THYROID

This is my first time using this forum. I had my surgery for fap about 13 years ago and recently had a tightness in the throat and difficulty swallowing. My doctor says that I don’t have any swollen nodes. I just curious to know if any one has had similar problems or if this is just in my head. 

It's probably not in your head.  Have you ever been scoped down your throat? I've had it done twice and each time my GI stretched my esophagus while down there. It's easier than a colonoscopy but still not fun because I always remain conscious.  After I swallowed much better.

Hi Te Marie, I have gastroscope to monitor the gastric gland polyps and the doctor hasn’t seen anything in the esophagus 

My 13 year old daughter , who does not have digestive issue at the moment and hopefully never will, was diagnosed hyperthyroid last year and also Graves disease. She has been on a low dose of antithyroid meds called methimazole daily. Her thyroid levels have been in range for over a year and a half but her Graves antibodies (TSI) are still sky high and not sure why?

My mother and sister both have thyroid issues (I think hypothyroid), but I never did until I ended up with stage 3 thyroid cancer in 2015. I ended up with surgery to remove the thyroid (thyroidectomy to go along with my colectomy), and 2 lymph nodes into which the cancer metastasized. I then got 157 millicuries of radioactive iodine to kill the remaining cancer cells. I take 175 mg synthroid daily and it’s like I don’t miss the thyroid at all. My TSH and tumor markers are checked by blood tests every 3 months, all my labs have been good.

The thyroidectomy was a breeze as compared to my colectomy. My scar is very small and barely visible now.

My cancer was detected on an annual physical and my PCP’s manual feeling of my throat in which he detected swelling which I couldn’t see with my bare eyes nor feel. For this reason I recommend annual exams and your PCP should always inspect those throat glands. If the lymph nodes are swollen they will know even if you don’t. The PCP sent me to an ENT doctor who felt my thyroid and immediately felt a “firm nodule” which turned out to be cancer. They did an ultrasound on it and a needle biopsy with aspiration in which tissue is sucked out of the thyroid with a vacuum cleaner type instrument.

BTW prior to surgery my ENT surgeon/olotynarologist did put a NG tube down my nose into my throat to inspect my vocal chords and throat. It brought back memories of the post colectomy Ileus and the dreaded abdominal NG tube, but was not as bad, because it’s a thinner tube and has a camera and just goes down nostril and throat and not into stomach. Not a great experience, but tolerable.

Sophia,

Dah I should have known that! So I am wondering if they did test your thyroid function in a blood test? I don't recall having any problems with my throat, like swallowing, when Hypothyroidism was caught in a routine blood test decades ago.

(I did have a lot of problems with it after my j-pouch surgeries. When changing my dose all the time because of testing results wasn't working they sent me to an endocrinologist.) 

Hi everyone and thank you for your replies. I just got my results back from the ultrasound and it looks like there is a dark mass on my right thyroid node and a small .4 cm module within the right isthmus. I’m beginning to wish I didn’t get my copy of the results cause all I have been doing is googling. 

Yea, it's like good news that they found out what's wrong but you have a problem 😣 Please let us know what's going on.

Sophia,

My initial ultrasound had a very similar finding. I believe the nodule was .9 cm. I assume they told you the next step is to do a needle aspiration to biopsy the mass? Many nodules are benign and they won’t know until they biopsy it and the pathology comes back positive or negative. Mine was positive for papillary thyroid cancer. You may just have a benign nodule. Let us know what happens. If it’s not benign, thyroid cancer is very very treatable and the treatment isn’t that bad. I have been through it and the worst part is the low iodine diet for like 3 weeks which really sucks.

Hi, everyone.  During an annual physical, it was discovered that I have a nodule on my thyroid. After a needle biopsy of the thyroid, plus bloodwork, it was negative for Graves' disease, but I was diagnosed with hyper-thyroid, and started on a very low dose of Methimazole (brand name: Tapazole).

Is there any concern that this thyroid medication, or any thyroid medication, can cause liver damage?  Do you have your blood tested every few month, while on thyroid meds?  Does your med cause weight loss or weight gain?  Skin rash?  Colourful pee?  

Like many drugs, Tapazole can sometimes damage the liver. A very low dose is much less likely to be problematic.

Thank you, Scott. I was hesitant to be put on thyroid medication because I don't have any symptoms of a hyper thyroid (hyper personality, agitation, weight loss, etc.), but my bloodwork showed high numbers, and my endocrinologist is mindful of my history of ulcerative colitis, so here I am. I've read that Methimazole can be used for 18 months and possibly remission can be achieved. At least he didn't find cancer; I've had enough of that!  Fingers crossed for 18 months.

Winterberry, I took methimazole for a year for hyperthyroid with no adverse effect. It was back in 1996. If I  remember correctly I had monthly blood testing. I achieved remission and have never had a problem since. 

Aimee

Thank you, Aimee. I feel better about it, and reassured by your success!  I am on the lowest dose of 1/2 tablet every two days to start. In three months we will do blood work and see about adjusting. I will ask about monthly testing too. Do you get thyroid scans now?

No I have a blood test once a year now. I wish I could remember the dosage I took, but I really don't. I think as long as they monitor you, everything will go well.

Aimee

Methimazole has been tested to be safe long term usage. over 10+ YEARS ACTUALLY. my daughter who was hyper and has Graves at 13 has been on a low dose of 1.25mg daily. Studies are showing the longer you are on it the better chances for you to go into remission of Graves disease, which is autoimmune

Hi everyone it’s been a while since I have given anyone an update of my situation. Since my last post I had done a lot of waiting and worrying about everything. In October I finally got to see the Ent specialist at first he wasn’t overly concerned about the ultrasound results because there was no calcification or suspicious activity. But because of the fap and the greater risk of cancer he had spoken with his colleague within the same office. They felt in the best interest of my care that they go ahead with doing a biopsy of the nodule in the thyroid. 

So then in November I had the first biopsy which came back as inconclusive and had to wait another 3 weeks to have a second biopsy done. I got my results back last night and they came back as suspicious follicular thyroid cancer.  I am scheduled to have surgery in January or February to have half of the thyroid removed. Once the tests are completed and find that it is follicular cancer they will remove the other side of the thyroid 3 months after the first surgery is completed. Not the news that I wanted to hear but at least I got answers and that is the most important thing that I could ask for a Christmas present. 

Sophia,

I hope your surgery goes well. I'm glad they decided to do the biopsy. I hope you don't loose your entire thyroid but I think  it's going to be easier than loosing your colon!  You've got this!

Sophia,

My diagnosis was papillary thyroid cancer and my entire thyroid was removed in July 2015. I have done well ever since and my most recent quarterly blood test showed a good TSH level and my tumor marker was 0. Did they mention if you will be given radioactive iodine after surgery? Thyroid cancers are typically treated with a combination of surgery and radioactive iodine if there is any sign of metastasis, which they will not know until surgery. My ENT surgeon told me the metastasis would be into the lymph nodes adjacent to the thyroid and my tumor had just started to metastasize but they called it stage 3. So they removed 2 lymph nodes and I got 157 millicuries of radioactive iodine. If it’s cancer and the cancer is entirely self contained in the thyroid you probably will just need surgery, but they will not know until they do the surgery. My surgeon told me metastasis can usually be determined visually by the surgeon because the lymph nodes will look bluish if they have cancer in them. You will need to go on synthroid after the thyroid is removed partially or fully and if you have cancer you will have quarterly blood tests on TSH and tumor markers. They only had to adjust my synthroid once when TSH ran too low so they reduced my dosage by 7.5% by making me take a half a pill one day a week. My tumor marker (it’s a protein thyroid cancer cells generate) has been 0 since 2015.

One thing I am not clear on is why the needle biopsy wasn’t conclusive. Mine was. They saw/see the nodule on the ultrasound and poked me a few times (I presume in the nodule) and in a man it’s near the Adam’s Apple and it hurts!!! They knew it was PTC after the biopsy and the only issue for surgery was if it had metastasized. I gave the surgeon consent to remove it entirely if he found a metastasis, and he did.

Good luck with the surgery.