Mom of 3 with a Multi-Nodular Goiter with Non-Conclusive FNA Results

Gina, Female, Mom of 3
Age: 50
Reason for Thyroidectomy: Multi-Nodular Goiter with Non-Conclusive FNA Results & “Suspicious” Genetic Test Results
2 Weeks Post-Surgery
Orlando, Florida

I am SO thankful for this site after all of the horror stories you read about having a Thyroidectomy and the after affects. My husband reminded me that most posters on the internet are the ones who have had a bad experience and it doesn’t represent all of the good, so, thank you for this site! I’m only 2 weeks out from my surgery, but am feeling good and healing well and hoping to put someone’s mind at ease with my story. 🙂

About three years ago I began feeling a lump and some pain on the left side of my throat. When I would bring it up to my general physician she told me that she didn’t feel anything and it only hurt because I kept touching it. She tested my TSH levels a couple of times a year and they always came back “within normal limits” so nothing was done. I began to have trouble swallowing, was choking when drinking water, and my voice was going hoarse for no reason, which affected my singing voice. I was no longer hot all the time, I’m a bit overweight, and my hair was beginning to fall out. After 3 years of complaining my GP finally said, “Fine, lets get an ultrasound of your thyroid and figure this out once and for all.” When I returned to her office for my results, the look on her face was priceless and she said, “Oh, we need to get you to an Endocrinologist immediately.” I wanted to smack her!! Her office manager called my home that evening to “make sure that I had some referrals to an Endocrinologist and to let them know if I needed any help getting an appointment.” In other words, “we screwed up and we want to cover our behinds”! Needless to say, I made an appointment that week and got right in with the greatest Endocrinologist who immediately ordered another ultrasound and a Fine Needle Biopsy of my two biggest nodules of 1.5cm. The results of my FNA came back inconclusive so they had to repeat it after waiting 6 weeks for the swelling to go down. I spent the whole month of December and Christmas wondering if I had thyroid cancer. It was miserable. This time they encouraged me to also have the genetic testing to determine once and for all if thyroid cancer was a possibility. My biopsy results came back a second time as inconclusive but the genetic testing came back as “suspicious” with a >50% chance that I had the cancer. Because of these results, and the fact that I was riddled with nodules, my doctor recommended a total thyroidectomy. I met with a surgeon and he scheduled the surgery for the next week. Since I am a singer and was concerned about this surgery hurting my voice, the doctor scoped my throat to take a reading of my vocal folds to be able to determine if there was any permanent damage after the surgery.

One thing I do not recommend at this point is to go on Google and look up ANYTHING regarding your surgery!!! I freaked myself completely out and was second guessing the surgery! My husband talked me down and with much praying and support from family and friends I went through with the surgery.

When I awoke from my 3 hour surgery I had an ice pack on my neck and my throat hurt like I had strep throat! They gave me ice chips to suck on and some good pain meds during my overnight stay in the hospital. During the early morning hours I decided to forego the strong pain meds that the doctor had me on because I didn’t like feeling “loopy” and wanted to be able to stay awake so I only took Tylenol. My surgeon opts to glue your neck wound shut instead of stitches and all of the nurses were bragging that he is an artist with this stuff. I was given 2 TUMS to take and sent home because my calcium levels were 9.1, which is apparently good. All I could do at home was lay on the couch and sleep while my family watched TV and talked around me. Eating anything but Jell-O was out of the question because of my throat. I tend to get dehydrated and constipated after surgery so I made sure to drink as much water as I could swallow, which wasn’t a whole lot because of my sore throat.
The next day I felt so much better and began to talk and do some very light head turning exercises a couple of times a day. On day 3 I began to feel a tingling in my arms and hands and around my mouth and was having trouble catching my breath. My husband was diagnosed with the Flu that morning so my teenage daughter had to take me to the E.R. where by the time we arrived, I was hyperventilating and thought I was having a stroke. My hands were all cramped up and I couldn’t move my mouth. They did an EKG and said I was not having a stroke, I was having a panic attack because of the cramping which was caused by low Calcium and Potassium levels. After being given a dose of Ativan they gave me an IV of Calcium and Potassium and I slowly began to feel like myself again. Not sure why my surgeon didn’t put me on Calcium the first day, even though the pathology showed that he had sliced three of my four Parathyroid Glands during the surgery. If I had the surgery again, I would take the calcium supplements the first day until I had my levels checked again so I wouldn’t have to go through thinking I was having a Stroke and not going to make it!

My post-op visit was a few days later and I was healing well and my wound was looking good. The doctor said the glue would eventually come off as the wound sealed up. He released me back to light work and driving but told me to wait until my month follow-up to start singing again in case there was damage done to my vocal folds. He will scope my throat again at the month visit to determine that. He told me to continue to take Calicitrate +D for a month ad that my depletion was most likely temporary.

My post-op visit with my Endocrinologist was the next day where he confirmed that the pathology came back that there was a Micro Carcinoma on my right lobe, which we had never even looked at or seen, so, removing my whole thyroid was the right decision. Thank God! I would hate to have had to undergo the surgery again to get the right side out if we had done the partial removal. Phew! My cancer was Papillary Thyroid Carcinoma, Stage I, and did not have any spreading into my lymph nodes or surrounding tissue, so no radioactive iodine treatment was necessary. I will continue to have scans and blood tests every six months until they determine there is no longer any reason to keep doing them. I was started on Synthroid treatment, every morning for the rest of my life, and told it will take up to a year to feel “normal” and get my medication levels correct. I have two daughters who now need to be examined and have genetic testing done to determine if they are susceptible for this same cancer because it is now in their family medical history. 🙁

It has been two weeks since my surgery and I have returned to half days at work. Besides being exhausted when I get home, I am feeling much better. I think that I jumped back into life too quickly and need to remember that I’m recovering from major surgery. I have been having some headaches which I think I have traced to the Calcitrate, but if I take an Excedrin Migraine with the pill it gets ahead of the pain, and knowing this is temporary, I can live with that. I hope this helps you to know that not all stories are horror stories. I know I have a long way to go, but overall, it has been a good experience and I’m looking forward to being healthy and feeling better and getting on with the second half of my life!

Site note from site author: Thank you, Gina, SO much for sharing you story! PLEASE check back with us at 6 months and then 12 months. Everyone feels pretty OK at 2 weeks.. then it’ll start to hit yah. Just take it easy, and keep us updated. xoxoxoxo Sparky

5 Comments

Filed under Goiter

5 Responses to Mom of 3 with a Multi-Nodular Goiter with Non-Conclusive FNA Results

  1. Gina

    Thank you so much for posting, Sparky, and I will check back in as time goes on. God Bless 🙂

  2. Maree

    Thank you so much for sharing , my Dr was the same ignoring my symptoms and kept telling me to lose weight and exercise more!!! Makes me wonder why most Dr’s ignore the thyroid, looking back I had so many symptoms that she could have picked up on !! I found a large lump on my neck after two years of complaining…and went to another Dr.
    Ultrasounds done and 1st FNA they didn’t take enough for a diagnosis so like you had to wait 6-8 weeks for another then I found out today that I need a total Thyroidectomy because of multiple modular goitre both sides. One side 3.4cm non diagnostic and the other side 4.5 cm benign and several smaller nodules. It was very reassuring reading your testimoninal, thanks so much for sharing . Your story gives me hope at a scary time. Thank you Wishing you all the best for a continuing recovery

  3. Mommo

    I had suffered swallowing issues off and on, nothing really unusual, except at night I started choking in my sleep: sat straight up held my mouth wide open but air wouldn’t come , my husband tried to give me water and support my back, finally a breath came in, we thought it was a bad dream I couldn’t even remember
    Went for Dr exam, they Knew thyroid, decided take a biopsy with possible thyroidectomy. They took half out in 2001, labs said no cancer. Again I had same breathing issues, in 2013 less than 3 months after having my final child, they removed a 7.5″ (18.5cm) goiter that basically stretched from my ear to my collar bone, completely. They say there are thousands of non cancerous cysts, they didn’t remove them mostly, just several large ones, I guess I won’t be able to hold/ turn my head or arms if they remove everything.
    So, I used to stay very active, but nearing 50, joints hurt, energy going, gaining all “baby weight” back … I learned I will never eat breakfast again as it prevents meds to work, so I starve/ binge eat after meds have time to be absorbed (4 hours after pill I can eat iron) I take 400 mg elemental calcium (2 times) every night, as it interferes with iron . Why can’t I try synthroid in PM and calcium in AM? Also, has blocked GI tract, issues there now. Again even one slice of bread is too much iron for breakfast…
    The only two things I have found to eat (1 hour after meds) is “Reese’s brand Coleslaw or Little Debbie’s Dunkin stick. Breakfast of champions…
    We need so much research on how to just feed ourselves after thyroidectomies, it’s really very hard. My Endo is also nutritionist expert, still hasn’t mentioned even a sample diet plan, just tells me keep trying I have good ideas he hasn’t thought of. Anyone have dietary tips please reply, please make public. I’ve always been athletic, dreamt of being Olympian, now I feel like a slob, a guinea pig. If I’d known I didn’t have Cancer, and I knew this is how I will raise my child, I’d would have rather bypassed thyroidectomy for a teach if possible, (I don’t swim, but I’d rather be jogging or other body building exercise, playing frisbee or basketball, I’m just too tired, out of shape. My foot bones have broken now just carrying too much body weight. I got a Gazelle machine but it just doesn’t do enough despite I kick the bars as fast as I can move my legs. Sorry, feeling a bit sad today.
    I was looking for positives from other suffering this much vs just nice surgical experiences. Like I said, please share if you have any dietary breakfast foods that work or recommended weight control exercises, energy building excersise/ tips/routines.
    I did feel pretty good first few years mowing 6 1/2 acres with a 22” push mower about once a week, but I never had any time left besides shower and clean house afterwards then sleep .
    But I had energy and a deep tan.

  4. Mommo

    It seems to be an UpHill battle.
    At first it’s ok because your body stored stuff that one day runs out and can’t make without Thyroid Gland.
    But study foods, get a healthy diet PLAN immediately, so if it later fails, you might learn before loosing all those things stored before the thyroidectomy.
    Also, despite not gathering healthy stuff from sun ever again either, I really do still feel better in full sunlight, moving as best I can in full outdoors, that fresh air is still enenergizing a bit I guess.
    If you don’t use it you’ll loose it is my current plan. Use everything I ha e got, while I can, might help strengthen me to go stronger longer one day.

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