I had been struggling with the symptoms for approximately the last three years. I was always cold, experienced unexplained weight gain, severe headaches, digestion problems, losing hair, dry skin, brittle nails, and consistent trouble swallowing. And one of the worst symptoms was the feeling like something was stuck in my throat 24 hours a day. I had to work at even swallowing my own saliva!
About a year and a half ago, I went to my doctor and after an ultrasound they discovered multiple nodules on my thyroid. A FNA biopsy was done and no cancer was found so I was told to follow up in about six months. In the meantime I was told my symptoms could not possibly be contributed to my thyroid.
I had every medical test I could think of to include an Endoscopy, ultrasound, swallow test, blood tests, MRI, and I was even scheduled for a CT scan, but by that point I had given up all hope and didn’t go. I was very discouraged.
My blood tests always came back within the “normal range” so It seemed synthetic thyroid hormones would do me no good.
I finally insisted they test me for antibodies and low and behold I was diagnosed with Hashimoto’s. However, even with this diagnosis my blood test came back within the “normal range”, so no medication was prescribed. I was again advised to follow up in a couple of months and I just had to deal with all the symptoms.
For a little while I just gave up and dealt with that until I couldn’t take it anymore and went back to a doctor at a clinic sponsored by my employer. I finally found someone to listen to me and she sent me to a general surgeon. He assured me I wasn’t going crazy and the swallowing issues were in fact likely due to my thyroid nodules. New nodules were also found an a follow-up ultrasound so it was decided I would have a total thyroidectomy on September 28, 2015.
Fast forward to today. I am approximately three weeks out from my surgery and I have zero regrets! There was a fair amount of pain after surgery but nothing compared to what I’ve experienced the last three years. The pain medication took care of it. I was also given levothyroxine immediately after surgery and started it the next day. The surgeon said my thyroid was quite large and had started wrapping around my esophagus and that was why I was having the swallowing issues. He told me with my diseased thyroid out of my body I would begin to feel much better and guess what….
I feel great! feel like I have finally got my life back. I’m able to stay warm, I have energy again, the headaches have decreased drastically, and most importantly I CAN SWALLOW! I am experiencing tightness and swelling in my neck where the incision is, but I have faith that that will soon disappear with time. The scar is minimal and is already starting to fade. I am using silicone strips and they seem to be doing the trick.
I,too, only found horror stories about the surgery and recovery, but I’m happy to share that mine is just the opposite and I have faith I will only continue to improve. I know my medication may need to be adjusted, but right now it seems to be working and I’m very happy with the results.
My only advice is to advocate advocate advocate for yourself. You know your own body and when something feels wrong trust your instincts. I wish I would have pushed to the doctors years ago and not suffered the last couple years but I’m not going to look back I’m just going to look forward and be glad I have been getting my life back.
Thanks for allowing me to share my story and I wish you all the best!
18 Responses to Jennifer evicted her multi-nodular, Hashimoto’s attacked thyroid
glad you are feeling better, I too had my thyroid gland removed about 8 years ago, its been a nightmare ever since. constant lack of energy, headaches, weight gain, hair falling out etc. Doc just keeps me on levox pills one a day symptoms are horrible and I too have hashimotos. Hashimotos is an autoimmune disorder we can never escape it. It sucks ! All we can do is stay clear of gluten and find out what other things flare up your auto immune disorder. good luck
I’m 23 years old from Scotland and work as a speech and language therapist. I’ve been having problems with my thyroid for several years now. I have hashmito’s, hypothyroidism and a goitre which I think is quite large and noticible since I’m slim. The goitre has been growing and is now visible to look at my neck. I Was constantly exhausted whilst at uni and tightness feeling around my neck and no energy and noticed my voice quality sounded different at types of flare up. . I had ultrasound scans done and the most recent showed an increase size in nodules. I had to get a Fine needle aspiration to test for cancer or anything suspicious but thankfully came back negative. However because of my growing thyroid, the feeling of something hand wrapped around my throat/ neck all the time I have been given the option to have my thyroid removed. The surgeon explained the risk factors to me including permanent or temporary hoarseness of voice. I work as a speech and language therapist therefore my voice is crucial for my work. I can’t decide whether to go ahead with the surgery in case my voice is affected if the recurrent laryngeal nerve gets damaged during surgery. Also I would need to be on medication for life afterwards. Right now I am not on mediation but at some point I probably will as my thyroxine levels are already low and my body is working hard trying to keep up. Any advice?
I personally would advise FOR the surgery. It’s rare that damage is done to the vocal chords, and your voice will be impacted if your thyroid gets worse.
BUT do research surgeons. Find out what % of their patients have had damage to their vocal chords, how many thyroidectomies they have done, etc.
You definitely should be on meds regardless to help, as you have hashimoto’s. If you haven’t already, please find an endocrinologist asap. You need one to help manage your thyroid issues, with or without a thyroid!!!!
Please keep us updated,
Because it is so similar to my story, I was glad to read Jennifer’s story. Around 8 years ago, I was first told I had a goiter. Because of a family history of Graves disease, I was not surprised.
However, my thyroid studies to this day have always been “normal”. Despite this, I have symptoms of thyroid disease. Despite careful calorie counting and 3 day a week trips to the gym, I’ve unexpectedly gained weight. My nails are brittle, I’m tired, etc etc.
This past fall, I complained to my MD of swelling in my legs. He added a thyroid antibody test to my usual thyroid levels and ordered an ultrasound of my thyroid. Well my antibody test came back extremely elevated. My ultrasound showed a 6 cm left thyroid gland with a 4 cm nodule and multiple small nodules. The right gland is 4 cm with a 1.5 cm nodule. The left nodule was biopsied and returned negative (Yay).
I then had a recommended follow-up with an endocrinologist who explains to me I have Hashimoto’s and questions me about issues swallowing or breathing. Why yes I do always feel like something is stuck in my throat and yes my husband has complained that I am snoring loudly enough to wake him from a dead sleep (I never snored before last year).
Endocrinologist indicated I need to see an ENT surgeon due to the size of the thyroid. I have an appointment to see the ENT surgeon March 2016. I’m pretty positive she’s going to say I need a total thyroidectomy. In researching the surgery, I’ve come across many many horror stories from patients. Its nice to hear positive stories.
As a nurse, I’ve already researched the surgeon and have heard nothing but positive remarks from those that work with her in the OR and nurses that have taken care of her patients. So, though I am nervous about the idea of someone cutting my throat open, I know I will be in good hands.
Thank you again for the positivity.
Update: Well, I had my visit with the ENT surgeon. As expected, I have been scheduled for a total thyroidectomy May 2016. I felt very comfortable with the surgeon and was impressed with how she explained the procedure and aftercare.
YAY!!! Please keep us updated!
I am so glad to have found your positive story as I have been freaking out BIG TIME!
I am 45 and have a multi-nodular thyroid which has been growing in size since I gave birth in 2006. Luckily the nodes I have are benign but my thyroid is massive, apparently 12cm per lobe in size which is monstrous, the anaesthetist said its a celebrity thyroid due to its size! I have no trouble swallowing or sleeping, I do get breathless during hot days particularly now as it’s summer here in NZ and my heart races from time to time, and they’ll be days when my neck feels tight.
After reading testimonials on here and your story I am so happy to get on with it now, in fact, my procedure is on Monday! I’ve decided I’m going to start a youtube channel because life without a thyroid is going to be a learning experience for me which I want to record for myself. I want to make my experience as positive as possible and I know it will be a learning one so hopefully I might help others like quite a few of us who’ve read nothing but bad stories. I actually delayed my surgery after reading a lot of these stories which I regret now.
Thank you for sharing your positive story, I feel really good about going in and getting thise oversized being out of my body, I will miss it but I will make the most of it 😀
I had my surgery last Monday and it was a success! My surgery turned out to be 4hrs and 50mins long due to my thyroid being the size of a premature baby! It was a monster! I spent a day and a half in ICU for breathing monitoring and received the best care!
I’m on levothyroxine and calcium (for four weeks) and I feel fantastic! All four parathyroids were sighted and one was replanted into my SCM muscle.
I am sooooo happy I had the proceedure done!! 😀
WOW SO glad to hear all your parathyroids are there and that you are feeling good. Is it easier to breathe now??
I’m 58 Yrs old. I have nodules on my thyroid. Doctor recommended total thyroidectomy. His office is suppose to put me on the schedule for surgery in April. I’m really scared of what life will be for me after surgery. I’ve read so many horror stories. I’m at odds…I don’t know what to do. Please help.
I am 43 and 1 week post a total thyroidectomy.
Mine was preventing me from swallowing eyc (so much like this bloggers story)
Operation went smoothly
Still a little hoarse and sore throat but i am seeing the good changes little by little. Doctors know what they are doing. Do not be put off by the horror stories. I know of three who have had yhe tt like me and they are going well
Hi Annemarie – thank you for sharing your story!! WOW How are you feeling??
Glad to know you already know others who are living life well post-thyroidectomy. Please check back with us ^_^
Hi Sparky and everyone.
Well its now nearly 1 year since TT. Feeling not to bad. On thyroxin and its working for me. Since the TT, my endo has been able to read my blood work easier. For years i have suffered from irregular periods but scans and BT’s showed nothing. After the TT, my BT showed the levels that are PCOS. Finally a reason and not peri menopausal lol
Now i am just concentrating getting my fitness back and losing the weight. Being insulin resistant and now PCOS its not easy but it is doable. Any questions feel free to ask.
Thank you SO much for the follow up!!!! I am SO glad to hear that your PCOS is now managable. Yay for insulin resistance – my endocrinologist just told me I have to lower my blood sugar. Back to a low carb/high fat diet for me. If you are taking that type of dietary journey, check out http://www.lowcarbkitty.com.
Do a full write up and email it to me so I can post your story in it’s own post! firstname.lastname@example.org 🙂 Sounds like you are doing way better – let’s share your story <3
I’m excited to find this forum because all I was reading were horror stories! I had a TT for Hashimoto’s on 2/17/16 with 5 nodules. I’m currently on Synthroid 112mcg and feeling better. My surgery went smoothly and I recovered without any major problems. The hoarseness lasted only a day and my voice returned to normal.
I will do what it takes to feel my best with combination of meds, exercise, reducing stress and diet. I refuse to give up. I look at Sophia Vegara and Brooke Burke who also had TT and RAI for cancer and they look great. If they can do it it’s possible to look and feel good regardless of celebrity. I was actually glad to see someone else who had a TT .
So far I have had bone and joint pain with some swelling which is greatly improving. I also gained weight, but have been indulging in the food quite a bit and can’t blame it all on Hashimoto’s…lol. I have hope this journey will go well and I do feel my decision was the right one.
Your story sounds EXACTLY LIKE MINE!!! I know, though, that I do have Hashi and have known for years. However, everything else, THE SAME. My doctor I have now has been fantastic with working with me to treat my symptoms, not just numbers.
I just got home from my appointment with her where we decided to schedule to meet with the surgeon. I have many nodules up to 2 cm. My biopsies were negative for cancer.
I have been having trouble swallowing, even breathing, and I have had the ultrasounds, biopsies, swallow study, you name it!! No reason for any of it!! It’s GOT to be my thyroid (which is enlarged and full of the nodules).
I have to say, I found this site and was scrolling seeing many posts from people with Graves or cancer and to find yours, I started to tear up. There is hope to feel good again.
Thank you for sharing!! I really needed this!
This is truly amazing. For years I have known something was wrong with me. My mother had half her thyroid removed in 77 and then the other half had to go in 82. My sister had thyroid cancer, was treated and removed. I am 47 yo and for the past 8-10 years I’ve noticed a significant difference in my energy level, my hair literally falling out, dry skin, brittle nails, hot/cold flashes, severe lethargy. I was told time and time again my levels were fine. About 6 years ago I had a ct scan and found 6 nodules. 3 on each side. I had a biopsy done and was told to check back in a couple years to re-evaluate the size of the nodules. Well about 2years ago I had to be intubated and have had severe breathing problems. had 2 trachea surgeries and finally after a push t my pcp I saw an ENT that finally saw the problem! My thyroid was so enlarged it was wrapping itself around my esophagus!! I couldn’t take a dee breathe for the life of me! I had a total thyroidectomy 6 days ago and am recovering still. But the difference coming out of surgery for my breathing was a miracle to me!! I could actually Breathe!!! I am on a calcium regiment and taking the levothroxine 150 mcg daily now. I have bouts of jitteryness and wondered if anyone else experienced this? is it an adjustment? am I getting to much, too little? my incision is still ery sore but tolerable. I just wondered what I should expect pver the coming months and are there questions from your experience that I should ask my dr? thanks for sharing I don’t feel so alone now! Deborah
Deborah, My Levothyroxine dose has been changed three times since surgery. The first 6 weeks after surgery, I was literally falling asleep in the middle of conversations. I could sleep 15 hours and still feel exhausted. MD upped my dosage and I felt better but still had no energy. Third dosage and I have more energy but not the same as prior to surgery. I can totally relate with the breathing part. I had no idea the amount of breathing and swallowing issues I had been living with until it was removed. It was a wonderful experience being able to lie flat to sleep and swallow without worrying about choking. I will say, I’ve gained 30 lbs since the surgery which I’m not happy about. Make sure you keep your scar covered and out of the sun for at least a year. Once cleared by the surgeon, I used Vitamin E cream on mine and it’s almost invisible (I had surgery last May).