Category Archives: Nodules

Jennifer evicted her multi-nodular, Hashimoto’s attacked thyroid

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!

Jennifer

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A Londoner’s Thyroidectomy Story – Hyperactive and Nodules

What was the reason for your thyroidectomy? – Hyperactive thyroid: thyroid nodule
What age were you when your thyroid was removed? – 34
What is your current age? – 36
What is your gender? – Female

Our London friend’s positive post thyroidectomy story!:

At the age of 17 I discovered a lump in my throat: a thyroid nodule. My thyroid was only a bit hyperactive, but doctors recommended an iodine treatment. What a hell my life was afterwards. I got severe hypo and gained massive weight while hardly eating anything. (That’s not great during puberty…) The swing in thyroid levels made me depressed and not knowing that the depression “wasn’t me but purely hormonal driven” was scary.

With thyroxine (thyroid-hormone) I got my life back on track. After 2-3 years doctors asked me to reduce my Thyroxine as my blood levels showed I was slightly hyper. I responded really badly to lowering my medication! For me personally, it’s a detox period of 3-8 weeks in which I was depressed, tired, cold and am gaining weight. This time I knew, though, it was the thyroid hormones playing tricks with me and I could deal with the feelings of being depressed. Still… wasn’t too thrilled about the weight gain. I was thrilled I was off the thyroid medication after a few months, though, and considered myself cured!

However, my nodule came back. The nodule kept growing and growing and doctors decided to put me on Carbimazole (to lower the thyroid hormone levels) to make sure I did not get hyper. They gave me a bit too much and 2 months before my wedding I gained 7 kilos and could all of a sudden not fit in my wedding dress anymore (the one they ordered in a bit too big as they would make it more fitted later). There were quite a lot of tears. Doctors were very sympathetic, changed meds and on my wedding day I had lost it all and looked radiant. (If only losing the weight that quickly would always be so easy!)

During my first pregnancy (no troubles falling pregnant whatsoever, which is fabulous having learned of other stories from thyroid patients!) I was monitored carefully. I seriously have great doctors. The Carbimazole was increased slowly during my pregnancy up to the highest level acceptable during a pregnancy. We agreed that before a second pregnancy, my thyroid had to be removed as by now I was taking too much Carbimazole for a pregnancy. So we did.

I had my complete thyroidectomy a month before I turned 35. I was scared, but the operation was quick and I recovered quickly. Of course, I gained a few kilos after: that’s part of the game playing with your thyroid. By then I was training with a personal trainer who also helped out with a diet (without being hungry) and without losing any weight, I looked the best I ever had.

4-5 Months after the thyroidectomy I fell pregnant (again without any problems). During my pregnancy I had to increase my Thyroxine to quite a high level, but the baby and I were doing great. Now, 8 months post delivery, we’re again slowly reducing my Thyroxine. I am in the middle of such a detox period, but I know I will get through.

Still: it’s a positive story! (My apologies if I am hiding that part a bit). I am glad the thyroid is out as having a thyroid with a complete life of its own and not listening to my body was so tiring also as doctors were less responsive with medication hoping my thyroid would start to pick up a normal rhythm. Now that I don’t have a thyroid, we know we “just” need to balance it with thyroxine. And I’m realistic: for me, increasing thyroid hormone levels is easy (although being hyper isn’t great), lowering thyroid hormone levels is hard for a few weeks (and being hypo even worse).

It’s a balancing game and you need to make sure you’ve got doctors listening to you (and not just looking at your blood-test-results) to help you. There are certain times in life where you need to find the right level of medication, which make you feel all kind of things you might not want to feel (like feeling a patient!). But most of the time, when set at the right levels, I am just me without an unreliable thyroid.

I don’t want to give any advice and am already happy if people enjoy reading my story, but if I am asked to share with you the one thing that made a true difference: After being a thyroid patient for close to 20 years, I have made myself quite knowledgeable about my specific situation, which has given me a sense of control (as much as possible) over my own body, realisation of what’s going on when feeling bad and made me a partner of the doctors when making decisions about my treatment. At the same time, I am trying to keep a good lifestyle with healthy eating and going to the gym to lower the frustration of weight gain when playing with my thyroid. Without all that, the thyroid (or the absence of it) would probably have controlled my life and how I feel too much, which should not be necessary.

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NON Malignant Thyroid Nodules – Might not need a thyroidectomy!!

I got the following email sent to me the other day. It is VERY interesting for those that are doing searches on thyroid nodules. Please always consult with a doctor, but know the options!

If anyone is looking for a less invasive treatment for thyroid nodules instead of a thyroidectomy, I can share an excellent alternative.

I had a thyroid nodule that put pressure on my trachea, causing coughing, difficulty swallowing and pain. My first endocrinologist immediately recommended thyroid removal surgery, despite blood tests showing levels normal, and ultrasound confirming the nodule was benign. I didn’t get it – if the thyroid worked well, why remove the whole gland, why not just remove the nodule? I searched for non-surgical treatments, learned that a more targeted approach, Radiofrequency Ablation (RF), could reduce my thyroid nodule. RF is a well known non-surgical alternative for thyroid nodules in Asia and Europe, but not in the US. In Southern California, UCLA Gonda Diabetes Center seemed to have the most advanced & experienced endocrinology team, so I was hopeful I could reduce the nodule vs cutting out my thyroid.

I was pleased with my second opinion at UCLA, specifically Dr. David Geffner (Endocrinology), and Dr David K Lu (Radiology). They were respectful of my search for an alternative, patient & informative, and the option they recommended was the right, conservative next step for me. Pain was minimal, results were immediate – no sign of a nodule now – and my thyroid is still there!

Perfect for me as I never understood why thyroid removal would be a first step in my case, as my previous endocrinologist had recommended. I’ve been very impressed with my care under my new endocrinologist Dr. David Geffner, and pleased with his referral to Dr. David K Lu in Radiology for my targeted nodule treatment. I had the highest quality care, most advanced expertise and skill, a sophisticated imaging facility at Ronald Reagan Hospital, with excellent assistance & participation of other physicians and technicians under Dr Lu’s direction (UCLA is a teaching hospital).
When I was searching for alternatives, reading blog posts led me to RF and UCLA, so I hope my experience may help someone.

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