopsy during surgery, but when they did a more in-depth one after surgery, it showed some atypical cells and they sent it off to a lab (either in Bethesda, Maryland or Houston, Texas) for further testing and that they don't have the results yet. :-(


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