This is for the thyroid cancer warriors all around the world whose stories have not been heard, believed or understood. This man’s advice to the world is raw. It is uncensored. And it needs to be heard.
Written by Pete Harrison
If you ever meet anyone that tells you they had thyroid cancer, do me a solid, and don’t say anything stupid like is that REALLY cancer, or, OH, THAT’S THE GOOD CANCER.
Not only is that some stupid and ignorant stuff to say, it shows a significant and complete NON-UNDERSTANDING of a serious thing, CANCER BEING JUST THE BEGINNING. People who have had total thyroidectomies because they had cancer, as well as people who have thyroid issues at all ARE FIGHTING HEALTH ISSUES ON A DAILY BASIS THAT WOULD BEAT EVEN A 100% HEALTHY PERSON DOWN. I’m talking mental AND physical.
Go ahead and Google ALL THE SHIT WE DEAL WITH EVERY DAY. Not looking for pity or anything, but people, EDUCATE YOURSELVES.
Thyroid cancer is REAL FUCKIN’ CANCER. Mine had spread to lymph nodes already. Not going to re-read and edit this…not in the fuckin’ mood.
I have yet to actually find the right thyroid meds after over a decade. I have no idea what triggered it. I am of the belief that I had thyroid issues long before I was diagnosed.
I found out I had thyroid cancer in December, 2006, after a year of awful anxiety and depression and weight loss. Surgery January, 2007, radiation March of that year, and since then, over 25+ different meds changes, combos, etc., 15+ endo docs, etc., etc.
Misunderstood by EVERYONE around me.
Angered that you don’t see endless TV ads about thyroid issues like you do heart disease, diabetes, etc.
I’m very tired, body sore, and depressed.
Hypothyroid Fun! My last two months, pretty much. Trust me. There are a lot of people with WAY more hypothyroid related issues…
Chronic fatigue
Long recovery period after any activity
Inability to concentrate
Dry skin
Chronic muscle and joint pain
Anxiety
Depression
Panic attacks
Memory loss
Mental sluggishness
Nightmares
I have no answers for myself, let alone anyone else.
Surrounded by people WITHOUT thyroid issues who DON’T GET IT.
Dealing with a medical community that DOESN’T GET IT.
On January 12, 2007, I had a total thyroidectomy due to papillary carcinoma.
This cancer had sneakily already begun to spread to some lymph nodes, so I also got to be radioactive for three days in March, 2007.
I got NO SUPER POWERS from this at ALL.
Rip-off!
Anyway: 2021- Fourteen years cancer-free!
By Pete Harrison, Retired U.S. Air Force Sergeant
READ NEXT: STEP BY STEP THYROID NECK CHECK
I had thyroid cancer at 17 and had Radioactive iodine treatment. I was LITERALLY my chemistry class’ experiment. I got sent home w a Geiger counter and had to keep notes while I was sequestered away from all humanity due to being radioactive. I also did not get super powers and I am still bitter about it now at 36. I am now feeling the major effects of being hypothyroid for close to 20 years. I am using a cane to walk, have trigger finger in both hands, and I don’t have healthcare where I work. Not to mention, NO ONE UNDERSTANDS THE AMOUNT OF PAIN I AM IN. Ahhhhhh the joys of having hypothyroid my ENTIRE LIFE.
Thank you for everything you said here. Being validated that I’m not insane is nice.
You’re not alone Cait. I’m sorry to hear all you have been through. Good to have you here at Hypothyroid Mom.
Thank YOU. I am not on any social media and I haven’t found a community of people who understand what it is like to have thyroid disease so it can feel very isolating… Thank you for giving us a place to feel validated, heard, and no longer alone.
You are not alone Cait and I’m happy to have you here at Hypothyroid Mom. Welcome.
I was diagnosed with thyroid cancer in 2013 age 50 after years of not feeling well presenting with almost the whole list of thyroid related symptoms and was told it was probably pre- menopause symptoms and deal with it. Blood tests always seemed to be “ within normal TSH range” until I told my doctor I feel like someone is choking me all the time. He sent me for ultrasound and I lit up the screen! I too was told “it’s ok it’s the good cancer’ Within a week I had full thyroidectomy and 16 lymph nodes removed 5 of which were cancerous. I had to hold my head up with my hands when they sent me home the second day after surgery because they had dug around in my neck for 4hours and it felt like my head was going to fall off! I was left with a 15cm cut on my neck and numbness and paralysis to one side of my face like I had a stroke for almost 6months. I was left to deal with everything on my own. ( because it’s the good cancer that doesn’t need after care) Did 2 radio iodine stints in hospital isolation to kill off any remaining thyroid particles that the surgery had missed.
Within 6months I was 10kg heavier , weak and fatigued and ended up with clinical depression.
It’s been almost 10 years of constant struggles with joint pain, weight gain, fatigue, poor sleep, brain fog, hair loss/ thinning, dry skin, zero libido ( causing many issues with my husband ) and the list goes on.
What has been the most difficult part of hypothyroidism is that it doesn’t show – like a broken arm etc. so people can’t understand/ empathise or often even believe that you’re suffering from so many things all related to not having a thyroid.
Thank you hypothyroid mom for all your wonderful work, research and positivity , bringing so many of us together. It was discovering your Facebook posts that helped me get through the last few years. I am so grateful that I’m still here despite of all the daily struggles.
God bless.
Dear Stella, Im so sorry you’ve had to go through this horrid thyroid cancer journey. By reading your words its just like ive wrote my last 14 years down. Dr. after Dr. just would not listen to me, it took 5 years ! In 2012 when I was 48 I got diagnosed with stage 2 Follicular Carcinoma Hurtle Cell. In a way I was pleased about that diagnosis as it proved that it wasn’t all in my ‘mind’ that something wasn’t right ! 10 years on I’m battling with trying to feel well.
What really annoys me is that I’ve only ever been offered one medication T4 Levo and that’s it. We most probably wouldn’t be in this situation today if only we had be listed to in the early stages and the medical profession – GPS took it all more seriously !
I hope we can one day feel better. x
Thank you for this post, ive had Hashimoto thyroiditis for over 6 years. Abnormal cells/2″ nodule during my last fine needle biopsy. Surgery on 3/10/21 & told it biopsied as “normal”….3 days later i get a call from the surgeon that cancer was found…back to surgery 3/16/21 for a total thyroidectomy. Just had my radiation treatment this past week. I dont know how im going to go back to work.
I’m sorry to hear this Melissa. Wishing you well for your surgery. Regards, Dana Trentini (aka Hypothyroid Mom)
I finally found you. Someone who understands, knows and lives the real life of a person who has had a TOTAL thyroidectomy, (even partial). Cáncer is cáncer. The effects or “secondary effects” are forever lasting. I had 2 blood transfusions, radiation, suffered chevoxtec syndrome and had a thyroid storm episode. These have affected my quality of life yet doctors don’t recognize the seriousness and the impact this has. The Medical community “CAN’T” Acknowledge this if not Social Security would be swampped. It is called The GOOD Cancer because of the high ratio thyroidectomy has on patients with the benefits of disregard of the patient’s life expectancy thus ignoring our quality of life as well.
Am pleased to know am not alone. Thyroidectomy, 1996.
Great to have you at Hypothyroid Mom, Diana.
I finally found you. Someone who understands, knows and lives the real life of a person who has had a TOTAL thyroidectomy, (even partial). Cáncer is cáncer. The effects or “secondary effects” are forever lasting. I had 2 blood transfusions, radiation, suffered chevoxtec syndrome and had a thyroid storm episode. These have affected my quality of life yet doctors don’t recognize the seriousness and the impact this has. The Medical community “CAN’T” Acknowledge this if not Social Security would be swampped. It is called The GOOD Cancer because of the high ratio thyroidectomy has on patients with the benefits of disregard of the patient’s life expectancy thus ignoring our quality of life as well.
Am pleased to know am not alone.
Thank you for this post. I was also diagnosed with a large mass/tumor on my thyroid. During sugery it was determined that the tumor to be a cancer. The tumor was sent to Sloan Kettering cancer center, and it was determined to be Hurthle cell cancer. I am currently experiencing all of this symptoms tiredness, foggy memory, joint pain, fatigue and more. The doctor visit that had with my local doctor, she stated we need to get my levels under control. She also told me that it a rare type of cancer. Everything I am reading states that Sloan is the place to go?! Any help would be greatly appreciated!!
I’ve had Hypothyroidism since I was born, almost 26 years ago. My mood changes so much it’s crazy. I have anxiety and depression on top of it. In 2020 my health really badly went down. So bad I had to have multiple heart surgery’s. having issues with your Thyroid is no joke.
I’m sorry to hear all you’ve been through, Kayla. You are right. Thyroid disease can seriously impact the body.
Thanks, Handsome Pete.
Had thyroid out Spring 2007.
It’s been rough. At fifty, I’m trying to learn to adjust my thinking and expectations around what I’m capable of doing (which typically isn’t much) and giving myself some grace.
I had my thyroid removed 10 years ago due to cancer was told it’s the good cancer !! Have struggled for years with doctors telling me your levels are fine !! Maybe but l wasn’t !! Tried so many different things and gave struggled with my weight ever since , finally came across acupuncture, has changed my life , she works on my gut health and for the first time in years l feel close to normal
Thank you for sharing. I have a very similar issue. 14 years cancer free! My body never handles having my thyroid removed. I have to get my thyroid medicine changed every 3 to 6 months! When I first got my thyroid removed they push me around from endocrinologist to endocrinologist and no one seem to really know what was going on with me. Turns out they completely suppress my thyroid for almost 3 years and that caused my body to react even worse. I now have several auto immune diseases including rheumatoid arthritis and fibromyalgia. Part of me thinks that having my thyroid out and how they suppressed me caused some of this. I am very unfortunate and the fact that my body does not seem to Except any treatment I have been getting from the rheumatoid arthritis. I have now become severely allergic to many things including medicines and severe food sensitivities. The auto immune diseases have now started causing disability for me and I can no longer work. I was a teacher and I was told I wasn’t a teacher long enough to get disability and I was told from Social Security administration that because I was a teacher I didn’t qualify for their disability. I struggle every day in severe pain and swelling and fatigue and so much more. Something more needs to be done. Thank you for sharing your story.
Leslie, I’m very sorry to read about your struggles. It is a sad state when the medical world seems at a loss for how to help thyroid cancer survivors. I hope to see the day when this changes but until then please know you are not alone. All the best, Dana Trentini (aka Hypothyroid Mom)
Total thyroidectomy due to thyca 2007 after 4 RAI treatments over 2 yrs and suppress TSH for over ten yrs 5 miscarriages and a few thyroid storms I now have fibromyalgia cervical spondylitis ( not convinced of this diagnosis and believe it’s all thyroid related aftermath ) with weight fluctuation ( as soon as not dieting/starving gain very fast ) lots of skin issues depression and brain fog Raymond’s syndrome cold sensitivity fatigue sleep issues not the easy cancer at all ! Constant fear of other cancers ( I also have pocs and poly cystic breast lumpy boobs is no fun )
Thanks for sharing your experiene as it really helps others to know we are not alone. I had mine out May 2020 due to numerous nodules and inconclusive biopsy results.
I can concur with a lot of what you write about. The tiredness can be hard, can have a really productive day with energy then the following day totally exhausted. Life on Roller Coaster springs to mind.
It is good to have you at Hypothyroid Mom, Pauline. I’m happy Pete’s guest article for my site lets you know you are not alone.
Thanks for sharing. I had mine out April 2017 due to numerous nodules and inconclusive biopsy results. Final biopsy was papillary cancer inside nodules on both lobes. Still trying to find optimum levels and docs who will work with me and ndt’s with t3 kickers. Been a rough journey, looking back at miscarriages, exhaustion, mood swings. Being told I have depression, Like YEAH. Someone needed to believe me. Moved to a different state and am starting all over again with finding enlightened physicians.
I’m happy to hear you have found good doctors in your new home state, Barbara. It is a real struggle to find good thyroid doctors which is a big reason why I created Hypothyroid Mom 8 years ago.
Yesss! To all of this! Having to hear “well, at least it’s the easy one to get rid of” and the like (even from medical professionals!!) was so upsetting. There is no good/easy cancer people! And all of the everlasting side effects of meds aren’t correct, ugh. It’s exhausting. Literally.
You’re so right Lee. Good to have you at Hypothyroid Mom.
Thank you!!!!! I went in to have half of my thyroid removed because of lots of nodels in 2008. I had a feeling that something was there and sure enough my surgeon consulted with my family about taking the complete thyroid, which I had already said to take it all if he found anything. This was in February 8, 2015, today is January 13, 2021 and as you said, I f…ing stay tired all the time and between the depression and anxiety I don’t know wether I want to cry or pace the floor!!!! All I can say is that I take it one day at a time!!!!!
Hi Darlene, I hope to see the day when thyroid disease isn’t so challenging for doctors to figure out. You would figure in this day and age they would have this figured out by now. All the best, Dana Trentini (aka Hypothyroid Mom)
I can relate to everything you said I have had a total Thyroidectomy due to cancer and all the things you feel I suffer the same things it’s a great truthful article ,Thankyou for sharing I’m not crazy after all and I know I’m not the only one suffering alone .
Thank you for posting this. I was diagnosed with thyroid cancer on September 2nd and has my thyroid removed on December 4th