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Old 04-14-2010, 04:34 PM   #1
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Bypassing FNA For Thyroid Nodules and Going Straight to Surgery?

Hello.

Before I dive in with my question, I just wanted to say thanks to all who have posted on this wonderful forum—both questions and suggestions. I have learned much from reading here. In my short time doing so, one handle in particular seems to pop up with great frequency in the suggestions column: Reece. To you, I say a special thank you. I have learned more in one day reading your posts than I have in all of my visits to my endocrinologist's combined.

(Okay, here goes--and sorry for this being so long.)

Over the past few years I have had a spate of health problems that have gone from bad to worse. Numerous tests have revealed only more questions, but to keep this as concise as possible, I will stick to the one health problem for which I do have a concrete diagnosis: hypothyroidism.

(By the way, I am a thirty-eight year old male, non-smoker/illicit drug user/drinker, who exercises six days a week, three days anaerobically and three days aerobically, eats a balanced diet, and follows his prescription instructions to the tee).

For my hypothyroidism, I currently take 88mcg of levothryoxine, but this does nothing at all to allay my many symptoms:


  1. Fatigue so bad I earnestly do not know how I make it into work each day (or do anything once there; when it comes to exercise, though, which I take to during the middle of the work day, I seem to find some energy once I get in the gym and get moving);
  2. A brain fog that steals away my short-term memory to the point I sometimes am unable to remember what I did only a few minutes before; also, I was once a pretty articulate guy; now I am pretty much a bumbling idiot, stuttering and stammering all over the place;
  3. Icy cold hands and feet when the temperature drops below eighty;
  4. Hair loss;
  5. Dry skin;
  6. Inability to gain even one pound (the one hyperthyroid symptom I have);
  7. Difficultly swallowing;
  8. Hoarseness;
  9. Difficulty breathing, especially through the throat;
  10. And, gastrointestinal discomfort which likes to metronome back and forth between constipation and diarrhea but in either direction leaves plenty of room for bloating.


My last TSH score was around a 2.5. I do not have the specific panel of numbers most posters here provide because my endocrinologist saw "no reason to give them to me" (I know, I know: I should have insisted; lesson learned from reading on this forum; in the future I will require a copy of all lab tests (also I have learned how to order my own)) .

About three months ago she ordered an ultrasound of my thyroid, but it was only during my visit with her a few weeks ago that she told me the results (after she performed her own ultrasound test right there in her office; why she did not do this initially, rather than sending me elsewhere for the test, I would love to know). The ultrasound in her office confirmed the one I had forty miles away and three months earlier: a pair of small nodules, one large enough to biopsy, the other too small for biopsy (although I have learned from this board that this is may not necessarily be true, that there may be a way to biopsy even very small nodules). I do not have specifics about these nodules, because, once again, there was "no reason to give them to me" (and because I am idiot for not requiring that she provide me more information).

Following the ultrasound, she ordered a fine needle aspiration for the end of next month. I agreed.

However, a few hours after I left her office and had read dozens of cases of folks who had had the FNA, were told that the test showed no evidence of cancer, but later learned that they did have cancer, I began having serious reservations about the test.

The way I see it, my thyroid is working pathetically now: I can feel no worse than I do now (well, without someone actively torturing me, I guess); and because I am on thyroid medication anyway and always will be, and the nodules, even if not cancerous now, could become so, why should I bother with a test that could possibly return a false-negative, or a false-positive, for that matter, or be inconclusive and require further biopsies, or whatever, why do all of that if I can just have the **** thing removed (total thyroidectomy)?

It takes forever and a day to get in to see the doctor, and ten times forever to have a test, get the results, have the results analyzed, try a new dosage of levothryoxine, play the ‘Oh, we don’t prescribe that here’ game (“Oh, natural thyroid? Silly man! Why of course we do not prescribe that, and for all of those thousands of people who say it helps them, oh well, they must be liars”), ad infinitum.

Sorry for the rant there--I told myself I would leave emotion out of this, but I am just too tired now to go on anything but emotion. I just worry that perhaps I have in me a cancer, and I hate the idea of screwing around with it, waiting on this and that; I also hate the idea of having nodules monitored for the rest of my life when I could have them excised (more could grow, but if I had a thyoidectomy, I suppose not?).

I realize have given limited information on which to go here, but based on what I have written, what do you think I should do? I have written to my doctor’s office and expressed my concerns (with complete civility and disclosure), but I have received no responses so far (it has only been a week, though). Should I have the FNA? Go directly to a surgeon? Something in-between?

Thanks for reading and any suggestions you might have.

JR
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Old 04-14-2010, 05:25 PM   #2
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Re: Bypassing FNA For Thyroid Nodules and Going Straight to Surgery?

I saw an ENT/surgeon first (the one I went to wasn't the one I'd let touch me for surgery, but he was competent).

Some ENT's follow a certain protocol. It helps them "build a case" this enables them to justify the surgery (probably helps them for insurance purposes too). This ENT I saw, did first an uptake scan to see if the nodule was hot or cold (this step is often skipped), and then did an FNA in his office. In my case, the whole debate stopped there, as my fna was positive for pappillary (this is unusual)---to be honest, the size of mine, 2.5cm, and the fact that it was solitary on the right side, made me decide to get it out no matter what.

You are right, only a full surgical pathology can tell you definitively if you have cancer or not. If you have hashis, you likely don't have cancer, but probably have a poorly functioning thyroid that's almost useless to you.

I don't know the size of your larger nodules, but if there has been growth or change, and since you are a male, (even though women have increased thyroid cancer risk, if a man has a nodule, it's a larger red flag), your doctor could build a case based upon size and change.

You can go to the surgeon, and have someone who has a lot of experience help you decide what to do based upon his/her experience, and go from there. If you go to a quality surgeon, at a quality facility, you should let that person help you decide.

And don't panic, thyroid cancer statistics don't change much by "catching it early", as it's slow growing, and a larger nodule doesn't mean spread, and most often when it does spread, it's still treated/cured the same way.

Last edited by Reece; 04-14-2010 at 05:34 PM.

 
Old 04-15-2010, 10:28 AM   #3
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Re: Bypassing FNA For Thyroid Nodules and Going Straight to Surgery?

Reece,

Thank you for your reply. I did not know that for men a nodule raises a red flag more than it does in women (another day, another something learned ). I understand what you mean about building a case. If I go to a surgeon and want surgery right away, with only an ultrasound report in hand, I am not likely to get much of a positive result from him. I will try to find a surgeon and inquire about having him do an FNA, rather than having my endo perform the procedure. This might save time and unnecessary trips to my endo.

Okay, now I have a truly dumb question . I have never made an appointment directly with a surgeon. My insurance is BCBS Federal, and while with them I have never needed a referral to see a doctor (which I appreciate immensely); I wonder if I would need one to see a surgeon, though? (Now that I think about this, I am pretty sure I would not. I can find out easily enough from their website.)

One thing I failed to mention in my original post was that my mother has Hashitomos (has had it for as long as I can remember; she takes synthroid to manage it and has not her her thyroid removed). I have read that there is some evidence this disease is hereditary. If I have this as well, my preference would still be to have the thyroid removed even though the possibility of cancer would be small. I suspect this might a tough sell to a surgeon, but perhaps if I shop around enough I may find one willing to do the procedure.

I see that during the time that I have typed my reply here, the endocrinologist's office has called and left several messages. It will be interesting to speak with them this afternoon. Perhaps they will surprise me by what they have to say.

I am glad you have recovered so well from your ordeal and that you come onto these boards and help others going through their own ordeals. You faced what everyone fears most head-on, and won. And now you are helping other people have the chance to win, too.

JR

 
Old 04-15-2010, 11:25 AM   #4
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Re: Bypassing FNA For Thyroid Nodules and Going Straight to Surgery?

I'm not so sure that you should have your thyroid removed if you don't absolutely have to. I would also think that if you do have to remove it, it would be better to know what you are dealing with up front so that it can be removed properly. I know biopsies aren't 100%, but it can hopefully give you more information to make an educated decision. I would want all the information I could get before having my thyroid removed.

As far as your test results, ask for them and don't leave until you get a copy of them. They are YOURS! Your lab results could be another piece in the puzzle that can help you make an informed decision about what to do.

Last edited by herekittykitty; 04-15-2010 at 11:27 AM.

 
Old 04-15-2010, 11:32 AM   #5
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Re: Bypassing FNA For Thyroid Nodules and Going Straight to Surgery?

I fortunately, don't need referrals, and I always make appointments directly with whatever specialist is appropriate. An ENT/ontrongologist does a great deal of head neck surgery (especially in University hospitals where it's often cancer surgeries), but they also handle your basic sinus infections, ear infections, and strep throat infections too, so it's not unlike going to see any other type of specialist like your endocrinologist, they are a combo of medical doctors and surgeons, if that makes any sense.

I really think your nodules are more likely from thyroid disease----especially with your mom's hashis, but get a great surgeon, and this surgeon will help you figure out the best next step. Sounds like you should find a good in case you need to get this out, you'll want a good manager for your hormones.

Let us know what the endo says!

 
Old 04-15-2010, 12:41 PM   #6
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Re: Bypassing FNA For Thyroid Nodules and Going Straight to Surgery?

Reece/Kitty,

Thank you both so much. I attempted to contact the doctor's office to return their calls, but no one was home. At work, I have to walk out to the parking garage to make "those" type of calls because calls in our office are digitally recorded and there are quite a few folks nearby who can overhear every word anyway. Not a pleasant environment for personal calls. I am off tomorrow, though, and can call their office as many times as I want until I finally reach an actual human being

In the meantime, I have retrieved from my provider's online directory a list of surgeons who are accepting new patients.

I will talk to someone in the endocrinologist's office tomorrow, and if I get the feeling that under no circumstances save proof of cancer they would consider partial or complete removal of my thyroid, I will end the call and get in touch with the surgeon's office.

Kitty, I hear you about not having my thyroid removed unless I am sure it is with what I am dealing. There are certainly risks associated with such a procedure; however, I feel the potential rewards outweigh those risks. I have little confidence in the results of an FNA, even though some on-line medical sources suggest it is a fairly accurate test, and I have no desire to have my nodules monitored for the rest of my life. I am fairly young now, the nodules are still small (so less scaring, I believe?), and I am in a good position at work to take off whatever time I need to recover. I would like complete resolution of all my symptoms, one day to feel good again about waking up in the morning, and even if neither is not possible, having my thyroid removed would most likely at least give me back my voice and allow me to swallow and breathe again without feeling as though I am trying to pass a large bug through my throat. At the very least, this. And if something does go wrong with the surgery, I will have no regrets, because I will have known and accepted the risks going in.

You are so right about the test results--from now on I will always require them!

Thank you both so much for your responses. Because of you I now have several viable options on the table. I will post back tomorrow after speaking with someone in the endocrinologist's office, and in case anyone might be going through the same thing and having the same concerns and reading this, I will continue to post here until the matter is seen to the end. Something tells me this may be a long journey with more twists and turns than I am expecting.

Have a great day.

JR

 
Old 04-15-2010, 04:25 PM   #7
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Re: Bypassing FNA For Thyroid Nodules and Going Straight to Surgery?

Hi JR,
Just my thoughts I am not a doctor,I would have your thyroid taken out if it would help to feel better about your nodules.My mother had her thyroid taken out when she was 19,thyroid runs in my family both sides.I am hypothyroid and take Levoxyl.I have a small solid nodule on the right side of my thyroid that was found on an ultrasound.My cousin on my father's side had a nodule on his thyroid and they said he did not have cancer but they took out his thyroid about 22 years ago.He is now 60 maybe and takes Synthroid.
I hope your doctors can help you to feel better,my symptoms were profound fatigue,being so cold that my bones hurt,brain fog...Please let us know what happens and I hope you are feeling better soon,Please take care...pinkprincess3

 
Old 04-15-2010, 05:03 PM   #8
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Re: Bypassing FNA For Thyroid Nodules and Going Straight to Surgery?

pinkprincess3,

Hi. Thank you for sharing your experience. I am sorry to hear you have thyroid issues on both sides of your family, but it sounds as though you are satisfied with your current treatment plan (you said your symptoms were; so I am going to guess that now you feel much better?; I hope that is so!).

Yes, if my thyroid were removed I do believe I would feel significantly better, and I hope that my when I speak to someone in my endocrinologist's office tomorrow he or she is at least willing to entertain the idea of removing it. My strongest, most intimate gut sense tells me that removing it is the right thing to do, and my mind tells me that it may be quite a fight to get anyone in the medical community to agree. At the very least, I hope that with whomever I speak tomorrow in that endo's office will be less than combative (I swear sometimes, and this seems so only within particular specialties, that doctors and staff are purposefully antagonistic and/or dismissive toward patients, and there is never a good reason for being that way when a patient is earnest in his concerns and polite in expressing them).

I hope you are your family are all well and enjoying this beautiful day.

Best wishes.

JR

 
Old 04-15-2010, 06:25 PM   #9
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Re: Bypassing FNA For Thyroid Nodules and Going Straight to Surgery?

JR,
No matter what always remember you have to pay attention to how you feel,when we are sick our bodies try to tell us something is the matter.I hope you can find a doctor/doctors to listen to you and that in the end you do whats best for you.Sometimes,it takes longer than we wish it did.Hope you get to talk to someone at your doctor's tomorrow,Rest as much as you can and Please let us know what happens....pinkprincess3

 
Old 04-16-2010, 10:21 AM   #10
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Re: Bypassing FNA For Thyroid Nodules and Going Straight to Surgery?

pinkprincess3,

Thank you for your reply (I agree with everything you said; I wish that once in a while my body had *nothing* to say to me; in fact, I would like for us to go many years without speaking again).

I spoke a few minutes ago with a nurse from the doctor's office, had a good conversation with her in which I felt she was forthcoming with information and suggestions. I learned that my nodules are located on my isthmus. One is 0.9 x 0.6 x 0.4 cm; the other is 0.4 x 0.4 x 0.3 cm. The nurse noted my concerns, and noted that the doctor took them into consideration, as well. She said that the doctor suggests I go through with the FNA, as doing so will provide me with information I may then take to a surgeon (precise location of the nodules and specifics about them that may go beyond what the ultrasound returned). A surgeon, the nurse said, will need to have this information before he will take any action. Because of the size of the nodules, she said that even if they are cancerous they are unlikely to pose any great risk in the six weeks I have until my biopsy.

So now I at least have an action plan:
  • Get in touch with a head and neck surgeon, tell them of my situation;
  • Have the biopsy taken May 28th at the endocrinologist's office;
  • Wait two weeks for the results;
  • And then take those results to the surgeon and request from him a thyroidectomy.
It seems as though this process is going to require a lot of waiting, but by the end of this summer this could all be resolved.

I appreciate the support I have been given on this board more than I could ever express with just words.

JR

 
Old 04-27-2010, 08:50 AM   #11
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Re: Bypassing FNA For Thyroid Nodules and Going Straight to Surgery?

Because of a cancellation, I am able to get in for the FNA tomorrow morning. The way my neck has been hurting the past week (the nodules feel sore to the touch), I feel fortunate to be able to get in for a biopsy so quickly. Very. I see that a number of folks on this site who have gone through this opted for no numbing shot prior to insertion of the biopsy needle, and I am just wondering if this had anything to do with the location of the nodules, or was it only that the numbing shot was another (and unnecessary) shot?

(I have a prescription numbing cream to apply one hour before the procedure, but I imagine this will only work superficially; I suspect the numbing injection is for the tissue immediately surrounding the thyroid?).

Thanks very much.

JR

 
Old 05-04-2010, 04:33 PM   #12
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Re: Bypassing FNA For Thyroid Nodules and Going Straight to Surgery?

Just want to update this thread, in case someone else has a similar of the same problem and reads through this.

I had the FNA last Wednesday, the 27th of April. After having seen the procedure on YouTube, I was surprised by the actual experience, which was nothing like the horror show I saw on YouTube.

I was given a cream to apply one hour before the procedure, which I did, to no noticeable effect. My appointment with the doctor was more or less on time. The doctor said little before, during and after the procedure--no nurse or other medical professional was present for the procedure; it was just the two of us.

I was told to lie back on a table and rest my neck upon the folded towel placed there, effectively tilting my neck slightly up. A photo of a tropical environment that was hung on the ceiling came directly across my field of vision (a nice touch idea, in my view).

The doctor, an endocrinologist, then turned off the lights and came over and used ultrasound to find my nodules.

Already my heart was pounding so hard my entire body was moving up and down, but I kept silent--I wanted it over with as soon as possible, no matter the pain.

Once the nodules were found, the doctor dabbed my neck with something that felt wet, said to expect a sharp stick, and then inserted the needle into one of the nodules and collected the fluid into a vial. I felt no sharp stick, no pain whatsoever; in fact, I wondered if she had inserted a needle at all. After a few seconds, she turned on the lights, walked over to a table, placed there the vial.

She repeated this this process five to six more times, and only once did I think, "Okay, maybe the needle is going in now?" Throughout there was zero pain, and almost no pressure, and in retrospect I felt embarrassment that my heart was scudding the way it did (deep belly breaths helped only slightly with this). Maybe the lack of pain and pressure had to do with the location of the nodules on the isthmus; someone else on this board can speak more intelligently on this, however--I am just guessing here.

Next up will be getting the results, which is expected to take one more week. I will post back again when I have them, and then whatever steps may follow. I want to thank the board again for all of the feedback I have received.

JR

 
Old 05-06-2010, 04:09 PM   #13
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Re: Bypassing FNA For Thyroid Nodules and Going Straight to Surgery (Update)?

Posting a follow-up in case anyone is following this thread.

The doctor's office called a few minutes ago--just a little under a week before I expected the results. The receptionist said the doctor would like to see me tomorrow morning. It is difficult to take this as anything other than an ominous sign, but I feel unwell and have for so long I am unable to remember when last I felt well, so perhaps bad news in the very near future will be better news in the long term. I give my endocronologist kudos for manually detecting nodules so small, and her office for working with me to get the earliest FNA possible. And I also want to again give kudos to the fine folks on this site, who have been so helpful and supportive.

JR

 
Old 05-06-2010, 05:12 PM   #14
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Re: Bypassing FNA For Thyroid Nodules and Going Straight to Surgery?

It's rare that an FNA shows cancer. Mine did, but it was pappillary, and even that isn't that common to find on an FNA, because it only gets a sample of cells, and you don't know what else is lurking there.

What usually happens is (and this might be what you have to prepare for), there are "suspicious" cells, meaning, if there are follicular or hurthle cells, the only way to know if it's cancer is to remove the entire nodule, and see if there was capsular invasion---if the cells escaped the nodule and in that case it's considered cancer, otherwise, it's benign. Unfortunately the only way to know in these and most circumstances is with surgery---yuck. My mother in law had this situation, and afterward everything was benign.

If you do need surgery, just make sure you get the best and most experienced neck/thyroid surgeon you can find.

And stay away from you tube---it reminds me, of how I looked at thyroidectomy scars on the internet before my surgery, and those looked like frankenstein--I was so scared of having that-----those must have been from the 1950's, as my scar is totally unnoticeable---even to neck surgeons!

Thanks for keeping us updated---still wishing you everything benign!

Last edited by Reece; 05-06-2010 at 05:15 PM.

 
Old 05-06-2010, 05:42 PM   #15
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Re: Bypassing FNA For Thyroid Nodules and Going Straight to Surgery?

Hi JR,I am reading along with your story.Please let us know what happens.Please take care...pinkprincess3

 
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