# I have been given the option of partial removal or to wait and see... need some opinions please :)



## hbradley (Feb 20, 2014)

Good afternoon everyone,

I am new to this site and I am honestly needing some guidance from you guys, and I apologize if this is a little long. I have been dealing with several medical problems the past couple of years, and I am so sick and tired of doctors telling me they do not know what is wrong with me. I was diagnosed with PCOS two years ago, but my endo decided that that was probably not a correct diagnosis for me considering I had a few more symptoms that looked like cyclical cushings...but the doctors have not been able to test at the right times to get a good lab result to move forward with that.

My endo was also concerned with my thyroid and neck area so that is where this next mess comes from 

So my neck became very large in a matter of a few months. It looked as though I had a goiter, and it became more difficult to swallow. I constantly feel like I have crud in my throat, because I feel like I cannot swallow everything so it just sits there...I know TMI...

So moving on, my endo was concerned about this and sent me for a ton of labs for my thyroid and some hormonal levels. All of them came back normal (and they are still normal which is quite frustrating). After that my endo took a job at the mayo clinic and left me without answers so I just kindof "forgot" about it for a year. After that time I went to a doctor to discuss my weight which has been an issue for the better part of 3 or 4 years. I gained 90 pounds in a matter of 3 months, and i wanted some answers!  He sent me for a thyroid ultrasound which found a few nodules.

Here is the report...

1/13/12

Indications: Goiter

Comparison: None

Findings: There are at least 4 rounded hypo echoic cystic-appearing lesions with the inferior aspect of the thyroid. Three are located in the right lobe measuring 2-4 mm in maximal dimension and *one is located in the left lobe measuring 4 mm*. There are too small to characterize, but also certainly benign. The thyroid gland is otherwise unremarkable. There is no evidence of discrete solid nodule or calcification. The thyroid gland is mildly enlarged with the right lobe measuring 5.8cm in length a 1.7cm AP by 1.8 cm transverse and the left lobe measuring 6.4 cm in length by 1.6 cm AP by 1.6cm transverse. The thyroid isthmus is also within normal limits measuring 4 mm. No significant lymphadenopathy is seen in the region.

So moving right along, I set up an appointment for an ENT and finally got an appointment in october after dealing with some insurance issues. He requested I have another ultrasound done and here are the results of that one.

10/25/13

Findings: The right thyroid lobe measures 5.6 x 1.9 x 1.6 cm. The left thyroid lobe measures 5.1 x 1.4 x 1.8 cm. The thyroid isthmus measures 6mm in thickness. There is mild parenchymal heterogeneity in both thyroid lobes. There is a 5x 3 mm cyst in the lower pole of the left lobe and two 2 to 3 mm cysts in the lower pole of the right lobe containing punctate foci inspissated colloid.* There is a hypo echoic solid appearing nodule in the lower pole of the left lobe measuring 1.1 cm x 8 mm x 6 mm* without evidence of micro calcification.

Impression: Mile enlargement and heterogeneity of the thyroid gland. 1.1cm solid nodule in the left lobe. Several additional tiny colloid nodules.

So my ENT was concerned with the lower left lobe nodule and sent me for a FNA (which was the worst experience of my life). The doctor who performed the FNA did not get a good specimen (which I was not told about... I just did not get any results and my ENT never got results so I went to the hospital to get them myself and some nurses talked to me privatley that the doctor did not get a good enough specimen.. and I would need to do it again.) The end result of that was that the doctor was unwilling to accept that he made a mistake and would not perform the biopsy again unless I paid a ton of money... So not happy (I am a broke newlywed who just graduated from college.. I do not have time for people being butt heads about a mistake).

My ENT said that he would like to do a thyroid scan to see if that would show anything. And of course nothing... My ENT actually apologized, and said that he does not see thyroids that are so difficult to test very often.

So he told me at this point that he would like to remove the left part of my thyroid to actually test it that way. He also said that I do have the option of waiting and seeing what happens, but that I needed to be prepared for surgery if the nodule keeps growing at the rate it has been.

So this is my dilemma... do I have the surgery and just get it done (even though it may not be cancer) or do I wait and see. I posted my ultrasound findings hoping that someone will see them and tell me if there is any characteristics that would hint to a problem that needs to be looked at. I have never had a surgery before, and I am very nervous about removing a part of my body if it really does not need to go anywhere. Not to mention my husband is worried it may be cancer so he is all ready for the surgery, but my mom is like me... she really does not want me to have surgery if I can wait and see....but I do not want to be dealing with whatifs everyday.

Please help and thank you for your time (I know I was really long winded)


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## joplin1975 (Jul 21, 2011)

Hi there and welcome.

I don't think immediate issue is surgery vs. waiting. I think the immediate issue is finding a new doctor. Because if my surgeon had said this to me:



hbradley said:


> My ENT said that he would like to do a thyroid scan to see if that would show anything. And of course nothing... My ENT actually apologized, and said that he does not see thyroids that are so difficult to test very often.


and then proposed surgery, I would run. The thyroid surgery itself is pretty easy for the patient...but it is a technical endeavor that requires lots of experience and lots of surgical competance. If he doesn't know how to deal with a thyroid that is difficult to test (I don't know what that really means??), then he shouldn't be doing surgery.

Do you have copies of your lab reports? If so, could you post the results with the reference ranges? Have you had antibodies tested? I think that would help us advise you.


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## hbradley (Feb 20, 2014)

I agree completely with everything you said. I will say though in his defense I think his apology was more to pacify me at the time, because I am so overwhelmed, angry, and frustrated that I have been referred out for all this testing and some of those tests are not necessarily the most pleasant, and nothing has came back with an answer at all (except my ultrasounds...which I did not need a doctor to tell me that one of my nodules has decided it would be fun to grow so much). I do however feel like I need to get a second opinion (and maybe a third and maybe a fourth  )

But I would love your input on my ultrasounds and my labs which I will be posting them all below... if there is another lab that you think would help just let me know (lol I have a WHOLE BIG binder full of labs that cover every area of my body).

But the ones that I have sitting in front of me right now would be:

5/29/12 T4 Free Thyroxine-------0.95------------Standard Range 0.80-1.80

11/14/11 T4 Free Thyroxine------0.98------------S.R. 0.80-1.80

5/29/12 TSH------------------------2.41------------S.R. 0.40-4.50

11/14/11 TSH------------------------2.37------------S.R. 0.40-4.50

10/12/11 TSH Reflex--------------0.96------------S.R. 0.40-4.50

If you notice this are a little older, but I have had 3 more labs done since last summer by my last general doctor that came back normal like middle of the road normal, not closer to high or closer to low (i just do not have the numbers or lab report here at my house) and those were all TSH labs. And I do not know what test would be the antibodies to know if I have gotten tested, can you tell me what a common one would be called so I can go look to see if I have any?


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## joplin1975 (Jul 21, 2011)

It's hard to say about the ultrasound. First thing to note is that ultrasounds are used for rough estimates. Example: I was told before surgery that my largest nodule was 2.5cms...post-op path revealed that it was 3.2cms. So, they were "off" my 7mms. It happens. Your nodule, assuming the measurements are correct grew 7mms in a year and a half. Again, assuming both measurements are totally accurate, that is a decent sized difference, BUT we're making a big assumption on the outset. That said, it is solid, which raises some red flags and your doctor was good to get the biopsy. THe second thing to note about the ultrasound is that it is imaging only. It tells you if there are abnormal structures and...that's it, really. So yes, the growth (assuming there was growth) and it being solid means you have reason to further investigate...but that's about it.

For the antibodies, you'll want to look for thyroid peroxidase antibody (or TPO), thyroglobulin or thyrogllobulin AB (Tg or TgAB) and thyroid stimulating immunoglobulin (TSI).


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## joplin1975 (Jul 21, 2011)

And, yes, your free t4 is low. Mid-range would be about 1.3...you are well below that and so you look hypo to me.


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## Andros (Aug 26, 2009)

Wow!!! Welcome to the board!

We never get too much TMI here. I do think you have a concern as evidenced by fairly rapid enlargement of your goiter and the solid nodule.

So, I wonder if they did in fact get a sample at the FNA and if it was labeled "indeterminate?" Would you know?

A second opinion from an ENT definitely would not hurt.

No matter what, because the goiter is impinging upon your trachea, surgery might be a viable option anyway.


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## hbradley (Feb 20, 2014)

Thank you both for responding. Joplin1975 I will make sure I bring up my T4 level when I go in to the doctor this next week. I have an appointment with my husband's general doctor on Monday, so I can make sure to bring everything in and have her look at it all and send me out for more labs (like the antibodies labs).

And Andros, thank you for asking about if it was indeterminate. I actually specifically asked if it was that when the nurses were talking to me, because I understand that that could happen. However, they said it really was just a bad sample...which in my mind I think is so strange! I know I am not a doctor, but how do you miss a nodule when it is guided by an ultrasound. And the fact that he was not willing to redo the FNA is beyond me. As a patient, I am paying for an answer when I get labs or procedures done. Just like when we go shopping we pay for a product. If the product is broken or faulty then we can exchange it, and or get a refund. In this case of the FNA... the doctor missed the nodule, and that stinks...Ok rant over . So that is why the ENT wants to do surgery, because he feels that it is worth having a solid answer on what this nodule is.

When I go to the doctor on Monday: is 4 months too soon to ask for another ultrasound? I feel like if I saw more growth then I would be more comfortable knowing that they just need to go in and take it out, and see what all the fuss was about.

Another question: Are all or most of solid nodules malignant? I know you both have commented on it being solid, and I am just curious if that is generally a red flag.

Thank you both for helping me, I really appreciate yall letting me pick your brains.


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## webster2 (May 19, 2011)

Hi,

I really think you should find an ENT that sees a lot of thyroid patients. It is hard to believe that so many people have thyroid issues but finding a doctor that is capable in treating them proves a little more difficult.


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## joplin1975 (Jul 21, 2011)

hbradley said:


> Another question: Are all or most of solid nodules malignant? I know you both have commented on it being solid, and I am just curious if that is generally a red flag.
> 
> Thank you both for helping me, I really appreciate yall letting me pick your brains.


Solid increases the chance of it being malignant, yes. But not all solid nodules are malignant. Nor are all cystic nodules benign. All my nodules were malignant -- had three solid nodules, one complex (partly solid/partly cystic) and two cystic nodules.

In short, there are no hard and fast rules with thyroids, but there are some general patterns that can help steer the direction of treatment. Clear as mud, right??


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