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Let's Talk About Thryoids and the lumps the grow. - 1/12/2014 6:09:32 PM

LafayetteLady

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Joined: 5/2/2007
From: Northern New Jersey
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I have two lumps on my thyroid (nodules they call them). One of the lumps has grown to what is considered large at

3.4 centimeteers (greater than 1.5 is considered large). Three ultrusounds since 2010 and each subsequent test showed grow. Not a lot of growth, but growth all the sam. A 2011 biopsy came back benign.

Now endocrinologist says 5% chance it turned malignant. Old primary said 50/50 for future biopsies.

Endocrinologist recommends removal of my thyroid rather than continue with ultrasounds and biopsies every six months. Needless to say, I have docots chosend to get second opinion.

Has anyone here had their thyroid removed or are you close to someone who has? My gut is saying this is not the best action to tak and I want more information.

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RE: Let's Talk About Thryoids and the lumps the grow. - 1/12/2014 6:30:04 PM

Rawni

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After my first pregnancy, I got a goiter and it was at least the size of a golf ball. The hospital panicked and wanted to do surgery right away. My doctor said no and that he wanted to treat it with medication. He didn't want me to have to take medication for life if they took my thyroid.

They said I had Grave's disease and that about twenty years later, I would go from hyperthyroid to hypothyroid. About twenty five years later, I started to have some weight gain and the doctors told me... no... not your thyroid. Other doctors a year later said they needed to jump on that. I took medication for a year and then have had no other problems. I lost the weight I gained and though I am not the size I started out as, I am fairly normal for my size and age.

I don't know if any of this would apply... but from the sounds of what you're saying. I would take the darn thing out. It would be better to regulate things with medication than to face cancer and that type of surgery to deal with it if it did become cancer. (At least that would be my personal choice.)

I hope all goes well!!!

(in reply to LafayetteLady)

Post #: 2

RE: Let's Talk About Thryoids and the lumps the grow. - 1/12/2014 6:46:19 PM

shiftyw

Posts: 2837
Joined: 6/6/2013
From: The Shire
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My mom had her malignant thyroid removed last year, because I had thyroid nodules and she had been told to ignore hers, but after they freaked out about my non malignant (most likely Hashi's but endos all suck, so I haven't gotten the official diagnosis cause its not "bad enough"

). she went to get hers checked, and sure enough, cancer.

If its malignant- remove it. That is the general consensus you're going to find on any thyroid site. Better safe than sorry, people DO die of it, despite it being "a good cancer to get".
Yes, there are a lot of issues after you remove it.
I'm on medication to "control the growth of mine, maybe" (thats a verbatim quote). Its not working, its grown significantly- and I need biopsies, ultrasounds and bloodwork way more than I care to. If they said they'd take it out tomorrow- I would- malignant or not. I, of course, am also at risk for it turning into cancer, and now that my mom has had it, its even more likely.

My mom's problems since removal include:
Hormone issues (although I think that is amplified by menopause.)
Wonky periods (again perhaps menopause is amplifying that)
Tired/Sleep problems
Palpitations
Tingling (although this has gotten better now a year later)
and a lovely NEW diagnosis of "Hypoparathyroidism"- which is a rare complication that happens if they accidently injure the parathyroids upon removal.

There are A LOT of support boards out there- I would google and perhaps pose the question to them (if you haven't done that already)- but I'm willing to bet they'll tell you to take it out, cause again, better safe than sorry.

And I don't know what you're experiences have been- but make sure you have a GOOD endo- that you really like...which is super hard to come by, so I hope that you already do have one.

ETA- didn't finish a sentence.

< Message edited by shiftyw -- 1/12/2014 6:48:22 PM >

(in reply to Rawni)

Post #: 3

RE: Let's Talk About Thryoids and the lumps the grow. - 1/12/2014 10:36:46 PM

LafayetteLady

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Joined: 5/2/2007
From: Northern New Jersey
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Honestly, I'm not anxious to go under the knife again for anything other than kidney stoness. The first biopsy came back benign back in 2011. The growth since then has been minimal, but I started outh with a large growth.

I'm going to get a second opinion, but my thoughts at the moment are to try to treat with medication and continue with ultrasound and biopsy for at least a year if the biopsy comes back benign again. If it comes back malignant then my choice is made for me and removal is the only option. I'm going to switch back to my old primary if he still takes my insurance, ask his opinopn and get a second endo opinion. Going back to old primary because I trust him and already know he will answer questions.

I wanst happy with how nonchalant the first endo was about taking it out. It is major sugery, which cause anxiety attacks for me that they never seem to treat properly which causes more anxiety. I don't know what kind of aftercare is necessary, but I live alone so it might be difficult to handle on my own. His attitude was take it out and then you don't have to have more ultrasounds or biopsies. I sat there thinking, no I just have to take thyroid meds the rest of my life and how long will it take to get the dose right and since I have a problem of becoming resistant to drugs quickly, will that happen in this case?

Oh well...tomorrow I confirm my previos dr takes this new insurance and then I change and see him this week sometime. The new primary I'm not staying with can't see me until the end of the month. I don't want to wait that long.

(in reply to shiftyw)

Post #: 4

RE: Let's Talk About Thryoids and the lumps the grow. - 1/13/2014 6:24:15 AM

momndaughter

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If it helps, I can put you in touch with somebody who had their thyroid removed several years ago, and seems to be doing fine. Let me know, and I'll introduce you :-)

(in reply to LafayetteLady)

Post #: 5

RE: Let's Talk About Thryoids and the lumps the grow. - 1/13/2014 8:46:36 AM

windchymes

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Joined: 4/18/2005
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Hey LL

My approach personally would be pretty much what you stated. I take a conservative approach to most medical issues. I personally would be more comfortable monitoring it for now and seeing where it goes, especially since they've given only a 5% chance of it turning malignant. It's only twice a year, not every month, and if it did turn malignant, it would still most likely be in early enough stages for you to make a full recovery.

I knew someone whose thyroid wasn't malignant, but it caused her so many health problems that she finally threw in the towel and had it removed. This is after several years of doctors and drugs, and she was miserable the whole time. After it came out, she was like a new woman and never looked back. So your current quality of life would definitely have to enter into your decision making. If you're feeling like crap all the time and it's got tumors anyway, maybe having it out would be the way to go. That is how I would make my own personal decision, too.

I know it's a tough one! As far as the recovery from surgery....I recovered alone from major back surgery, so you can do it! Good luck!

Another thought occurred to me....many times, the insurance companies would rather pay for surgery and get it over with then pay for years of testing and medication because it's cheaper for them. That sucks, but if your endocrinologist is recommending surgery, your insurance company may give you some flack about not having it done. I don't know for sure, just giving a heads up that it might be something to watch out for.

< Message edited by windchymes -- 1/13/2014 8:55:17 AM >

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RE: Let's Talk About Thryoids and the lumps the grow. - 1/13/2014 10:49:01 AM

LafayetteLady

Posts: 7683
Joined: 5/2/2007
From: Northern New Jersey
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That's the thing, is no one will talk about my health issues in connection to it. The thyroid controls so many bodily functions and can mess up so much when not working properly. I'm willing to try medication to see if it helps at all but they don't seem interested in doing that.

Quite frankly, I'm pretty sure my hot flashes are caused by my throid and those alone are quite bothersome. I don't have a washer/dryer and have neither the fund or transportaion to do that much laundry that often.

I know it increased my anxiety, agitation and sleep as well.

I thinkmy thought process is also swayed from my ankle sugery. The doctors then too, said this will solve the problem, but never said your ankle is likely to hurt forever afterwards. So I'm wondering what they might not feel the need to tell me about removing my thyroid.

(in reply to windchymes)

Post #: 7

RE: Let's Talk About Thryoids and the lumps the grow. - 1/13/2014 2:34:07 PM

DesFIP

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Joined: 11/25/2007
From: Apple County NY
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Myself if it isn't malignant, I wouldn't want to remove it.
I don't know if you suffer from anxiety, if so the higher levels of meds you'll need to take could cause problems with this.

I had enough trouble adapting to the present dose I'm on, almost a year of elevated anxiety before it settled down some.

I take 112 mcg, my brother who had thyroid cancer takes over 300.

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(in reply to LafayetteLady)

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RE: Let's Talk About Thryoids and the lumps the grow. - 1/13/2014 4:49:48 PM

LafayetteLady

Posts: 7683
Joined: 5/2/2007
From: Northern New Jersey
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But the higher dose is because your brother has no thyroid and the medication mak[image][/image]es up for that.

Yes I do have anxiety issues and with the problems this nodule causes, anxiety levels are already increased.

So for me, there needs to be meds either way. I'm either going to have to suppress or replace. Finding the right dose seems like a long process either way.

(in reply to DesFIP)

Post #: 9

RE: Let's Talk About Thryoids and the lumps the grow. - 1/13/2014 4:53:02 PM

shiftyw

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Joined: 6/6/2013
From: The Shire
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Finding the right dose takes a year after its removed, on average- at least thats what my mom's endo told her.

I would follow your approach, and is basically the approach my doctors have made me take.

It runs everything- and removing it should not be taken lightly.

(in reply to LafayetteLady)

Post #: 10

RE: Let's Talk About Thryoids and the lumps the grow. - 1/13/2014 5:04:17 PM

LafayetteLady

Posts: 7683
Joined: 5/2/2007
From: Northern New Jersey
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Yea it does run everything and right now its running amock!

Seriously. The hot flahes, increased depression and anxiety, screwed up metobolism. You name it, its messed up for me these days.

(in reply to shiftyw)

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RE: Let's Talk About Thryoids and the lumps the grow. - 1/13/2014 6:05:38 PM

ShaharThorne

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Joined: 2/24/2009
From: Somewhere in TX
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Ask the endo what does HE feel in your best interest to do. Mom has benign nodules that are just sitting there. He checks her over yearly, does bloodwork and an ultrasound.

Me on the other hand have hypothyroidism. I don't produce enough of the stuff. I take meds for it. No, I have not seen an endo, just my GP.

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(in reply to LafayetteLady)

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RE: Let's Talk About Thryoids and the lumps the grow. - 1/13/2014 9:14:27 PM

LafayetteLady

Posts: 7683
Joined: 5/2/2007
From: Northern New Jersey
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He recommended removing it. That's why I'm getting a second opinion. He seemed very nonchalant about major sugery that removes an orgon that has such control over the body.

(in reply to ShaharThorne)

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RE: Let's Talk About Thryoids and the lumps the grow. - 1/14/2014 8:58:55 AM

shiftyw

Posts: 2837
Joined: 6/6/2013
From: The Shire
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quote:

ORIGINAL: LafayetteLady

He recommended removing it. That's why I'm getting a second opinion. He seemed very nonchalant about major sugery that removes an orgon that has such control over the body.

I've never had an Endo I liked/felt listened to me.
Its seriously really hard to find a good one.
http://thyroid.about.com/bio/Mary-Shomon-350.htm

^ Thats a good resource. Somewhere in that mess of a website- is a list of recommended doctors.
Also, really sorry you're going through this- and best of luck!

(in reply to LafayetteLady)

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RE: Let's Talk About Thryoids and the lumps the grow. - 1/14/2014 11:17:23 AM

kalikshama

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I had to educate my GYN on the potential adverse effects of the procedure she was recommending

I got a second opinion, who said my condition was a nuisance, and one should reserve surgery for medical necessity.

I agree with her. It's a BIG nuisance, but manageable since I work from home. Death and organ damage, on the other hand, are not so manageable.

(in reply to LafayetteLady)

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RE: Let's Talk About Thryoids and the lumps the grow. - 1/14/2014 9:37:01 PM

DesFIP

Posts: 25191
Joined: 11/25/2007
From: Apple County NY
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Yes, he needs a much higher dosage because of having no thyroid. The risk is that with the higher dosage, your anxiety may be increased that much more. Has the doctor discussed this with you? Because you need to take it into consideration.

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RE: Let's Talk About Thryoids and the lumps the grow. - 1/15/2014 4:41:25 AM

LafayetteLady

Posts: 7683
Joined: 5/2/2007
From: Northern New Jersey
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Theoretically, thee medication is to provide "normal" levels of thyroid hormone, not increased ones. Regardless, my anxiety is high but only unmanageable in certain situations when people ignore the methods I tell them need to be followed to keep it manageable (nothing extreme. For instance IV's need to be done o my hand not arm.)

For the most part, I was pretty dumbfounded at how nonchalant he was about it and though I did ask some questions, there were quite a few I didn't ask. Also, I wasn't terribly happy with the answers he DID give, hence the seeking of a 2nd opinion. In the end, I will have 3 opinions; the first endo, my primary and the second endo. I have not spoken to my primary about this yet since I'm only able to go back to him since I have full insurance again. He IS aware of all the problems with my thyroid, just not this latest discussion with endo.

I've basically decided that unless one of these doctors makes a strong case for removal, I'm leaning towards another biopsy and then, if still benign, medication.

Kali: first, I would never take the recommendation of an OB/GYN in regards to something that is clearly and endocre system issue.

Second: I don't know the extent of your thyroid issues, however, the hot flashes, night sweats, sleep disturbances, increased anxiety and depression along with how this problem throws off many other test results is not simply a nuisance. I would question any doctor who implied my daily misery with this was nothing more than a "nuisance" that I should get used to.

(in reply to DesFIP)

Post #: 17

RE: Let's Talk About Thryoids and the lumps the grow. - 1/15/2014 7:35:26 AM

windchymes

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Those symptoms your described are textbook menopause symptoms, LL

I'm not a doctor, but I'm thinking could you maybe have BOTH issues working against you? The glands in the endocrine system, like the pituitary, pineal, thyroid, gonads, etc. all affect each other in some way, and if one gland is acting up it can help mess up the other glands so they can't do their jobs effectively, either. Has your GYN checked your "female" hormones like FSH/LH, Progesterone, Estrogen, etc? If those levels are off and you're in early or full-blown menopause, it might be necessary to get those back in shape, whether it's by hormone replacement therapy, or supplements, or diet or a combination of those.

Just something to consider, if they already haven't. I know once women get to "that" age, doctors tend to think everything you complain about is "just menopause".

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RE: Let's Talk About Thryoids and the lumps the grow. - 1/15/2014 4:28:04 PM

LafayetteLady

Posts: 7683
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From: Northern New Jersey
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Actually, windchymes, I'm POST menopausal, not having had a period in nearly three years. While the nodules are only a few years known, I have had thyroid issues for quite a while, although no doctor ever wanted to prescribe anything for it. I started menopause in my early thirties, but my doctors refused to test for it saying I was too young. In my opinion, my screwed up thyroid had something to do with it, and you make a valid point that I'm likely getting double whammied here (lucky my, lol).

I don't currently have a gynocologist, but the last just accepted me as post menopausal since I haven't had a period in so long. I'm pretty sure that most of us here realize there could still be a hormonal imbalance even though I (gratefully) no longer get my period.

Since I know the doctor is going to order blood work tomorrow, I'm going to ask him to put that on the list with all the other stuff. I'm tired of messing around with all this crap, so I would rather they run all possible blood tests in one shot. You do realize that along with my symptoms being the same as menopause, they are also the same as Lyme disease and probably a dozen other things, right? Considering I alos am diabetic and have been diagnosed with fibromyalgia along with herniated lumbar discs from a bad fall and herniated cervical discs from being hit by a car, I'm pretty much a walking disaster! Oh, and I forgot that because of the spinal problems chaning the gait of my walk, I have now developed plantar fasciitis. Talking about the walking wounded, huh?

(in reply to windchymes)

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RE: Let's Talk About Thryoids and the lumps the grow. - 1/15/2014 7:45:51 PM

windchymes

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Good lord, girl, you're all messed up! :( My mom also went through menopause in her 30's. She was not fun to live with, lol. What about tumors in the brain that might be affecting the pituitary??? It's called the "master gland" (no pun intended!) and kind of helps control what all the other endocrine glands do.

Something else you might think about doing, I've known people who had exhausted all the traditional medicine tests and treatments and medications without any resolution and went to a non-traditional, holistic/chiropractic/Chinese/Ayurvedic/homeopathic/reflexology or some other kind of practitioner who might order some of the more "esoteric" tests like allergy and food sensitivity testing, or other tests along that line. ????

_____________________________

You know it's going to be a GOOD blow job when she puts a Breathe Right strip on first.

Pick-up artists and garbage men should trade names.

(in reply to LafayetteLady)

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