Should I get a 2nd opinion? US Results

[mw3602]

I went to my primary doctor because I was having issues with feeling a lot of pressure in my throat and I can feel something when I am swallowing, plus my throat is tender to touch and I've basically ruined all of my shirt collars from tugging on them. I have also been diagnosed with Celiac in November and most of these symptoms started at the same time in September. I had an US of my thyroid done on a Monday morning, that evening my doctor had me scheduled to see an Endocrine Surgeon but wouldn't tell me anything more. I went to see the surgeon and he said he thinks I have Hashimoto's due to the size and appearance of my thyroid but there's nothing I should or can do about it. I have several nodules, but he says he doesn't do the biopsy until they are at least 2cm. He did another US while in the office and found some more nodules that measured up to 1.3 cm and said they looked solid, but that we will just wait and see next year. I asked him about hypo symptoms, and he said that they are not related (utter exhaustion, brain fog, joint pain, extreme cold intolerance and sudden weight gain without changing diet or exercise). I could sum up the visit as: I might have Hashimoto's, he doesn't need to remove my thyroid and it won't fix any of my symptoms, there's nothing I can do about it and he doesn't think I'm hypo, thinks all throat symptoms are due to GERD and referred me to an ENT. Now I just feel like I'm crazy. My US results are below - no one has run any blood tests on me - at all.

Right Lobe: Diffuse heterogeneity of echogenicity. Inferior right lobe solid nodule, TI rads 4 measuring 9x10mm. Less well-defined more superior medial right lobe hypoechoic nodule, 8x9mm also TI rads 4
Left Lobe: Small hypoechoic solid nodule in the superior medial left lobe approximately 4x6x8mm, TI rads 4. 5x7mm mid left lobe hypoechoic nodule
Isthmus: Small, 6x8mm hypoechoic nodule along the inferior left isthmus

Any thoughts are appreciated, I'm willing to accept the throat issue as globus sensation but will follow up with the ENT. I feel like we should've started out with some other testing before being sent straight to the surgeon as he acted like he didn't know why I was there.

[Sarahjogs]

Hi mw3602,

I'm sorry you are going through this.  I had something similar happen to me in 2018, except my nodules were slightly bigger than yours, and I got the fine needle biopsy.  I had a ton of hypothyroidism symptoms (which were undiagnosed up until the point that I realized that my thyroid was full of nodules and that many of the weird symptoms I had been experiencing for years were probably thyroid related).

I hated having anything touch my neck ever since I was an adult, so for 20 years prior to realizing I had a thyroid problem, I had neck sensitivity issues.  I had my first ultrasound and was immediately referred to an ENT, who told me that it is completely normal for a woman my age (37 at that time) to have thyroid nodules (is it normal to have a thyroid full of 1 cm nodules? No, but the resident who was trying to convince me my hypothyroidism was all in my head did not tell me that).  I was told I probably didn't have Hashimoto's, so I didn't go get the blood test I had begged the ENT to order for me until I had my fine needle biopsy and I was already scheduled for a hemithyroidectomy because one of my nodules was suspicious for thyroid cancer.

What can you do right now?  Do what gimel recommended, and get tested for thyroid hormones and Hashimoto's.  If you have Hashi's and you are experiencing hypothyroidism symptoms, taking supplemental thyroid hormone might help alleviate some of those symptoms.   If your nodule that is 1.3 cm has any features that raise the risk that it could be thyroid cancer (hypoechoic, vascularization, part cystic, part solid, calcifications), you could try to get a second opinion and see if they recommend a biopsy, although most thyroid cancers are very slow growing, and the risk increases as they get bigger, so many hospitals/doctors offices use 2cm as the minimum size before biopsy.    I had some nodules that were over 2cm, but the one that was hypoechoic and which caused the need for a hemithyroidectomy was 1.3 cm and hypoechoic (and suspicious for a neoplasm by biopsy).  

When I had the rest of my thyroid removed, my throat immediately felt much better - I had no idea how much inflammation had been going on.  My Hashimoto's had probably been going on for a very long time, and in addition to a very inflamed thyroid, my ENT pulled out 3 lymph nodes (first surgery), another 3 lymph nodes stuck to the side of my thyroid (surgery 2), and a giant clump of 8 lymph nodes (2nd surgery)- all the lymph nodes were about 1 cm in diameter, and were full of destroyed thyroid tissue (and thankfully no thyroid cancer) - my immune system was putting up a very aggressive attack against my thyroid, and clearly winning.

It is possible your throat issue is completely independent of Hashimoto's, but that would be one heck of a coincidence (if you have Hashimoto's).

I know if the thyroid/goiter is too big and causing pain or blocking food intake or airflow, they might remove the thyroid even if it is not cancer.  In my opinion, as a person living with no thyroid, trying to avoid thyroid surgery and trying other options first that would allow you to keep your thyroid is what I would do, unless the pain/sensation is unbearable.  The three years after my thyroid surgeries were the three hardest years of my life.  (This is not normal for most people who have thyroidectomies, but it is something I recommend considering if given that choice.)  It took me much longer than expected to get to a stable dose of thyroid hormone, complicated by the fact that I was also anemic at the time (undiagnosed - I believe my doctors were trying to help me get better, they were just not very good at times).  I'm finally at a much better place, but with supplemental thyroid hormone as my only thyroid hormone I get, I'm constantly trying to optimize my energy levels.  I've finally returned to full time work in a career that I love, but I get home from work and I'm much more tired than I used to be, even when I had some hypothyroidism symptoms but still had a (semi functional) thyroid.

So - at this point it sounds like your nodules might be too small for a biopsy, and they will keep doing ultrasounds at intervals until the nodules get bigger.  (And keeping your thyroid is not a bad thing, in my opinion.  If there is a legitimate reason to have it removed - do it, but otherwise I'd hang on to it for as long as possible.)   If you do have hypothyroidism, supplemental thyroid hormone might help with some of your symptoms.  If your doctors won't listen to you, find new doctors.  It has taken me close to 4 years to start to feel like myself again.  I wish certain things (like anemia) had been diagnosed much earlier, but I'm glad I didn't give up on myself.  Keep advocating for yourself.  

And, I don't think the symptoms are all in your head, and they are so similar to mine, and my doctors convinced me I didn't have Hashimoto's, that I didn't have hypothyroidism.  The months leading up to thyroid surgery I had extreme anxiety and was blaming myself for destroying my thyroid -  which of course I didn't purposefully tell my immune system to attack my thyroid.  I don't think doctors realize the harm they can cause when they tell patients they are not experiencing symptoms they clearly know they are experiencing.

Good luck!

[mw3602]

Thank you for sharing! I was definitely feeling crazy after the visit. I had only gone to my family doctor because I decided to purchase insurance this year as I know I need surgery on my wrist, so I thought, why not get everything checked out and I needed the referral for the ortho. I was kind of surprised when she ordered the thyroid ultrasound as I assumed she would at least run some tests for a baseline. And the pressure and lump feeling started at the time I was apparently going through a Celiac attack, which was also shocking news as I have been super low carb for 20 years and had recently allowed some new Keto bread (main ingredient is wheat gluten), but it totally destroyed my intestines and I've just started to recover from that.

I was definitely frustrated with the surgeon because he made me feel like I had made the appointment so I could talk him into taking out my thyroid, when it was my doctor that actually scheduled the appointment after she saw the US. I certainly don't want the thyroid removed if unnecessary, but to tell me I have Hashimoto's (based on the size of the gland and the texture) and to tell me a) there's nothing I can do about it and b) its not making me hypo, just made the whole experience uncomfortable. I wish my doc had started me with an endocrinologist first, instead of straight to a surgeon, but she must have felt like there was an issue after reading the US. I have PTSD when it comes to any mention of cancer because I went through 3 years of hell with Cervical cancer because no one wanted to do a hysterectomy because I was only 30, if I hadn't pushed so hard, I'd likely be dead as I had the most aggressive strain and every procedure they did just prolonged the stress and fear. So that's my frame of mind when dealing with this Thyroid Doc, like if it might be cancer, yeah, I'm gonna want it out.

While I thought he was crazy for suggesting I have GERD, because I don't have heartburn and I know what it feels like, I did do a deep dive and found out about silent GERD, which can cause the same issues I'm experiencing with my throat and voice. It seems relatively easy to manage and goes hand in hand with the Celiac destroying my gut. I did send my doctor's office a message requesting lab orders for the full thyroid panel and TPO as well as A1C (entire family/generations of diabetes and I was gestational) so we can establish a baseline. I also found out that you shouldn't take Biotin for several days prior to any thyroid tests as it skews the results, which means I've never had an accurate test as I've been taking mega doses of Biotin since I was 21!

I tend to ramble, so if you made it this far, thanks for reading!

[Sarahjogs]

No worries, I tend to ramble too.  I think what made me the most anxious about my whole thyroid diagnosis was being constantly told I don't have hypothyroidism when my thyroid was severely screwed up, and I had a ton of symptoms.  That was not helpful.  Thyroid cancer is usually very slow growing and often has an excellent prognosis (I was 37 when I was diagnosed, and the survival rate is extremely high for someone my age), but I can understand how concerned you would be, and I'm so sorry for what you have gone through in the past.

I didn't actually realize that I might have PTSD from my thyroid cancer journey until this week.  I've finally returned to work, and what I was doing prior to taking 7 years off of work once the (still undiagnosed at the time) hypothyroidism symptoms started was working in a cancer research lab.  I made the decision to return to science and cancer research because I want to do something meaningful with my life, and I also spent a ton of years getting an advanced degree and would like to use it doing something productive.  I've been back to work for 2.5 months now, and we work with cancer cell lines, I'm constantly reading papers about cancer or talking to colleagues about cancer (even my own), so far with zero problems stirring up emotions about my own cancer.  This Wednesday, we were in journal club where we all read the same research paper and then discuss the research.  My boss wanted us to think about why a certain experiment was chosen, and he said something like "think about the biopsy and the pipeline for cancer diagnosis", and I had an intense flashback to my thyroid biopsy day, remembering it in more detail than I have at any point in the four years since.  I felt weird at the time, like "this is something weird going on with my brain right now", but then I got in the car to drive home from work a couple hours later, and I was just flooded with emotions I had felt that day I had my biopsy (where I learned my nodule was suspicious for cancer and needed to be sent out for genetic testing).   I started sobbing in the car, even though I've thought about this day in the past, with no strong emotions tied to this particular day.  This is the first time a memory has "triggered" such a strong emotional response like that for me.  I was crying off and on all night, and the next day, I was completely fine when I got back to work and could even share with one of my coworkers what had happened.  She suggested that maybe this was PTSD.  I'm so lucky that the people who I work with know my history and are supportive and looking out for me, but now I'm trying to figure out what else might be trigger this emotional response and how best to handle it if and when it happens again.

My main point is - I am very sympathetic towards what you went through with your cervical cancer, and I am so sorry you had to experience that.  Hopefully your thyroid is fine, but even if it is thyroid cancer, thyroid cancer is often very survivable and often has an excellent prognosis.  I don't think my experience is in anyway comparable to your cervical cancer.  Cancer sucks though, and PTSD from cancer is completely understandable.

A lot of my anxiety that I experienced at the time was not knowing what was going to happen next (re: needing my thyroid removed), and being told constantly that what I was feeling and experiencing wasn't what I was actually feeling and experiencing.  I was very hypo after my thyroid removal, and I was constantly told my thyroid hormone levels were fine based on TSH, and that added to how long it took for me to get better and I'm sure has more than a little to do with my strong emotional reaction on Wednesday.   So, while I am doing much, much better now, I think there is still a lot I need to process and I will probably be processing what happened to me during this time period for the rest of my life.

And now I'm sorry for rambling, I just wanted to thank you for sharing your history and let you know that I hope things go well for you.

[gimel]

I cannot speak to your us results.  

The first thing I would do, and right away, is to get tested for TSH, Free T4, Free T3.  Along with those I suggest testing for the antibodies of Hashimoto's Thyroiditis:  Tpo ab and Tg ab.    If the doctor resists, insist on those, since you were told it might be Hashimoto's.   If you have Hashi's there is definitely something that can be done to alleviate your symptoms.  

[mw3602]

I've left a message with my doctor requesting lab work, we'll see how this goes. To be fair, she is my new doctor and I've only seen her once, so I need to give her a chance :) Thanks!