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.

Leave a Comment

Filed under Nodules

Trina’s TT story – Thyroidectomy due to Autoimmune Issues

We have a fantastic positive post thyroidectomy due to autoimmune issues story today from Trina!!
Thank you, Trina, for sharing your story!!

  • What was the reason for your thyroidectomy? Chronic signs and symptoms that were autoimmune in nature even though all the possible autoimmune disorders ruled out. Plus, thyroid changes on a repeat ultrasound.
  • What age were you when your thyroid was removed? 43—- I am 1 month post-operation.
  • What is your gender? Female

and most importantly of all, here is her positive post thyroidectomy story!

I had dealt with hypothyroidism since 2010 and was on medication for it prior to ever having surgery. However, I continued to be more and more symptomatic. Being a Registered Nurse, I was able to discuss my issues with my primary care physician in great detail and she sent to me to an Endocrine Surgeon. This was ideal because she had the medical experience of an endocrinologist. Based on my history, ultrasound, presenting signs and symptoms she stated that surgery was an acceptable path to take but if I wanted to wait 6 months and get another ultrasound, I could. We discussed everything in detail as well. I made my decision then and there to take it out. After surgery, the surgeon indicated though my blood work never suggested Hashimoto’s Thyroiditis it was obvious my thyroid was inflamed. She said that it could be a form of thyroiditis that has not been discovered yet. My pathology report came back negative for cancer.

I am one month post-op from a Total Thyroidectomy (TT) and I feel wonderful. My long list of symptoms are almost gone. I am warm for the first time, my hands especially, my hair is not falling out like it was, my nails are growing and look healthy, I sleep better, feeling flu like is gone, and puffiness is gone. Best of all the fatigue is gone! I still have some issues left but they will resolve in time. I have not gained any additional weight since surgery.

Many of the forums can sound like doom and gloom that might make you want to back out. Please, do NOT make your decision based on these forums. You have to look at your individual issue and how it is affecting your life. Those who have a TT for hyperthyroidism most likely will experience weight gain after surgery because they have went from a super charged metabolism to all new low metabolism.

Go into your post-op care educated from reputable sources. You have to be mindful of what your body is telling you. It is also important that you educate yourself on your medication. Understand the prescription (Brand name vs Generic) itself and how to take it. You need to avoid doing things that interfere with the drug absorption to get the optimal benefit from your medication. I am hopeful that I will continue to improve every day.

I do not regret having surgery for one second.

7 Comments

Filed under AutoImmune

“Flip or Flop” Host Diagnosed by Fan

Source Article where below originally appears – reposting

HGTV’s Flip or Flop has loads of fans, but one in particular changed host Tarek El Moussa’s life entirely.

Ryan Read, 31, a registered nurse, was watching a marathon day of season one earlier this year when she noticed a lump on El Moussa’s neck.

“She didn’t want to seem like a crazy fan,” says El Moussa’s wife and co-host, Christina. “Instead of writing to us, she Googled and found the production company and sent an email saying, ‘This is not a joke. I’m a registered nurse. I’ve been watching Flip or Flop. I noticed that the host Tarek has a large nodule on his thyroid, and he needs to have it checked out.’ ”

Tarek, 32, knew something was amiss. “I was having a harder time swallowing, and this lump was getting bigger,” he tells PEOPLE. “I actually went to the doctor twice for it, and they said it’s nothing. So, once I saw [the note from Read], I was like, ‘You know what? I need to get a second opinion.’ ”

An ultrasound initially showed a 5 percent chance of the lump being cancerous. But when the doctors conducted a biopsy on June 12, they realized it was cancer, and the lump had to be removed entirely.

“They said they would remove half of it and be done in an hour,” says Tarek. “But it ended up being four hours, it was cancer, and they ended up removing my entire thyroid. … When I woke up, my wife was crying and the first thing I asked was, ‘It’s cancer, isn’t it?’ And she said, ‘Yeah.’ ”

Flip or Flop Host Tarek El Moussa Battling Thyroid Cancer| Health, TV News
Christina El Moussa and Tarek El Moussa and their daughter Taylor
COURTESY CHRISTINA EL MOUSSA
The bad news didn’t end there. The cancer had spread to his lymph nodes, and he had to undergo radioactive iodine therapy, which meant he had to be isolated from his family for their protection.

“It was a nightmare,” he says. “They stay in a different bedroom, and I can’t stay with my daughter for more than a few minutes at a time. She wanted to hug me and watch TV every night and give kisses, and we couldn’t do that.”

Last Friday, Tarek did get some good news. “I was told that the cancer didn’t spread beyond my neck,” he says. “I’m hopeful now. We’re filming a bunch of episodes and going on with life as best we can.”

Tarek and Christina will discuss their battle with cancer Thursday on an episode of the syndicated talk show The Doctors.

Tarek will find out in the next week if he is cancer free, but he has already learned plenty from the experience. “I’ve always been very work, work, work,” he says. “So, I stepped back and re-evaluated what I wanted, like spending time with my family and all that good stuff.”

3 Comments

Filed under Thyroid Cancer

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.

Leave a Comment

Filed under Nodules

Q&A – Post Thyroidectomy Depression

Happy Holidays! The holidays often bring about situational depression for many people. Losing your thyroid also leads to depression – don’t let post thyroidectomy depression sneak up on you and affect your life!

Here is a letter from someone that is suffering from Post Thyroidectomy Depression:
“Hey, congrats from one cancer survivor to another! I just stumbled upon your blog when I was googling about thyroidectemys. I had one a week ago and im worried about the outcome of it… My dr. removed my whole thyroid because of a pesky nodule. I was just wondering if you suffered from severe depression before or after the surgery? And I see you are over a year away from your thyroidectemy, I just would like to know, from another fighter, tberes a light at the end of the tunnel… feel pretty hopeless right now.”

My Answer:
I had severe depression before my thyroidectomy, but since the thyroidectomy it’s been quite a ride!!
I just passed my two year anniversary (wow!).

I have found that the #1 thing to keep in mind is paying super close attention to your moods. If you don’t normally suffer from depression, then feeling blue/depressed/hopeless is a strong indicator that your thyroid levels are too low. It’s only been a week for you, if I am reading correctly. You just had a MAJOR surgery, and lost a critical gland that controls everything from metabolism to moods.

If you have not had pre-existing depression, it could be depression from a major life change (situational) as well as depression related to low thyroid levels (biological). Give yourself a few weeks on your current dosage and if you still feel depressed, contact your endocrinologist right away. DO NOT let yourself suffer OR let it ‘creep up on you’ (very common). Keep a journal where every night you write down how you felt that day. If you see a trend of sadness/loneliness/hopelessness, please contact your doctor immediately!!!

If you had pre-existing depression, you might need to change up how that is being managed (ie different medications, etc). I ended up halving my current anti depressant since we run my thyroid levels high, and I am on cytomel (a thyroid hormone replacement) which helps with depression. I tried being on just synthroid and went bonkers. I became downright scary and scared my doctor with my crazy person emails! It’s funny now I look back on it but it was NOT funny or OK at the time.

So if you are already on anti depressants, please meet with the doctor that prescribed them to you (preferably before the thyroidectomy) to discuss, and keep a very close eye on how you feel (mentally and physically)!

Leave a Comment

Filed under Q&A

Q&A – Post Thyroidectomy Breathing

I get many emails from people with questions about living a life without a thyroid (such as post thyroidectomy breathing concerns), or what the thyroidectomy process is like. I figured it might be helpful if I made the questions and answers public (redacting the person’s information, of course) so others may find answers to their questions. Please click here if you would like to send me an email or share your positive post thyroidectomy story!

“Hi there ! I found your blog while trying to find something positive to read about having a total thyroidectomy. I am in Ottawa, Canada, and was diagnosed with papillary thydroid cancer. My surgery will be on January 2…You mentioned that it was difficult to breathe when you woke up from surgery – this has me quite worried. How long did the sensation last?”

My response:
It is a little difficult to breathe when you first wake up because you have a breathing tube inserted, so when you wake up it’s a VERY strange sensation! Also, you may have the ‘where am I, what is going on’ sensation. The nurse will immediately come over and take it out the breathing tube. In some hospitals, it might already be out and someone is actively waking you up. It’s important to stay calm (I started to panic which made it worse, as I was not expecting this). So if you are worried that panicking when you wake up is a concern, start fortifying your brain into knowing you should NOT PANIC when waking up after the surgery.
triball
I had shortness of breathe during the evening of the surgery. The nurses made me blow into a little device (called a TriBall – it has three balls in it) to strengthen my breathing. When you blow hard enough, the little balls rise up. I hated it and was tired, but I did as told. Your throat will be sore and your neck will be swollen, but otherwise you should not have any issues breathing.

2 Comments

Filed under Q&A

The Joy of Medical Bills

One major outcome of having thyroid cancer or a thyroidectomy is the joy of medical bills. Not only will you get over run with medical bills while you are exhausted and recovering, they will become a constant part of your life as you move forward with follow up appointments, blood work and medication.

So many medical bills, so little money

So many medical bills, so little money

My advice is to start a spreadsheet as soon as possible. Document EVERY medical bill, including the date, account number, amount, and when you paid (and how much you paid).

Trust me when I say this – the medical industry will send you to collections almost immediately. I had bills go to collections that I never even seen.
After a thyroidectomy, your memory might get impacted (a common side effect). The first six months, I felt like I lived in a haze. Thankfully, I kept a detailed spreadsheet of all teh bills and statuses.

Sadly, there will most likely be times when you have to call and dispute/discuss the bills. TAKE VERY CLEAR NOTES of who you talked to, when you talked to them and the outcome of that conversion in your spreadsheet.

Don’t be afraid to ask WHY you got that bill. Sometimes bloodwork, for example, will be sent out to a lab. So you will get bills from places you’ve never been to or heard of.
You will also need to keep track of your insurance and document those conversations.

If you have a loved one with limitless patience, see if they can help handle this on your behalf. The worst part of my recovery was dealing with the medical bills.

Create a system, start a spreadsheet, and digitize copies of your bills so you have easy access in the event you need to email them.

Any additional tips and tricks on managing medical bills after a thyroidectomy?

Leave a Comment

Filed under Medical Bills

LC’s Story: Rad AND Rad-ioactive – Thyroidectomy and Radioactive Iodine

Sometimes having something so small taken away doesn’t seem like the most extreme thing, until you realize after it’s gone just HOW important it was.linda

It started in December 2010 when what I thought was a cold just wouldn’t go away. From there it turned into a cough that just lingered for months. Every month I was at the doctors, urgent care or ER with the same issue; no amount of antibiotics, cough meds/suppressants, allergy pills or post nasal drips were helping at all.

In May of 2011, after being seen in the ER, the doctor had asked why I haven’t been referred to an ENT at this point. So there was the recommendation (with HMO there’s nothing like waiting). Late May was my first visit to the ENT, who felt a lump in the middle of my throat and asked how long have I had the lump. I don’t really know, I’ve never noticed it before, but the more he made me feel it, the more I wondered just how long has that thing been there?!

In June I was scheduled for an ultrasound that came back not looking so clear and off I went for a biopsy.
Those biopsies, they never tell you just how uncomfortable they’re going to be or how my eyes wouldn’t stop watering afterwards or how my throat would feel like it was a swollen football and I wouldn’t be able to talk.

My ENT doctor, bless his soul, must have been the nicest man when he had to deliver the news; the words will forever be in my head almost like a marriage proposal. “LC, I want to make sure you understand and listen to what I’m about to tell you. You’re biopsy came back and the nodule that has grown on the outside of your thyroid has tested Stage 1 cancer”.

“WHAT?!?!?!?!?!CANCER!!!!!!!” Of course the hysterics hit once you hear those words, it’s like a movie in slow motion “Yoooooouuuuuuuu haaaaaaveeee Caaaaaaaannnnnnccccceeeerrrrrrr”. Right?!

After the water poured out of my eyes and my ears were no longer muffled, I could hear him speaking again. “It’s going to be OKAY! It’s only Stage 1, we’ve caught it in time, these are our options: 1) we go in and remove the nodule and send it for testing, but if it does come back that the cancer has spread to your thyroid then we will have to go back in for another surgery to remove the whole thing or 2) we remove everything, you’re on thyroid meds for the rest of your life and that’s that”. Well those two very wonderful choices left me speechless, powerless and most of all in shock. I asked “Doc, what would YOU do, I mean if it was You or your daughter or your wife, what would you do?!?!”

He had the most gentle voice and understanding spirit “LC, I’d remove the whole thing because I wouldn’t want to take any chances, but it’s not me – it’s you and I need you to go home discuss this with you’re family and call me to let me know what you want to do, I will be doing the surgery either way and no matter what I won’t let you down, You’re going to be just fine“.

Well the options weren’t really options at all; I’ve got a 50/50 so let’s just go all the way and take the whole thing out so I don’t have to deal with it again. Things are explained so differently and understood in a different nature and language when the word Cancer is attached to it. What you hear is it’s just a gland, you don’t really need it, there’s meds for it, it weighs about an ounce and it’s the shape of a butterfly. Huh…who knew. But in reality the meaning of that tiny little one ounce butterfly gland is…Controls your Weight, Skin, Hair, Nails, Mood, Weight (oh did I mention that already), Energy, Metabolism, Weight – Oh YES your WEIGHT! Being female, this weight thing is actually an important factor in life, being a female over 40 it’s a great big factor in life. Don’t be so quick to just fly away there little butterfly, turns out you’re actually a main factor in my equation. But ALL That, I didn’t hear, all you heard was Cancer and at that point I just wanted it all gone.

September 2011 I had a total thyroidectomy, a lot of ice cream, my venti iced nonfat vanilla latte the day after surgery and a crazy amount of rest. Two weeks after surgery my follow up and removal of stitches came so there I went to my wonderful Doctor/Surgeon just waiting to have my bandages off and get back to my life again. As my sister watched in awe as the doctor snipped and clipped, I just couldn’t wait to move my neck around and see my scar. Then he sat back and said how beautiful it was going to be, it was not going to be noticeable at all and there was some things in my chart he wanted to go over.

Then it all began like this “LC, I received the results back from what was taken and it seems that the cancer has spread to your left lymph node“. Again ——————- WHAT?!?!?!?!?!?!?!?!?!

I don’t really know what he said after that, since my ears muffled and my eyes wouldn’t stop watering, so it was left to my sister to hear everything that was going on through her own tears. After sometime all I heard was we are going to treat this with Radioactive Iodine (RAI) and do a body scan. I’m going to be “Radio Active”?!?!?!?!

With the conversation going “it’s only 3 days and do you have a beach house to stay in perhaps?” A beach house?!?! Really?!?! No I don’t. Because I’m going to have to stay somewhere isolated for 3 days and it’s going to require some extra measures on my part.

There was a time that came that I really “Lost It” – the Biohazard Ward at the hospital when they explained all the details that involved the RAI treatment, like being contaminated and isolated for 8 days. EIGHT DAYS?!?!?!?! WTH! What happened to 3?! Well, the 3 is when you’re completely and ridiculously radioactive; the other 5 are when it’s leaving your system and extra precaution. That’s when the time came that I just got up, walked out and said “Forget it – I’m NOT doing this!” Leaving my parents there to apologize that their daughter is delirious and under a lot of stress. Two weeks later we tried it again, this time my parents called for backup and made my sister go with us, to be the watch guard. No contact for 8 days…

November 2011 was the day I actually became my super hero alter ego “Wonder Woman”, becoming radioactive, but no – my pee didn’t light up or become a beacon in the night, I was just an average person calling in for Starbucks orders to be left at my door and magazines to be dropped off when my sister took her lunch break. It was the longest 8 days I can remember…My kids brought my dog to wave to me from the car as I looked out the window and my boyfriend would stay on the phone with me when he was outside to try and make me laugh. But it finally ended the day before Thanksgiving and at Thanksgiving dinner my sister got the scissors out and cut off my hospital wrist band.

Mid 2012 I tattooed the biohazard symbol, the exact one from that wristband, on the inside of my right wrist as a symbol of strength, growth and never giving up. It reminds me everyday that no matter what I thought I’d never get through, I did. It reminds me that I am a Wonder Woman and I will always fight the fight.

There have been bumps in the road: weight gain, hair and nails are thinner, my metabolism is wacky, my crazy isn’t always in check and no matter what dosage of thyroid meds you’re on it just isn’t the same as that little butterfly gland some of us didn’t know was so important. I’ve fought through weight gain AND it has been a struggle, I can say that after gaining 40 pounds from my RAI and unbalanced meds, I’ve lost 18 and have been able to keep that off. I still have watchful eyes for another 3 years, but I don’t mind as long as nothing spreads or grows. It’s been a tough road but you finally realize it’s your battle and the only one that can be persistent enough to win it is — YOU!

Don’t Ever give Up and no matter what the doctors say, listen to your body it tells you things ONLY you can hear. If I wasn’t so persistent in going back and forth and fighting for what I knew was wrong, my cancer would have never been detected or would have been caught and Lord only knows what stage it would have landed me in or other damage it would have wreaked havoc on. I didn’t take anything less and I changed my life, you can too.

If you want to read more about (and by) LC, please check out her blog at EZBlu.blogspot.com.

For some of us our little butterfly has left, but it doesn’t mean we can’t grow our own wings and fly.

4 Comments

Filed under Thyroid Cancer

My Two Year Check In

So it’s been almost two years now. Got my cancer marker blood results back the other week and the doctor said they looked great, albeit iron and Vitamin D deficient. As my Dad says, who isn’t deficient in those?

My thyroid hormone levels are also super high but as my poor endocrinologist has found out, if we drop them I turn into a crazy, suicidal, depressed wacko. So between my high meds and my low carb diet, I’m doing pretty well mentally.

Got the ultrasound yesterday. Now, it’s not as bad as needles but I am still sensitive about things being near my neck, and a half hour (or was it a billion hours?) of lying on my back with someone pressing hard against my neck was pretty rough. The technician let me have several breather breaks to get through it.

Doctor gets back to me and says my ultrasound results are “reassuring”. REASSURING? WHAT?? Sigh. Oh well, better than NOT reassuring, right? I asked for some more information on what ‘reassuring’ means, but I feel pretty ‘reassured’ between the ultrasound and the blood results.

Yeah, two years in, three more years of check ups to go!

1 Comment

Filed under Thyroid Cancer

A Chaplain’s Thyroidectomy – First Chapter in his Journey

I am still in the middle of this. I am a 50 year-old male who is active, competing in 5K and 10K races over the past twenty years or so. I participated in a Sprint Triathlon in April 2013. I plan to do another in 2014. I tell people that the thyroid thing has pretty much been a non-event for me, an inconvenience at most. My wife disagrees. But, it is really how I feel. It has taken three days from me and forced me to take a week off of work; because my boss pretty much insisted.

I am a corporate chaplain for four companies and see approximately 500 people per week. My hours are somewhat flexible and I love what I do. I look forward to going to work every day. I love to see the folks I get to serve. Currently, I only have one early morning per week (get up at 4:00 AM on site by 6:00AM); the rest of the week I don’t start until 9:00 AM. One night, I work until 10:00 PM. I have not shared my diagnosis or surgery with any of them because it is my job to serve them and help them through these types of things. If I start to share, it becomes about me. I am sure there will come a time that sharing my story with someone will be helpful to them; but that hasn’t happened yet. I have been able to hide my scar with high neck crew t-shirts (a big jump after 30 years of low v-necks). I usually wear button down collars; so, often the t-shirt doesn’t even show.

My thyroid was partially removed for nodules 7/12/2013. The doc removed the isthmus and most of the right side. First surgery was a breeze. Surgery started at 6:00 pm; out by 9:00 PM; home by 10:00 pm; back to work on Monday. Pain killers on Saturday and Sunday and at night before bed on Monday and Tuesday.

I had the rest of the thyroid removed due to papillary carcinoma on Friday, 8/23/2013. The second surgery had some complications due to a lot of lymph nodes. I needed a drain in my neck and had to stay in the hospital until Sunday, 8/25, due to calcium levels. I took pain killers in the hospital over the weekend and one on Monday. The attending physician only prescribed half the dose of pain killers as the first time. They took the edge off and I was OK.

If not for the drain, I could have gone back to work on Monday. I am still doing everything I can, work-wise, from home. I walked the quater-mile to the grocery store and back on Monday. My 68 year-old mother cut my grass on Monday because the doc said light duty for two weeks.

I went to the doc on Wednesday, 8/28, to have the drain out. The doc had received the pathology – no cancer in the left side, 3 out of 21 lymph nodes malignant. He pulled the drain and released me to cut the grass next week. My energy levels are as good or better than before the surgery.

I saw the endocrinologist yesterday. That was a blessing. I received a call from the scheduler at 1:30. She explained that she was just given instructions to set me up with the endocrinologist and when she looked at the schedule, there was an appointment that just opened up at 2:00. She asked if I could make it. Of course I could. The doc was surprised too. She said she had looked at her schedule and didn’t have any openings until November. She looked at my chart, made some calculations and upped my Synthroid dose, which I went on in the hospital. We also set up the RAI treatment plan – which starts when I get back from a vacation I have planned in September.

My treatment for RAI will be:
Week 1 – Go off Synthroid, go on Cytomel
Week 2 – Low iodine diet starts
Week 3 – Stop Cytomel
Week 4 – Start getting labs done
When TSH is above 30 call for treatment which will be administered 1.5 days later
2 Days after dose – stop Low iodine diet, resume Synthroid and Cytomel (for two weeks only)
7-10 Days after dose – Thyroid Whole Body Scan

I should be done before Thanksgiving.

I hope this was helpful and that your experience is as good or better than mine.

Blessings,
Bill C.
Chaplain

Leave a Comment

Filed under Thyroid Cancer